“Public Body Behavioural Policies Discriminate Against Autistics”

 Let me start by saying, that I believe the policies in question, are being widely misused against any complainant that public bodies want to fob-off.  This is so, because in the UK there is a cover-up culture among the public sector and arbitrary labelling is used to deflect complainants, they can simply claim that a complainant’s behaviour is unreasonable, or vexatious.  And once labelled so, it’s on record and gives them carte blanche to ignore you or treat you a particular way.  They also disseminate this labelling of you to other bodies.

In law, being vexatious means…

“denoting an action or the bringer of an action that is brought without sufficient grounds for winning, purely to cause annoyance to the defendant.”

But in general terms…

“causing or tending to cause annoyance, frustration, or worry.”

Well anyone can say anything annoys them and what annoys one person won’t annoy another.  There are many variables that affect such an emotion.  This terminology is in widespread misuse against valid complainants, who are shocked and outraged at wrongful outcomes when they submit complaints.  Where the complaint handler opines what evidence means or shows, distorts events and reaches an unjust conclusion.  The NHS is a prime example of how badly public bodies are handing complaints, how there is a culture of denying, defending, diminishing, delaying and dismissing complainants.  So of course, any reasonable person will persist for at least some time, in seeking justice and remedy if the outcome of a complaint wasn’t what it should be, unless they are too exhausted with it all.  Sometimes, they don’t have a choice but to persist however, for instance if it is detrimentally affecting their health care.  And what about the emotional state of the complainant who has been poorly treated!  Annoyed is likely to be an understatement in that regard.

Specific policies have sprung up from public bodies on how to deal with vexatious complainants.  Google “vexatious complainant” and you will see hundreds of public body policies for such alleged complainants.  As an example, here is the Local Government Ombudsman’s (LGO):

“This guidance covers ‘unreasonable complainant behaviour’, which may include one or two isolated incidents, as well as ‘unreasonably persistent behaviour”

“Examples of Unreasonable Actions and Behaviour” (a relevant selection from their list)

• Introducing trivial or irrelevant new information at a later stage.

• Adopting a ‘scatter gun’ approach: pursuing parallel complaints on the same issue with various organisations.

• Making excessive demands on the time and resources of staff with lengthy phone calls, emails to numerous council staff, or detailed letters every few days, and expecting immediate responses.

• Refusing to accept the decision; repeatedly arguing points with no new evidence.

Autistics usually have a very strong need for justice.  And often tending to research their options, as well as being rule-bound, autistics will perhaps be more inclined to utilise complaints procedures in the first place – that’s what they are there for isn’t it? They also frequently suffer processing delays and certain things might not occur to them at the time, they may have a delayed realisation.  They are also not infrequently verbose in communication, because a trait of the condition means paying attention to detail.  So the above descriptions of behaviour that is purportedly vexatious, are exceedingly unfair on and discriminatory towards autistics, who may submit complaint information and evidence in a broken and detailed manner and who may persist longer than others in seeking justice.

An autistic won’t necessarily know or accept that they are ‘flogging a dead horse’.  And considering the pass the parcel games between regulatory bodies et al, if one organisation is not listening it would be logical for an autistic to approach another.  In 2014 the BBC reported that there “are more than 70 organisations are involved in dealing with complaints about the NHS and social care” which is confusing for anyone, but probably even more so for an autistic, who might therefore submit their complaint to any that seems relevant, being literal an’ all. Let’s be clear, we are not talking about frivolous complaints, we are talking about valid complaints, so they really aren’t being unreasonable in any way, they are doing the right thing in their own communication-style.  The injustice of a wrongful outcome may feel so monumental to an autistic that they use their typically logical approach, in going back to the body repeatedly, to explain why it was wrong, to get them to understand.  And their communication-style in doing so, is being criticised.

All the body has to do to get rid of them is to label them vexatious and unreasonable, which they can decide at a whim if they don’t like someone challenging their decision ~ and cut-off communication.

These policies were supposedly written to help bodies deal with frivolous complainants that really don’t behave reasonably and don’t have valid complaints, but in reality they are simply being misused and were most likely written as part of the whitewash culture that exists among public bodies.  Probably so many people did not want to give up when faced with a blatantly wrong decision, that they had to find a way to manage these people away quickly.  How can a different behaviour-style or communication approach be classed as unreasonable, when it is a natural consequence of a neurology that constitutes a disability in law?  It can’t is the short answer.

The trouble is therefore two-fold, misuse of policies for starters, but the main point of this post is that the policies themselves are discriminatory towards autistics.  And may be being used far more towards autistics, than others.

And it’s against the law!

https://www.citizensadvice.org.uk/law-and-courts/discrimination/what-are-the-different-types-of-discrimination/indirect-discrimination/

“What’s indirect discrimination?

The law which says you mustn’t be discriminated against is called the Equality Act 2010. Discrimination which is against the Equality Act is unlawful. This means you can take action in the civil courts.

Indirect discrimination is when there’s a practice, policy or rule which applies to everyone in the same way, but it has a worse effect on some people than others. The Equality Act says it puts you at a particular disadvantage.”

The behaviours they list in these policies arise directly out of the protected characteristics of autism spectrum disorder.  ASD has communication deficits, but it’s more than that, our neurology is different, we process differently and our social experience and understanding is different.

Would they have a policy about someone in a wheelchair behaving a certain way because they couldn’t walk?  Or a blind person?  Of course not.

Therefore it is apparent that such behavioural policies are unlawful and wide open to challenge in a court of law.

Public bodies be warned!

 

“Autism: Perceiving Maturity”

I have noticed how autistics can mistakenly be perceived by others as “mature”, despite the fact that they are almost always chronologically older, than their actual emotional maturity and awareness and until they have been around longer than others, often not street-wise and are likely to struggle to understand things their neurotypical peers find instinctive.  Maturity means experience in life, learning from those experiences, gaining wisdom from those experiences and presenting a somewhat “sensible” face to the world and more than might be expected for your age.

Autistics often hold back when in social situations, they may struggle to know what to say or when to say it, or have plenty to say a-la-monologue, but be scared to start, having had adverse reactions in the past. They may have social phobia, or be shy.  They are very likely to behave atypically, is the bottom line.  Many, especially females, will attempt to mimic peers to “fit in”, but with something being slightly ‘off’.  Many autistics have a strong moral compass, or a phobia of everyday things, or a confusion over why other people behave and communicate the way they do.  So the autistic is likely to be reserved, to hold back.  This can present an image of seriousness, they may also be studious which will add to this ~ a geeky type.  To others, this comes across as “mature”.  A teenage autistic girl for instance, is unlikely to be gossiping (even if she makes a brave effort to join in, because autistics usually struggle with small talk and don’t see the point in talking about what others are doing salaciously), talking about parties and boyfriends or plastered in make-up and rolling her skirt up so high that it barely covers her underwear.  Not unless she has taken mimicking to the extreme anyway.  This will stand her out from neurotypical peers.  The absence of what are seen as the “typical” behaviours of peers, makes the autistic appear sensible and mature.

It’s frustrating that neurotypical observers make such assumptions about autistics.  I always say, autistics might do (or appear to) the same things as neurotypicals, but for very different reasons.  Autistics struggle to predict and usually take others at face value.  Whereas neurotypicals seem to have a radar for judging what is likely to happen and to analyse the words and actions of others.  Trouble is, this means they project ~ and this rarely works on an autistic!

So this reminds me again, how little autism awareness there is.  Autistics struggle to survive in a largely neurotypical world, we try to learn what neurotypicals mean by what they say and do.  But neurotypicals seem to think they’ve got the t-shirt already and apply their belief-system based on their way of thinking, to autistics.  Autistics are the minority, we think differently, we often behave differently.  Some have likened it to neurotypicals being Windows (for instance) and autistics being Linux ~ we are on different operating systems.

They say “never judge a book by it’s cover” but autistics are misjudged that way all the time, by the neurotypical tick-box.  This affects everything.  From schools thinking an autistic child is in no difficulty because they are masking and mimicking, to professionals wrongly judging families/parenting by the neurotypical tick-box, to every single interaction an autistic has with neurotypical people.

If I could explain to a neurotypical the way my mind works, I would.  I doubt I could though.  All I know, is that from as early as I can remember, I found others strange and wondered why they behaved the way they do and said the things they said.  I never felt I fitted in.  It’s a very deep level of difference.  So to all neurotypicals out there, if you happen to know someone is autistic, don’t ever assume ~ and if they don’t mind talking about their autism, why not ask them things to see what their perspective or reasoning is.  Even hearing the answers won’t tell you what it’s like to exist as an autistic, it will be just the tiniest sliver of their processing that won’t even amount to a clue.  But it might challenge the way you think and make the world that little bit easier for autistics.

“Autistic Imagination”

What is imagination?  It’s the ability to think up scenarios, settings, possibilities and things.  Autistics are completely able to do this – yet the myth persists that autism means impaired or absent imagination. There has been a grave misunderstanding of the fact that it’s social imagination that is impaired.  Social imagination is basically the ability to empathise with others and predict their intentions.  It has nothing to do with the rich internal mind of the individual.  Social imagination deficits are of course an impairment, this deficit is what makes autistics struggle socially, in friendships, communication and keeping themselves safe.

Simply because an autistic may not display the presence of their imagination in a way that is considered “typical”, does not mean they do not possess one!  Often absence of pretend play is cited as lacking imagination and therefore an autistic trait.  But what if they are looking at it the wrong way?

When a child with autism is spinning wheels or lining toys up, who knows what is going on in their mind?  They may be displaying high intelligence and organisational skills, working out how to perfect the alignment of the row of boxes (tomorrow’s draughtsman) or simply stimming by looking at the wheels.  Hyperfocus on an interesting or pleasurable activity is not evidence of lack of imagination (whilst it may appear rigid, why is it that so many autistics are perfectionists and pay attention to detail – spending a long time doing one thing, could be viewed as a productive use of imagination).  In research, what is seen as an impairment, could be a characteristic that will be useful to that individual in their career or interests later on in life.

“Creativity and Imagination in Autism and Asperger Syndrome” (1999)

https://link.springer.com/article/10.1023/A%3A1022163403479

“Three studies are reported that address the often described impoverished creativity in autism. Using the Torrance Creativity Tests, Experiment found that children with autism and Asperger syndrome (AS) showed impairments. Experiment tested two explanations of these results: the executive dysfunction and the imagination deficit hypotheses. Results supported both hypotheses.”

“Exploring the Nature of the Imagination Deficit in Children with High Functioning Autism: A New Approach”

https://search.proquest.com/openview/2344830302873e08ea1bbfba9e052534/1?pq-origsite=gscholar&cbl=2026366&diss=y

“The thesis concludes that whilst some difficulties in imagination are evident in high functioning autism, this deficit is not absolute.”

“Autism and the Imaginative Mind”

http://www.britishacademypublications.com/view/10.5871/bacad/9780197264195.001.0001/upso-9780197264195-chapter-13

“These symptoms gave rise to the assumption that autism impairs imagination. Symptoms consistent with this view are prominent throughout the clinical and research profile of Autism Spectrum Disorders (ASD). However, some individuals diagnosed with autism exhibit excellent gifts in the field of creative imagination such as in arts, music, and poetry. Some of these personages who suffered from autism include Samuel Beckett, Albert Einstein, Andy Warhol, and Ludwig Wittgenstein.”

As the last link above shows, there is no lack of creative autistics.  Look at Temple Grandin, if she showed no imagination how could she have thought up equipment solutions to cattle handling?  Beethoven is now thought to have been autistic – how did he think up his musical compositions without a great imagination?  This parent describes the wonderful imagination of her autistic son:

“My Child With Autism’s Imaginary World Is as Vivid as the Real One”

http://www.huffingtonpost.ca/kathleen-oagrady/a-magical-thing-happened-_b_7397766.html

“It’s often said that kids with autism don’t have an imagination or, in the more nuanced books on the topic, lack “imaginary play.” I’ve never found this to be the case with any of the kids I’ve seen on the spectrum. In fact, I’d argue the reverse from my parenting perspective. I think kids on the spectrum often have such vivid powers of imagination that the “real world” has difficulty competing.”

“Autistic people are more creative than you might think”

http://theconversation.com/autistic-people-are-more-creative-than-you-might-think-46107

“Autism is commonly, if mistakenly, associated more with logical thinking than creative expression. But new research suggests we might need to rethink our views on creativity and autism.

The criteria we use to diagnose autism have long made reference to the fact that autistic imagination appears to be limited, and this trait is used as a way of detecting the condition. Yet in reality we still see many extremely creative autistic people.

This paradox led researchers at the universities of East Anglia and Stirling to study creativity and autistic traits in a large group of both autistic and non-autistic individuals.

The authors found that individuals with higher levels of autistic traits made fewer suggestions than those with lower levels of autistic traits. Surprisingly, however, the suggestions from those with higher levels of traits had greater originality. It seems that being on the autistic spectrum is associated with being able to generate suggestions that were more creative.”

So maybe autistic imagination is in fact more worthwhile and useful, than that of the average person, as it results in solutions and great artistry!

Autistics are also known for inventing neologisms, especially as children, before being forced to comply with being the same as everyone else takes over their functioning and makes them lose the characteristic.  To think up neologisms, involves plenty of imagination.  Words may be thought up based on the item or object reminding them of something, or appearing to need to be associated with a particular sound (this is where we also might overlap into the world of synaesthesia) that they want to create their own appropriate word for.

There are quite a few actors and singers on the autistic spectrum (Dan Aykroyd, Vincent D’Onofrio, Craig Nicholls, Gary Numan, Daryl Hannah, Courtney Love and Susan Boyle to name just a few) and to do those jobs you have to have creativity and imagination.

Yes, autism means deficits, struggles and difficulties – we cannot deny it is disabling.  But it must also be understood that many autistics also have skills and talents and the parts of us that are positives and benefits (or simply normal, but different) should not be misrepresented as ‘missing’ or defective.  There are enough problems with myths and stereotypes around autism, resulting in widespread discrimination as to our capabilities and capacity resulting in shocking human rights abuses.  It’s time for change.

“Having a Meltdown in my Head”

There are times when I have a meltdown in my head.  It’s hard to describe the feeling, I kind of internalise the meltdown and run it like a film in my head.  Of what I truly need to do – but can’t.  A film, running with me screaming my head off, ranting out all the words I want to yell at the situation or person.  Imagining it like an alternate universe scenario.

I am having one right now.  Wow, how can I type up a blog post and meltdown at the same time, you might wonder.  I wish I knew.  It’s a horrible feeling.  Containing this humungous explosion that really, really needs to come out.  I always was the passive autistic sub-type.  The internalising type.  There is some crap in life however, that makes it so hard to remain passive.

Like when the system is so obstructive, so resistant, so customer unfriendly and unhelpful, that just keeping an autistic child managing, just coping, becomes impossible.  There is no autism awareness.  There is no putting the wellbeing of special needs children first, no caring that the family are the ones suffering as a result.  Never mind supporting autistic parents by simply making reasonable adjustments and doing what they can to help a situation.

Inside my head, I’m crying.  I’m raging big-time.  There are a fair few ‘F words’ flying.  The average special needs parent will feel such frustration on a regular basis of course.  Imagine being autistic though and restraining a meltdown in that situation.  A meltdown is a loss of control.  Imagine masking that.  Because you know that if you allow it out, those very professionals who are obstructing and resisting complying with the law; being flexible and actually doing their job properly, would use it against you in a heartbeat.  You would be labelled as mentally unstable and aggressive, the consequences of that could of course be huge.    As a parent, my own needs and difficulties must be suppressed.

So I fight it.  I fight it with everything I have.  I try to ride this feeling of compulsion, like someone with Tourettes trying to restrain their tics.  Like a mega “premonitory urge” before the tic comes.  Imagine sitting on that.  I feel like I want to burst.  Something’s gotta give of course, so in the end, of course I will just cry.  Cry at the injustice of it all.  Cry that so-called “professionals” can be so cruel without a second thought.  Cry that I’m forced into fighting the system when it’s the last thing I want or need.  Cry that as an autistic, I can’t be myself, I have to pretend the whole time.  I have to force myself into being a robot for the sake of society and ‘the system’ and what it deems ‘acceptable’.  I’m living a lie.  But I don’t have a choice.

