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.

Advertisements

“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)

 

“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

Courts of Protection, MSBP/FII and Autism

human rights With Courts of Protection making decisions on not only mental capacity of adults with autism, but also on the fitness of their parents to remain as their carers and legal advocates, let’s look at whether the right decisions are being made.  A case has come to light regarding a 24 year old male with lower-functioning autism, who was deemed to lack capacity and whose mother had her rights removed and was accused of FII, the renamed Munchausen’s Syndrome by Proxy.  Here are links to three websites/blogs, (1) is journalist Brian Deer’s opinion on the case with a link to the full judgement (2) is a blog on human rights and (3) a website article commentary with some rather vitriolic and closed-minded comments about the mother (and all parents pursuing alternative remedies) below it:

  1. http://briandeer.com/solved/mother-lied-protection-mmr-1.htm (the full 92 page judgement from that page)

  2. http://ukhumanrightsblog.com/2014/10/15/munchausen-mmr-and-mendacious-warrior-mothers/ Steve Hawkins and Janet Yates are two contributors to the comments, who have also looked at the picture of what happened with this case differently than those condemning the mother and I note, that following their posts responding to the condemners, comments were closed.

  3. http://leftbrainrightbrain.co.uk/2014/10/12/brian-deer-wakefield-mmr-mother-fabricated-injury-story


Rather than discuss the details or outcome of the case in the way these sites are doing, I will instead write an open letter style response to The Honourable Mr Justice Baker, the judge who made the findings to remove the mother’s rights and decide that her son lacked capacity, with my comments in bold either replying to his italicised paragraphs or quoting them to highlight my points:

So, this is the mother deemed neglectful and abusive:

For the first 18 years of his life he lived at home with his parents – his mother, hereafter referred to as E, and father, A – where he was by all accounts generally looked after very well. His parents were and are devoted to him and have devoted much of their lives to his care. He attended local special schools and enjoyed a wide range of activities.”

The mother clearly cared for her son very well and took him for dental appointments and vaccinations (even though vaccinations are not obligatory). This is a mother who had no problems until she came into contact with the LA and other state services.

“Until his late teens the family had no contact with the local authority. At that point, however, social services became involved because his parents were looking for a residential placement where he could continue his education. There is no evidence up to that point of any conflict between members of his family and those professionals with whom they came into contact. From that point, however, the picture changed and there has been almost continuous conflict, in particular between M’s mother, E, and the local authority. M’s parents assert that they have been subjected to a malicious campaign aimed at removing M from their care. The local authority asserts that M has been subjected to a regime characterised by excessive control exercised by E over every aspect of M’s life. More seriously, the local authority alleges that E has fabricated accounts of M’s health problems and subjected him to unnecessary assessments and treatments, as well as imposing on him an unnecessarily restrictive diet, with a range of unnecessary supplements.”

It is unlikely that the mother would invent that she was told by the GP that she was an over-anxious mother, she was also calling doctors for help with her son’s difficulties – signs of abuse and neglect? I think not. Many mothers are referred to as over-anxious by GPs, who are non-specialist in any medical field and who are known to have a complete lack of autism awareness and autism training in most cases, for those very reasons.

It is the parents’ case that the mother told their GP that he had had a bad reaction to the MMR but was told by him that she was an over-anxious mother and must be imagining it. When E called the GP a second time and said she was calling the emergency services, she was told not to do this, but went ahead because M was going in and out of consciousness. The paramedics and the GP had arrived at the same time, at which point M’s temperature was 104. The GP had told the paramedics to leave. Before going, they had told her that this was a case of meningeal encephalitis. The GP had been verbally abusive to E. The above account, given to Dr. Beck, a psychologist instructed as an expert witness in these proceedings, is similar to that given by the mother to a variety of professionals”

There being no record made of what the mother says she reported to doctors regarding the MMR does not mean she did not report those concerns. I have personal experience of doctors and other professionals not only failing to record information given, but actually making false reports of consultations and other matters and I am not alone in this. Has his honour also not heard of confirmation bias? If a doctor does not believe MMR causes autism, and especially if there is financial incentive [link] for them to give the vaccination, they will be unlikely to record adverse effects, especially if they were reported verbally and they responded verbally to tell the parent that they disagreed there was a connection, because the scientific community has stated there is none. Here is just one study, easily found, which states that many more nurses submit yellow cards regarding vaccine reactions than do GPs or hospitals: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1884300/

His honour admits that despite a doctor advising tests, none were referred for:

Dr Baird thought it appropriate to consider his problems under the general heading of “autistic learning difficulties”. She suggested that he undergo a range of tests but observed that, if all proved negative, there might well be a substantial genetic component to his developmental problem. I note in passing that Dr Carpenter, in his examination of all the records in this case, found no test results following this assessment and was unclear how far the genetic component to M’s autism was explored with the parents.”

