Photo: Dinah Murray with Ann Harber
This is the fourth of the NAP think pieces about the future we’d like to see in relation to autism; I salute its predecessors and hope to live up to them as I apply The Autism Dividend’s principles to removing barriers and institutionalised stigma. I look at how autistic dispositions of individuals get viewed as causing the barriers or inviting the stigma that hold us back, yet the best way to address these may be via social adjustments, not by pathologising us as problem people. Mutual misunderstanding is part of the problem (Milton 2012 dubbed this issue the ‘Double Empathy Problem 1 ).
The latest survey about the impact of the Autism Act (20162) shows that more obviously able autistic people, not seen as learning disabled3, are even less likely to get the help they need than those who are seen as learning disabled and that the levels have declined since the Act was launched. A main theme of this article, especially in its second half, will be those marginal and under-supported people, and how to reduce or remove the barriers that stop them contributing their powerful focused interests to the benefit of all.
There is potential for extraordinary – atypical – levels of productiveness, resourcefulness and creativity in many autistic people when they are pursuing concerns close to their heart. As Hans Asperger put it, we tend to have “A special interest which enables [us] to achieve quite extraordinary levels of performance in a certain area” 4 . However, there is also an opposite extreme to that person-on-a-mission super drive, one of subjective powerlessness and incapacity to think or act effectively. These states can alternate at polarised extremes within the same individual, with little or no middle ground, and have the subjective quality of catastrophe. Luckily such crises are usually self-limiting 5 and unpressured time naturally restores the individual’s dynamism. These extreme differences are related to the spiky – all or nothing – interest / skill profile which is criterial to the diagnosis, and any autistic person may oscillate abruptly between them.
To get a feel for the contrast between these states, imagine walking happily through a favourite place, birds singing, tra-la-la – and your next step, without warning, sends you tumbling into a deep hole which other people cannot see at all. You have absolutely no idea what just happened or how to get out. Everything is lost and there is no trace of a way back. Some recovery time will be vital.
Everyone is trying to make sense of what’s happening but unfortunately the people around are likely to make false, socially typical, interpretations of the behaviour they are seeing, while the distressed individual is totally incapable of putting matters right.
At these crisis moments, how other people respond can make all the difference – they can quietly shine a light to show you the way out or they can chastise you for falling in; they can try to understand what’s happening for you or they can react with aversion and scorn. The negative responses feed stigma and self-stigmatisation, and radically reduce autistic capacity. To release the autism dividend this basic issue must be factored in, as removing or avoiding the barriers of stigma and unfairness depends on doing so.
A great deal of understanding from others may be needed or a cycle of reinforced stigma can happen, which may have extreme consequences 6. Being able to communicate at those moments when everything can go horribly wrong – sometimes with lifelong consequences – should greatly reduce the apparent need for imposed control, surveillance and sedation of people who sometimes have ‘meltdowns’, and as a consequence it should reduce costs and improve lives at the same time.
Several autistic initiatives have sought to tackle first step ‘frontline’ communication needs, eg the ARGH card 7 or the system of communication colour cards used at autistic-run events such as Autreat in the US and Autscape in the UK 8 . An app which takes this idea a stage further has been specifically designed by an autistic team to reduce autistic communication crises, i.e. the Autistic Space Kit or ASK 9. This app gives a quick personally crafted explanation to people around if an incapacitating crisis occurs, tells them that the crisis will pass OK, advises them re best practice for this particular individual, makes immediate contact with a support person if desired, and can deliver information re whereabouts.
This can be equally useful to people who never use speech effectively, so long as they are able to access the essential technology, smart phones, tablets, etc: as being included in the 21st century requires. The Care Quality Commission, whose role it is to monitor the adequacy of care provision in this country, needs to see this access as vital to inclusion today for everyone whose care they oversee 10.
Hopefully by 2020 or so studies – comparative if any comparable apps appear – will have shown that something along the lines of the Autistic Space Kit can play a role vis a vis autism similar to that of a white stick for people who are visually impaired, and it will be becoming more and more widely recognised and used.
Those approaches can help a lot with the immediate issues of communication crises and ‘crossed wires’, and much reduce their ill effects. However, similarly deep pitfalls can lie in wait in other areas, eg “executive function” issues – basically organisational life skills – which can pose a severe challenge to many autistic or otherwise divergent people yet may be easily resolved with timely help. However, a sizeable proportion of those people is further disabled and blocked from getting vital support, by the very processes by which they are meant to try and prove their need. That is partly because of the straightforward challenge of coping in a timely and competent fashion with much form filling that demands correct understanding of the point of questions and how to answer them 11. Another level of barrier is the requirement to prove one’s own disability, which becomes a constant work of self-presentation 12: projecting an image as a dysfunctional blot on society in order to get the basic help of staying alive. This is a deep problem for everyone, autistic or not, who is competing for financial support from a stingy source with limited resources and stringent rules.
