“The Damaging Snowball Effect of Professionals’ Words”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

kindness-snowball.jpg

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

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

snowball money

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

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

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

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

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

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

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

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

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

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

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

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