So with that lack of care happening, it’s not so unlikely that verbal reports by E were not recorded – especially as professionals rarely welcome patients (or their relatives) questioning them or being well-informed, so would have likely not respected anything she said, or taken offence at her directness and hence brushed her concerns off.

His honour states:

In none of the records prior to 2000 is there any account of an adverse reaction to the MMR.”

But none of the doctors listed are specialists in vaccinations and subsequent ill-effects – why would for instance, an audiologist have anything to say about the MMR, it’s not their discipline? So the mother would logically not have reported it to those specialists.  Why is this seen as evidence of fabrication?

Regarding Andrew Wakefield, he has said on record that he did not advise parents they should not vaccinate, only that they should have the vaccinations singly instead of combined, but the Government made that option impossible to parents. This might interest you: http://childhealthsafety.wordpress.com/2012/03/14/government-experts-cover-up-vaccine-hazards/ and this: http://nsnbc.me/wp-content/uploads/2013/05/BSEM-2011.pdf

It was the hospital themselves who recommended the gluten and casein free diet: He was put on a gluten and casein free diet and prescribed liquid paraffin and Picolax for his constipation.”  So why was E criticised about this?

According to Dr Carpenter, however, there is no record in the GP notes or any other contemporaneous complaint that M had suffered a gut disorder during this 10 year period.”   Does his honour know how many people suffer gastric discomfort and problems? They don’t all go back and forth to the GP when they can get OTC remedies to deal with the symptoms, so the lack of gastric issues being recorded in that period means very little and if she was seeking alternative remedies these wouldn’t necessarily have been recorded anyway.  Negative assumption again, of fabrication.

In the following years M continued to receive assessment and treatment from a variety of alternative and complimentary practitioners, including auditory integration and sensory intervention therapy and sound therapy, as well as being treated for routine illnesses by the GP. He was not, however, permitted to undergo any further vaccinations. In 2004, E had refused to give consent for M to receive immunisations for tetanus, diphtheria and polio. In addition, M’s diet was increasingly restricted and he was given an increasing number of supplements.”  Clearly the mother was in no way neglectful, as she was taking her son for GP appointments as required. It is a parent’s right to decline vaccinations, as already stated, they are not obligatory. Is it now a crime to alter diet to find the best one for someone with gastric problems? Or to give vitamins and supplements? I think not! Clearly, the supplements being given were recommended by hospitals also: By this point, according to a list prepared by E and A, the range of biomedical interventions being supplied to M included a probiotic, six vitamin supplements, four mineral supplements, five trace elements, fatty acids, amino acids, enzymes and a range of homeopathic remedies. E and A said that this combination had been arrived at through the advice of the gastroenterology department of the Royal Free Hospital, the Autism Research Unit at Sunderland University, the Autism Treatment Trust in Scotland and a privately funded naturopath.”  How does this translate as snake-oil salesmen or the actions of an unbalanced mother (quite apart from the fact that vitamins and supplements are every day items – not abuse!)?

The parents asserted, as is their right to do: “The medical profession does little to recognise the chronic medical disease that autism truly is … It is for this reason that we have consistently adopted a biochemical intervention approach and engaged a variety of privately funded specialists, all of whom have made a tremendous difference to the improvement to M’s quality of life and proven that autism is a treatable medical condition. Due to the constant rejection and dismissal of our conviction that we have continually faced, we have chosen only to tap into the NHS for diagnosis of secondary medical complications of a more general nature, local dietary advice and, where specialist expertise was available, in the form of Dr Andrew Wakefield.”  Does this sound like neglectful and abusive parents? No, it sounds like parents with their own views who are perfectly entitled to have them and views which are shared by thousands of others in the autism community. They have been vilified for not conforming to the tick-box mentality that the state would have them do.

I see parents who tried their hardest for their child, planned for his future in the face of obstructiveness from the state – as many parents of autistic children find they have to do, tried to get things right for their son and wanted everything to be the best for him. The Government claims that parents are experts in their own children – clearly that only applies so long as the parents are in full agreement with the state.

Does this sound like a neglectful or abusive parent?  E made a series of complaints about the standard of care given to M, including that he suffered repeated episodes of ringworm, other fungal infections, conjunctivitis and ear infections, including a burst eardrum. As a result, E spent three weeks staying in a nearby hotel to provide support for M.”  No, it sounds like a parent wanting the best for their disabled child.

