“Public Body Behavioural Policies Discriminate Against Autistics”

discriminatory policies 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!


“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!


days numbered


We can’t help if he won’t engage…

I would like to turn the premise of this reblogged post around, I agree with every single thing this blog post has said. But I think it’s the CAMHS practitioners (et al) that are not engaging! They are clueless and I think in many cases it’s more than learned helplessness, I think it’s that they couldn’t give a crap. They just want to parrot what they have learned from training and manuals, which is clearly inadequate as it’s theoretical and doesn’t take real people into account, their individual personalities, circumstances and what works for them. Ironically people with ASD are supposed to be rigid but I would say CAMHS staff are way more rigid, perhaps they have an autistic collective attitude. Inability to perceive what others need and refusal to deviate from their preferred modus operandi. For children with ASD and most especially PDA, going to CAMHS appointments can be almost impossible. Or they manage to get there but find that the person they are faced with doesn’t have the competence to help them or persist in working with them in a way that’s right for them. It’s a complete failure in duty of care to discharge a child from the service because they are struggling to engage.

Psychologists, psychiatrists and therapists should have the will to see that person as an individual and put down the rule book and keep going until they are successful. They should be flexible enough to provide home visits or meet at a place that the child feels is neutral. Sometimes autistic children don’t like the way the building looks or feels. CAMHS staff should also be prepared to change to a different practitioner when the child has a personal aversion to them, whether it’s the way they look, speak or smell. CAMHS should be prepared to offer female staff to female children, because many females feel intimidated or uncomfortable with male practitioners. It’s appalling what a failure CAMHS are, yes there are isolated successes where good practice has been evident, but as an entity CAMHS is the worst and fails so many children. Considering 1 in 10 children who use CAMHS are autistic, it’s beyond the pale that they get away with it. 4 years ago the Parliamentary inquiry into CAMHS reports on widespread failings, since then there have been NAS reports etc. and widespread media articles about mental health services failing children with mental ill-health. Why has nothing changed all this time later?!

“CAMHS and autism: A story in pictures…”

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

It Must Be Mum

What does that really mean?

It means that if you can fit into the one-size-fits-all service that was designed for neurotypical people with an ordinary upbringing and a lifestyle that means you can drop everything and travel to a destination of our choice…

Then, and only then, will we consider you engaged enough to help you.

To everyone else, well, you should have engaged.

That is, of course, only the first step to satisfying the rules of engagement.  The next step is that you must interact with us in a way that we would like you to.  In a way that we can understand and relate to.  In a way that fits our rigid models and frameworks that have been designed around the needs of people like us.  That you will be able to cooperate and receive help in a way that suits our narrow outlook and ‘one-size-fits-all’ service.

View original post 494 more words

My PIP assessment

Plain old common sense here. The Government does love to waste public money.

Ability Access

Having seen both sides of the coin, I can tell you now with years of experience behind me that PIP assessment are not worth the paper they are written on.

After having worked in Adult Social Care and completed thousands of Community Care Assessments under the Community Care Act for eight years, I don’t mind saying that I am an expert in carrying out home assessments, but my PIP assessment was just a joke. I could have been doing an interview for McDonalds and still got the same outcome.

It started off as normal, someone arranging a home visit, they then came around and I sat on the sofa and explained my situation, there was no physical examination, it was just me telling them my story, for all they know I could have made the whole thing up and still be assigned the higher level of PIP. In actual fact…

View original post 347 more words

“Autism: Perceiving Maturity”

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”

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)


“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”


“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”


“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”


“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”


“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 abusesIt’s time for change.

Continue reading ““Autistic Imagination””

Just imagine – if adults were treated like some of our children…

I have always said our SEN children are being used as weapons against us…great reblog.

It Must Be Mum

I’m struggling at the moment at work.  Lots of stresses, both physical and mental have been building up over time.

I have never been a bounce out of bed person but I’m finding it harder and harder to get up in the morning and leave the house to go to work.  I noticed it started that I was leaving the house later and later and sitting in car at the car-park for longer each day before I can pull myself together and put my ‘work face’ on to do my job.

It all got too much recently at work and I broke down and cried.

They were so understanding, but I knew they would be.  I trust my supervisor.  She knows what I have been through battling the SEN system for my child.  They already knew I was under stress and had put in place flexitime so if we are…

View original post 891 more words

“Having a Meltdown in my Head”

exploding 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 shit 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.

heavy mask

EXCLUSIVE #Disability Discrimination means Son is removed from Home?

