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.

If you would like a free subscription to this site these are available from the Home and Blog buttons on the top right hand side of this article. You will be most welcome.

47 thoughts on “SELF ID CAUSES PROBLEMS.

  1. Thank you for this so painful article, I had no idea about much of what is revealed and can well understand the dismay felt by people dealing with such distress to find their harsh reality trivialised for political advantage. Maybe there is more we can do to offer support to Autism Rights? It is indeed tragic if we have been forced into neglect of the need for reform for the really distressed in defending political integrity against an invasion of entryists. What else, I wonder has gone under resultant to their attempts to garner their shoddy fame?

    Liked by 6 people

    1. Absolutely, Ros – there’s so much that should be receiving attention from politicians, just within services for people with autism, but isn’t. Outwith that, I can tell you that I spoke at an event over 10 years ago where there was a speaker from the `Changing Places` campaign. This campaign is to press for changing places for families and carers of adults who are profoundly disabled. This woman described how, if she wanted to take her son out of the house, she would sometimes have to change his adult nappy on the toilet floor, because there were no suitable facilities. It took the Scottish parliament another 10 years to decide to give their backing for these facilities – but I doubt that this will have had much effect, in the wake of cuts to local authority budgets. It’s not as if there are not many pressing needs for financial and political support in Scotland.

      Thank you so much for your kind words – and you can support Autism Rights by bring this blog to the attention of politicians. I will endeavour to put more information up on our website and I’ll be posting some references to further information in these comments and replies. I intend to do more writing on this and other subjects which will go online in the near future. I’ll certainly keep Iain posted.

      Liked by 2 people

  2. As a grandmother of five year old twins who have both been diagnosed as autistic I find this piece terrifying. I know my daughter has significant worries about what might happen to the boys as they get older should she and their father not be alive to support them.
    I thought the Westminster government was their enemy because of the cuts to support for the disabled and had high hopes that our Scottish government would be different but this has made me see that they are really no better off.
    I fear for the future of my two gorgeous very bright, but autistic grandsons.

    Liked by 4 people

    1. fahobson – it’s a terror faced by many parents. It is because there are no standards of competence in autism services that we end up with a situation where there is very little in the way of service provision that is autism specific. There is an expectation that our sons and daughters should just `fit in` with services that are designed for people with Learning Disabilities. It goes right the way through, and has not improved down the years. However, there is still money being doled out inappropriately and generously in other areas – and I’ll go into this in my next article, so please keep an eye on Iain’s blog for this.

      If you’d like to get in touch, you can contact me through the website. In the meantime, here are 2 articles that I wrote back in 2015 that give a good overview of what was happening then – and still is happening – to people with autism within the mental health system:-

      https://newsnet.scot/citizen/autism-and-the-madness-of-the-mental-health-act/
      https://newsnet.scot/news-analysis/we-should-face-up-to-the-madness-of-the-scottish-mental-health-system/

      Liked by 2 people

  3. Absolutely outrageous. Everything this party does now is driven by insanity and I can well understand the outrage expressed against any atom, Dick or Harry being able for the most obscure insignificant reasons being able to self ID as disabled.

    Can you imagine the free for all if you could claim extra benefit or a blue badge by the simple expedient of self ID.

    Anyway, the process, the rotten process is flawed. Flawed to the extent that Counsel advising the party confirmed that legal challenge will result in disaster.

    Ah well, legal challenge it will be. About that there seems little doubt. More legal costs for any remaining party members, or in fact party.

    Liked by 7 people

    1. Those legal costs are fair mounting up, aren’t they Willie? Still, it’s only the public who will pay for them – either through their taxes, or through the loss of finance to services that they need.

      Like

  4. I have always feared that legislative latitude designed to assist those in some way disadvantaged would be high jacked by those seeking opportunistic openings in society.

    The “good intent” of many as been manipulated by a selfish few.
    The excellent article by Fiona highlights one. Another is middle aged men becoming top women athletes. We have already seen the manipulation of the electoral system.

    I detest the various degrading assessments used to award payments for disability but I also detest those who abuse relaxation of such assessments.