A dentist claims E was informed of the presence of an abscess but there was nothing in writing to E to say that this is so, only the dentist’s personal record (which as E points out could have been altered for the reason of fear over liability). Where is the controversy? Isn’t a courtroom the place for only facts and evidence? If it’s unprovable it should be disallowed. E emailed the dentist the following dayIn an email dated the following day, E told Ms Haywood that “nothing has shown up on the x-ray, so I am told it is likely to be sinusitis causing teeth nerves to be on edge.”  so WHY did the dentist not challenge this at the time if she knew it to be an abscess and in requirement of urgent treatment? A GP prescribed antibiotics for the sinus problem E believed her son had: “…and was examined by another dentist at a surgery near to Z House. Nothing abnormal was detected, although the notes of this examination produced in the course of the hearing indicated that E requested that no x-rays be taken. When seen by the oral hygienist at the family dental surgery on 4th September 2012, no signs of an abscess were detected. It was said in evidence that a hygienist would not be in a position to make such a finding.”  So she has taken him for several appointments during this period, there is no watertight explanation as to why she (purportedly) requested another x-ray was not given, but we know that too many x-rays are ill-advised due to radiation exposure and perhaps she had trusted what the previous dentist had told her and the interpretation of the previous x-ray results, as she understood them.  Would a mother knowingly covering up the abscess take their child for further appointments?  So you are accusing her of leaving her son in pain for 14 months, when she had been the one taking him for the check-ups and the dentist didn’t follow up when E put in writing she had been told it was sinusitis?

E also sent an email to Ms Haywood (the naturopath) saying: “This would not only explain the excruciating pain that [M] has experienced, and possibly on/off since October 2011 … that would have been horrendous for [M] to have had to cope with over the last year and just unbearable without intravenous pain relief.”   So clearly it was not her fault the delays happened and she had ensured he had regular pain relief whilst stating all the while that she knew something was wrong, yet lack of action by the dentist is blamed on E.

“It was at this meeting that the chief executive of X College – MH – first suggested that E’s behaviour was akin to “Munchausen by proxy.”   So a very rare psychiatric disorder, that is disputed [link] to exist by some experts, is “diagnosed” by an admin manager!

E seemed agitated and told the social workers that she had been giving M a hand and foot massage, although the social workers saw no signs of this on M.”  Is this for real? Who has “signs” of having had their hands and feet massaged and why is this some sort of indication of negative parenting!  E told them that they should not have visited; they should have made an appointment.”  This, along with many of the other comments, about her monologuing etc., to me says that she has Asperger’s syndrome straight away, in view of her general parenting style as well (dedicated and tenacious). So tell me how court psychiatrists instead found her to have personality disorders? This is shocking and clear evidence of high-functioning female presentation of ASC yet again being misunderstood.  The Equality Act 2010 states that reasonable adjustments must be made by all public bodies for people with ASC (or mental health issues), a reasonable adjustment in this case would have been not to misjudge her for her communication style!

No examination or assessment should be carried out without permission by his new GP.”  GPs are known to be autism ignorant, hence the RCGP has instigated plans [link] to address this precisely because it is a problem and many parents of autistic children as well as autistic adults struggle to even get referrals for ASC assessment, let-alone any co-morbid condition or health issues. Studies have shown that adults with ASC struggle to get health problems recognised and treated [link].  They are also called general practitioners for a reason.  Autistic people often struggle to identify problems with their own body and emotions, struggle to go to see their GP because of feeling intimidated or struggling to communicate and sometimes need a parent or someone who knows them very well to accompany them and help them to communicate with the GP.  Without this, their health needs can suffer.  So how this action will benefit M is highly doubtful and it is likely to in fact hinder him.

E stated that she is a very precise individual and passed on the information in a way that ensured clarity.” Another sign that she has Asperger’s.

“At the outset I was told by E that she had problems with communications attributable to a long-standing neurological condition.”  She may have all the symptoms of the condition and not been officially assessed or diagnosed, but be self-diagnosed, that doesn’t make her a liar. What she feels is down to a neurological condition is easily down to ASC.  Literalness is another sign of Asperger’s so she could have read the symptoms and decided it fit herself.  A liar is someone who knows something to be untrue but they say it anyway.

I found it difficult during the hearing to keep E on the point when she was cross-examining witnesses.”  Again, sounding like Asperger’s and it sounds as if his honour is suffering confirmation bias, because he didn’t understand E’s presentation, it was easy to build a picture against her along with the failure in understanding of the other parties and this has gone against her in a very discriminatory way.

“It is an elementary proposition that findings of fact must be based on evidence, including inferences that can properly be drawn from the evidence, and not on suspicion or speculation.”  I don’t believe that court is the place for inferences – that is assumption based on what it looks like (due to majority bias), but what it looks like isn’t always what it is!

“Eighth, it is not uncommon for witnesses in these cases to tell lies, both before and during the hearing. The court must be careful to bear in mind that a witness may lie for many reasons – such as shame, misplaced loyalty, panic, fear and distress – and the fact that a witness has lied about some matters does not mean that he or she has lied about everything – see R v. Lucas [1981] QB 720.”  This also applies to witnesses from the LA, clinicians etc. as many parents know!

…during the hearing I had the clear sense that she was relishing the opportunity to put across her case about which she plainly feels very strongly.” Again, another Asperger’s trait.