This mask has become so heavy, it’s almost crushing me.

“The Damaging Snowball Effect of Professionals’ Words”

Sometimes you get a sense of something being up with peoples’ reactions to you, without knowing what or why.  As a special needs parent you need to deal with a host of professionals along the way, going through assessment to diagnosis, getting your child’s educational needs met and potentially, ongoing health issues.  For an autistic parent this can be a veritable minefield.

Parents want to work in partnership with professionals, they want their expertise on their child respected, they want to be listened to and respected as equals.  You’d think professionals would be willing to offer this partnership working, it’s in the best interests of the child, as well as all concerned – isn’t it?

It may be when comments are made towards you, or you read a report stating that ‘mum’ is this, that or the other’ and you feel a burning sense of injustice and confusion.  It may be that nothing is said or written up front, but you feel that things are more difficult than they should be, inexplicably.  So you do a Subject Access Request to find out why.

A parent on the autistic spectrum won’t always communicate exactly the same as a typical parent might, despite their best efforts.  There is a shocking lack of autism awareness out there among professionals, even those who who work with autistic children, have a bizarre lack of understanding of autistic parents.  This means that the parent’s normal autistic traits are being misinterpreted and misrepresented.

So when terms like ‘anxious’ pop up unexpectedly on files, written by people who have never even met you, let-alone know you, it’s beyond frustrating.  It’s actively damaging.  Because those type of words are being used against parents, to criticise their parenting and in some cases, falsely accuse them.  It can also have a direct effect on whether a child is diagnosed or not, supported or not.  Because if mum is deemed “anxious”, she is imagining problems where there are none isn’t she.  And it usually is mum who is labelled this way.

The harm caused by one professional starting the snowball, can be enormous.  Professionals not only fail to question the accuracy of other professionals (especially if it suits their own agenda), but it can become like Chinese whispers where the original word gets added to and expanded, into an ever more exaggerated version.

An autistic parent may have some ‘cluttering‘ of speech, where they speak rapidly, or they may give a very detailed explanation of their belief or rationale for something.  This is just a difference, not a problem or failing.  The problem is, when there is autism ignorance resulting in a professional misjudging these traits as signs of “anxiety”.  Especially when they are unqualified to do so.  It’s so easy to write a word down, a value judgment or personal opinion on someone, recorded for posterity.  But it is being done without any care of the potential consequences of doing so.  And it’s impossible to get it removed once it’s there.

Parenting is judged at every turn, even without you having obviously failed in any way.  You will be picked over simply by virtue of being engaged with a system you have no choice but to be, because of your special needs child.  There is something about a clique of professionals when they get together, that becomes akin to the playground.  Posher words of course, jargon thrown in there, but there is a communication style almost like a code, borne of the policies and procedures they follow.  It seems to have morphed into an hive attitude, one that leaves them feeling superior to parents, as if they are the competent ones.  Mums are just mums.

Misjudging autistic mothers as “anxious”, in fact any mothers, has it’s dark roots in misogyny, insane asylums for disobedient wives and neurotic, hysterical women attitudes of yore.  And it’s an extremely convenient tactic for professionals who don’t like mothers persisting in having their children’s needs met.

So the snowball rolls.  It grows.  Until it becomes something every professional that has their finger in the pie, uses as fact, unquestioningly.  It rolls off the tongue, we don’t want to label the child but we sure as hell will label the mother.  Just because someone is different, that makes others assume and pass judgement.  There is never any more dangerous judgement passed than when you are a parent.  Because these days there is such a horrible culture among professionals of watching parents like a hawk, for fear they are abusers or neglecters of children.  And an even more horrible one of labelling parents as an agenda for retribution.

And being labelled as having any sort of psychological issue is enough to have you accused of abuse, deemed a parenting risk.  All on the say-so of a professional who has not assessed you for “anxiety”, or even being qualified to speculate that way, but chosen to term you as “anxious” nonetheless, because they simply regurgitate a label already wrongfully recorded.

The label or opinion may have started as simply “anxious”.  It may have inexplicably grown to “highly anxious”.  Or “anxious and depressed”.  Or “anxious, depressed and not coping“.  Or even worse, “anxious and projecting that anxiety onto the children causing emotional harm”, or that old chestnut MSBP/FII.  No matter how ridiculous and untrue, these professionals are on a roll and won’t stop.  Even the “anxiety” label itself, never mind the use of it by professionals, is a snowball.

You can write requesting the records are amended, but they won’t.  At best they will add your letter to the file and highlight it to say you disagree.  But of course that just compounds the problem, because it looks like you are disagreeing because you are “anxious and unstable”.  So your records are sullied and incorrect for eternity.  And nobody will ever take you seriously again.

It would be so much nicer and better for everyone if these professionals took their negative value judgements and used that snowball in the opposite way instead.

The negative label snowball rolls on down the hill, even if it reaches level ground, it will continue in a circle endlessly and never fully stop growing.  The sad thing is, that the snowball is an enormous barrier to your child getting their needs met.  So when those professionals rolled the snowball, they failed your vulnerable children.

Do they do it to sidetrack families away from resources?  Then they need to wake up.  Because without early intervention, the children who the “anxious” mother seeks resources for, is going to cost the system more!

Because a rolling snowball doesn’t just catch up more snow, it catches up people ~ and those people are impacted, real lives are affected.  And that’s on the heads of professionals.  Is that a mark they want to leave on the world..?

Worrying Perils for ASD-PDA Parents: the “Perfect Storm” for misunderstanding

This is a very hard post to write, for various reasons.  There are some in the autism community who feel very strongly about autism parents accepting all autistic behaviours and that parents should not speak negatively about them.  Being autistic myself, I see both sides and I don’t like seeing autism ‘martyrs’ who humiliate their children online with real names, videos and photographs of their child’s difficult moments and speak constantly of the negatives as if there are no positives, purely to obtain attention/sympathy.  But we have to face facts, being an autism parent is extremely hard, especially if your child has an ASD sub-type such as pathological demand avoidance (PDA) and/or if there is a complex presentation such as additional conditions e.g. ADHD or mental health difficulties.

Research has shown that autism mothers especially have inordinately high stress levels, as tested by their stress hormones, such as cortisol.  There is no denying it.  An autistic child can have extremely challenging behaviours, despite the best efforts of a parent to recognise triggers and do all they can to provide the right environment for the child.  And it can be soul-destroying not to find any rhyme nor reason for explosive behaviour despite trying everything – especially if you are an autistic parent and have that additional insight.

This post, is about atypical perception, invisible communication difficulties, the empathy deficits that mean an autistic child cannot understand why lying can have detrimental impact on others (which overlaps with the atypical perception such that it can be very hard to define where it’s a lie or a serious misconstruing) and co-morbid mental health difficulties, that can drive an autistic child towards negative behaviours and intentions.  Of course, the mental health difficulties so often stem from struggles in the school environment and despite their best efforts, parents can do very little about those.

When an autistic child has atypical perceptions, they see and live experiences differently, they may put a completely different complex on a matter than the reality.  If that child is anxious or depressed, it’s likely to be a negative complex.  An example, is our youngest child attributing negative motives to everyone (and then because of PDA, seeking revenge on the ‘offender’) which are simply not there.  Autistics are often more easily traumatised by things than non-autistics, and the triggers for those feelings might be inconsequential to most people, but still very distressing to the autistic child.  There can be a tendency to exaggerate by the child, that may be how it feels to them and they can be confused, because of the atypical perception.

Autistic children are said to be very honest, it’s true autistics are on average more honest than non-autistics, but they can also mimic others and when they do learn to lie, can fall into a pattern of behaviour in a very literal way, that they think is socially acceptable because they have learned that peers lie and the autistic may struggle to find the ‘off button’ and go to the extreme with it.  Autistic children can be incredibly rigid too, and anxiety levels can drive the rigidity.  So if they tell a lie, they may doggedly stick to it and mental health difficulties may make them want to ‘punish’ the person they are lying to or about, by sticking to the lie, in the face of explanations as to the problems it is causing.

When an autistic child is intelligent, especially if they have mimicked things (including contexts) they have seen and heard from peers, from books or TV and films, they can appear to be completely plausible in their lie or misinterpretation.  Their vocabulary may be extensive which again lends credibility to what they say.  They may feel so anxious (in an existential sense) that they simply cannot think past their own emotions and feelings to realise what it is they are doing is wrong.  They may lack the empathy to see the consequences.  Mimicking can also make an autistic child latch onto something they have heard from another source and use it as a display of their negative behaviour, without true understanding of what they are saying, or the impact of it.

Of course, there is also literalness to add into the mix too and when combined with atypical perception, it is a double whammy to deal with.  Interpretation can be so off, but the response given seem to fit so well, that the untrained ear would not realise the lie, miscommunication or unintentional misrepresentation by the child.  PDA is a really good example of this.

The difficulty speaking up for an autistic child, may mean that they seek their parent to advocate for them.  Their parent is their place of safety and comfort, their parents are the people who understand them the most.  When they are masking in e.g. school, mimicking behaviours such as smiling and laughing and appeasing others to fit in, they can appear to be managing very well.  So the parent might be the only person presenting the child’s difficulties which others don’t see.  However, the release of all the stress of faking it all day, can be extreme.  In the case of a PDA child, it is the worst it can get.

A PDA child will utilise ever more sophisticated methods of not only avoiding what they don’t want to do, but to control the parent who they are focusing on.  PDA often means obsession with people, rather than things as in other ASD subtypes.  Much like OCD, the anxiety makes them want to control, and this will be controlling the person closest to them, which is often the mother.  That parent becomes the focus of blame, revenge, lying, manipulation and control by the PDA child.  The higher their anxiety goes the worst these behaviours usually become.  Underlying the behaviour may also be an anger that the world is a frightening and challenging place, that they believe mum should be ‘saving’ them from and seemingly isn’t.  The obsession may mean mum is put on a pedestal of superhero proportions.  Of course the higher the pedestal the further there is to fall, hence the negative obsession with mum develops.  The almost perpetual state of anxiety the PDA child lives in, means that mum is continually punished for not waving that magic wand and making everything as they wish it.  It can become for the parent, like an abusive relationship, where they are worn down by the control, violence, manipulation and obsessiveness of their own child.

http://www.thepdaresource.com/files/An%20examination%20of%20the%20
behavioural%20features%20associated%20with%20PDA%20using%20a%20
semi-structured%20interview%20-%20Dr%20E%20O%27Nions.pdf

“Several children displayed obsessive controlling behaviour towards a particular member of their family.”

“All parents reported their child blamed others when things go wrong, even when it was their own fault. This frequently had an irrational quality, such as blaming younger siblings or parents for their own behaviour, or using elaborate justifications to blame people for events they were unconnected to.”

It seems to be a common PDA set of behaviours that the child will try to control what the parent says, control what answer the parent gives to a question and when that is evidently not happening, it’s a trigger for a meltdown.  The parent can be prevented from retreating from the presence of the child, who may scream blue murder if the parent tries.  PDA parents end up walking on fine eggshells, to avoid an explosion.  The child can use manipulation against the parent to achieve their goal, whether that be avoidance, control, revenge etc.  Attempts by the parent to instill boundaries and maintain parental control can become impossible.

The child can be so confused by their social experiences, including within the family and their distortion of events can be marked, that communicating with the child is regularly fraught with the child flaring up irrationally.  It makes for very hard communication, because the parent can try to explain that a scenario or event was not how the child perceived it, but they will rigidly refuse to accept it.  Meltdowns can be triggered by such misunderstandings by the child.  There is no more frustrating meltdown, than one based on a mistaken understanding.

The lying and false accusations by an ASD-PDA child can be devastating to parents, who are trying their level best to support and understand their child.  The PDA Society helpline is aware of this as a serious issue for PDA parents, as this thread shows:

“I am one of the Trustees of the PDA Society and whilst every situation is different, I have encountered enquiries on our enquiry line from parents whose children have accused them of physical harm, mental cruelty and sexual abuse to mention a few.

Children with PDA do not realise the full consequences of their actions.

Their parents may have disciplined them or denied them a new pair of trainers and they can seek revenge in some very drastic ways but not realise how it will affect their parent.”

As that thread shows, the false accusations about parents are not always only made directly to the parents, sometimes – and tragically – they are made to third parties as a revenge behaviour.  This is where things become extremely serious.  When a child makes an allegation of abuse against a parent, they are usually automatically believed, hence it is termed officially as ‘disclosure’.  The odds are stacked against the parent because of hysterical attitudes towards child protection in the UK.  There is rarely adequate understanding of autism and for PDA it’s close to zero.  One clinician who does understand these false allegations is Dr Judy Eaton, at Help for Psychology.

Even with Asperger’s lying can be an issue.  The Complete Guide to Asperger’s Syndrome by Tony Attwood  (from p121-122)

“Where lying is becoming an issue for the family and friends of the person with Asperger’s syndrome, explanations will be sought. First, due to impaired or delayed ToM abilities, the person with Asperger’s syndrome may not realize that the other person is likely to be more offended by the lie than by any apparent misdemeanour. Second, he or she may consider that a lie can be a way of avoiding consequences, or a quick solution to a social problem. What the person might not acknowledge is that lying can also be a way of maintaining self-esteem should he or she have an arrogant self-image, whereby the making of mistakes is unthinkable.”

“A sense of paranoia
One of the consequences of impaired or delayed ToM skills for the person with Asperger’s syndrome is a difficulty in distinguishing between deliberate or accidental actions of another person.”

There is research on the issue:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4820467/

“In contrast, other features characteristic of PDA very clearly differentiated PDA-like individuals within the ASD group. These included (amongst others) apparently manipulative behaviour, difficulties with other people, harassment of others, fantasising, lying, cheating, stealing and socially shocking behaviour.”

The child may use the threat of making allegations against the parent, to hold over the parent as a manipulation tool also.

When the child is seemingly unable to have empathy for others, is vengeful, distorts reality and lies profusely, this is a perfect storm for a parent to be under threat of false accusations and living in fear of it happening.

When you consider the autism ignorance out there, the myth that autistic children cannot lie and the parent-blaming by professionals, a parent can live in abject fear and not know which way to turn, when in this situation.

So this post is just to put this out there, much more needs to be discussed and done, about ASD-PDA families living in these untenable circumstances.  To anyone reading this who is in that situation, just know that there are many others out there.  It doesn’t help your personal situation of course, but feeling less alone, might be the difference between life and death for someone.

“The Root of Autistic Masking”

“But we don’t see it in school” (Mum must be lying), “S/he’s fine here, no trouble.” (Mum is attention-seeking, maybe she has FII), “Really? I can’t imagine him/her behaving like that, s/he’s never done that here.” (Mum must have poor parenting skills/there are issues at home).

So many autism parents have encountered this scenario.  Why?  Really – why, why, why, why – when there is much basic autism information available free online from reliable sources, which states that masking in high-functioning autistic children is commonplace?

• http://www.myaspergerschild.com/2012/04/behavior-problems-at-home-but-not-at.html
• https://blogs.shu.ac.uk/autism/2014/11/18/good-behaviour-at-school-not-so-good-at-home/?doing_wp_cron=1467120845.3582270145416259765625
• http://www.autism.org.uk/about/behaviour/common-questions/school-home.aspx
• https://help4psychology.blogspot.co.uk/2016/11/children-who-mask-or-camouflage-their.html

Occam’s Razor says that the simplest answer is usually the correct one.  So, then I ask professionals, what is more likely – that most parents are devious liars with issues, that have nothing better to do than create work for themselves by inventing their child’s difficulties just for the hell of it?  Or that their child really is very anxious, struggling in the school environment and is holding it in whilst there and releasing it in an explosion at home?

Why do autistics mask?  Anxiety and/or inhibition.  Inhibition because they realised or sensed from early on, that they were different and struggled in interactions.  They are likely to have been excluded, ridiculed or bullied for being different.  They pressure themselves to fit in, because all anyone wants is acceptance.  They may also have developed a phobia about being told-off by teachers, or being unpopular with peers.