    Should a 40 year old, 6’6″ 20 stone self declared women be playing Rugby with young Women? Should someone who is a current councillor, states she has worked in media suddenly self declares as disabled due to dyslexia to achieve pole position in list selection.
    Note: we also have candidates with confirmed disabled credentials not declaring that disability because they do not consider it an issue in being a MSP.

    Unfortunately when some are seen to gain advantage via self assessment it doesn’t take long for those with poor moral standards to rush to copy.

    What is currently happening is no different to those who use fake blue badge stickers in their cars.

    Liked by 7 people

    1. Many thanks for your compliment on my article, Julia. There are always opportunists, especially amongst those in the political classes. They have, however, seldom been quite so brazen or aggressive in that opportunism as they are today. Having been kicking around politics for some while, I’m aware that some of the people burnishing their `progressive` credentials these days have been very much lacking in these attitudes in the past.

      One thing we should all remember, however, is that in the first half of the 20th century, eugenics was seen as `progressive` amongst the intellectual and political elite.

      Like

  5. Thankyou for sharing. Very informative.

    I have good friends with a severely autistic son. They are continuously struggling with authorities of various kinds and always in search of funding.

    It beggars belief that people who self ID as autistic receive preferential treatment.

    I have never been a fan of identity politics. Here is more grist to my mill.

    Liked by 2 people

    1. I’m glad that you appreciated the article, Duncan. Please check back for further information in the comments. I’m really heartened by everyone’s comments. It is great that people do `get it` that this whole self-ID thing started a while back and has had real impacts on policy and services. Autism can be difficult to diagnose, especially at the higher end of the spectrum, with people who have High Functioning Autism or Asperger’s. However, when the political classes use those who are at the higher end of the autistic spectrum (who are, because of their nature, prone to manipulation) to exclude parents of people who are not capable of representing themselves, it is nothing less than wicked.

      And yes, it is ALWAYS a struggle to get appropriate services, if you can get them at all.

      Liked by 1 person

  6. As a teacher, I worked with many young people who had ASD. I witnessed the struggle they, and their parents endured to find appropriate methods of accessing the curriculum in a way that suited their/ their children’s needs. Similarly, those young people with dyslexia. It makes my blood boil to see opportunists, like those Julia mentions above, trivialise their struggle, in order to achieve their own self advancement. An individual, who uses fair means or foul, is not someone I wish to see sitting in the Holyrood chamber.

    Liked by 6 people

    1. Annie – Autism Rights initially campaigned on education, but we switched to mental health because it was such a serious issue for our core membership. My own experience so far is of the way the education system refused to meet the needs of my son, not because they couldn’t, but simply because they did not want to. My husband is a recently retired teacher – he took early retirement before the pandemic hit (and we thank our lucky stars he did) – so we know that, all too often, educational provision is dependent on the quality and morality (or otherwise) of the school and those who run it, as well as the local education authority.

      Liked by 1 person

  7. This was a grim, but not at all surprising, article to read. It is times like these that I’m very glad to not have children.

    Liked by 2 people

    1. I did ask for a meeting with her a while back, but this was not considered necessary. I’m quite happy to continue writing, as my meetings with Ministers have been less than satisfactory, as far as I’m concerned. I would be happy to do a Zoom call though, as this is much more convenient for me – no 180 mile / 5 hour round trip, no cost of diesel, no having to rush out and take my son with me, no being forced to listen to a civil servant tell me how to suck eggs ….

      Liked by 1 person

  8. Thank you Fiona. I’m sure it was hard for you to write but your article was an excellent window into the world of folks who have to fight so hard for rights we so unthinkingly enjoy.I saw, in an OT capacity, the struggle some families have to get much needed support and funding. And thus it incenses and appalls me when I read of some people DELIBERATELY self-IDing & thus willfully ‘misusing’ certain conditions & diagnoses to further their own self advancement. Thank you for sharing your experience with us.

    Liked by 3 people

  9. Great article if a little worrying for me. Fiona I was interested in joining Autism Rights group but couldn’t register on your website?