You must become one sort of beggar so as to avoid being the other – but you may wind up being just as stigmatised either way and tragically likely to self-stigmatise too (see figures for depression, anxiety and suicide for clues to this 13). This sort of social positioning is toxic both individually and in terms of the ability of society at large to benefit from the good will and endeavours of the marginalised. It is also the sort of thinking that leads to dehumanising and devaluing people who don’t obviously fit, with a potential for wide scale abuse.
Current bureaucratic practices create pervasive structural barriers and reinforce stigma; they instill fear and reduce competence; they divert and absorb civic effort; they generate unnecessary invasions of privacy.
We have seen the need to investigate promising approaches to short-term, quotidian communication crises: is there an effective strategic change that could address the damaging systemic problems? How do we change to a system in which self-presentation skills can be devoted to enhancing rather than destroying one’s reputation as a viable human? A possible answer may lie in some variant of Unconditional or Citizens’ Income/ Universal Basic Income (UBI), which can strip away the terrible need to hide your light under a bushel in order to survive. A version of this policy was pioneered in Canada in the late 1960s and early 1970s, (providing data that are still being mined 14), and it is currently seeing more and more exploratory pilot studies world-wide 15.
There are some hints that UBI could be a policy which helps remove barriers and reduce stigma: according to a recent article in The Independent, “the positive benefits extended to dispelling stigma that went with welfare payments. In his analysis, Dr David Calnitsky found that Mincome participants were less embarrassed and uncomfortable about being on welfare and experienced less discrimination and prejudice associated with being recipients than those on conventional programmes. The same improvement was there in terms of participants’ experiences at banks, with landlords, in their communities, and with the police, teachers and medical services.” 16
Other encouraging features such as reduced mental health admissions, more cooperative attitudes, less general anxiety, fewer workplace accidents, and a greater chance to build up your own business from small start-ups are indicated in trends recognised so far.
Therefore, another piece of research I’d like to see is an overview of the many current experiments of variants of UBI, specifically in the light of their impact on marginalised and diverse people such as autistic people and others unable, for whatever reasons, to produce their best in the current scene.
Costs of every sort are incurred by both individuals and society because of an unmet need to understand, accept and deal with fluctuating autistic capacity to engage effectively. When the low times happen, it is not for lack of good will, it is from genuine (possibly brief) incapacity: being treated with belief and understanding is a vital element in acquiring or regaining capacity. I believe this could be enhanced by the specific steps proposed here, which I hope will be adequately researched in future.
I am grateful to Robert Chapman, Hilary Gilfoy, David Mery, Damian Milton, Fergus Murray and Charlie Young for their comments on earlier drafts, which have certainly improved the final article.
National Autism Project Strategy Board member
Dinah Murray is an independent researcher and campaigner, former tutor for Birmingham University’s distance learning courses on autism (adults) and former support worker for people with varied learning disabilities, including autism. Read more about Dinah here.
- “the proportions of boards rating themselves ‘red’ [negative/ failing] were 10%, 11% and 14% for those with a learning disability and 42%, 54% and 48% for those without”
- This does not imply that the needs of autistic people with learning disabilities are being well met! Please see:
Autism and Intellectual Disability in Adults: Volume 1: A Pavilion Annual 2017: ed Damian Milton, Nicola Martin
2017 www.autscape.org: Yo Dunn, The Other Half
- Hans Asperger, translated in the second chapter of this: www.archive.org
- Managing Meltdowns: Using the S.C.A.R.E.D. Calming Technique with Children and Adults with Autism: Deborah Lipsky and Will Richards, JKP, 2011
- The Normalisation Agenda and psycho-emotional disablement Milton, Damian and Lyte, Autonomy vol 1,1. 2012
- Autism Rights Group Highlands
I must declare an interest, though with no financial implications: if anyone was the team leader on that development, it was me.
- This is a general point: failing to ensure that all residents in care homes have access to and any help they need to use a smart phone or tablet, should mean failing the CQC inspections – anything less makes a farce of the idea of inclusion.
- See this re a relevant recent legal case
- For discussion see Dekker 2016
- See www.autistica.org.uk
- See David Calnitsky, More Normal Than Welfare (2016):
Evelyn Forget, The Town With No Poverty (2011)
- For an overview see Guy Standing, Basic Income and how we can make it happen (2017) or see www.basicincome.org
speaking for myself, as a person who has never had to worry about starving or having a roof over my head, because I was lucky, I can testify that this privilege was what allowed me to flourish, and contribute, eg when I gave up my job in the late 90s in order to research neuroleptic abuse for barrister Paul Bowen, or the years I spent running the Posautive Youtube group.
See Kurt Vonnegut The Sirens of Titan (1959) for some more discussion of the role of luck.
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