The discrimination against autism and EDS families has to stop! Corruption in social services and the family courts has to stop! Shocking discrimination against an autistic mother AGAIN and prevention of diagnosis of her son. For what reason has he been removed? Precisely none as far as I can see. Disgusting system. Please all reblog this and spread this story to shine a light on it. #autismstolenkids


The following true tale is the introduction into what will be a series of posts regarding a seeming miscarriage of justice and potential disability discrimination; names have been changed to protect the identities of these involved. The purpose of this post is to help the family concerned achieve real justice; please share as widely as possible.

Alison is a single parent of14 year old Adam, both live with various diagnosed and pending diagnosis health disorders including Fibromyalgia and Elhers Danos; Alison is also Autistic and symptoms suggest Adam is as well.

Due to Adams health, he found it difficult to cope with school from the beginning and despite special educational needs intervention, including one to one lessons he struggled experiencing bullying which resulted in him developing depression. These experiences became worse during Adams transition from junior to senior school, so much so that in 2015, Alison began to home educate…

View original post 343 more words

“The Damaging Snowball Effect of Professionals’ Words”

snowball-rolling-downhill 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. Anxiety-snowball.jpg

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!

snowball money

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

Lying and Pinochio.jpg 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 we 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.


“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:


“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”

mask.jpg “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?

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.

Stitched Up

Absolutely, the birth parents probably wrongfully lost their special needs children in the first place, the system is as corrupt as hell.

SEN Anonymous

IMG_9132Yesterday sure was a challenge. I’m trying to figure out how and why the social care system and the education system has become so deeply flawed and inherently damaging.

So yesterday, I had very distressed friends with me.  They are adopters of  children with varying challenges. They are a socially conscious and kind, caring couple who provide the best for their children.

They are legally entitled to adoption support, and are lead to believe that the state thinks All Children Matter, that they have a level base of various rights and responsibilities to their family and the future of their children.

However, like many more of us, they received no automatic support and when the pursued said support, they were met with obstacles.

Having met these obstacles, they persevered, thinking that they were right to do so and that the support would promote the best outcomes for their children.


View original post 414 more words

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

Suffer Little Children Matthew 19-14 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)


The Imbalance of Power

Another great blog post from It Must Be Mum. The greater the power the more dangerous the abuse.

It Must Be Mum

By Rosie and Jo’s mum

When, close to tears of frustration, I told the LA case officer that, by refusing to issue the proposed amended statement which was three months overdue, she was withholding my right of appeal to the SEND tribunal, she looked me squarely in the eye and shrugged her shoulders.

View original post 1,432 more words


Reblogging because the torture autistic children go through daily in the school system, the trauma that is unacknowledged by professionals (unless it’s to deflect the blame falsely onto the parent) is described so well here. A parent truly sees their child’s pain, all the while professionals dismiss it. Especially agree about the child losing trust in adults who don’t listen and the loss of their childhood. Tragic.

It Must Be Mum

I’ve been wanting to write about this and still can’t really find the words.  I want ‘people’ to stop and think, really think, about what it might be like to see your child in emotional pain, extreme fear, anxiety, confusion and significant distress every day.  Literally every day.  Many times a day.  Often so severe that hysteria and / or dissociation is their only escape.

Sometimes they will scream and sob, stuff clothes into their mouths to reduce their own noise because even their own noise hurts their ears.  Sometimes they dissociate and completely become some-one or something else.  Their screams and cries when in this state are indescribable, Peter would dig holes in the carpet with his fingernails to try to escape, crying ‘die’ over and over.  Sometimes he would regress into a baby state so significantly he was unable to walk or talk.  Sometimes he was a dog…

View original post 715 more words

Autistic Burnout: The Cost of Coping and Passing

Detailed post reblogged, containing multiple autistic sources and explanations of what it costs, to be autistic in a majority neurotypical society.

Ryan Boren

Being a “high-functioning” autistic or having high-functioning depression or anxiety means being doubted and having your identity questioned. Exhausting efforts to pass and mask are given little credit—sometimes tossed aside with an “I do that too”—and held against you in those moments of burnout when you can longer pass, mask, and cope. Ableist tropes regarding hidden disability are the reward for passing.

Autistic burnout, it permeates every area of your life.

Burnout can happen to anyone at any age, because of the expectation to look neurotypical, to not stim, to be as non-autistic as possible.

Being something that neurologically you are not is exhausting.

Source: Ask an Autistic #3 – What is Autistic Burnout? – YouTube

Then, life got harder each day because of the effort needed to pull off the passing in order to maintain. But, it was also wonderful to not have to constantly…

View original post 3,838 more words

I’m not “mum”

Fabulous retort from “mum” and also the assumption that the casually dressed outreach worker being mistaken for “mum”. Hope that taught these discriminatory professionals a lesson. A worthwhile reblog.