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    1. Duncan – can you contact me through the website – or through Iain, who has my email address? Are you a parent of someone with autism, or someone with an Autistic Spectrum Disorder (ASD) diagnosis? We don’t give membership to others, but could give associate membership. I apologise if your message/ email to us didn’t get replied to – it could have got lost, or put in spam – I don’t know.

      Like

  10. Thanks to Fiona for an excellent article.

    I wasn’t aware of the compulsory treatment of those with autism, or the use of anti-psychotic drugs. Compulsory treatment under the mental health act is not something to be used unnecessarily – and it sounds like it is. This is quite disturbing news.

    So instead of sorting things for the real needs of people – and to actually assist those with real disabilities – the ScotGov has decided on some weird new-age doctrine of self-ID, for those that are not disabled enough and can speak for themselves, so they can pay lip service to ‘doing good’ for society?

    The litany of faults this government has, that are only being revealed in dribs and drabs (for all the MSM appears to be critical, it seems they are not critical on the things that really affect our lives) – e.g. we hoped and believed they’d be taking over some of the social services for disability benefits, and how they crowed about it, but STILL haven’t set it up, or even close – if they can’t do that much I certainly don’t hold out hope of this administration ever being capable of bringing about independence: they don’t have the skills. No idea why anyone still thinks they do.

    Fiona, your proposals should never have been a battle for you – especially just to get national statistics – and compulsory treatment should only ever be a last resort thing for anyone, in this supposedly ‘caring’ Scottish Gov’t – they’ve turned out to be snakes, and are causing real harm to our society. Well done for being persistent and keeping the battle going, you are doing a real service for society, and I wish you success.

    Liked by 2 people

    1. Thanks for your very astute comment, Contrary. You have put your finger on a number of key issues here.

      I’m very aware that few people understand that the power to force treatment only applies to the mental health system – everything else is covered under the laws drawn up post World War 2 – the Nuremberg Code. To force treatment, you are supposed to take out a Compulsory Treatment Order (CTO), which range from a 24 hours Emergency order, up to several weeks – but these can be and often are extended.

      The deep irony of the fact that such treatment applies only to the mental health system is that mental health diagnoses are based on professional interpretation of categorisation of mental disorder (which covers both mental illness and mental disability, such as autism). This categorisation, based on the Diagnostic and Statistical Manual of Mental Disorders (DSM), has been through a number of iterations – now at number 5 – which are now increasingly being questioned, even within the psychiatric profession. There is also the International Classification of Diseases (from the WHO), which covers all disease, but the latest revision, number 10, follows much the same progression as the DSM in the part that applies to mental health.

      My argument is that, irrespective of the fact that mental `illness` is diagnosed without any recourse to physical tests – really just someone’s opinion – people who have a disability that will not be cured should not be subject to forced treatment. I am also very aware of the case against the use of these drugs for anything other than very short term treatment for the most severe forms of mental illness – but even this is being questioned (see Robert Whitaker’s output, chiefly `Mad in America` and `Anatomy of an Epidemic`). I’ve added on a few weblinks at the end of this comment for further reading, which covers these issues in more depth than I can here. One other point to make is that psychotropic drugs are a major source of income to the pharmaceutical industry. They are now the largest group of drugs prescribed in the USA and are prescribed to an alarming and growing number of children and adults in Scotland, as per this document:-

      Click to access 0708218_hscp_strat_plan_2018_20v13.pdf


      – 20 |Population health
      `20% of the South Ayrshire population is prescribed drugs for anxiety, depression and or psychosis compared to the national rate of 18%’

      Bearing in mind that these drugs are harder to come off when used for more than a few weeks, and you have a major health problem – you have created a `chemical treadmill` that people often cannot get off.

      A few years back, the rate of prescription of psychotropic drugs to people with Learning Disability in England was found to be 68%. There is no figure for Scotland that I know of.