You know what’s sad about this situation (aside from children not being given either the diagnosis or help that they need that is)?  Is that autistics cannot be themselves.  That autistics have to put on an act, adopt a persona, to be considered acceptable to society.  That they have to live in fear of being judged for their differences.  Misjudged.  That to not be negatively targeted, they have to mimic others and suppress their natural traits.  And it is exhausting to mask.

Why would professionals, teachers and CAMHS clinicians, paediatricians, not realise these most basic facts (and they are supposed to be the ones experienced in children’s behaviours)?  That standing out and drawing negative consequences or reactions, is more than enough to make someone keep a lid on it until they feel safe to let it out?  That they may be in such abject fear and anxiety of the situation they are in, such as school, that they are almost frozen in fear for the duration.  To exist in that state for a whole school day, why is it a surprise that by the time they return home to their family, they are unable to do anything but display challenging behaviours to release it?

Obviously it’s not as simple as these professionals not understanding or realising.  It’s also highly convenient to blame parents, if blaming parents saves money.  Many professionals bask in the glory of their position and the power it gives them.  Some relish misusing that power to become playground bullies all over again, but this time it’s sanctioned by policies and procedures that are conveniently designed to be misused.  Professional bias goes a long way, it’s like a Mexican wave, one starts with a particular viewpoint and the others all willingly join in, oblivious to other possibilities because agreeing is an easy ride and also lets them off the hook if they have been responsible in any way for exacerbating the child’s difficulties (whether by accident or design).

The vast majority of parents see their child in difficulty and want to help them.  Behaviour is telling you something and autistics often have trouble speaking up away from their family.  So they may tell their parents how they feel but be unable to in school.  It’s normal for a parent to want to resolve their child’s difficulties.  Imagine how it is to approach the very people you are supposed to have faith in, only to be dismissed and made to feel it’s your own fault.  Imagine how it is to see your child being tortured every day and being like the last Spartan at Thermopylae against a Persian army, trying to save them.

I do also like to make a particular point on this topic when I can: when professionals say that a child being disruptive in school, must be having issues at home, then the reverse has to be true by their own logic.  That a child being challenging at home, must be having problems at school.  They cannot say that for both scenarios, the problems lie at home!

Professionals simply have to do some basic research such as by reading the above articles and learn to be accepting of what parents are telling them.  Teachers are rarely autism experts and do not have the qualifications to comment on whether a child could not be autistic based on them being passive in school.  If parents can learn this stuff, then you’d expect professionals who are in the job of being around children all day, to do so.  The more parents talk about this issue, hopefully more awareness of masking will be raised.

“The Authorities Using Our Vulnerable Children as Weapons Against Us”

Autistic children – like children with other disabilities – are vulnerable.  Because they are vulnerable they need additional support.  It is part of their parent’s role to seek that support and help, as any decent parent naturally would.  So why, are there so many professionals that actively obstruct this process and refuse the help and support those vulnerable children need?

This scenario can go as far as professionals lying about parents to avoid providing needed resources, and this seems to be common, shockingly.  In the worst case scenario, children are wrongfully removed from loving and innocent parents, to prevent that family gaining access to diagnoses or resources.  Cases can be and are, fabricated against parents, using false accusations of emotional harm and MSBP/FII, abuse or neglect.

Ultimately, who suffers?  The children of course.  Those vulnerable children are being used as weapons against their parents, who are just doing what not only nature compels them to do, but government policies themselves say they should.  So how is it that such policies are being misused against so many parents?  Because there are insufficient safeguards against it.  Because professionals are given too much power, to use their ‘professional opinion’ for iniquitous reasons and not only are there insufficient safeguards, but there is almost no policing or consequences for them having done so.  Because resources are guarded so fiercely and SEN parents seen as the enemy, professional departments think nothing of covering up wrongdoing, after all, that wrongdoing is encouraged and in fact, required.  This tells you what type of people work in those roles, at best weak and putting their job first, at worst, heartless and cruel.

Regulatory bodies frequently say either that they don’t investigate individual cases, are toothless bodies in name only, or simply ignore evidence against professionals because the policies that come from the top, actively encourage or allow this behaviour.  The public are left with suing as a method of redress and how many can afford that.

The stories of parents being threatened with false accusations or removal of their children are all over blogs and parent forums.  How did we get to a situation, where so-called professionals think it’s OK, to put a family through such hell to avoid providing resources?  Everything is money-driven, we know budgets are being cut, we know savings have to be made.  So it’s far more expedient for professionals to falsely accuse parents to avoid diagnosing or supporting a child with the condition they have.  What a government this country has, where money comes before lives and wellbeing.  How short-sighted and ironic.  The same government which penalises and punishes the disabled through making DLA/PIP so hard to obtain or keep.  Surely by providing the support that vulnerable children need is a long-term investment, because they may then do so well that they don’t need to seek disability benefits as adults.

How do these policy makers and professionals sleep easy at night, knowing they are condemning innocent children who are already disadvantaged by their disability, to serious struggles and gross detriment to their mental health and wellbeing?  Do they think that falsely accusing parents isn’t going to impact their children?  Obstructing and causing stress to parents is only going to be detrimental to them, and to leave their child without the support they need is obviously likewise going to put their children through a negative experience.  Many SEN parents can testify that when it boils down to it, the professionals who claim on paper that they put the wellbeing and outcomes of these children first, do absolutely nothing of the sort.  They are using our children as weapons against us.

Whether it be by employing LA educational psychologists who, despite claiming ethics and independence, write reports that deliberately do not accurately represent the child’s true needs, or by trying to force parents to send vulnerable children into unsuitable mainstream placements, or forcing parents to SENDIST leaving their children suffering during the whole drawn-out process, by refusing to assess for an EHCP, by forcing parents into obtaining private reports to get what their child needs – or by actively making false accusations against parents and destroying families.  Money is the root of all evil (Timothy 6:10).

And sadly, for the sins of those who put money first: Suffer the little children…(Matthew 19:14)

 

“CAMHS and Autism – A Story in Pictures” Episode 2

  It had to be done.  Due to the popularity of the ‘first episode‘ I thought a follow-up was warranted.  Autistic children are suffering across the UK, from missed diagnosis, misdiagnosis and tardy and inept support from CAMHS.  So here be it (read it and literally, weep…):

  

         

         

 

 

 

“When Aspies Attack!”

This post is partially written with tongue-firmly-in-cheek, because what comes next, despite the emotions and wrath conjured up in the blogger in question, I have found a combination of bemusing, ironic and humorous.  There are times you simply have to laugh things off.  Most often that is easy do, when you know that what is claimed by the other person has no basis in truth, it makes it simply not matter.  Especially when it’s forgettable.  And even when very wrong, I still respect someone’s right to their own opinion.

I don’t mean any of that in disrespect to said blogger, because I truly meant what I said in the comment I wrote which generated such indignance and wrath in her, that I mean her no ill-will.  (That still applies, despite her name-calling and entire misrepresentation of myself.)  That said, I term this post a ‘right of reply’ but one which is a secondary consideration to raising this issue as something happening out there in the blogosphere, which warrants discussion as a blog post in itself.  I guess that issue is the perils of the online world of autistics.

So, this (then) self-diagnosed blogger had written a post about self-diagnosis of Asperger’s, in which she criticised a certain ‘type’ of self-diagnosed individual whilst extolling the validity of her own self-diagnosis.  This claimed validity was mostly based on the fact that she believed she had researched well and was a qualified doctor, as if that automatically gave her prize claim to being correct.  (It transpires that she is a ‘primary care’ doctor and not a psychiatrist, psychologist or even apparently a doctor in an autism-related field).

My reply to her post on this topic, is screenshotted in prime place in her post to which this post is about (significantly, even above screenshotted Tweets from someone calling her names and making nasty, hateful comments which she also included in her post as if we had committed the same ‘offence’, which makes me think that my comment must have really touched a nerve), a post she devoted to accusing me of “trolling” her and sending her “hate mail”.  Can someone not be honest in the appropriate forum without being called a troll?

There are apparently online storms about self-diagnosis, I don’t socialise on Twitter or engage in that way online with the remainder of the autism community (I don’t have the time!), so I’m not involved in those, I just become vaguely aware on the periphery on rare occasions.  A respected researcher Dr Luke Beardon has written his own blog post here about the self-diagnosis debacle, if you want to read more about what’s going on however.  I only touch on this here, as the basis of what’s behind the topic of this blog post, rather than get side-tracked by discussing that whole subject.

Here then is my full comment in reply to this blogger (because she may moderate my comment out): http://media.wix.com/ugd/58c8f1_34e5db251c174416896eab706a42b5c7.pdf

Hell hath no fury like an Aspie that believes they have been scorned!  Sometimes you will hear autistics say “If only the world was full of just autistics!” but clearly, when you have people who struggle understanding the motivation of others, have impaired empathy in some areas and may be hypersensitive to perceived criticism (which can sometimes be from a lifetime of struggling to fit in with NTs) it will never be plain sailing.  Just add in the general potential to read the written word differently from how it was intended and it can be a veritable recipe for disaster.  Clearly this blogger felt very scorned.

I personally think a world full of autistics would be very problematic, rigid people, people who struggle socially, who can misunderstand (and clearly misrepresent sometimes too 😏!) wouldn’t work out too well.  Was I too blunt in the comment which offended this person?  Possibly, but true Aspie qualities of intense need for justice (don’t like hypocrisy) and honesty, can lead by the nose at times.  I won’t deny my own empathy has areas of impairment.  Blogging is commenting on life matters, it’s up to people what they blog about, just don’t forget you are online!  And disable your comments function already if you don’t want to listen to the opinions of others!  Otherwise you may as well just keep a personal diary!

So there it is – and the moral of this post?  Don’t automatically perceive someone’s comment as malicious or label it trolling if you are offended by it, that doesn’t mean it was written with malice intended.  Look at the logic of the content and keep emotions out of it before you respond.  Aspies usually tend to work logically.  Aspies have traits which can be used for good or bad (and anything in between) as written about here.  When an Aspie attacks another Aspie, does it help the autism community?  Well, let’s try to find a positive here, it helps any NTs reading, understand more about how Aspies tick and most of the time, they will get to read the insights of someone who is wired differently to them and maybe that helps autism awareness overall.

And now I will go back to laughing it all off.  Blogging will never be dull that’s for sure!

PS as said blogger has publicly questioned my own diagnosis, perhaps she’d like to look at my brain scans  I also have my access to my genome with plenty of autism markers, not to forget the heritability of autism with my children being autistic, or the fact that my diagnosis was confirmed by 3 separate professionals independently, then of course there is the fact that I have another condition related to autism, or my diagnosis of SPD, or the many tests I have taken which all score me for ASD and related aspects…I trust that’s reassuring enough to put paid to further uncertainty.

“Art of Autism” Blogger Awards 2017

If anyone has ever appreciated any of my blog posts please consider voting for me here: http://the-art-of-autism.com/vote-for-your-favorite-female-autistic-blogger-for-2017/. I’ve never been nominated for a bloggers award before!

I never really check blog follows statistics, but I know there are a few of you out there.  So if any of my posts have struck a chord with you, given you a helpful insight, been a topic for debate, or anything at all – I would appreciate your vote.

Some of my most popular blog posts have been:

• What does a meltdown feel like?
• Aspie Burnout
• State Kidnapping of the Children of Autistic Mothers
• Connective Tissue Disorders & Their Correlation to Autism

But there is a wide variety on the blog, some of which have been topics I have never seen discussed elsewhere.

I’m normally very behind-the-scenes and ‘hide my light under a bushel’ and therefore my blog is (as far as I am aware), not one of the high profile ones, so I thought I’d break the habit and suggest nominating and voting for me as I’m currently in need of a boost!  It will hopefully also spread awareness of autistic issues from perspectives that may not be found elsewhere and if that helps even one person, it will be worth your vote.

Many thanks!

“Professionals Disbelieving Autism Parents”

  This post is prompted by reading another blogger’s post.  As they say, enough is enough – this issue has to be addressed.  Let’s look at the main reasons that professionals disbelieve parents seeking diagnostic assessments, or support, for their autistic children:

1. The child presents differently in front of professionals (whether it be teachers, diagnosticians, social workers etc.) than they do elsewhere (the child is old enough to have learned masking behaviours which confound professionals who don’t understand masking is taking place);
2. The professional has a cynical attitude towards parents overall and a tendency to assume the worst before considering other possibilities;
3. The child rejects any possibility of being different or having a condition and makes deliberate attempts to hide their difficulties (more likely in older children);
4. The service involved is restricting resources and wants to avoid supporting diagnosis which opens doors to those resources;
5. The professional lacks experience or expertise in autism, or has stereotyped views of it;
6. The professional has their own issues, which could include disliking the parent, being a vindictive or controlling person, has a personality disorder or mental illness resulting in unbalanced behaviours.

OK, let’s discuss these point-by-point:

(1) The different behaviour between school and home is the most oft-cited example of this scenario, although of course it isn’t only necessarily ‘home’, it can be socially with friends and relatives too.  All children behave differently between school and home.  Only with autistic children the difference can be much more marked.  In this case, we are of course referring to those children who mask in school, so that teachers do not see the challenging behaviours the family experience, that indicate the child’s autism difficulties.

What teachers need to remember, is that as a rule they have no autism training (at best a short module when training) – hence the Government has finally just put autism training on the agenda for all new teachers.  (What happened to giving the existing ones some damned training too eh!)  They also need to remember that they are not the expert in that child – their parents are!  School is not a natural environment, it’s very artificial to have 30+ children bunched together in a room sitting listening to someone, so why would they expect the child to be their normal relaxed safe self, with all that peer pressure, school rules and expectations upon them?

When it comes to a clinic environment, the child is likely to feel inhibited because usually the clinicians are strangers.  The child is likely to know they are there to be tested and observed and even if they are young, it’s an environment they are not used to.  (Let’s face it, the diagnostic situation in the UK means it’s very rare for pre-school children to be diagnosed with autism unless they are at the severe end of the spectrum.  This country is not good at early intervention sadly.) So in this clinic environment, the child will still not feel relaxed and safe, to behave as their true self.

So the question is why are professionals not understanding this blatantly obvious situation and instead automatically assuming parents are lying/exaggerating, or responsible for the challenging behaviours at home?  When is common sense and logic going to prevail?

(2) Sadly, cynical professional attitudes towards parents is a widespread problem.  So much so, I produced an information sheet on it: “Professionals/Authority and the Parent Blame Culture” The research evidence bears it out – read that document and your eyes will pop.  It’s shocking and unacceptable.  While you have professionals assuming parents are all useless idiots who are just seeking benefits, or are responsible for their child’s traits through poor parenting, there will always be a huge barrier to a child being diagnosed or supported.  That is a huge failing in their duty of care towards that child.  Why should prejudices, bias and outright negligence be allowed to prevent a child obtaining diagnosis and support?  Is it any wonder there are so many autistic children suffering in the mental health system?  So many autistic children being excluded, or electively home-educated, through school not meeting their needs?  This is about the children, not about the professional’s personal views.  Blanket attitudes based on a small minority of parents that may behave in negligent or nefarious ways, is idiocy.  This also accounts for why autistic children are being misdiagnosed with attachment disorder.  Another enlightening fact sheet about that here: “The Overdiagnosis & Misdiagnosis of Attachment Disorder” and a brilliant response in that regard by an Educational Psychologist Dr Hilary Dyer, to a diabolical article on the BPS website, stating that PDA is probably attachment disorder.  Parent-blame has to stop!

(3) The autistic child rejecting their diagnosis (or potential diagnosis) is a really tough one, the name for rejecting a diagnosis that has been made is anosognosia and as you are probably starting to expect I might, I wrote something about that too: “Anosognosia and Autism – A Real Concern”

People might say, that if someone doesn’t want a diagnosis of this type of condition (i.e. a non life-threatening one) that they should have some say in this.  An adult can make their own decisions in that regard about themselves of course.  But when it’s a child and they are struggling and need recognition and support for it, there is no other option.  There are many times when parents really do know best and children really don’t know what’s best for them.