I have no doubts that E adores her son and her daughter, and that she has devoted much of her life to her children and, in particular, to getting the most that can be achieved for her son. Her devotion is not, however, selfless. On more than one occasion she said that this was case was about her and, although she was quick to retract that comment, when I pointed out that it was actually about M, there was no doubt that she felt she was the main focus of the inquiry. She was the centre of attention and, in my judgment, at times obviously enjoying the experience.”  It was about her too – it was about removing her parental rights, her rights to continue caring for the son she raised for 24 years and this is part of what directly affects her son! “enjoying the experience?” that is a subjective and biased comment which has no place in court.

It was E’s case that she had suffered from a neurological condition – vestibular neuritis …In her oral evidence she had no difficulty apparently recalling detailed events from many years ago. I have already observed that she showed no difficulty in communicating. Mr Bagchi submits that her suggestion that she had a memory problem was just a crude cover story to avoid criticism for her secret recordings. I agree.”  If E has Asperger’s, then his honour has a lot to understand about ASC communication. Someone can be very high-functioning and verbally superior even, but that doesn’t mean they don’t have deficits in communication, problems with working memory, difficulty focusing during verbal communication etc.

E used a number of tactics to avoid answering questions and ensure that the interview was focused on materials she considered important, including talking a great deal and without allowing interruption, providing emotive impressions which lacked concrete detail, and jumping from one topic to another. Dr Beck reported that she felt on occasion as if E had embarked on a monologue and she found that she had to be very firm and to interrupt her, and when she did interrupt her, E sometimes apologised and at other times protested, but invariably continued talking about whatever she wanted to talk about, without apparently being influenced by Dr Beck’s interruption. Dr Beck had the impression that E was keen to control the interview and that, if she reflected on this with her, E’s apologies were not genuine and she did not generally change her behaviour as a result.”  Yet again, hyperfocus is an Asperger’s trait, difficulty focusing during verbal communication is again, as is monologuing and digressing from the original point due to inserting much detail.

I can well understand why his family feel so strongly about him and want to do whatever they can to ensure that he gets the most out of life.”  And yet you will allow psychiatrists who likely have no understanding of ASC to brand her as having personality disorders, and claim she is a risk to him because she doesn’t fit into the LA tick-box?

“Dr Carpenter observed that most of the dietary and nutritional therapies given to M are ones that he has experienced with other patients over the years. He has not objected to them being used in most cases. He also observes that E appears to have normally sought professional help when using therapies; that she has not devised treatment protocols without advice.”  Yet you still made it a problem.

“Dr Carpenter also criticises E for failing to question the reason and purpose of any of the therapies or interventions used or seek unbiased evidence about their effectiveness.”  Yet conversely, patients are not expected to question medical treatments, which many times turn out to have bad side-effects and in some cases be the wrong treatment?  This is also very contradictory considering she is accused of being over-controlling, this is an instance where she has accepted what she was told by several practitioners and tried to assist her son based on their directions, not her own, so she wasn’t the one controlling the direction of treatments.  It is also claimed her son had 6 hours per day of oxygen treatment, how can this be possible if he was living in homes and attending college as well as having access to enriching activities?  Even if it went on while he was still at home, who is to say it didn’t happen while he was relaxing in the evenings?

It is the quantity and intensity of the supplements given to M that causes concern for Dr Carpenter rather than any single supplement.”  Really? So what if it was traditional medication that needed taking to the same degree? Double standards.

“The concern about the insistence of the diet in this case was, therefore, not so much about the use of the diet per se, (which is plainly not uncommon amongst people with autism, notwithstanding the clear view expressed in the NICE guidelines), but, rather, the fabricated diagnosis which led to the diet being imposed.”  Assumptions have led to the view that the diagnosis was fabricated. At worst, she could be considered highly tenacious and naïve, with a very direct communication style (none of which equal abuse) and at best, no different than many other devoted autism mothers out there – do they all have FII?

“Dr Carpenter notes, however, that most of the supplements appeared to have no known toxic overdose limit.”  Yet still, because you decided she lied about his conditions, this is problematic.

“By and large, it is the sheer range and number of the treatments and their indiscriminate use on an incapacitated person that gives rise to concern, rather than the risk of any harm befalling the individual.”  So it’s now a crime to have someone take a bunch of vitamins every day?

Regarding the assertion ofneurodevelopmental dysautonomia” not being in any recognised diagnostic manual, have a look here at familial dysautonomia which is a neurodevelopmental condition – for microscopic semantics you have branded her a liar again: http://www.ncbi.nlm.nih.gov/pubmed/14981733

M’s life was increasingly dominated by the programme of treatment to the exclusion of other activities.”  Are you sure? How is it then, that you describe his home life thus, in total contradiction of yourself:

I do not doubt the devotion which E and A feel for their son. In some ways his life at home was far richer than could possibly be achieved in any care setting. The range of activities arranged for him was plainly very stimulating and beneficial.”  So clearly the LA didn’t want to enrich his life the way his parents did and this is where the disputes have arisen, which therefore makes it look rather correct that as E said, they wanted to decide what to fund, to have control over it all. She is not the only person to take this view in the same situation.