      Just a few weblinks for further information on mental health diagnostics and the drugs used to `treat` people with mental disorders:-

      Click to access Unrecognised-Facts-about-Modern-Psychiatric-Practice.pdf

      https://davidhealy.org/psychiatry-gone-astray/
      – Editorial note: We follow up the Guilty post last week with a piece written by Peter Gøtzsche that has caused a stir in Denmark and provoked some of the Danish professors he critiques to respond.

      https://www.nimh.nih.gov/about/directors/thomas-insel/blog/2013/transforming-diagnosis.shtml

      The Rosenhan experiment – https://www.bbc.co.uk/sounds/play/b00lny48

      https://samizdathealth.org/the-lessons-of-study-329-how-fraud-in-psychiatric-drug-research-got-normalised/

      https://study329.org/

      https://www.madinamerica.com/2020/11/tardive-dyskinesia-brain-damage/

      https://www.madinamerica.com/2013/08/long-term-antipsychotics-making-sense-of-the-evidence-in-the-light-of-the-dutch-follow-up-study/

      Like

      1. Tons of information here, thanks Fiona! I’ll try and get through a lot of it. (So much happening just now, time is short)

        There are many issues like you say – and a major one is that diagnosis appears to be an art form, and the first point of call, like for nearly all doctors, are drugs for treatment (often with very debilitating side effects, that require a whole cocktail of drugs to counteract). These are needed for serious mental illness, but not ideal for them either. Life-shortening usually, and unpleasant to take.

        There does need to be a distinction between neurological disabilities and mental illness (when it becomes a disability) – but I’ll read more before giving my opinion on that – I really had thought they were treated as entirely separate, so I’m still a bit horrified.

        Liked by 1 person

  11. This new Self ID criteria of disability is nothing short of immoral, amoral and bloody shocking. Tell me who in their right mind would vote for such charlatans? Equally it weakens the SNP 1 & 2 considerably does it not? I had to battle for 2 years to have my cancer diagnosed. My factor seems to think my neighbours have the right to veto the installation of a handrail that would help me get up and down a flight of stairs. We, genuinely disabled people, have a helluva battle to assert anything…we certainly don’t feel entitled to put ourselves up for election purely on the basis of our disability. If the latter is our programme and we’ve shown commitment to such a programme then that’s totally justified and good on you, but to self ID as disabled is a bloody insult to those who are genuinely so. When is this lunacy going to end for goadsake????

    Liked by 3 people

    1. You should never have had to battle for 2 years to have your cancer diagnosed – that is just horrendous – but, sad to say, there are way too many medical horror stories out there – and too many idiots who deny that there are such problems in Scotland. I even had one well-known indy blogger imply that I was mentally ill, because I said that there were aspects of the Scottish mental health system that are worse than the English system.

      That is the dreadful thing, Moira – everyone who truly has a serious health condition or disability is treated as if everything is hunky-dory in Scotland, irrespective of the facts. That leaves the North British establishment free to invent fictional grievances, with the threat of social death if you demur. In my mind, if you claim that everything is great or, in bureaucratic language `improving`, what precisely is the point in independence?

      This lunacy has been building up for many years, and my next blog will give some more context to this.

      Like

  12. Thank you to everyone for your kind and supportive comments. I’ll reply to any questions you may have and will post further comments with more information, but first I’ll supply some basic references for you and a short biography of myself.

    Biography – I write here in a personal capacity, as an activist and mother of a young man with autism. I was a member of the SNP from 1987 until 2000, was an Elected Member of National Council and a member of the Environmental Policy Review Committee of the early 90s that based the party’s policy on the Brundtland Report. My environmental activism includes taking part in a blockade of nuclear waste at the Kessock Bridge at Inverness and campaigning on toxic waste. I run Autism Rights as a grassroots campaigning group, with no intention of seeking charitable status, giving us the freedom to speak out as we see fit. I will expand on the importance of that latter point in the follow-up to this blog, which Iain has very kindly offered to post on his blog for me. The title of this follow-up is `Charity begins at home`.