As a parent in this position, there are times when there is really no choice.  If your child cannot cope in school and school-refuses, professionals are (metaphorically or literally!) rattling at the windows, banging on the doors demanding to know why and unless there is a medical reason, the EWO will be round and the LA will be a-fining!  With (2) above, clearly if you cannot evidence a reason for your child’s distress and most especially if (1) is in play, the only option is a diagnosis.  All you can do is hope that one day your child will be at peace with it and accept who they are.  But the problem is, when your child is highly intelligent and a great masker and mimicker, it can make things very tough for professionals who don’t really know their stuff to see through that.  Having had an autistic child say before their assessment “I will act all normally and make them see I’m not autistic!” I can tell you that coupled with an incompetent CAMHS with an entrenched (2) viewpoint, it is far from plain sailing being believed!  CAMHS need to understand that some children will be resistant to diagnosis and to possess the expertise to see through that!

(4) Restriction of resources is very common, cut-backs here, there and everywhere.  But if someone has a condition they need a diagnosis of it.  Because as many times as professionals say support is not tied to diagnosis, us parents know better and I can show you ten-fold (and then some) families who can prove otherwise.  The NAS isn’t the only one to report on this: (NAS page updated to remove comment since screenshot taken!  Still available to view here however: http://tweb-cms.autism.org.uk/about/diagnosis/criteria-changes.aspx)  Having seen information through a subject access request, where mental health staff discussed not diagnosing people they believed did not need services, I can tell you this is very real. Having also read many stories on parent forums where CAMHS told parents that their child didn’t need a diagnosis because they were managing in school (which could well be because of (1) anyway!), is yet more evidence.  Again, shocking.  And it’s so damned short-sighted!  Unsupported autistics tend to break-down over time, if a child is not diagnosed by reaching secondary age things are likely to really hit the fan soon after.  Secondary school is where the social and school demands are greater and differences can become more apparent.  Mental health difficulties increase through lack of support and these children end up costing services more in the long run.  If they are not diagnosed they will likely receive inappropriate mental health support and no recognition of the underlying cause of their difficulties.  It is usually what is behind the ridiculous “Not Enough Traits for a Diagnosis” scenario.  Short-term thinking helps no-one!

(5) Lack of expertise in autism is rife in CAMHS.  Being legally qualified to assess and diagnose autism does not equal being automatically good at it.  The worse they are, the more likely (1) is going to be a barrier to diagnosis.  Also (4) probably feeds into (2) because stressed staff are sure to have an onward adverse effect on service users and quality of provision.  If the service is not funding staff to have adequate autism-specific training and keeping up-to-date with latest knowledge, how can they claim to have the right expertise?  Clinicians should also have the wherewithal to be proactive and take some individual responsibility for working towards their own clinical excellence.  What seems to be the modus operandi at CAMHS is a quick training module in administering an ADOS-2 and a totally tick-box approach to assessment.  That’s just not good enough.  Our children are the future, what sort of future will they be if they suffer diagnostic failure and zero support?

(6) A professional with their own personal issues…yuk, saved until last, but not the least important by any means.  Sadly, there are some very unbalanced and even deranged people in professional jobs!  And you know what they say, people that distrust others so pathologically, are usually the most untrustworthy (it’s called projection).  Professionals with mental ill-health, addictions, prejudices, personality disorders, disastrous upbringings that have made them unbalanced – you name it, they are not any more immune than the rest of the population.  In fact rates of addiction are very high among doctors (and check out link no. 2 below, they took the job in the first place and aren’t taking a sabbatical whilst they are unfit to practice!).  We’ve probably all encountered more than one doctor with a God complex, or a doctor who dislikes well-informed parents.  I guess this aspect is the one that can sometimes be the hardest to do anything about, humans are prone to err.  Sometimes people just take a dislike to someone no matter what their role is.  If the person who dislikes you is a doctor assessing your child or your child’s teacher, it’s tough.  A professional’s word is often seen as sacrosanct and how dare a mere parent challenge it!  You can ask for an independent 2nd opinion if you feel diagnostic failure results from a clash with a clinician.  There are always complaints processes that exist, even if they often end in a whitewash at least the problem is recorded.  Ironically I’ve heard from more than a few parents who have been targeted by professionals after they raised complaints.  Hell hath no fury like a professional scorned eh.  So cover all your bases and collect evidence of your child’s difficulties.

One of the problems that can arise is being targeted falsely for MSBP/FII and if anything is going to derail a child being diagnosed that will.  Collate your evidence, video your child’s behaviours if necessary, document what strategies you have tried and what has worked (especially with PDA strategies) and what has failed.  If they push a parenting course, take it but say that whilst you are happy to go on the course if it will help your child, you wish your child concurrently on the waiting list for autism assessment because the Government states that early intervention is necessary and they have a duty of care.  If it’s a teacher…you could always ask the school to move your child to another class if it’s possible.  But where the issue is that they aren’t supporting the view of autistic behaviours in school for the assessment, school evidence is not the be-all-and-end-all and there is a wealth of official information on (1) out there which will counter that.  If the attitude is from an EP, if you can afford it get a private EP assessment as evidence.  You can do this for an autism assessment too.  There are options, you don’t need to let bad behaviour from a professional be a complete barrier, no matter how difficult and stressful (and unfair on your child) it is.  You can also report badly-behaving professionals to bodies such as the GMC, HCPC etc. if they are behaving negligently and/or you have good reason to suspect, or know, any unprofessional behaviour is due to any reason that impacts their functioning.  Bodies such as Healthwatch record complaints and patterns of failings.  The bottom line is, professionals like that should not be in the job!

…if you don’t believe a professional would behave badly in their job, here is some light reading for you (if the parent blame document wasn’t enough for you!)

1. “The schools that spy on ‘Munchausen Mums’: Teachers accuse them of lying about children’s autism to get attention” http://www.dailymail.co.uk/news/article-2554867/The-schools-spy-Munchausen-Mums-Teachers-accuse-lying-childrens-autism-attention.html
2. “Tricks Professionals Use to Hide Addictions” https://www.elementsbehavioralhealth.com/addiction/tricks-professionals-use-to-hide-addiction/
3. “Disruptive and Distressed Doctors – Relevance of Personality Disorder” http://www.eaph.eu/pdf/Disruptive+and+distressed+doctors+-+Relevance+of+personality+disorder.pdf
4. “Doctor Struck off After Lying to Cancer Charities to Get Funding” http://www.standard.co.uk/news/health/doctor-accused-of-making-up-data-to-get-money-from-cancer-charities-a3307106.html
5. 

So come on professionals ~ get your act together and stop with the disbelieving already!  And remember folks…

“Autism Assessments – Lay Parents vs Clinicians!”

Most people are expert at something – even if it’s something negative!  Autism diagnosticians such as psychologists and psychiatrists, are, purportedly, the experts in assessing and diagnosing children for autism.

So those clinicians, are the ‘expert’ assessors in making decisions on your child either having, or not having autism.  This is a person (along with colleagues), who most likely has never met the child before.  The child will be in an unnatural clinic environment and with one or more strangers, so naturally will likely not behave in their usual, natural way (the older the child the more likely this is) and may actually be inhibited through anxiety.  The diagnostician will information gather as part of the assessment process, from parents, school (nursery/playgroup/college etc.) and they really merit information that is deemed a ‘professional’ source.

Parents, the Government tell us, are experts in our own children.  Yet all too often, parental evidence taken during an NHS assessment, is seen as inferior to school or other professional advice on the child.  All children behave differently between school and home (and this can be an extremely marked difference in autistics), autistic children can mask a huge amount in school and there is so much autism ignorance among school staff anyway, why should they be relied upon to any degree and certainly not more heavily weighted than parental advice.  What’s the preciousness about ‘professionals’?  I mean think about it – a teacher in charge of a class of 30+ children, who sees an unnatural presentation of the child in an artificial setting that is focused on following ongoing instruction – or the parent who birthed that child, knew them all their life in multiple different settings and sees the best and worst of them while they are unmasked – who is more likely to have the more accurate evidence to provide!

The questionnaires (‘clinical tools’) diagnosticians use are standard, often they have the scoring key on the form (and when they don’t, these are easily obtained) and the rest is common sense, analysing traits, behaviours and difficulties from and in, a real life context. Anyone with half a brain can information gather. It’s just looking for a pattern of evidence, and knowing what to look for in the beginning.  It doesn’t take years of training as a medical professional or psychologist to do this.  The sad thing is, many of these so-called highly qualified people, are so clueless about autism much of the time (they don’t have to have specific autism expertise as a psychologist or psychiatrist to diagnose – basic  ADOS administration training seems to be considered by CAMHS to be all they need), that this is why they over-rely on the clinical tools and sometimes ignore or minimise vital parental evidence.  You can almost see the fear of diagnosing in their eyes.

And of course all the while they disrespect parents as people seeking diagnoses for the sake of claiming benefits, they will continue to overlook parental evidence.  A little bit of respect here please!

What with the agenda not to diagnose in the first place, meaning they may attempt to derail the cause of the autism traits onto something else, such as anxiety or OCD, is it any surprise some autistic children are remaining undiagnosed. These conditions may be co-morbid to the autism, but there can be a deliberate avoidance of looking at the underlying condition that causes the co-morbidities.

An assessor does need to understand other conditions that could have some superficially similar traits as autism, hence a proper assessment should be differential. They would say that this is why it takes a qualified clinician, but there are also assessment tools for those conditions too and a little bit of the right questioning would tease out reasons behind certain behaviours, to know what they were attributable to.  Autism is after all diagnosed as a syndrome of behaviours, it’s an entirely clinical diagnosis – meaning if you have the triad of impairments you are autistic (or as they say ‘meet diagnostic criteria’ or ‘meet clinical threshold’), so there is no reason why a lay person who has done a bit of reading and has the right insights, could not in theory be accurate in diagnosing. Some of the clinicians I have come across are so inept and so reliant on questionnaires, seemingly fearful of deviating from them and unable to give credence to parental information, that it wouldn’t be hard to do better.

Of course, they are also looking for other types of alternative cause for the traits, such as attachment disorder, trauma, or something amiss in the home environment.  Whilst they do need to do this for an fully considered assessment, the parent blame culture ensures these avenues are pursued with far more regularity than they should be.  It’s another stumbling block to diagnosis.

“An expert, more generally, is a person with extensive knowledge or ability based on research, experience, or occupation and in a particular area of study.”

Therefore, who better to know and identify the reason for the child’s difficulties – it is the child who is being assessed after all, not autism as a concept – than their expert parent.  Of course this couldn’t be said for everyone, not all parents would have the ability to do the right reading, express their child’s difficulties in accordance with the concept or context of a condition, especially if it included analysing potential alternatives.  But a fair whack of parents with reasonable intelligence and some research skills and insightful, analytical approach, could do as good a job of assessing their child (or someone else’s!) for autism as a clinician (and in some cases better).  You can also pay to go on ADOS courses.  Of course it will never be, that parents will be empowered with diagnosing their children, or that any such diagnosis would be accepted.  Potential bias/ethical considerations, ulterior motives in a few bad eggs and all sorts of other reasons exist for that.  But the point being made is, that parents are usually the first to recognise their child’s difficulties and ‘experts’ need to take that gold dust on board, value it and respect it.

The NHS has to stop misdiagnosing, failing to diagnose and making such a meal out of assessing children for autism.  Why are there such ridiculously long waiting lists?  NHS NICE states that children should be assessed within 3 months of referral!  Trust what the parents are telling you, utilise their expertise and respect them.  Realise that telling a parent “autistic traits but not enough for a diagnosis” is  failing that child and their family.  They will walk out of there without any support, unless they happen to have co-morbid mental health conditions which they are treated for.  But any such treatment may be useless and even harmful, if their autistic neurology is not taken into account.  And if you do fail that child, their already compromised outcomes may become dire.  Get your autism act together NHS clinicians, or you might just find an army of parents at your doors, who can do a better job at it than you!

“You Know You’re Autistic When…”

Your browser keeps crashing ‘cos you’ve got four hundred and fifty-five tabs on the go…

You have filed your household bills, neatly stapled and hole-punched, in a lever arch folder in strict date order with a note on each one, of when it was paid with full payment reference…

You have a massive collection of matching shoes and handbags but you only wear the same worn, comfy footwear every day…

When trying to recall something you read, you open up a photograph of the scene in your mind and mentally scan the photograph for the information…

You can’t help correcting errors in the messages section below other peoples’ blog posts…

You can tell if a picture is perfectly straight on the wall or not – and if it’s not you have to adjust it until it is…

You line up your ornaments and they have to match either side of the central one…

You buy the exact same meals in your shopping week after week…

You go into a fast food place and are so overwhelmed by the mass of choices, the lights and the expectant face of the cashier, that you end up ordering the same thing every time…

You stand in a queue and the sounds of sniffing, clearing throats, coughing, scratching of the others in the queue makes you want to vomit or have a meltdown…

You go to the cinema and when the trailers and adverts start you have to clamp your hands over your ears…

Hearing someone crunching their food or slurping makes you see red…

You fall out with someone and you cannot forgive the injustice of what they’ve done wrong…

You monologue without realising your partner is bored, but even when they start to walk away to show you they’re bored, you follow them continuing your monologue…

When you’re upset, you suddenly realise you’ve been rocking…

When you’re very stressed by a situation you don’t know how to handle, you suddenly realise you’ve been hand-flapping…

You don’t know when it’s your turn to talk on the ‘phone…

When a seven year old neurotypical child is joking with you, you don’t realise it until they point it out…

You make a mental note to self, to put Post-it notes near the car controls so you can remember which switch does which light…

You bother to write a list of autistic idiosyncrasies…

 

“Male Ego and Autistic Progeny”

Ego is a funny thing.  It makes people proud and vain at one end of the scale or insecure and paranoid at the other.  It isn’t therefore, necessarily a good thing to possess.  But most people have one, unless they have learned to master it and let such burdens go.  The male ego is something that is famously guarded, it’s something females are not supposed to dent.  A man must not feel his “masculinity” is under question.  Machismo, manliness, masculinity…no matter how well hidden it is, in a metro man, a nerd or a hippy, they all have male pride…an ego.

When a man becomes a father, he often seems to see the progeny as a reflection of himself.  The participation of his seed in the process seems to take on a role larger than it played in reality.  It’s almost a primal thing.  He of course only contributed 50% of the genes and therefore characteristics, to that child, but the ego seems to be slightly blinded to that and if something goes awry, many men take it as a personal fault against their self.  This is probably more so in the case of an invisible disability, which is not apparent in the baby, lulling the father into a false sense of security for a while, only to be told later their child is disabled, is autistic.

Many dads of autistic children brush away the worried mum’s initial voicing of concerns, sometimes this leads to disagreement about whether to have the child assessed for autism.  Stories abound on community forums by such mothers, here is a sample:

1. http://community.autism.org.uk/discussions/health-wellbeing/parents-carers/father-ex-husband-denial
2. http://www.circleofmoms.com/autismaspergerspdd-awareness/i-need-help-my-husband-will-not-discuss-or-even-acknowledge-our-son-s-diagnosis-398383

Media articles and blog posts too:

1. http://www.telegraph.co.uk/women/mother-tongue/9602643/Accepting-Autism-one-fathers-path-to-understanding-his-son.html
2. http://www.popsugar.com/moms/When-Mom-Accepts-Child-Disability-More-Quickly-Than-Dad-27330829

Let me tell you what that type of ego-driven denial can do to a child and the family.

Mothers usually know their children intimately.  OK dads usually know their children well, but unless they have become the stay-at-home primary caregiver, they don’t know the child like the mother does.  Mother’s instinct is a very strong thing.  Mothers spent nine months growing that baby in their body, feeling it move, nourishing it, being joined to it by a cord. They often are the ones to feed the baby, sometimes from their own body.  They learn every habit, nuance, whim and personality trait of that child.  They take the child to playgroups and other places where mothers (who notoriously compare their child to the children of peers) congregate, so they pick up a lot.  Of course, if a child is severely autistic it will be blatantly obvious from early on.