Without exception, I accept the evidence of the social workers and care staff. Where their evidence conflicts with that given by E, I prefer their evidence and reject that given by E, and indeed A.”  Very unfair and biased judgement and a very slippery slope for human rights, justice and balance.  M’s loving and dedicated father is viewed as an “enabler” in much the same way as someone enabling a drug user.  His support of his wife is used as a criticism against him instead of a testament to her doing the right thing.  This is just appalling.  It is a classic example of the blame culture that exists in the state today.

Mr McKinstrie identifies several advantages of a return home. First, M clearly has a longstanding affectionate relationship with his parents and sister and they continue to be important people in his life. Furthermore, each is committed to M and in supporting him in what they consider to be his best interests.”  Yet still, you decided that purely on the basis of what are highly likely Asperger’s traits in the mother, which means she thinks somewhat differently and is hyperfocused on giving her son the best, because neither his honour nor the professionals understood this, you have branded her with at least two personality disorders she most likely does not have, and have decided that M must fit in with what the LA want and his own mother is a danger to him? The worst she could be accused of is being overzealous, but clearly has been well-meaning.  This is no reason at all to come between a mother and her son, bearing in mind he is stated to lack capacity, why would you deem her perfectly legal preferences as abuse or damaging?  Not knowing whether he would choose those preferences for himself does not mean it’s correct to assume that he wouldn’t.  Since when has failure to communicate well with professionals been a crime?  Where do you draw the line?  Are parents going to have rights removed for religious or cultural reasons?  For being vegetarians?  For parents who are on the autistic spectrum who also have autistic children needing support, this judgement is tantamount to being completely discriminatory against their specific style of communication.  This whole judgement is a farce and is a dark day for many out there, who have open-minds and don’t fit neatly into the boxes this nanny state would love to have everyone in and don’t blindly consider what the establishment says to be always correct.

Final note – his honour says:

“I merely observe that, if the parents’ assertion about conspiracies is correct, it would amount to gross misfeasance in public office and the biggest scandal in public care and social care in modern times.”

And that means that it can’t be so?  Absolutely not!  There have been multiple cases in the media of public organisations covering up, lying, withholding evidence and huge scandals – the very fact that the term ‘misfeasance in public office’ exists at all, proves that it happens.  I didn’t expect judges to be using straw man arguments or paradoxical statements.  The state is most certainly not above error as this judgement shows, nor corruption, as many have experienced.

The Injustice of State Abuse

1984 George Orwell The increasing paranoia and accusations against parents, of “emotional abuse” and even “potential for future emotional abuse” has taken hold of the nation.  No parent alive in the UK today, is safe from such accusations.  If you are a parent of special needs or disabled children, your risk increases.  If your child (or you as the parent) have what is termed as an invisible disability (such as autism), the risk shoots higher still.  Ignorance of the presentation of some conditions that are classed as invisible disability, means that behaviours and family dynamics can be misinterpreted.  Unwillingness to admit they got it wrong, causes professionals to dig their heels in further and continue on the path they have chosen.  Dr Nigel Speight a doctor specialising in ME, gave an interview with a Dutch presenter on his own experience of supporting families falsely accused this way.  The Government is aware of this issue, but is protecting professionals who commit such state abuse, there is no accountability for these professionals and the hypocrisy that they are falsely accusing parents, yet causing the very thing they accuse the parents of, cannot go unnoticed or unchallenged.

I read a blog today, about the so-called Cinderella law, which could see parents face up to 10 years in prison for “emotional abuse” of their children.  I am angered at the fact that many special needs children in school, mainstream especially, are being emotionally damaged by their experience in the school environment, but this is not only ignored but considered as normal and acceptable.  Let’s list some environmental factors that social services might consider emotionally damaging to a child and due to which they would intervene:

  • showing children films and videos that they are too young for and are traumatic to them
  • turning a blind eye to mistreatment of the child
  • denying the child their basic human rights to drink water and visit the toilet when they need
  • brushing off the child’s concerns that are distressing to them, thereby denying them a voice
  • punishing the child unfairly
  • forcing the child to become aware of things they are not emotionally ready for
  • ignoring the child’s special needs and not adapting their environment accordingly
  • ignoring and denying the voice of the child regarding all factors in their environment

Rightly, you would expect social services to question the child’s parenting and possible emotional abuse of the child wouldn’t you?  Now take on board the fact that this is a list of just some of the environmental factors schools subject children to on a daily basis.  Not only is this accepted by the state, but it is actively condoned.  A disability social worker actually said to me “we won’t say anything against a school” and this was witnessed by an independent person.  If a child was showing such distress over their home environment as they do over school, social services would view this as serious harm and remove the child.  Yet a very senior person in social care told me, that my distressed autistic daughter must “get used to it” because “it’s a tough world for these children out there”.  Would they use this same justification if a parent had been responsible?