    The Autism Rights website is here:- https://www.autismrights.org.uk/
    You can view some of the work we’ve done over the years at this part of the website:- https://www.autismrights.org.uk/track_record
    Our Facebook address is:- https://www.facebook.com/Autism-Rights-Scotland-112437135513731/
    Some of our Freedom of Information requests are available here:-
    https://www.whatdotheyknow.com/user/autism_rights

    Liked by 2 people

  13. You are an inspiration, Fiona. It never ceases to amaze me and cause me great disappointment to see how overly ambitious people are willing to exploit anything and everything that comes along for their own sense of entitlement. So many of these young people appear never to have studied moral philosophy during their school/university careers. It teaches us about privileges and obligations, the two-sided social contract where we are not supposed to take from others that which is rightfully theirs and they are not supposed to take from us what is rightfully ours. It is a balanced way to run society and it works when there are ‘gates’ in place to prevent exploitation and abuse. Self-ID is a complete negation of that societal ‘gate’, in any sphere, which, admittedly, can be rather high at times, and does require adjusting now and then, but taking it away completely is ultimately counterproductive and leaves people like you, and your boy, stranded on the wrong side of that ‘gate’. Proper records and statistics need to be kept for a host of reasons, and the loss of these will be another casualty of this madness that seems to have infected our political leaders. I wish you well.

    Liked by 2 people

    1. Thank you for your kind words, Lorna. It isn’t just Moral Philosophy they could do with a course in – it’s logic and General Philosophy, too. They really are hard of thinking – or even thinking how their behaviour looks to voters. To be perfectly honest with you, it’s the people who take advantage of the social blackmail that are those who are most at fault. My son and our family didn’t lose out because of self-ID, but because of the `brutes in suits` as I call them – the public servants who abuse their power, knowing full well that enforcement of the law is virtually impossible, given the lack of legal aid for civil cases, particularly in Scotland. If there were enforceable standards of competence, which did not require legal action, we would all be living in a very different place. Here are some weblinks to further information on self-ID of autism:-

      https://studentnewspaper.org/in-conversation-with-autistic-mutual-aids-society-edinburgh/
      – AMASE incorporates those who SELF-DIAGNOSE with autism

      `When you say that you’re involving newly-identified as well as newly-diagnosed autistic people, does that mean AMASE believes self-diagnosis is valid?

      There are so many barriers to getting diagnosed. There are parts of Scotland where there’s no avenue to getting a diagnosis from the NHS. In Edinburgh, we’re a bit luckier, but it still isn’t easy. There are a lot of assessment teams and diagnosticians who don’t understand different ways of presenting as an autistic person, why an adult might want a diagnosis, and why it might be valuable. You must usually both fit the diagnostic criteria and for it to be judged a significant problem for you, in order to be diagnosed, even though the levels of support we need might vary depending on our life circumstances. Some people may identify with autistic traits and connect with our community but may decide not to seek a diagnosis, as it can be a stressful process. It might even be that you just can’t make the initial phone call that’s required to get a referral. 

      The way I think about it is, if somebody is connecting with the community, they identify with many autistic traits, and it’s helpful for them, that’s all that really matters. If connecting with the community helps them figure out things about themselves, coping strategies, and finding a community, then self-diagnosis is absolutely valid.` END OF QUOTE

      COMMENT – The above group, which admits that it includes those without an ASD diagnosis, is at the centre of policy-making in Scotland.

      SEE ALSO:-
      https://www.thinkingautism.org.uk/labour-party-neurodiversity-manifesto-identity-politics/
      https://www.thinkingautism.org.uk/autism-acceptance-and-false-dichotomies/

      https://link.springer.com/article/10.1007/s40489-016-0085-x
      – Review Paper Open Access Published:
      ASD Validity
      Lynn Waterhouse, Eric London & Christopher Gillberg 
      Review Journal of Autism and Developmental Disorders volume 3, pages302–329(2016)
      SEE ALSO:-
      https://www.bbc.co.uk/sounds/play/m000mcyj
      – female `masking` and gender non-conforming, unable to deal with social aspects of jobs, not the `bad` side of autism, less affected by herd mentality – main criterion of female autism, according to the `experts` …. (I must be autistic, then!) They talk about `their authentic self` and being a `disability ally` and having special interests.
      AND:-
      https://questioning-answers.blogspot.com/2016/08/once-again-what-does-autism-spectrum-quotient-aq-measure.html

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  14. Perhaps not surprising, I have yet to find a blog that dares to delve into (what I call) the very problematic perfect storm of psychological/emotional dysfunction — a debilitating combination of autism spectrum disorder and significant adverse childhood experience trauma (and perhaps even high sensitivity) that results in substance use or abuse. This, of course, can also lead to an adulthood of debilitating self-medicating.