So, when you have a dad dismissing mum’s concerns, telling her it’s all in her head, she often will believe it, especially if it’s a first child.  She will question herself, tell herself she’s worrying too much.  And if the dad is unsupportive and attributes the behaviours to the mother’s parenting-style, she will often believe that too.  Especially if she has spoken to any professional about her concerns as the initial reaction is to fob parents off on parenting courses to avoid conducting assessments.  He will cause self-doubt and insecurity in the mother.  He’s worried about his child being stigmatised and the disability being a reflection on himself.  So mum won’t take the child to the doctor for an autism referral, the child won’t be diagnosed and won’t get support.

You then have a situation, where mum is dealing with often very challenging behaviour and nobody believes her that something is up.  This may cause tension and arguments between mum and dad too, mum may be struggling with the majority of the child’s difficulties alone a lot of the time.  Even if mum takes the child to the doctor, if dad-in-denial is there, he will, with that ego of his driving his fear and denial, feel compelled to say that he hasn’t noticed anything wrong, hint that he thinks mum is worrying too much.  And of course, with age-old stereotypes still abounding in society, mum will be viewed as a worry-wort, a bit neurotic and if it’s a first child, inexperienced and needlessly panicking.

So mum may resort to internet research to help confirm or deny her fears.  The pet hate of the vast majority of doctors is internet research.  No matter how bone fide the source, many will dismiss it, because mothers couldn’t possibly know more than the doctors.  Only they usually do when it comes to autism: “Parental Recognition of Autism – Professionals Must Listen!”

Bearing in mind the incompetence of seemingly the majority of CAMHS, who are only too happy to fob families off with “not enough traits for a diagnosis” and the parent blame culture that is rife, with one parent unsupportive the child is almost destined not to be diagnosed, unless their autism is blatantly obvious.  Because all too many doctors say “we don’t want to label the child do we”, what with them guarding resources tightly, we know the real reason they don’t want to.

What does lack of diagnosis do to a child?  They exist in a world of social confusion, struggling with friendships and not knowing why.  They likely have sensory issues and find the world a painful place, wondering why life is so difficult.  They become overwhelmed and meltdown, often feeling ashamed afterwards – because that’s the thing, “high-functioning” autistics are usually painfully aware of their differences.  They may stim and feel ashamed and compelled to hide it, because they’ve noticed other people don’t do it.  They are likely to think themselves weird and wonder why they don’t fit in or feel like other people.  They are likely have additional conditions (ADHD is co-morbid in around 43% of autistics and OCD is often in-built) placing additional pressures on them.  They are likely to go on to develop mental health issues such as anxiety and depression from finding things so difficult.  Mainstream school is very hard for most autistics and impossible for some.  But without a diagnosis that’s where they will be.  Figures of over 80% have been cited for autistics being bullied – other children seem to home in on someone who is different and target them. They will lack understanding of themselves, by secondary school things are likely to start falling apart if they haven’t before.  By then, mental health conditions probably more ingrained due to struggling with an undiagnosed primary condition for so long.

The parents will be seeking out mental health support for their child once things start falling apart, by that point it may be inevitable that a diagnosis follows, but what a tragic and unfair way to reach that point.  And if the child reaches adulthood without a diagnosis, by the time they do (hopefully) obtain one, they may well become very bitter towards their parents for not having them diagnosed sooner.  I have read of some autistic adults estranging themselves from their parents as they were so angry at what felt like a betrayal, for them choosing not to get them assessed and diagnosed and leaving them to live through the above difficulties all that time, without understanding or support.  Most autistic adults are relieved to finally have answers for their difficulties, they know their difficulties are not their fault and they are freed by the knowledge.  So who is any parent to deny their child that right?

The other thing of course, is that if dad is denying the difficulties and brushing them off to other reasons, the child will feel misunderstood and even disbelieved.  For instance, some dads believe a meltdown is the child being naughty and will treat it as such.  If a child school-refuses, they may blame mum for not being firm enough.  This will likely end up being the cause of a less than close relationship between father and child.

So any fathers out there, who are being told by the mother of their child that they believe they need assessing for autism, listen.  What have you got to lose?  If the child is not autistic they won’t be diagnosed.  If they are, you will be enabling them to access the support they need.  The diagnosis only needs to be disclosed on a need-to-know basis.  If the child’s difficulties are that obvious people will have noticed already anyway.  No matter what any official tells you, support usually is diagnosis-based not needs-based, no matter what it says in any policies and if your child has a high enough IQ to manage well enough academically, professionals won’t care about the other difficulties – so that means you must.  And you want your child to have the right support.  The earlier the intervention the better for their longer-term outcomes.  You owe that to your child.  After all, this is not about you, it’s not a choice, it’s a necessity.

 

“Anosognosia and Autism – A Real Concern”

Image courtesy of http://www.treatmentadvocacycenter.org

Most strictly speaking, anosognosia is the individual’s ongoing lack of awareness of or insight into, a medically diagnosed condition they have, due to damage to the brain, a variety of anatomical structures are involved, especially the anterior insula, anterior cingulate cortex, medial frontal cortex, and inferior parietal cortex.  It is insufficient to simply be in psychological denial, for it to be termed anosognosia, but anosognosia is present in people with not only neurological injury e.g. from an accident, but also in people with mental illnesses such as schizophrenia and bipolar disorder.  This means, that the brain differences in those conditions, are damage to the normal functioning of the brain.  Sometimes, the term anosognosia is used to describe denial of the diagnosis too.  I think this should be the case when the level of denial is so absolute, that the individual cannot move past it.

There is however, a dearth of literature on anosognosia in autistics.  Autism is genetically related to schizophrenia (as well as bipolar) and some autistics have co-morbid schizophrenia.  So it stands to reason the the brain differences in autistics can be such, that they could also cause, or contribute, to anosognosia about their autism.  Some autistics may simply deny their condition because they are newly diagnosed adolescents who are embarrassed about being seen as different than peers, or a late diagnosed adult who is struggling with the shock of re-evaluating their whole life through a new lens, or the individual may have co-morbid anxiety which makes them too scared to deal with it.  That’s not actual anosognosia though, time usually resolves this reaction.

Autistics can, not uncommonly, suffer with alexithymia, the difficulty in recognising emotions and the reasons  for them.  I believe this can  contribute to anosognosia.  My eldest autistic child seems to have true anosognosia.  Since being diagnosed with autism over 2½ years ago, she has steadfastly refused to accept her diagnosis.  And I tried selling all the positives, pointing out celebrities and historical figures known to be, or believed to have been, autistic and talking about the talents and abilities it conferred on her.  She was diagnosed late, at age 12, due to professional failures in recognising high-functioning female autistic presentation, but that’s a whole other story.  I thought it was fear and being an adolescent that made her refuse to believe it.  But over time, I have come to realise that it’s more than that.  When she was assessed, she completed self-report questionnaires and selected all the answers that highlighted her as having no problems whatsoever, for personal traits and difficulties.  Everything she was struggling with in school and elsewhere, she attributed to being the fault of others.

She struggled socially, but that was because everyone was “mean”, not because she was emotionally and developmentally behind her peers and couldn’t converse about the same things they did, or because she struggled with reciprocal conversation.  When the teacher’s voice was too loud for her, it was the teacher “booming”, not because she had sensory issues.  She described herself as very helpful, when for example, she has sat many a time, watching me struggling back and forth past her loaded with heavy shopping bags and never once offered to help.  When she wet herself several times in school, it was because she was laughing too much, not because she was so anxious and overwhelmed that she was unable to listen to her body and recognise that she had a full bladder in the first place, or had difficulty speaking up.  When she is constantly unable to manage basic daily minutiae without asking for guidance, it’s because I’ve brought her up to be helpless.  It’s very hard parenting a child who thinks this way.

Even her school, who were trying to deny there were any problems, whilst she was suffering an emotional breakdown failing to cope there, scored her as having difficulties in various areas that she didn’t admit to.  She couldn’t cope with the demands at secondary level, the adult content of the lessons – which was shocking and traumatic, to her developmentally delayed brain – it was like dumping a little 8 year old in high school and expecting them to cope.  She would come home from school and download at length, a monologue of her daily school stresses, pacing in a circle, followed by breaking down sobbing and having meltdowns, where she would bang her head repeatedly on the floor and pick her skin until it bled – but that was because the school was “horrible” and people were “mean”.  Her inability to cope in school and the effect it had on her, resulted her being diagnosed with co-morbid anxiety and depression.  She changed schools, but the same thing happened, so she clearly couldn’t cope in mainstream and then school-refused, she has been off now for 18 months.  Yet she is a very intelligent child, academically excellent with a very superior vocabulary.

So over time, I realised that her denial, is beyond being mere denial.  It’s a literal belief that she really isn’t autistic, an inability to believe it.  Never mind that she has an autistic sibling and parent, so genetically there is something going on, it still couldn’t possibly be her.  I thought time would make her come to terms with it, but it hasn’t.  If any support offered has been autism-related, she refused it.  She has refused social opportunities that would help expand her horizons, yet is upset at having no social life.  As I see signs of alexithymia and very low empathy in her, I believe there is a part of her brain that doesn’t see herself as she really is.  She is confident in some ways, but has a poor-self image at times and will tell me she’s “weird” or “a freak”, which to me are far worse terms than ‘autistic’.  She misunderstands people a lot, she thinks people have been mean all the time.  She externalises her difficulties to such a fervent degree, that the only conclusion is anosognosia.

But this worries me.  Quite a lot.  Her social misunderstanding, naivety and vulnerability mean she does not have the ability to be as independent in the way she imagines she should be.  Her life dreams revolve around fictitious cartoon characters, that ‘autistic living in a fantasy world‘ described by Tony Attwood.  Questions she has asked me, such as why a man would want to abduct a child, coupled with her inability to cope with learning “bad stuff” that would allow her to understand why, means she is stuck in a no-man’s-land of semi-reality.  Her inability to cope when unexpected problems arise, to overreact to phobias she has when outside, her hyper-reactivity and general tendency to panic, all leave her vulnerable.  She flatly denies particular difficulties she has and will only admit to something if she believes it isn’t related to autism (she doesn’t know difficulty speaking up and asking for help is a trait common in autism so she’ll admit to that!).  She has an EHCP because of her difficulties, but asks why she should have one when the other children don’t.

At the age she is now, she will all-too-soon, be considered to have rights, independence and responsibilities that would only be denied/managed on her behalf, if she was deemed to lack capacity.  Because of her high IQ, she would likely to be considered to have capacity, because she would be able to intellectually answer questions that would make it appear so.  And her superior vocabulary, alongside her serious and passive manner with strangers, makes her seem mature, but they can’t see what’s going on inside.  They wouldn’t realise that her understanding of consequences, potential scenarios, awareness of an adequate range of manifestation of danger, lag far behind.  She knows you aren’t supposed to talk to strangers, but she isn’t street-wise, she misunderstands people, she’s innocent and gullible, she panics at the unexpected.  Many autistics can answer questions about dangers and risks based on logic, but there is a mismatch between that logic and an ability to be able to apply it in real life, in real-time.  High-functioning autistic females can also be masters of camouflage and masking.  And parents are elbowed out of the picture sharpish when children reach a certain age.  She has actually said to me that as soon as she is an adult she will have herself “undiagnosed”.  So what happens when a child refuses to accept their difficulties, denies there is any problem and makes a superficially convincing show of it?  What happens when a parent knows that this puts them in a really vulnerable and potentially at risk position?  Professionals will put the rights of the child above the parent’s knowledge of their child and ignore the parent – especially when it conveniently means they can avoid providing resources.  What happens with in situations such as DLA/PIP interviews, if they arise?  She will deny any difficulties and likely lose her DLA.

So I asked myself, do I get a professional to state on record that she has anosognosia?  Trying to foresee the implications of that causes new concerns.  On the one hand, it will be officially recognised and is evidence for any of the above scenarios that might arise, on the other, what if it followed her to adulthood and caused her problems?  What if she became a parent one day and professionals deemed her (rightly or wrongly) as having parenting deficits and lacking insight into them and unable to change?  Knowing the parent-blame culture that exists now and the tragedies occurring to autism families misjudged by social services, it could happen.  It’s a scary prospect.  And if she became a parent, there is a significant chance she’d have an autistic child, what if she refused to recognise autism in her own child and seek help for them?  There are so many potential issues with this.

I believe there needs to be focused research on anosognosia in autistics, there needs to be a way to reach someone with this, to help them understand their neurology and be at peace with it.  Autism is an integral part of who someone is, you can’t separate it out.  If someone needs help, it’s important that they recognise that and accept help from others.  How can someone grow and problem-solve in their life if they don’t understand themselves?  We all need to recognise our weaknesses as well as our strengths, not to allow them to hold us back, but to work with what we’ve got and make the best of it.  And there needs to be recognition in the professional world, that a high-functioning autistic, no matter how high their IQ, cannot be deemed to have full capacity, if they do not have the capacity to recognise their own difficulties and the parental knowledge of the individual must not be dismissed.

The “It’s Just a Difference” Delusion

I’ve read this so many times now.  And it gets more tired every time.  “Autism is not a disability, it’s just a difference.”  It’s oft-quoted by the more strident and vocal autistic campaigners, who are affronted by the mere hint of autism being seen as disabling, or an encumbrance for the autistic or their parent.  They talk of the gifts of autism, of how it’s only a different way of thinking and cite all the famous people either with it, or who are retrospectively suggested to have been autistic.

So who am I to say different?  I am an autistic adult, parent to two children who are also both autistic.  We are all considered “high-functioning” (that over-quoted misnomer).  Therefore I speak from two perspectives, as an autistic adult dealing with the difficulties autism has given me, surviving in a world that doesn’t understand me and as a parent of two children with immense difficulties and for whom I have to battle constantly, to get their needs met.

I am all for singing the positives of autism.  We do have them and some have splinter skills or special talents (my family included!).  I also believe in selling the positives to a child old enough to be told of their diagnosis, because childhood is a time when people are finding their place in the world and need to build confidence and self-belief.  This can apply to newly diagnosed adults too, who are re-evaluating their life to date through new eyes.

I’m still struggling to get my head around what “ableism” means.  I thought I knew, but it’s used at the drop of hat, sometimes about such subtle and complex scenarios, to the point I don’t know any more.  It’s the hotcake of the autism community, well at least among those strident campaigners.  All I can tell you is the truth.  I’m not interested in arguing about whether “person with autism” or “autistic” is more appropriate (although I much prefer the latter), I’m more interested in getting understanding of autism and the adjustments we need, out there.  Because all the while they are lacking, the world is way more challenging than it needs to be for autistics.