So why is there such a massive double standard?  How is such state abuse condoned?  The above list represents the average school day, and doesn’t even go into the cases where physical abuse and neglect have occurred in care homes and schools by their staff.  There are never repercussions for guilty parties either.

The state can trump up charges of “emotional abuse” at whim.  Many parents are finding that fighting for provision and support for their special needs child, triggers these false accusations as a result.  Here is an Autism Eye article on this issue: http://media.wix.com/ugd/58c8f1_211d0efb4ae842f5aba2e2d5b1519d42.pdf  Children can be removed from their innocent natural family and placed in foster homes and care placements in which they actually do suffer abuse.

I am sick of the tired phrase bandied about by social workers and their defenders “damned if you do and damned if you don’t”.  It simply isn’t true.  Failings resulting in child deaths, such as Victoria Climbie and Baby P are a result of the culture in social services of preferring to target decent, innocent families to fill up their caseloads with, rather than undertake challenging work with families where there may be violence, drug abuse, alcoholism and as Dr Speight says, “they’d rather sit drinking a cup of tea with a nice family than get chased off an estate by someone with a rottweiler”.

“Emotional abuse” seems to be the ‘in thing’ with social services, families are being wrongly broken up, scarring the children and parents for life.  Some families fortunately get their children back: http://www.mirror.co.uk/news/uk-news/council-unlawfully-took-autistic-teenager-4368205 but there must be many who don’t.  Secret courts and judges accepting biased and dishonest, cherry-picked and misrepresentative professional evidence without question, ensures that for many, there is no justice.

It’s not only about the moral panic prevalent within the UK, it’s about lack of understanding and corrupt professionals.  There must be no place in our society for such people to hold support roles.  Social workers do lie, I have direct experience of it.  They rest easy in the knowledge that they are untouchable, such that they have no compunction about doing so even when independent witnesses can verify they have lied.  It’s abuse of power and misfeasance in public office, not to mention contravention of the Data Protection Act 1998 and in some cases, breach of the Equality Act 2010.

Today I read an article: http://www.bbc.co.uk/news/education-29459303 “Disabled Childrens’ Behaviour Deteriorates at School”.  When the child is high-functioning autistic, they may restrain their distress about school whilst there and release it at home where they feel safe to do so, females in particular.  This means that professionals assume that because the behaviour is happening at home, the problematic environment is in the home.  Yet, contradictorily, if the child acts out at school, they also assume the problem comes from the home environment.

When parents ask for their child to be assessed for autism, oftentimes the professionals they encounter will send them on parenting courses and look at their parenting instead of just getting on and assessing the child for autism or other issues so that they know what they are working with from the start.  This not only ensures delays to a child getting support and prolonged stress on the family, but wastes public resources.

The UK is supposedly a democratic society, a society where justice prevails and families are supported to stay together.  Instead, punitive control, misuse of power and abuse of human rights seem to be taking control steadily.  We must fight this, not become complacent, not wait until it happens to you, before you stand up and speak out.  So I’ll re-use a quote I have used before:

“The greater the power, the more dangerous the abuse”.

CAMHS and autism: A story in pictures…

They say a picture speaks a thousand words, so this post will be telling a story in pictures…

THE CLAIM…

useless at job (CAMHS) 5useless at job (CAMHS) 6

 

AND THE REALITY…

useless at job (CAMHS)useless at job (CAMHS) 3useless at job (CAMHS) 2useless at job (CAMHS) 4waiting list incompetence incompetence 2CBToverpaid This is a story of thousands of children on the autistic spectrum, not getting their needs met, by a service that is unfit for purpose.  The NAS website has documents entitled “You Need To Know…” regarding evidence on this problem, as reported by thousands of parents UK-wide.

The UK Government is undertaking a Parliamentary Select Committee review on this national disgrace that is CAMHS: http://www.parliament.uk/business/committees/committees-a-z/commons-select/health-committee/inquiries/parliament-2010/cmh-2014/

Thought for the day (and  this one is directed at CAMHS):

Your Job

Autism Truth ~ a poem

Image  It’s a place of confusion, this world around
Not “getting” others, commonly found
Feeling misunderstood and not knowing why
Not seeing others eye-to-eye

Like an alien being, lost in their midst
Feeling communication stutter and twist
Telling the truth, such hostility abounds
They want lies and cover-ups to do the rounds

How strangely they judge from a mistaken stance
No capacity for any face value acceptance
You can’t be for real, or are mentally defective
Because they cannot see, your honest perspective