    Also, I strongly feel that not only should all school teachers have received ASD training, but that there should further be an inclusion in standard high school curriculum of a child development course which in part would also teach students about the often-debilitating condition.

    It would explain to students how, among other aspects of the condition, people with ASD (including those with higher functioning autism) are often deemed willfully ‘difficult’ and socially incongruent — and mistreated accordingly — when in fact such behavior is really not a choice. Maybe as a result, students with ASD feel compelled to “camouflage”, a term used to describe their pretending to naturally fit in, which is known to cause their already high anxiety and/or depression levels to worsen.

    While some other school curriculum is controversial (e.g. SOGI, especially in rural residential settings), it nonetheless was implemented. The same attitude and policy should be applied to teaching high school students about ASD, the developing mind and, especially, how to enable a child’s mind to develop properly.

    Liked by 1 person

    1. fgsjr2015 – I’m going to have to disagree on a number of your points. This is Scotland, not the USA, and this is not what my blog was about.

      There need to be standards of competence in all autism/ ASD services. Training all teachers to teach children with all the disabilities there are is impractical and will not result in a quality education for children. Far better than `training` – which is usually no more than a few day release courses, if children are lucky, is actual qualifications. At the moment, those teachers who take qualifications in special education do post-job quallies, which means they are teaching and learning at the same time – not good enough. There should be centres of excellence within each local authority area for disabilities like ASD – the idea of educational `campuses` with more than one school is well-established. Teaching child development in school would not be impossible, but would be better given as an educational package to parents to be.

      There’s no mystery why people with ASD end up in the mental health system. It’s any one or combination of factors:- years of stress caused by poor to non-existent services; abuse of them by the system that is supposed to care for them (e.g. Winterbourne View, Mendip House); the effects of psychotropic drugs (as I’ve stated in other comments, 68% of those with Learning Disabilities in England are on these drugs – we don’t know the figures for Scotland and people with autism); physical ill-health that is overlooked (known as diagnostic overshadowing); misdiagnosis by psychiatrists. As a whole, it should be a human rights scandal, but the political classes have other fixations. Some weblinks:-

      Click to access left_behind.pdf

      https://www.dailyrecord.co.uk/news/real-life/patients-hidden-away-years-lennox-1832649

      https://prowinski.wordpress.com/investigations/

      https://www.scotsman.com/news/politics/scotland-s-child-abuse-inquiry-to-investigate-additional-institutions-1-4765709

      https://www.dailymail.co.uk/health/article-6610761/Teenager-sent-health-caged-killers-rapists.html

      https://www.dailyrecord.co.uk/news/local-news/film-maker-tell-incredible-story-7668554

      https://www.olivermcgowan.org/

      – #Oliverscampaign
      Sadly, Oliver never woke up. The Olanzapine caused him to develop Neuroleptic Malignant Syndrome. His brain swelled so badly, it was bulging out of the base of his skull and he died.

      https://www.heraldscotland.com/opinion/14412099.we-need-a-change-in-attitude-towards-those-with-autism/

      https://www.facebook.com/Autism-Rights-Scotland-112437135513731/

      https://www.facebook.com/groups/216083389717093/about

      https://www.sundaypost.com/fp/mother-pleads-for-release-of-autistic-son-as-he-spends-another-birthday-locked-up-in-scotlands-maximum-security-hospital/

      https://www.sundaypost.com/fp/i-wasnt-allowed-to-see-him-for-three-months-his-condition-made-me-weep-mother-urges-release-of-autistic-son-being-treated-at-carstairs/

      https://www.sundaypost.com/fp/one-little-step-followed-another-and-no-one-would-listen-to-us-and-no-one-would-speak-to-us-and-all-the-little-steps-took-us-into-hellrestriction-on-an-individual-should-be-the-minimum-restriction-ne/

      https://www.pressandjournal.co.uk/fp/news/aberdeenshire/1762744/calls-for-urgent-review-into-detention-of-adults-with-autism-at-carstairs/
       – Calls for urgent review into detention of adults with autism at
      Carstairs
      by Stephen Walsh June 3, 2019

      https://www.pressandjournal.co.uk/fp/news/aberdeenshire/1618495/majority-of-under-18s-sectioned-under-mental-health-laws-have-autism/
       – Majority of under-18s sectioned under mental health laws have autism
      by Tom Peterkin
      November 27, 2018, 4:28 am
      More than half of under-18s sectioned under mental legislation in Scotland have some form of autism, a North East MSP campaigning for a constituent trapped in Carstairs has discovered.

