by Marion Hersh.
Control is important to many autistic people and we do not want to give it up to professionals and experts. I, for one, resisted formal diagnosis for this reason for many years until the need for reasonable adjustments became even more pressing.
Currently, diagnosis acts as the gate keeper to support and adjustments. However, in practice not a lot of support is available post-diagnosis. This is clearly wrong. Access to support should be made much simpler and the amount of support available should be increased, in consultation with autistic adults and young people, so it is useful. In addition, I would suggest that membership of autistic organisations should not be dependent on diagnosis. It seems unlikely that others are going to want to gatecrash them and mechanisms for preventing this could be developed if it becomes necessary.
However, self-diagnosis requires both information and self-confidence, so it is not an option for everyone. There is certainly a need for more information about autism to become generally available, but this will still not make self-diagnosis possible for everyone. This is particularly true in the case of children. In theory, a diagnosis could lead to additional information about the person and the barriers they are likely to encounter, followed by a personally tailored set of strategies and support measures to overcome them. In reality this is rare to non-existent.
Although, like everything else, professional diagnosis is not infallible, it can be useful in the case of challenges based on other people's stereotypes - you're not autistic, you can't be autistic - you can read, speak, have a job, partner, house, life, you're too responsive, you're not catatonic, not totally incapable (or whatever the particular stereotypes are) how can you be autistic. Producing a formal diagnosis is much easier than having to explain away all the stereotypes. In addition, this diagnosis can then be used to support your arguments challenging the stereotypes and showing the diversity of autistics.
The lack of support post-diagnosis is not unique to autism, as my research on the experiences of blind people in different countries found. Symptomatic of this lack of support was being given a long cane (white stick) and presumably being expected to know how to use it, though this requires many hours of training. However, the post-diagnosis situation for blind people is changing. In addition, many countries have organisations of blind people controlled by blind people. For many of my research participants going to organisations of blind people, hearing blind people there laugh and joke and seeing they had a life was a turning point.
Something similar would be possible for autism. However, it is going to take time and resources before each town and city, possibly even each village has an autistic controlled and led organisation, which, amongst other things is able to provide information and support to those who have been newly diagnosed.
Autistic UK campaigns in the UK and beyond to advance the interests of all autistic people and those with “related neuro-developmental conditions”.
Autistic UK will work to ensure that the autistic population of the UK is comprised of happy, healthy, fulfilled and empowered individuals.
Autistic UK envisages:- The establishment of Autistic People’s Organisations (APOs) within every local authority area in the UK