So I want to ask some questions, of those autistics who insist that autism is not a disability, not a deficit.  How is it not disabling when…

• …my youngest child cannot understand what peoples’ intentions are, leaving her to constantly assume negative things, leaving her having a meltdown that lasts up to 2 hours?
• …my eldest child (at the age of 13) has needed to sit on my lap for 4 hours sobbing, after first circling the room endlessly downloading what’s happened, because of the stress of her school day?
• …I go to a meeting and my brain cannot handle all the voices contributing and it leaves me unable to process what’s going on properly, and afterwards I need days to recover?
• …my youngest child has aggression and hyperactivity that cannot be curbed and which leaves me at times getting punched and hit with objects?
• …we all have sensory processing disorder, causing much discomfort and difficulty?
• …my intelligent eldest child with a superior vocabulary, is excluded by peers and cannot talk about things at their level, leaving her isolated and lonely?
• …my youngest child has to control everything and everyone around her to an extreme degree and does not respond to any normal parenting technique, leaving her potentially unable to find a successful place in society?
• …my eldest child has such bad OCD that she repetitively questions me until I think I will go crazy from no let-up and why she wastes hours on her OCD habits daily?
• …I am overwhelmed instantly by every meltdown or incessant questioning episode from either child?
• …my children are unable to cope with the “bad stuff” in the school curriculum and are in fact traumatised by it, left with nightmares, intrusive thoughts and panic attacks?
• …we can’t bear busy, chaotic places, they tire our brains and make us overwhelmed?
• …my communication is constantly misunderstood and criticised by neurotypicals, causing constant challenges and making things way harder than they should be?
• …I suffer ‘Aspie burnout‘ with such ridiculous regularity, that I feel obliged to refer people to Christine Miserandino’s “Spoon Theory“ on a regular basis?
• …my children are emotionally and developmentally delayed, meaning they don’t have a full understanding of potential dangers (yet have irrational phobias that affect their lives) and cannot be left alone?
• …my eldest child cannot handle plans changing and will shriek, cry and wail in an overwhelming way when they do, no matter how many times I have explained why life is like that?
• …my youngest child hyper-focuses on sources of anxiety and will find everything a negative?
• …my youngest child has sleep problems and cannot sleep without melatonin?
• …why both my children are on medication for anxiety because nothing else has worked?
• …I feel like an utter alien in the world, my differences are so apparent to me and it seems there is nowhere I fit?
• …my children have all-consuming phobias that cause them to panic?
• …my eldest is so offended by her diagnosis that she refuses to accept it?
• …my eldest was bullied for her differences in school even though nobody knew she was autistic and someone once, outright incredulously asked her if she was autistic?
• …my eldest was so stressed in high school that she was unable to listen to her body and wet herself several times?
• …my eldest has been off school for 18 months and counting?
• …my youngest was unable to integrate into mainstream because it stressed her too much?
• …my children don’t have any idea or understanding of the impact they have on others?
• …my children won’t go out with their dad if I don’t go too, because they have separation anxiety?
• …I was repeatedly passed over for promotion in work and was once sent on a training course in how to interact with people (pre-diagnosis)?
• …my children come at me with multitudes of worries day and night that they can’t stop thinking about, to pour onto me?
• …why I’ve had to buy PECS social stories, punch bags for aggressive behaviour and sensory toys for my child?
• …there have been times when I wanted to take my brain out of my head and leave it on a shelf just to get some peace?
• …my youngest has major meltdowns and rants in public which show no signs of stopping at 11 years old?
• …I find it so hard guessing when it’s my turn to speak on the phone and end up butting in accidentally and hate phone calls?
• …when my youngest has a meltdown which overwhelms me she won’t let me escape to another room, she will follow me, screaming at and hounding me?
• …why I have had endless battles and tribunals to get statements/EHCP’s, diagnoses, school places, support and more?
• …why my eldest has no initiative whatsoever and needs to ask me endless daily minutiae to the nth degree?
• …how even a simple planned or spontaneous outing can end up not happening due to meltdowns and other challenging or exhausting behaviour?
• …you can get a diagnosis of autism or Asperger’s syndrome, which by the nature of the diagnostic criteria, describes deficits and impairments?

I could have made that list so much longer, but I think you get my drift.  As a parent of autistic children, I can honestly say that I frequently go through hell with them.  It is interspersed with the odd moment of humour and there is a whopping amount of love, but the negatives far outweigh the positives and that’s the simple truth.  Not only seeing their difficulties and wanting so much to make things OK for them and feeling irrationally guilty for giving them autism (I had no idea I was autistic when I started a family), but also the awful, health-destroying, relentlessly challenging behaviour I have to deal with day-in, day-out. The sort of behaviour that is unimaginable to some and makes me wonder how I am still standing.

And don’t forget, being autistic myself, I try to see off as many problems as I can, I know in a general sense what things to avoid or will help, but still there is so much you cannot account for, so many difficulties that will still happen and so much behaviour over which you have no control.

I worry about my children.  They have difficulties I don’t remember having as a child.  They seem to be more autistic than me, I see traits that I desperately hope will ameliorate as they grow, I fear for what will happen if they don’t.  And I fear for what might happen when I am no longer here for them.  Who will care?  I have spent their lives anticipating and catering to their needs, nobody else will have that depth of care for them.  So many of their difficulties will not be understood and will be brushed off by others, even those designed to help.

I saw that today, as I have seen so many other times.  In meeting a professional specifically intended to advocate for children.  She didn’t get it and I could see that she would never fathom what she was doing wrong.  So please, don’t tell me it’s not a disability, that it’s only a difference.  I don’t want to be the same as everyone else, because from my autistic eye-view, I don’t like the way a lot of people are anyway.  But there are so many ways in which we are so disabled and it’s definitely not all down to the social model of disability, it’s down to our brains and our internal experience.  The world is never going to be able to change into everything we want or need, because there is too much of what we endure, that is nothing to do with the world.

“Fluffy” Forums Exclude Autistics

The internet is home to a vast array of forums, forums that cater for every type of group possible.  There are support groups relating to particular conditions, whether that be for the individuals with the condition, or parents of children with it.  Autism is no exception.  Sometimes, autistics also have other conditions and will frequent the associated forums.  (We do get about online!)

Being autistic, usually means being frank.  Honesty is the logical approach for autistics, saying it as it is.  The most “high-functioning” among us (usually the ones that mask the most – use a persona to follow social rules) will use forums, sometimes being open about our autism even where the forum is not an autism-related one.  But being “high-functioning” is a curse when NTs expect you to behave exactly like they do, because they give no quarter.

Now, I have touched on this before in a previous post, the issue of being made unwelcome on forums, how sometimes it’s parents of autistic children who surprisingly, are the quickest to exclude autistic adults.  This time, it’s a slightly different angle.  It’s about a seeming culture of fluffiness in forums, where moderators are too quick to jump in and warn or ban members who are telling the truth, because despite it not being told in a malicious way, other members want to stay blind to the truth and are quick to report such posts.  Of course it’s most likely autistics who will fall victim to this happening, precisely because we do tell the truth.

Neurotypicals will all too often take offence at the truth, they want it dressed up, if spoken at all it much be couched in apologetic terms which are mere hints, rather than a bald truth plainly spoken.  But autistics don’t play those games, they aren’t the way we are wired, our brains don’t compute or lend themselves to such social games.  We are intensely confused by them.  Of course, when you are “high-functioning” and analytical, you can recognise behaviours and patterns of behaviour.  But that doesn’t mean you can take part in that – or if you can, it’s an exhausting process of going through the rules in your head and calculating the desired response.  And we may not always get it “right” even then.  I use quote marks there of course, because it might be right for NTs but who says you guys have the prerogative on communication-style?

Don’t forget, an autistic trait is a protected trait according to equality laws, so warning or banning an autistic who is not acting with malicious intent, is discrimination, plain and simple.  Would a moderator take such an action against someone with dyslexia for mis-typing their posts?  If it was possible to display a physical disability into online communication, would they say that wasn’t acceptable?

The line many moderators often draw as to what is considered unacceptable behaviour has been drawn in an unrealistic and discriminatory way.  For instance “be nice” is a seemingly pervasive (and entirely arbitrary!) criterion.  But if autistics speak honestly, they are usually defined as not having been nice, because they didn’t use the fluffy approach.  I have myself, had posts removed, been banned and felt obliged to leave forums due to this problem – and I’m no trouble-maker!  (We can’t have an autistic ruffling the fluff!) Of course I am generalising, there are NTs who do appreciate the honest approach…so this post is of course not aimed at them.  It’s more aimed at the culture allowed and encouraged to pervade by the forum owners.

It also begs the question, if forums are for people to pretend, for people to avoid the truth and to merely seek sycophantic assurances, how useful really are they?  The image at the top of this post intends to represent the point in hand, a fluffy and cute dog, but it has been bred to look like that (nature likely wouldn’t have been so stupid!) and is effectively blinded by it’s facial fluff.  So what use is it’s cute and fluffy fur?  It’s mere decoration.

And this leads me to the fact that NTs are so quick taking offence at the autistic’s lack of fluffiness, that they are missing the fact that an autistic replying to their post is trying to help them with practical solutions, telling them why something is the way it is, so they can recognise the issue and resolve or work on it.  Most autistics want to spread awareness, most autistics offer solutions by default.  Autistics often excel in a particular area (which can be anything!) and we have analytical minds, a tendency to think outside the box.  Why wouldn’t NTs appreciate that type of input and welcome it?

So if fluffy forums have a use, is it not just to have a warm, cuddly environment where people just go for reassurance and similar tales?  I’d rather have forums where you could also obtain practical advice and knowledge, where truth was the main aim.  Who wants misinformation after all.  Isn’t denial a form of misinformation?  And as for dressing up the truth, if an autistic is the person seeking that truth they might miss the hint if it’s couched in fluff, so that again, is a form of discrimination against them, a lack of reasonable adjustment they need to access the service on an equal basis.  Would an able-bodied person expect a person hobbling on crutches to use the stairs the same way they did?  Invisible disability is no less deserving of adjustments.

Of course, some of what is behind this fluffiness is the “PC Brigade“.  Rules have become more and more overbearing, control ever-present and it can feel like the “thought police“are out in force, pervading everything we do.  Maybe there is a fear of forum members taking legal action (for the truth?!) and forum owners are busy covering their collective asses at the cost of discriminating against the minority.  But the minute people stop having empathy for people with communication differences, being appreciative of genuine efforts to help, of making forums as inclusive as society is supposed to be…is the moment humankind has lost it’s humanity.

The Autism Parent’s Social Diary Poem

Here we go, off to CAMHS again
Fighting the LA is such a pain

Another meeting with the school
Where they will treat me like a fool

Need to call Parent Partnership yet again
Must go to the GP with kiddo’s belly pain

Drat, is SENDIST really so close
Now what is that probiotics dose

Need to get a melatonin scrip
Then off to the SENCO I have to nip

The EHCP needs amending
And the LA is ever unbending

Oh yes, the appointment with the EP
Trouble is, I have no time free

In-between dealing with meltdowns galore
There are no ‘not-too-tight’ socks in the drawer

Where are the ear defenders I bought
And the scissors to reduce labels to nought

Surely today, will be calm after school
If not, it really won’t be cool

You’re joking, already the EHCP review
But we have the OT, so what shall we do

I remember reading when I had the time
I remember enjoying a glass of wine

I vaguely remember what it meant to go out
But now all the days in my diary are crossed out

Full of endless battles and meetings galore
There is no time for anything else any more

“The A Word” Has Missed a Trick

“The A Word”…autism, Asperger’s…awareness…angry!

The BBC has done something great, something admirable, it has put on prime-time TV, a much-lauded drama about a family with an autistic child.  Amidst the unfolding plot of an uncle’s recent torrid affair and a grandad being pursued by his tutor for…a torrid affair, lies a family discovering their son is different.  He stands out from his peers because of his quirks, he wanders (apparently miles away, through rolling terrain without his family having been aware he has even vanished from the house until he is collected by friends in a van each time) and he loves listening to music and singing along.

Yay, cry the autism community, it’s great for getting more awareness out there in the public domain.  But hold the front page…hasn’t it missed a trick?  Wasn’t this a golden opportunity to really address some of the most pressing issues in the autism community?  Did it go anywhere near enough?  For several reasons I don’t believe it did.  One is the superfluous and irrelevant sex scenes (why does a drama getting a message across about autism need those!) that totally distracted from the important messages being broadcast, another is the unrealistic autism diagnosis from a single professional when children are diagnosed by a multi-disciplinary team in reality (and how amazingly quickly it happened), then there is the lack of representations of the special needs related struggles families go through before they get to diagnosis and after and still further, is the basis of the programme’s title – the mother’s avoidance of assessment and refusal to accept that her son had autism, to the point she didn’t even want the word uttered.  Most families are desperate for a diagnosis so their child can access support!

But even more than those things, the one that has riled me the most by far, is the completely missed opportunity to get the message out there about autistic females.  Yes, girls have autism too!  The biggest single problem about diagnosis, is the masses of females not being assessed or diagnosed because of the male-researched autism diagnostic criteria.  This has caused totally skewed statistics to be recorded that at best, the gender ratio is 4:1 – that is males to females.  Females are so often misdiagnosed and far less referred for assessment in the first place.  I firmly believe the gender ratio is equal.  The renowned Tony Attwood has gone on record saying the same.

So, wasn’t this a chance to start setting the record straight and addressing the issue of all the undiagnosed autistic females out there?  Struggling in school with labels such as shy, geeky, awkward, tag-along, emotional, anxious, bullied or a loner?  That girls (to our detriment) mask and mimic, makes girls more challenging to diagnose – but that’s because of those damned diagnostic criteria!  Highlighting this problem may have contributed to pressure to update the criteria!

There is information out there about autistic female presentation, the clinical world is in the infancy of awareness and it’s a painfully slow process.  So having a drama with an autistic daughter as the focus would have been a marvellous opportunity, to highlight the superficially more subtle (but no less affected) presentation of an autistic girl, show the challenges the girl faced in school with problems such as bullying and social awkwardness but trying desperately to fit in with friends.  Instead, they showed a stereotypical little boy, who avoided his peers, obsessed over music and rote citations about which band’s song it was from which year and wandered for miles.  All this has done is maintained stereotypes about autism.  There are in fact some males who have the ‘female’ presentation type of autism too by the way.  So how useful is a programme that has continued to stereotype, for public awareness?  What favour has it really done the autism community?

Doesn’t the public already think something’s up with a child who externalises their autism as many males do?  Aren’t they already wondering from that behaviour if the child is autistic?  What about the internalising autistic girl, panicking inside, self-harming alone at home, being misdiagnosed as having a ‘generalised anxiety disorder’ or one of the other oft-dished-out labels they receive? Or the autistic girl labelled as an over-sensitive and over-emotional neurotypical?  Isn’t it about time public awareness was about actual awareness?  Wouldn’t it help some parents with a dawning realisation that their struggling daughter was autistic if they saw this scenario played out on TV?

In all honesty, I only watched the first 2 episodes of “The A Word” I found the carry-on’s around the family too distracting and it wasn’t realistic enough to keep me watching, holding my breath saying “Yes – yes that’s it!” in recognition.

TV Dramas are a clever way of appealing to the masses on a subject matter about which they might not otherwise be interested.  Until it happens to them.  So, BBC, as far as I am concerned you missed a trick big time here and is there any going forward now?  Will the public be interested in another autism drama, I suspect not, the novelty factor has been played out already.

However, ITV, Channels 4 and 5 et al, if you are reading, maybe you can do a better job and will give more thought to the power you hold in your hands to get out the best message you can with the medium you have.  I will watch that space with interest to see if any bandwagon efforts in the right direction appear – so it’s over to you.

Edited to add on 28.5.16 this screenshot of a psychologist talking about yet more negatives of “The A Word” (and which hints at the parent blame culture causing so many autism families trauma):

The Uncharitableness of Autism Charities

 

Sometimes, you can feel no choice but to speak out about wrongs you encounter.  Sometimes, something happens which triggers you to do so.  Today was one of those days.  This is the tale of autism charitable organisations at both national and local levels.

The seed to this post was sown, when I started questioning what autism charities actually do, initially based on my own experiences but then reaffirmed by liaising with others who had  found the same, as well as reading about the experiences of others on forums.  A little bit of reading of some accounts bolstered these views still further.

A few facts about the National Autistic Society (NAS):

The NAS‘ income includes Government funding and also public donations.

71% of it’s  funding goes on staff costs, leaving only 29% for everything else – including actual support for autistics.  This staff, includes staff for it’s schools and admin staff. NAS schools support only 500 autistic children across the UK.  The UK has a population of around 150,000 autistic children.  So…tokenism?  Smoke and mirrors?  A very conservative estimate of how many autistic adults there are in the UK, is based on 1%, 641K – but I have seen the figure quoted as 700K and research shows that for every 3 diagnosed people there are at least 2-3 undiagnosed (and it also cites the rate as 1 in 64).

I once asked some questions about their accounts on the NAS’ Facebook page, I was instructed to message them privately – as if they were scared to let the cat out of the bag and then they blocked me from commenting at all, no reason given.  All I had done was quote some figures from their accounts and make associated points. (you can read their accounts here.)