It Must Be Mum

“You must be mum.”

Four words that put you nicely in a box and out of the way, even when you are present in a meeting.  That introduction says so much – you know you are simply there to be tolerated, to tick off a requirement and that you are expected to sit in the box marked ‘mum’ and ‘behave’.

For a disclaimer, please the the last paragraph, but in the meantime, how do you respond?  “I am Peters’s mum, My name is Phillipa – and you are?” is the one I used last time around.

I don’t know any parent that doesn’t hate this approach at times.  It can feel dehumanising and I think it sometimes serves a powerful purpose for the rest of the people in the room.  It can be used to state very clearly the hierarchy of those present.  Everyone else is a human, a person with…

View original post 1,048 more words

No smoke without fire? ‘Safeguarding concerns’

Reblogged as this terrible issue is widespread.

It Must Be Mum

I’d have been the same.  I would’ve thought “I bet there is more to this story, a whole ‘other side.’ There will be something legitimate that triggered the Social Care referral, I bet.”

That is, until I read the contents of Peter’s school and local authority (LA) files.  To say it was interesting is an understatement; I literally shook in shock for three days.  What had gone on behind the scenes, completely unknown to me, was like a never ending horror story.  I remember crying and screaming hysterically over and over down the phone to one someone “They will never, ever, stop and there is nothing I can do. They won’t stop. They just won’t stop.”  That is how it felt, and that is what, in fact, had happened over the preceding three plus years behind the scenes….  What I had read was a relentless stream of harmful rubbish – documented…

View original post 2,509 more words

When ‘Mum’ Seems Anxious

Nobody understands, until they go through this…

It Must Be Mum

A guest blog by Helen and Jack’s Mum

‘I suspect the problem is her Mum who is really overanxious’. ‘I only spoke to Mum once but she seemed very over stressed’.

I knew what was being said about me in that meeting because my friend was sat there, not as my friend but in her role as a teacher from another school.  She told them she knew me socially and she had already asked me if it was OK to stay in the room while ‘We’ were being discussed by the meeting.  I had said it was OK for her to be there – she knew it all anyway and looking back now with hindsight, I’m so glad I had one person sat there believing what I said was true.  I also had one person who was brave enough to tell me what was truly said at the meeting.  At…

View original post 848 more words

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

camhs-post-2camhs-post-3  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…):

camhs-post-7camhs-post-6camhs-post-4camhs-post-10camhs-post-14   camhs-post-8

camhs-post-12     camhs-post-13     camhs-post-11

camhs-post-5     camhs-post-15     the scream.jpg




When School Staff Refuse to Accept a Diagnosis – some key questions to ask

Couldn’t have said it better myself. Please do read this reblog. The point being, school staff are totally unqualified to reject a medical or clinical diagnosis. Have they not heard of masking! Plenty of information free to read on the internet about different behaviour between school and home. Perhaps such teachers should start here: “Different Behaviour Between School and Home & Elsewhere Phenomenon in Autism” http://media.wix.com/ugd/58c8f1_c505444bbbf44a45aab6acbad9255e1a.pdf (various links about it within that).

It Must Be Mum

Many things have shocked me to the core these last few years and one of them is the apparent ease with which people trained to teach can decide that Health Care Professionals that are trained to diagnose are wrong.

How can that be possible?

View original post 1,000 more words

The ‘Surprise’ Child Protection Meeting

Shockingly familiar situation to many other autistic mothers with autistic children. Targeting and malice by the LA and schools. A nest of vipers discriminating against dedicated autistic mothers.

It Must Be Mum

It was snowing, I felt empty as he packed his last bag into the car, this was my new life as a single mum to three.

They would see their Dad, and there was a glimmer of hope that social care would finally provide the help we had been begging for to prevent this break up.

You see, we had been asking for over a year. When Phoebe was in Tier 4 (CAMHS inpatient psychiatric care), the psychiatrist had been very blunt with social care.  He made it very clear that without support caring for an autistic 9-year-old with no sense of danger and severe mental health difficulties, including command hallucinations (voices instructing) that we would inevitably experience carer burn-out.  That fell on deaf ears, the reason – we had ‘managed’ on weekend visits.

Referral after referral went in, but the case was never looked at, beyond a “no”.

View original post 2,000 more words

“When Aspies Attack!”

assumeThis 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

shy-grinning-emoticonIf 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:

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”

cynicism  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 agenda not to diagnose (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. too-honest-for-the-nhs

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