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.

http://www.thepdaresource.com/files/An%20examination%20of%20the%20behavioural%20features%20associated%20with%20PDA%20using%20a%20semi-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”

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.

“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)

 

“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 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…

the-greater-the-power-the-more-dangerous-the

“Autism Assessments – Lay Parents vs Clinicians!”

hello-i-am-an-expertMost 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!

novice-expert

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.

expert-knowledge

“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 direGet 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…”

you-know-youre-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”

male-ego 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!”

Mother Research

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.

Ostrich

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”

anosognosia_lobe_capture2
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

Brain structures implicated in autism 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

Fluffy dog that can't see 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.

Miscommunication