SELF ID CAUSES PROBLEMS.

A guest post from Fiona Sinclair.

Neuroperversity

To all those who are aghast at the SNP’s decision to reserve the top spots on the Holyrood regional list for candidates who `self-id` as disabled, I sympathise, but have to tell you that this shoddy manifestation of identity politics has been evolving over some years. It may well be the case that you or your family members have had to jump through hoops to get diagnoses; sweat blood to prove to the DWP that you are not a fraudster; have struggled to persuade your local authority to provide an education appropriate to the needs of your child, but you will just have to thole the fact that it is now acceptable for an aspiring politician to self-identify as neurodiverse, OCD, Tourette’s Syndrome, or whatever disability or fictional disability takes their fancy, in order to give them a head start in landing a candidature. 

This kind of pauchling of politics happens at other levels too, and this blog has been written to illustrate how the whole concept of `self-ID` skews the construction of public policy, undermining legal and regulatory improvements for those who truly need them.

As a parent and campaigner for the rights of people with autism, I have been watching the watering down of autism diagnoses unfold for over a decade, to the point where `self-ID` is now accepted within the policy-making process in Scotland. The formal diagnostic criteria for Autistic Spectrum Disorder (ASD) resulted in a sex ratio of 1 female to 4 males. Instead of investigating why that might be, perhaps in terms of environmental causation, those involved in the policy-making apparatus of government decided instead to adopt a relaxed interpretation of diagnostic criteria, in favour of what are little more than personality traits.  The `neurodiversity` movement, which includes people who are the most highly functioning people with ASD and also those who self-ID as autistic, has championed a view of ASD as `a difference, not a disability`, but still expects to speak on behalf of people whose social interaction and communication is severely impaired. 

It is convenient for those who decide policy that they can use the general disability mantra of `nothing about us without us` to include those who are well able to speak for themselves, even if this means the exclusion of those who needs are much greater from policy and political consideration. Indeed, some of those styling themselves as `neurodiverse` are quite happy that people with `bad` autism should be re-categorised as having a Learning Disability, even though those `lower-functioning` people with ASD need services that take account of their specific needs as autistic people. Giving priority to the low-hanging fruit of those claiming neurodiversity is cheaper and is used as social blackmail against the parents of people with autism who should otherwise be entitled to a say in how policies are formed. From my own experience, this blackmail reached its nadir during the farce that was the Independent Review of Learning Disability and Autism in the Mental Health Act (IRMHA), which was ostensibly set up to review the current inclusion of people with these disabilities within the Mental Health Act, under the category of `mental disorders`.

My small, self-funded group, Autism Rights, campaigned for several years to end the powers of compulsory treatment of people with ASD and Learning Disabilities under the Mental Health Act. As the Act currently stands, people with these disabilities can be compulsorily `treated` with psychotropic (psychiatric) drugs, just for being disabled. Because ASD is primarily a diagnosis based on observations of behaviour, people with this diagnosis are proportionately at greater risk from compulsory treatment under the Act. Some of the most active members of Autism Rights have sons who have been compulsorily treated for decades – this is not unusual within the mental health system. The only `treatment` they ever receive is drugs, even though these drugs are brain-disabling and have life-shortening effects on their health when taken longer term. We are not alone in considering the long term use of these drugs on people who cannot change the way they are as inhumane and degrading treatment and contrary to the UN Convention on the Rights of People with Disabilities (UNCRPD). These drugs can also kill. Oliver McGowan was a young lad of just 18 years old who had a fatal reaction to these drugs. His brain swelled up so much that it started to come out of the base of his skull. This reaction is called Neuroleptic Malignant Syndrome and is a well known and highly dangerous effect of treatment with antipsychotic drugs.

You can read more about the Autism Rights’ campaign to change the Mental Health Act on our website. In particular, I wrote 2 articles that were pivotal in pressing our case, as was an FOI that I submitted to the Mental Welfare Commission, which revealed that there is not even a body count of those who die in the mental health system.

I submitted 4 Amendments in total to the 2015 revision of the Mental Health Act. The Cross Party Group on Learning Disability, to whom I had given a talk a few years before on this very subject, pipped us to the post with our main Amendment, which was asking for a Review of the Mental Health Act, to consider the removal of people with ASD and Learning Disabilities from the provisions of the Act. Our other Amendments asked for data and statistics on deaths, suicides and `adverse events`, including assaults, to be collated and published at national level; for FAIs on deaths and suicides on those subject to compulsory treatment within the mental health system; and for investigation of the use of psychotropic drugs in the mental health system.

Our amendment on data and statistics was accepted as part of the 2015 Act; our amendment on FAIs has resulted in an ongoing review; and our amendment on psychotropic drugs was supposed to form part of the IRMHA review, but the review team decided that this issue was best dealt with by clinical guideline committees, thereby ignoring the reason for its inclusion in their remit. This was not the only thing they ignored – they ignored all of the evidence we supplied and formed their advisory groups supposedly on the basis of individual expertise, but refused to state what that was, even to the extent of refusing to supply any biographical details whatsoever. As far as we have been able to tell, not a single autistic person who has experience of compulsory treatment under the Act was chosen as an advisor and not a single parent of such a person was chosen either. The only `lived experience` that the Review team were interested in was that the person was on the autistic spectrum.  At least 2 of the advisors chosen were from one charity that represents very highly functioning people with Aspergers Syndrome that is a champion of neurodiversity. This charity formerly employed one of the 3 person Review team as a Development Worker. Other advisors representing people with ASD included someone who described himself on his Linkedin page as `Advisor to the Mental Welfare Commission for Scotland` (one of two organisations running the review); a full-time advisor for the charity Scottish Autism and a promoter of the relaxing of ASD diagnostic criteria to encompass more women; and an Autism Engagement and Participation Officer with the Autism Network Scotland.  In other words, people who have employment within or are very closely associated with what I term the `autism industry` in Scotland.

The conclusions of the review were that autistic people still needed `protection` – totally missing the points we made, backed up by `lived experience` and thorough and comprehensive research, that the Mental Health Act’s powers to inflict forced treatment on people with ASD are not in any way protective. When those who are tasked with reviewing something as important as the compulsory treatment of disabled people within the mental health system quite deliberately exclude those who actually know about that system, they are excluding the information those people are willing and able to provide. Those who have experienced compulsory treatment have suffered the extremely negative effects of psychotropic drugs, which are particularly acute for people with ASD, and the  associated injustices of that system. Their families are their only human rights defenders within that system and act as their representatives. Some give their lives to battling for their sons (and it is mostly sons), endlessly researching and writing to try to convince the psychiatric profession that the drugs are simply making things much worse, not better. Whilst people who are `neurodiverse` may indeed be very different from most of society – there are plenty of environmental contaminants that are known to have neurological effects – their expressed need for support for mental wellbeing is irrelevant in the context of the Mental Health Act’s powers of compulsory treatment.

When you are forming public policy, it really is a matter of life and death whose views you choose to take account of. More than 5 years on from submitting amendments to the 2015 revision of the Mental Health Act, and more than 7 years from my FOI on deaths in the mental health system, there  is still no annual publication of statistics for deaths or suicides of those subject to compulsory `treatment` in Scotland.

FIONA SINCLAIR.

Iain Lawson writes

My thanks to Fiona for her essay and I hope I will get a follow up article in the near future. I appreciate this issue, I like many were not keen on the self ID idea but I was unaware of the problems it can cause down the line. I found the article educational.

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