“Public Body Behavioural Policies Discriminate Against Autistics”

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

In law, being vexatious means…

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

But in general terms…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And it’s against the law!

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

“What’s indirect discrimination?

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

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

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

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

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

Public bodies be warned!

 

“Fluffy” Forums Exclude Autistics

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

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

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

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

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

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

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

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

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

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

State Kidnapping of the Children of Autistic Mothers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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