      https://www.pressandjournal.co.uk/fp/news/aberdeenshire/1685147/mum-claims-autistic-sons-phone-calls-from-carstairs-have-been-restricted-after-she-spoke-of-his-plight/

      https://www.thescottishsun.co.uk/news/3804372/adhd-patient-kyle-gibbon-carstairs-state-hospital-mum-campaigning-scottish-government-probe/

      https://www.dailymail.co.uk/health/article-6610761/Teenager-sent-health-caged-killers-rapists.html

      https://www.pressandjournal.co.uk/fp/news/highlands/1621690/autistic-womans-family-call-for-investigation-after-she-was-detained-under-the-mental-health-act/
      – Autistic woman’s family call for investigation after she was detained under the Mental Health Act
      by Reporter
      December 1, 2018

      https://www.disabilitynewsservice.com/victims-of-inpatient-restraint-and-seclusion-describe-inhumane-care/

      Liked by 1 person

      1. Thank you for the reply and the worthwhile information within.

        However, I still feel that (physical and mental abuse commonsensically aside) students could be taught the potentially serious psychological repercussions of the manner in which they as parents may someday choose to discipline their children; therefore, they may be able to make a much more informed decision on the method they choose to correct misbehavior, however suddenly mentally clouded they may become in the angry emotion of the moment.

        And being that their future children’s sound mental health and social/workplace integration are at stake, should not scientifically informed parenting decisions also include their means of chastisement?

        Our young people are then at least equipped with the valuable science-based knowledge of the possible, if not likely, consequences of dysfunctional rearing thus much more capable of making an informed choice on how they inevitably correct their child’s misconduct.

        While such curriculum can sound invasive, especially to parents distrustful of the public education system, I really believe it’s in future generations’ best interests.

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  15. In the specific policy areas I have been concerned with over many years, it would appear that Holyrood has been subject to a high degree of ‘regulatory capture’, in which private and/or agency (i.e. lobbying/vested) interest supersedes public interest. This also seems to be the case in this instance as set out by Fiona.

    I would propose two main explanations for this unfortunate outcome. One, a still rather immature parliament occupied by elected members who for the most part have very limited experience or expertise in specific policy areas they are dealing with and legislating on, and who therefore depend on and prioritise private and/or agency interests (aka ‘key stakeholders’) and civil servants to develop and refine policy options for them. Second, a UK civil service that strongly values its generalist ‘skills’ and which is usually lacking in specialised expertise in relation to specific areas of policy it is tasked to deal with.

    In some 30 years of trans-national collaborative EU research project work I was always struck that civil servants in many other EU states had at least a MSc and often a PhD in the specific policy area they were dealing with, whilst this was not generally the case with UK civil servants, the latter therefore holding a much more limited grasp of the scientific and theoretical basis of the area of policy they were tasked with making informed decisions about, and hence more prone to take on board the views of private and/or agency interests.

    This in my view perhaps helps explain why much policy making in Scotland more often than not goes awry.

    Liked by 1 person

    1. Yes, I would agree with your points Alf. My next article will look at the relationships between the charitable / voluntary / Third Sector and the parliament in the context of disability and mental health. You and I have been commenting on these issues for some time, as others can see from our comments on these articles:-

      https://bellacaledonia.org.uk/2016/09/22/tunnelling-out/
      https://bellacaledonia.org.uk/2017/05/28/silence-listening-to-silence/

      I would particularly like to draw people’s attention to my comment on the sharing of personal health data with the pharmaceutical sector (in `Tunneling Out`). Although the weblink has since disappeared, this situation still persists in Scotland.

      Liked by 1 person

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