The NAS runs campaigns, does surveys from which they produce reports, has lots of information about autism on it’s website and runs conferences and training courses.  Of course conferences and training courses are at a charge to delegates and attendees, to at least cover their overheads in running them.  They also have some regional coffee mornings etc. and people can apply to be NAS ambassadors to run things under the NAS flag.

But what physical difference do most autistics feel from such an organisation?  How does it translate on the ground, in day-to-day life?  The NAS has a helpline, when I once called it prior to my youngest child’s diagnosis (whilst on the waiting list to be seen), I was told “We can’t help you without a diagnosis.” and that was that.  I was stunned, as well as left high and dry.  On other occasions having used their email helpline, I discovered that they could not take any action to assist in any form and they sent generic information and links, all of which I had already tried the avenues for, before reaching out to them for help.  And some of their replies took about 4 months to arrive.

The NAS has also failed to speak out about the issue of parents in autism families being falsely accused by professionals, with those accusations sometimes even resulting in children being taken from their families.  They are fully aware of it, they even ran safeguarding workshops to see what angles professionals were dealing with autism families from.  An email conversation and long telephone conversation with a relevant member of NAS staff is also how I know how very aware they are of this problem.  But they have not spoken out publicly whatsoever.  They took the softly-softly approach with the safeguarding workshops, I attended one.  They did not challenge a horrific CAFCASS professional there, who had the most shocking ‘parents are the enemy‘ attitudes towards the family in the role-play.  The most they have stretched to, is giving one such falsely accused parent speaker, Tim Gilling (who also happens to be Deputy Chief Executive and Director of Health and Social Care at The Centre for Public Scrutiny), a platform at a January 2015 safeguarding NAS conference “Getting it Wrong: The Impact on Families” https://www.youtube.com/watch?v=RDKS6NmAEWo  (Most parents however will never have such a platform and no recourse or help, when they find themselves falsely accused, and most professionals will carry on regardless).

Where was the NAS when Monique Blakemore of Autism Women Matter went to the United Kingdom Human Rights Committee “Human Rights Violations Against Parents That are Autistic, Have an Autism Spectrum Condition“?  Why didn’t they publicise the call for research participants for the important survey on autistic motherhood on their website?

I have previously contacted the NAS’ campaigns department over important issues that need raising by them, they are after all the UK’s main autism charity and so have the largest voice and it could be argued, the largest responsibility.  They didn’t respond on any occasion.  I also had cause to contact their legal department over an issue involving an authority’s breach of various laws in regards to autism, three emails and a year later, they never responded there either.  Not a bean.

I additionally contacted them asking for their assistance in organising a fashion show to highlight the issues of females with autism being under-diagnosed.  They were initially enthusiastic – when they thought I wanted to do it all myself and they would just put their name to it as a ‘supporter’.  Why not after all, free publicity which makes them look good.  But once I clarified that I wanted them to fund it and help source a venue etc. they told me their funds were all already spoken for and they couldn’t help.  Really?  What are ticket sales for then if not to cover costs?  And surely a charity’s funding is there to highlight issues for the people it represents anyway.

The NAS cannot police the Autism Act 2009 or the Autism Strategy 2010 (and nobody else is either).  They never highlight that the Government is not policing it either, at best only pointing out how local authorities are faring on implementation of provision across the UK.  Don’t bite the hand that feeds you eh?

A recent post on their Facebook page was met with a string of comments of people speaking out about how neither they nor their children saw any benefit from the NAS and asking what their funding was being spent on.  Some of these people send monetary contributions to the NAS and pay to be members.  As I used to, but found the quarterly magazine didn’t confer any practical help in everyday life and membership didn’t benefit me in any way.

No Better the Devil You Know…

But it’s not just the NAS.  I have encountered a dismally woeful and shocking provision from a local Asperger’s charity which has also shown me how these organisations fail the  very people they are set up to support.

This charity, among other things, assists autistic people with benefits such as DLA by liaising directly with the DWP on their behalf (phone calls and letter writing can be difficult for autistics, especially dealing with layers of departments to get through and staff who don’t explain things clearly).  I gave them authority to do this for me, by signing their requisite letter and was assigned a caseworker, who I met.  Twice.  Other autistics will understand what I mean when I say, that being required to attend meetings is often very stressful, meeting new people is very stressful.  Communication itself, is at times stressful.  It’s a condition with social communication problems, so doesn’t it go without saying?  Other parents of autistic children will also understand when I say, that supporting an autistic child requires a lot of work, assessments, meetings, reports, forms, frequent school liaison, EHCPs, DLA, tribunals …ad infinitum.  When you have two autistic children as I have, you can double the stress, exhaustion and time involved.  When you also have autism yourself…well, you get the picture.

So when this caseworker (who had a pattern of being very tardy – and sometimes non-existent – in responding to status update request emails, involving lots of waiting and chasing) went on maternity leave without a word to me, or what was happening with my case (and apparently not handing it over to anyone either), leaving matters (it transpired) unresolved and with much time having wasted, needless to say this was difficult for me.  In chasing up and finding out there was a new caseworker, he was insisting on me going to meet him at their offices, it was even more difficult.  Especially as they knew I had a school-refusing child on my hands and it involved a train journey to-and-from a not well-served station and multiple other regular commitments to contend with – plus having Ehlers Danlos Syndrome, I am frequently physically exhausted.  Finding out that his manager backed him up on this demand, despite that I had previously met his predecessor and they had all my personal papers and details and therefore knew exactly who I was.  I reminded them that I was entitled to reasonable adjustments and that it was very difficult for me to comply with their request, but they wouldn’t budge, so reaching stress overload with it, I ended up cancelling use of their  service – even though it meant me taking on a challenging matter alone, the like of which they were set up and funded to help people with in the first place.

Fast forward to today, they sent me some of my DLA post they had received, reminding me indignantly (replete with exclamation mark and the envelope only having reached me by great luck, the charity caseworker having totally missed out the whole first line of my address resulting in an associated Royal Mail sticker on the envelope, telling me to inform the sender and with RM having worked out where to send it) that I should have notified DWP of the change in arrangements.  At no time when they ceased providing me their service, had they told me I needed to do this.  As it was them who instigated the arrangement with my signature of authority, I assumed they would have taken whatever action was required to reverse this.  Us autistics tend to take things at face value, we are not good at predicting or knowing peoples’ intentions.  And I kinda had a whole host of other things I had to deal with taking my attention too.  So, with my PC freezing, making emailing impossible at the time and feeling this needed imminently dealing with (indignant exclamation marks can make you feel that way), I had to ‘bite the bullet’ and phone this charity.

Just phoning them dredged up the emotion and stress they had caused me previously by refusing to meet my reasonable needs  and putting barriers in the way to assisting me, so when I asked for the manager (didn’t trust the caseworker with his exclamation marks and inability to even address the envelope correctly) I expected it to be simple to resolve.  How wrong I was.  For the duration of this call, I was made to feel I was in the wrong and that they had tried to be so flexible.  Autistics can find using the phone very hard, I am one of them.  It’s hard knowing when it’s your turn to speak and often you misjudge and can blurt out your points – often at moments you are intending to be helpful, but also the act of communicating over the phone is fraught with uncertainty.  So when this manager started to say something and I uttered a short contributory sentence related to what she was saying, she tersely told me “Can you let me finish!”  How silly of me to expect an autism charity to be autism-aware.  It was like being a naughty schoolchild being told off.

I explained how stressful it was having this situation arise, especially after them having caused all these delays in the first place and having refused to proceed without putting me through another stress-inducing meeting.  She couldn’t see it – and she wouldn’t have it.  She told me they had tried to be flexible by offering to come to my home.  But I am not alone among autistics in hating having people come into my home, especially strangers.  And by the point this had been suggested, they had already ramped up my stress by being obstructive and causing me to worry about the whole DWP issue still being unresolved, due to the previous caseworker not dealing with it during all that time, that this was no good either.  It wasn’t even a policy requirement – this was their personal preference!  I again questioned why they needed to meet me again at all.  The manager staunchly defended the caseworker’s insistence on a meeting, saying she too “…would feel uncomfortable assisting someone they had never met, with something”.  I asked how it was right, that an autism charity would put their own personal feelings above the very people they were set up to support.  She had no answer for that.  Stony silence.  I pointed out that even if it was a policy, I would be entitled to reasonable adjustments in having things done differently, according to the Equality Act 2010 and was told that they knew all about the Equality Act as they advised other organisations on it!  I was given buckets-full of excuses as to the reasons previous handling of my case was so delayed – including part-time staff, people going off sick etc. – despite these supposed pressures, they still had the time to insist on superfluous meetings based on their own personal preferences (do busy people with a lack of resources have time for such things!).

The emotion of having to deal with this whole scenario had made me upset.  My voice was wobbling.  You could hear I was upset, though I definitely wasn’t shouting.  But instead of offering sympathy and empathy, this manager told me accusingly “you’re raising your voice!”.  I truly wasn’t, I had not been rude or offensive in any way and it was clear this was upset and not anger.  Aside from the fact that voice prosody in autism is often affected as part of the condition and we can speak too loud without meaning to or knowing we are doing so anyway, so she should not have made such an accusation even if I had seemed to be raising my voice.  But she wanted to belittle me and accuse me, and had no understanding of autism.  She wanted to defend their indefensible actions.  I was blameworthy.  She even said to me “well sorry you feel that you’ve not had a good service” (this response is intended to imply it’s untrue, and you are blamed for having that wrongful view, or are being unreasonable – it’s almost legalese to deny liability).  This autism charity, funded by the local authority and barely hanging onto their funding as it is, was discriminating against me – the very person they are supposed to help.  Isn’t charity work about being caring and compassionate?  Isn’t it about having full understanding of the very people you support and meeting their needs?  Isn’t it about providing a service that is accessible and behaving responsibly?  Don’t they have a duty to use their hard-won resources correctly?

And when you point out the effects of what they have done wrong, to still not accept it and try to right the wrong, just makes it cruel.  Quite ironic that their website claims part of their service is to improve wellbeing!

And before I end this post, the ridiculousness of it is, I just had an email from said manager, telling me that the caseworker had only set up the arrangement to receive my post (what would be the point of that!) – not to liaise on my behalf with DWP as she had told me she was doing!  So for all those months (at least a year) they were a glorified post office for me and any DLA issues that needed dealing with, I was totally unaware of.  Having handed me back a pile of correspondence that I now cannot face.  At least when I had to deal with it myself I knew where I was and what was outstanding.  And after all that, I am left with having to also now contact DWP to sort out redirecting my DLA letters, as this charity won’t reverse the arrangement they set up for me in the first place!  Who knows with all the other stuff I have to contend with, if or when I will be able to sort this out.

I can’t bear incompetence.  We all make mistakes, we are all human.  But to not have any pride in your work or thought for others in doing a good job and getting it right, especially in charitable work, to treat people with such disrespect and contempt is a gross failing.

Shame on them.  But this issue brings it home, that charities exist, flying their own flags bragging about what they do, with their staff no doubt patting themselves on their backs for their philanthropic endeavours (“Me?  Yes, I do charitable work luvvie.”), but it’s largely lip service.  The true measure of whether a charity is doing the right thing, is if as many people as possible benefit from the service, if they meet their service user’s needs, if they bother to learn about the condition they supposedly support and if they spend their money to benefit the people they serve.  Hence the wolf in sheep’s clothing – the outside is an admirable cause, but the inside is all about the money, self-serving, self-glorification and self-aggrandisement.  So I say to these charities:

The Delayed Autistic Brain!

I used to think it was just me, a quirk I had.  This weird thing, where if you have been somewhere away from a familiar environment such as home, for any length of time, upon your return it’s like the place you visited is overlaid like a ghost shadow, an imprint over the real-world view of the present.  Having been on long motorway journeys, I can close my eyes and still see the motorway from the same eye-view as I had whilst sitting in the car and the sensation of driving endlessly along was still there, along with this ghost shadow of the image, even when my eyes are open.

It’s like your body has returned, but your mind is still at where you were before, it hasn’t properly rejoined your body yet, there’s a lag.  Until it does, you don’t feel quite right.  You feel sort of, not quite fully immersed in the present reality you are in.  And your brain is trying to catch up.

I then found out both my autistic children have it too.  And it can make you feel really weird, doolally is our favourite word to describe it.  It can make you feel strange for the whole remainder of the day, like you don’t feel your normal self, slightly dissociated.

So I thought this must be an autistic ‘thing’.  And then I remembered having read somewhere, that autistics have a disconnect between their physical body and their soul.  It was actually something I read, either about rainbow/crystal/indigo children (the spiritual explanations for individuals with autism or ADHD), or something the Asperger’s author William Stillman said about the soul and autism being out of alignment (and I will update this post to state where, if I get to the bottom of the matter!).

And having a search on the matter, there is actually science about this too:

“Autism may also involve a disconnect between the brain and its external environment—an inability of the brain to change properly based on input from the outside world.”

http://www.childrenshospital.org/news-and-events/research-and-innovation-features/breaking-into-the-autistic-brain

“If the problem of autistic spectrum disorder is primarily one of desynchronization and ineffective interhemispheric communication, then the best way to address the symptoms is to improve coordination between areas of the brain.”

Click to access autistic_spectrum_disorders_as_functional_disconnection_syndrome_by_melillo_and_leisman_may_091.pdf

“The corpus collosum is an area in the middle of the brain that links the left and right sides for communication between the two hemispheres. It is smaller in children with autism (Harden, Minshew, Keshavan 2000; Piven, Bailey, Ranson, Arndt 1997) and the neuronal activity that occurs between the two hemispheres of the brain is erratic and poorly connected.”

http://cirrie.buffalo.edu/encyclopedia/en/article/285/

When you also consider the amount of autistics with sensory difficulties, which involve the various parts of the brain, brain stem and autonomic system, it also makes sense that there is this type of brain disconnect.  After all, movement and sensations are associated with the place you experienced them.  Having sensory issues would make someone more inclined to find it difficult to shake off the feeling of being in a moving car, so why not the image of the place you were at too.  My youngest child has Sensory Processing Disorder (SPD) and has always had trouble going on playground equipment that spins, she can be left for hours afterwards with what she calls “a spinning headache”.  So the sensations and clearly the visuals associated with going somewhere, don’t leave autistics so easily.

Sensory Processing in Autism: A Review of Neurophysiologic Findings

“Local motion processing studies show differences in second order (texture-defined) motion processing but intact first-order (luminance-defined) processing, suggesting difficulties with effective integration of incoming stimuli that is magnified with more nuanced tasks (36).”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086654/

When visual stimuli is not well integrated, it makes a lot of sense that the brain would need additional processing time to unscramble it, which would account for something akin to perpetual flashbacks for a period of time, hence the ghosting and feeling of still being where you had previously been.

So I am glad to have made sense of and found explanation for this quite ‘freaky’ sensation.  Another anomaly, possibly not discussed, that is part of the autistic experience.  Something an autistic child might express to their parent, as not wanting to go out to avoid this sensation, being upset having gone out or a statement “I don’t want to go, it makes me feel weird!”

Judgmental Looks, Tuts and Glares

  As any parent of an autistic child will tell you, people can be really judgmental.  Autistic children can have meltdowns wherever you are, in shops, parks, family outings… you name it.  When the child is very young, you may get an understanding smile from another parent, who views it as an ordinary toddler tantrum, but as the autistic child gets bigger, the looks become more and more disapproving.

You can almost hear their thoughts “Can’t s/he control their kid!”, “What a rubbish parent!”, “That child needs some discipline!”.

Some people are obnoxious enough to actually give filthy looks or make nasty or sarcastic comments, even to your face (occasionally even to the autistic child’s face).  Some, if they realise your child has a condition, can even make discriminatory comments about not bringing your child out in public.

How easy it is for those people, to have their perfect children, who don’t panic and start to meltdown because the shop is too busy or too hot, or the hand-dryers in the toilets are too noisy, or because the shop assistant spoke to them.  How easy it is for them to grab a bag and go out with kids in tow, without having to first identify if their child is having a good day or a bad day, think through whether the destination is going to be busier on that day, or whether it’s too hot and their temperature-sensitive child is going to become overwhelmed before half an hour has passed.  Or even whether as a parent, you possess the wherewithal that day, to deal with it, if anything like that does happen.