These games they play, like tricks and deceit
Is par for their course, is no big feat
What is it you want, or what can they get
Can’t they see, this is so wrong yet

In my mind I have a different place
I can retreat to when, I can’t take the pace
It’s a spiritual plane, evolved and knowing
Whilst all around this mad world is blowing

There is wrongness out there in all its forms
I will never, to their ways conform
There’s a purpose to this, a meaning to come
One day all the wrongness will be undone

Autism Unawareness

Lesser_hedgehog_tenrec_Echinops_telfairi Meet the “hedgehog” tenrec, which isn’t a hedgehog and is more closely related to the elephant.  It lives on Madagascan islands, where there are no hedgehogs – and if you saw a tenrec, your first reaction would be to think that it was indeed a hedgehog.  The tenrec is one of many examples the world over, of convergent evolution.  There are also a variety of creatures that evolve to mimic other creatures to avoid being eaten, and can naturally be mistaken for the real thing.  You may wonder why this subject is appearing on an autism blog, of all places.  It’s because of the widespread problem people on the autistic spectrum face, in being misdiagnosed and mistaken by health professionals as having mental illnesses.  It isn’t always what it may first appear to be and assumptions are dangerous.

I will give you some examples I have recently faced myself, with my (now ex) GP who had such abysmal lack of autism awareness it beggared belief.  I have always talked rapidly, not necessarily the whole time, but episodically.  It isn’t necessarily a stress reaction, sometimes I just have a lot to say and need to get it out before I forget what it was I was saying.  The perils of verbal communication.  Rapid speech is a known feature in autism.  And yet I was automatically considered mentally ill with severe anxiety with this trait being termed “pressure of speech” being used as justification by this GP.

Likewise, my habit of wearing earplugs on a cord around my neck, to protect my ears in the event of environmental noise due to auditory hypersensitivity (another known sensory issue in autism) this was listed as a reason for some sort of mental health problem.  This GP spent a long time falsely attributing my Asperger’s traits to mental health issues and circulating his opinion within a professional network.  This is a service failing of massive proportions.  Not only did he fail to understand my ASC traits as such, but he refused to provide me simple reasonable adjustments in accessing the surgery, in direct contravention of the Equality Act 2010 and the Health & Social Care Act 2008.  I did my best to educate him, by providing him with links and quotes regarding legal responsibilities on the practice, but it was ignored.  Instead of doing his duty, he falsely recorded details of consultations and misattributed my traits to severe anxiety.  This led to highly inappropriate and unwarranted referrals because he decided that as a parent, this meant my children were at risk, without any cause.

Both my children are on the autistic spectrum.  They are intelligent, extremely loved, very well-parented, clean and healthy children.  I had chosen to home-educate them for a period, before they were diagnosed as they were unhappy at school and the younger child was not coping there.  On the basis of me home-educating, (with, by my own choice, local authority approved provision) and without asking me any questions regarding how it was going and what we did for socialising opportunities, he jumped to erroneous conclusions, decided I was mentally ill with severe anxiety and whipped up a frenzy in the professional network.  I knew nothing at the time, only finding out much later when he telephoned me and accused me of exaggerating my eldest child’s school difficulties and of causing both children’s anxiety, ignoring documented evidence from my daughter herself and professionals she had reported it to, that it was her school causing her distress.  My eldest child hadn’t yet got her diagnosis, she had recently returned to school and was being bullied there and they were not supporting her anywhere near adequately, they were in fact reducing the level of support she got which was already only lip service.  She was having massive meltdowns every day after school, begging me to to remove her from the place that was causing her such distress.  In over 70% of autistic people, there are additional conditions, with anxiety being one of them.  This GP even asked my daughter herself whether I was causing her anxiety!  She said to me afterwards “It’s not you causing me anxiety, it’s the other way round.” in reference to me dealing with her frequent school-related meltdowns and supporting her.

In the meantime, this GP was calling multi-disciplinary meetings with professionals, again unknown to me at the time, citing potential for emotional harm from me to my daughter, because he was so determined to paint me as a neurotic, mentally ill person.  And bear in mind, that he knew that I had a diagnosis of Asperger’s syndrome.  Her persisted so much with this unprofessional, ill-judged and almost unhinged behaviour, that he was having an effect on other professionals who started to believe him, even with professional evidence available of what my daughter was going through at school being the cause of her difficulties.  The stress and trouble he caused for our family was enormous.  All because he was unaware about autism, and couldn’t think any differently from what his neurotypical, blinkered, text book mentality told him.  And all the time he was continuing this way, he delayed my child getting the right support because he had everyone barking up the wrong tree as to the cause of her difficulties.  Everything I was saying, was proven to be true because my daughter was telling clinical professionals what a terrible time she was having at school, and still I got no apology.

