Open letter following Sheffield’s Autism Partnership’s Autism Strategy Board meeting, Town Hall, 22.6.18.
(amended for public view)
(During the creation of the framework, we have been asked to provide what we feel is our own view of meaningful outcomes)
My thanks to the Board for understanding the importance of using identity first language and agreeing to implement it within the new framework, this is already a good outcome to have achieved. Many people, including leading autistic researchers are campaigning for ‘identity over diagnosis’ which will give people the freedom and choice to say they are autistic, before and while waiting for a formal diagnosis (if that is what they require), as well as distinguishing autism separately from medical illness. Autism is a congenital difference, not an illness and the popular misunderstanding of autism as (and comparisons to) illness has come from the fact that medical research and health services, which aims to improve lives of autistic people, mainly deals with illness and cure. Autism is a disability for many autistic people, mainly because of environmental factors and the social model of disability, (alongside the medical model) is a useful lens through which to view autism and autistic people, for a society which is open-minded about what autism and autistic people have to offer the world, and how this might be executed together, as a forward-thinking community. This twin-lens view would be my first desired outcome. Making lives easier for autistic people is the first step in our responsibility as a whole, at the same time as seeing them as equals. We need to accomodate them in entirity, until there is no ‘them’ or ‘us’. There is a lot of discussion to have around Health Care provision too of course, and autistic people and non-autistic people working together is the only way a cultural shift that empowers society on the whole, can occur.
In June, a Lead Occupational Therapist from a national healthcare company, announced her team had made an immediate change in their unit’s autism service, as a direct result of attending one Autism Dialogue session in Sheffield. A newly admitted autistic patient at their unit will now be formally asked what they want from the service, instead of an external team’s ruling. (Many autistic people have mental health problems and there are often associated co-morbidities.) During the ensuing discussion in this particular dialogue session, there were also numerous comments that health care executives, especially commissioners, should benefit from and experience dialogue, and we discussed how dialogue places everyone in a space of deep consideration, as ‘human beings first’. The current series is where carers, professionals, researchers and autistic people from around the country sit together in a confidential environment, to discuss personal, deeply held views. The OT will be joining our next Board meeting in Sheffield.
My belief is that dialogue should be in place before a crisis unfolds, as the word dialogue is too often seen in the context of large-scale problem-solving eg. warring nations. Dialogue should be an intrinsic part of healthy community and traditionally, it has been. I am talking about a radical method of coming together, not around a boardroom table with the uniforms and roles we all bring, but as equal human beings in an open circle of chairs. The example I like to give is of native American Indians, who regularly sat round for ‘Pow-wow’ in order to breed familiarity and ‘say what needs to be said’. Another more obvious example is that of family gatherings. By regularly meeting in this way, implementing a few basic principles for discussion, an organisation or community with common aims can nurture empathy and keep fragmentation in check. Autism is a phenomenon that is challenging our very concepts of health, social care, societal values and even sense of self.
As discussed, the aspect of accountability within services is important and as the example of the change in provision focus shows, sometimes direct formal action from one person who has experienced a shift in viewpoint can occur immediately, there is no question of accountability being compromised. It is from individuals where collective change begins as that is who we are. An organisation with sound values and a strong accountability structure can adapt to, and welcomes new challenge. Perhaps in the case of autism, it will have opened to both positive and negative environmental impacts autism and autistic individuals may bring.
As in (2) ‘Scope’ – “The strategy is for autistic people, their families and carers”. I feel the scope needs in some way to extend to researchers being included collaboratively. There is a growing number of autistic researchers and by including their experiences and findings in a two-way knowledge transfer, the strategy can become a dynamic, working document. I must add that these people (or any ‘succesful’) autistic people are in no way to be measured on their abilities and need for support. I am aware of many researchers, professionals and other successful autistic people who are suffering.
Further suggestions for the draft.
All instances of ‘people with autism’ to be changed to ‘autistic people’ (agreed).
i – “I want to be accepted (etc)… and autistic people” (needs adding)
iv – “.….and autistic people for who they are.’ (needs adding)
iii – Change “I have autism” to “I am autistic”
vii – In the list of ‘big life changes’ – “raising a family” – there are many autistic parents who need recognising, often with autistic children (genetic links).
i – I want people to recognise “my autism” – change to “that I am autistic“.
As a final suggestion, a more detailed description of “autism friendly” could be written as ‘typical’ or ‘standard’ autism friendly, to distinguish the fact that no two profiles are the same.