Autism parents don’t expect everyone to automatically know about autism, or what effects autism has on the person with it.  But we do expect that when they see a child who isn’t a toddler, having what looks like a toddler tantrum, they realise there is clearly something up that can’t be helped.  When they see that child repetitively and apparently aggressively questioning their parent, or loudly demanding x, y, z, they should think twice before they look child and parent up and down like dirt on their shoe.  (Yes, middle-aged lady in Asda, that was you, at your age I would have expected more compassion and understanding).  Because that child was in a panic they couldn’t control.

They should realise, that when they see a parent with such a big child behaving that way, the reason the parent is not telling their child off and is staying oddly calm, what looks to them like a passive ‘doesn’t-give-a-damn’ parent, is in fact a parent who knows their child has reached the point of being overwhelmed and the last thing they need is their parent shouting at them to behave.  That if the parent deals with it the wrong way, it could push that big child into aggression through sheer blind panic, that could affect members of the public around.  Is that what they would prefer?

And when their own perfect children all stop to stare open-mouthed, it would be nice if they could tell them not to stare with open mouths.  To lead them away and explain that the child cannot help it and it can make them even more overwhelmed if they realise everyone is staring.  And actually, yes, it is also rude.  And if you could also actually supervise your children, so they don’t gather in a circle round the autistic child, that would be appreciated too.  A little compassion goes a long way as they say.  While you have the luxury of not even watching your children, so may not even be aware they are treating an autistic child like a zoo exhibit, there is an autism parent who never gets a minute off, who has to supervise their child the whole time to keep them safe and ensure they are keeping their equilibrium.

While members of the public having perfect children, can go on holiday without a second thought, leaving them rested and full of beans, so that they have the energy to take such an interest in the lives of others and generate negative looks and comments, there are autism families who don’t get to take holidays at all.  Or if they do, they have to restrict themselves to certain types of holidays (perhaps nowhere involving an airplane, or no hotel – only detached chalets to avoid inflicting meltdowns on those in adjacent rooms, or no coach journeys) meaning potentially higher costs, less holidays overall or no opportunities to see the world and have a relaxing beach holiday.  Some autism families are unable to leave their children with friends or family because of their child’s needs.  So they can never have a ‘me time’ break or holiday.

So some sympathy, even some admiration would be welcome.  But when autism parents go out with their children, what they don’t need is judgmental looks, tuts and glares, nor sarcasm or nastiness.  Most autism parents are not receiving the support they should receive from health or social care, they are unpaid heroes doing their best to raise their children to achieve whatever is possible for them to achieve.  They are battered by having had to fight the system every step of the way for their child’s basic rights and the difficulties in being included in society.

So take a leaf out of this man’s book we don’t expect you to pay our tab, but this sentiment is what mattered most to the autism mum when her son had a meltdown in the restaurant:

You may just restore an autism parent’s faith in humanity and feel better about yourself as well.

State Kidnapping of the Children of Autistic Mothers

What can be done, about the utterly shocking situation of decent autistic mothers (some who were undiagnosed at the time), intelligent and caring women who love their children, having them ripped away on the basis of false accusations, misrepresentation and/or misunderstanding of autism, discrimination – and who were in no way neglectful or abusive to their children? How can this be allowed? What sort of society are we to stand by and watch while it happens?

I have encountered 3-4 autistic mothers online just in the last year or so, who have had 1-4 children each stolen this way, as a result of accusations of MSBP/FII.  All the women have come across as caring, warm-hearted and desperately loving their children and wanting them back.  I have contacts who know of far more cases through almost daily pleas for help, they are just the tip of the iceberg.  Imagine all those out there who don’t know where to turn and never contact anyone for help?

Genuine MSBP/FII cases are very rare.  It is not a condition in itself, it is a set of behaviours caused by mental illness, or in some cases personality disorder, making the parent/carer either induce or invent conditions in their child for attention.  Approximately ⅔ to ¾ of general child protection referrals turn out to be unwarranted.  Imagine how much rarer it is for an MSBP/FII accusation to be true.  In this presentation, Dr Helen Hayward-Brown (medical anthropologist) goes through the relevant points showing how wrongly it is used against parents and how they don’t stand a chance against such accusations.  She wrote a 1999 paper in which she explains extremely thoroughly, how this “diagnosis” is misused and for the reasons it is currently being misused, is almost impossible to prove innocence of, citing many valid points which are overlooked by the authorities blindly accepting it as a truth.  Many of the supposed “traits” of it, are the traits any concerned parent would show in a medical situation with their child.  But autistic mothers being misunderstood, are very vulnerable to these false accusations.

Autism is one of a variety of conditions, which can be either misunderstood or unrecognised by doctors and when parents persist in trying to get their child’s difficulties recognised or supported, sometimes professionals retaliate with false accusations of MSBP/FII.  It does seem to be becoming increasingly common for professionals, protecting resources, irritated with parents seeking support for their child, or parents disagreeing with professionals, to be instigators of revenge accusations.  Professionals stick together, one makes an accusation and it is immediately taken as valid by all the others.  Something documented, however false, follows someone round from report to report, where they all quote the original and one another, as gospel ~ either through confirmation bias, or collusion.

Autistic traits in a parent, mean they may communicate in an atypical way, not show the deference professionals expect and are vulnerable to being misunderstood.  Discrimination makes people ill – the NHS admits it here.  If the child is autistic, especially if undiagnosed, professionals can mistake their autism traits as signs of abuse or neglect.

When an autistic parent is in court, especially if they are undiagnosed, they face a system which despite the law, does not proactively provide reasonable adjustments and is a bed of ignorance and lack of awareness of autism by those in power.  This leaves the parent highly vulnerable to being misinterpreted and wrongly judged.

Some autistic parents are wrongly accused of or diagnosed with, having personality disorders.  I have compiled a list of autistic traits which can be mistaken for grandiosity or narcissism (a particular Aspie mum lost her children by use of such false accusations):

• outspokenness/bluntness because people with Asperger’s are very honest often due to not processing likely impact;
• lack of recognising ‘status’ in people of authority/professionals or lack of understanding of social hierarchies (hence talking to them at an equal level and not showing the deference that NTs might);
• difficulties in voice modulation (speaking either too quietly or too loudly) and loud volume of speech can be mistaken for domineering attitude;
• intense research and absorbing of facts which gives a “mini professor” appearance that can be mistaken for a “know-it-all” by others;
• difficulties in interpreting when it’s turn to speak, giving wrong impression of interruption purposely and in ignorance of the opinions of others;
• monologuing, mistaken as opinionated or selfish;
• difficulties focusing when in conversation with others, so needing to ‘get out’ everything has to say in one go, mistaken for being overbearing;
• difficulties knowing when others are bored or unwilling to listen, can be mistaken for arrogance or selfishness.

There may be some autistic parents (as with non-autistic ones) who need parenting courses or support to adequately parent, but that does not mean that autistic person cannot be a good parent!  There are plenty of amazing autistic parents out there!

The trauma to the child and parents from removing children are massive and lifelong.  That damage cannot be undone.  Your DNA carries forward trauma to future generations.  So what such state abuse does, is damage those they traumatise and their future generations of children too.  Considering also that the care system has such appalling outcomes for children, considering how many foster and adoptive parents abuse children (blood is thicker than water) too, how can they excuse this?

And added to that, as autistic parents often have autistic children, neurodiverse children that have not been diagnosed, are handed to new families on the pretext that their challenging behaviour is caused by abuse or neglect.  How many autistic children are wrongly diagnosed with attachment disorder?  A 2014 Parliamentary Inquiry into UK CAMHS, found that particular groups of children were being failed, one of these groups was adopted children.  Wouldn’t it be interesting to find out, how many supposedly suffering attachment disorder, actually had autism or ADHD?  So some supposedly abused or neglected children were removed wrongfully and even where it was known they were autistic and they were removed because the parents couldn’t cope, services clearly failed to provide the right support to enable them to keep their children.  Only this week, a story has surfaced about a little boy who has been taken from parents with learning disabilities (the mother was said to have autistic traits), who were admittedly devoted and all they needed was the right support to parent adequately.  The little boy’s behaviour was blamed on their lack of boundaries, but with both parents learning disabled and one potentially autistic, what are the odds his behaviour was in fact due to autism?

Autistic children do not necessarily have the same needs as non-autistic children either.  A social worker may for instance believe the parent is not socialising them enough, but many autistic children have meltdowns in the company of peers due to sensory issues, or do not want to play with peers who ridicule them, or they prefer playing alone.  So social workers are judging parents by neurotypical standards, and autism families will therefore always be found lacking according to the tick-boxes.

Social workers are not taking up the autism training they are required to according to the Autism Act 2009.  So more parents will continue to suffer misrepresentation and discrimination.  This is appalling and cannot continue.  Things have to change and soon.  With adoption being (ridiculously) irreversible in the UK (shockingly “public policy” ~ AKA saving face, is considered more important than destroying families lives), it’s too late for many.

If you consider how ordinary parents can fall victim to wrongful child protection interventions, imagine how much worse it is if you have a condition they are ignorant about?

Added to which, the DoH statutory guidance regarding autistic adults is so wishy-washy, authorities can get away without doing very much at all to diagnose and support autistic adults.  The DoH Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy applies to all local authorities, NHS bodies and NHS Foundation Trusts and replaces the 2010 statutory guidance. It relates to England only.  Shockingly, authorities’ provision of a diagnostic pathway, adhering to the NHS NICE Guidance on assessing adults with autism and triggering of post-diagnostic assessment of needs, only come under the “should” category, which means, despite the Autism Act 2009, no authority will be held to account if they don’t ensure these are in place and working for all relevant adults.  So misdiagnosis or missed diagnosis, which are all too common, will keep on happening.  What incentive will there be when autism is the most expensive diagnosis to support and authorities are trying to save money?

So the issue of autistic parents being unsupported, misunderstood, misrepresented and discriminated against will continue, unless the Government does something to change it.  The Government has to listen to it’s people, so we must speak out, and speak out loud!

Edited 29.5.16: Preliminary research research results about the discrimination against autistic mothers here: https://insar.confex.com/insar/2016/webprogram/Paper22166.html  “Allegations of fabricated illness, and high rates of surveillance by social services suggest there may be discrimination towards mothers with autism.”

Autistics as Campaigners

Being strident and militant, does it help your cause – or damage it?

As an autistic adult, I strongly believe in those of us who can, speaking out to get our voices heard.  I believe in us asserting our rights, speaking out against abuses against those like us and fighting for awareness and reasonable adjustments.

Autism by it’s nature, means we can get hyperfocused on issues, we can pursue them determinedly, ignore the status of those which might intimidate others and see the logic behind things that others miss.  But there can be a negative side to it too.  We can be relentless to the point of concentrating on the aspects we have seized on and ignoring other pertinent information, being so detail focused we don’t see the bigger picture.  We can ignore social etiquette to the point that we don’t see we are alienating those we are trying to reach.

There are some in the autism community, who become very angry at people viewing autism as a disability.  This is not helped, by those intending to be helpful, coming forward and pointing out the positive qualities of autism, proclaiming autism is only a difference, not a disability.  Some autistics therefore are very strident and militant in condemning anyone who recognises the deficits in autism and the disabling nature of many features of it.

Let’s get one thing clear, all forms of autism are classified as a learning difficulty.  Not all however, are a learning disability, usually that term applies to those with a low IQ.  But the deficits in social imagination, the failure to always understand humour and sarcasm, to understand the intentions of others and the frequent difficulties those classed as “high-functioning” can have with such things as self-care and independence are all learning difficulties.  Autism (including Asperger’s syndrome) is a diagnosis that is not made unless you meet the criteria of the symptoms negatively impacting your daily life.  Even PDD Other (PDD NOS in the USA) is severely impacting on the lives of those with it.  So let’s stop pretending shall we.

Having said that, we have all heard of autistic savants, many autistics have prodigious memories, photographic memories, amazing creative skills and musicality – and many excel at computers and programming.  Some autistics are productive members of society – or would be given the right support and reasonable adjustments (although employment rates are notoriously low for those on the spectrum).  We cannot however, ignore those who are non-verbal and incredibly disabled by their condition, who will always need supportive care, never be independent and whose parents struggle to support them day-to-day, under immense stress.

Naturally, anyone who speaks out on behalf of autistics is doing so with a good heart and good intentions.  But sometimes, the more strident and militant among our community, can stand on their soap boxes and unfairly condemn others.  Sometimes those others are parents trying to help their children.  Some parents may be misguided, so worried about their child’s difficulties and future that they look for what may amount to ‘cures’ and remedies.

It disappoints me to see autistic campaigners using their anger to rail against those doing their best to support their autistic children.  Naming  them “abusers” without understanding that they only want the best for their children, is inflammatory and unproductive to the autistic cause.  If I saw proof that certain products were harming autistic children, I would be the first to condemn people using them knowing they were harmful.  If unknown products are out there, mainstream research needs to test them without bias or financial interests so that mainstream can accept them to reassure the public, or the authorities need to act to make them illegal if proven to harm.  People trying to help their children may be duped, they may need educating, but they don’t need condemning.  They are worrying who will look after their autistic children when they are no longer around and trying to make their child’s present day-to-day life easier.

I have yet to see evidence that either GcMAF or MMS are harmful.  In fact, I have found much convincing information and worldwide research studies about GcMAF and the horror of it being derived from a blood product is unfathomable.  The company states that it’s scientists use pristine sterilisation processes and their product is purer than the blood the NHS transfuses into patients on a daily basis.  As for MMS, it is apparently chlorine dioxide. Chlorine dioxide is also found in: “…mouthwashes, toothpastes, mouth sprays and as a preservative in eye drops. Citric acid is a naturally occurring, weak organic acid found in a large variety of fruits and vegetables, most notably citrus fruits – lemons and limes. The citric acid in Tristel’s products is used for the acidification of sodium chlorite to generate chlorine dioxide.” http://www.tristel.com/products/healthcare/about-chlorine-dioxide/

The question that remains therefore is whether the concentration being used in MMS is safe (I understand it is used highly diluted before use) and whether it is being used safely.  So far, many claims are being made about how dangerous it is, but I have not seen any evidence that this is the case.  I am waiting to be convinced, so convince me.  Kerri Rivera has a lot of information on her website including this page: http://www.healingthesymptomsknownasautism.com/information-about-chlorine-dioxide/  and also a fact sheet about CD (MMS).   Any substance is open to misuse, that doesn’t mean the substance is necessarily dangerous.  The mainstream has been known to be untrustworthy in preventing simple remedies being available to the public in favour of pharmaceuticals, which are a money spinner of course, a whole industry is built upon them.

Make your own mind up after researching:

• https://realrawfood.com/fda-data-proves-mms-kills-diseases
• http://educate-yourself.org/mms/chlorinedioxidebasics004sep12.shtml

Autistic campaigners against both products, don’t appear to have fully researched them and yet are making wild accusations against them and condemning people who use them in good faith.  Apparently reports have also been made to the authorities on these people.  Knowing how professionals like social services can often misunderstand and misrepresent autism families, causing immense stress – including to the autistic children, to take such actions without being 100% sure of your facts is very serious and potentially grossly unfair.

Do autistic campaigners who are highly vocal, angry, militant and strident help autistic causes?  Not if they are blinded by their personal views on autism as a condition and resulting emotions.  Not if they are making themselves unpopular with the very mainstream we need to support us.  You don’t get people to listen by being angry and even less so if you are campaigning based on misinformation.  Who will take us seriously then?  We will be seen as trouble-makers.  Do we want these people representing us?  We are struggling to get our voices heard as it is, do we want the only voices to come from above the parapet with erroneous claims that may not be based in fact and are based on their own prejudices and ignorance?

I say we need to be questioning, open-minded, check our facts, listen to all sides and speak with a strong, firm voice based on truths.  Only then will mainstream organisations be more prepared to listen (or have a harder time saying why not)  and will we gain the respect we deserve when we stand on our soap boxes.