I subsequently found out he had made false recording on my health records when I got copies, and lied about his accusations against me.  He had even made false accusations against me of “hounding” him that he circulated to a network of professionals, because I sent him 2 emails on his NHS email address – which I checked with NHS PALS was OK to use and that it was secure.  I believe he had some sort of personality disorder to behave the way he did, which coupled with his autism unawareness was a recipe for disaster.  The shame and further injustice of it is, that I reported him to the regulatory bodies that ought to take action, and they refused – citing his “opinion” was not something they could challenge!  Never mind the lies he told, false recording he did and unprofessional comments to other professionals about me or his actions delaying my daughter receiving the right support.  And he has withheld some copies of records for the spurious reasons relating to his false interpretations of Asperger’s traits and trumped up safeguarding claims, because of his already disproven emotional harm accusations.

So you see, autism awareness isn’t just about people out there not knowing what autism means, when it’s professionals that have the power to wreak havoc on families and actually cause the very thing they are mistakenly attributing your autistic traits to – anxiety – it’s about huge injustices and abuse of power and something has to be done about this.  So my thought for the day is this:

the-greater-the-power-the-more-dangerous-the and I’ll throw this in for good measure: “Your assumptions are your windows on the world. Scrub them off every once in a while, or the light won’t come in.” ~ Isaac Asimov

The Curious Case of Lying

Lying emoticonLying is a strange concept to many people on the spectrum.  Because we tend to see things logically and have deficits in communication, we can’t understand why people lie… at least that’s how it is with myself.  If no-one lied, society would be a level playing field.  As it is, for someone with ASC, because we often don’t lie (and those that do often lie badly so people know they are lying) we don’t use those tactics neurotypicals use to achieve things.  Aspies are often bluntly honest, it doesn’t get you anywhere and can get you into trouble or make you unpopular.

Going for job interviews, even if you didn’t have to consider the chatting element, an Aspie struggles to sell themselves.  I was horrified when someone told me that most people lie on their CV’s for instance.  It would never occur to me to do that, and I would feel ashamed doing it, like a fraud.  I might be able to pleasantly state what my abilities are in an interview, but I couldn’t exaggerate them or invent things to sound interesting.  So someone like me, will automatically be hindered.  I recall reading somewhere that employers even expect people to lie on CV’s and at interview.  That confuses me even more, so they reward peoples’ dishonesty?!

It’s like complimenting, I compliment when I mean it, but others seem to do it to boost someone up or avoid hurting their feelings.  I will try to find a way of getting round it, like if someone asks me if I like their new hairstyle and I don’t, I might say “It’s not what I think that matters, if you are happy then that is the main thing.” or “I really loved that hairstyle you had [whenever], your hair is looking really healthy.”  So I will fish around in my head for alternatives.  If they said to me that they weren’t sure about their hair and they really wanted me to be honest even if I didn’t like it, then I would tell them politely as possible that I didn’t and why.  But it’s amazing the amount of people who say they want you to be honest and then don’t like it when you are!

Lying is a strange thing.  It probably has some roots in survival instinct (if that’s the case us Aspies would have been doomed!) or something.  I have read that learning to lie is an important life skill for children.  Even that shocked me.

Of course, there are some Aspies that lie, and I’ve read about some anecdotally, that lie compulsively.  Many of us have co-morbid conditions so there is nothing to say an Aspie can’t also have a personality disorder or something  giving additional traits, but some Aspies lie as a form of protection, having suffered negative interactions with others because of their ASC traits.  Some also live in an imaginative world that they talk of as real, which seems like lies.

Tony Attwood says that some Aspie children lie, because of having low empathy and not understanding the impact their lies could be having on others.  Then of course there is the issue of different perception.  What others think is lying in someone with ASC, may not actually be, they might believe what they are saying as that is their genuine take on the matter.  Atypical perception doesn’t necessarily equal incorrect perception, however.  I have read that lying comes later to children on the spectrum and often the lying is obvious and gauche, this was certainly true with one of my children, although the other started out early as a rampant liar, it was pretty easy to catch the lies out!

Lies confuse many people with ASC, having trouble understanding peoples’ motivations and not understanding they may not be telling you the truth, means we can get a huge shock when an outcome is something other than we expected, such as finding out we have been lied to.

If you want any scientific evidence that autistics are more honest than NTs, here it is: http://www.pnas.org/content/97/15/8734.full “increased discrimination of false memories in autism spectrum disorder” in other words, autistics have more accurate memory recall than neurotypicals (bang goes the myth of unreliable crime witnessing).

Also, autistics have the brain neurology for honesty:

http://www.news-medical.net/news/2005/10/18/13840.aspx …liars have decreased grey matter.

https://www.autismspeaks.org/science/science-news/cure-autism-now-science-summary-gray-matter-enlargement …autistics have increased grey matter

So, I will leave you with this quote:

Mark Twain

“If you tell the truth, you don’t have to remember anything.”
Mark Twain