The first recommendation of the National Autism Project’s Autism Dividend report mentions timely identification and diagnosis, but what does this mean and how can it be achieved?
I think one of the benefits of my autism, has been the ability to think outside of the conventional box as well as the ability to drill down into complex information in order to analyse it as objectively as is possible. I guess that is why I became a researcher, for I have long been interested in demographic research and determining the levels of disadvantage experienced through disability in my locality and beyond.
I am not going to push any one stereotypical view of autism as either advantage or disadvantage because it is complex and the evidence appears to be that at whatever intellectual level you function as an autistic person, you experience disadvantage of one sort or another, though not necessarily of the same kind.
It is clear that autism has been historically under recognised. That is not to say that we have all been invisible. We have not: we have attracted a variety of alternative labels within education, paediatrics and psychiatry. The future I want to see, and one that has been set out as long ago as the Autism Act of 2009, is a clear path to recognition.
The word diagnosis, as I was reminded by a Greek colleague, literally means “through knowing” and it is through knowing that we can achieve the best and most appropriate levels of service. I hesitate to use the word intervention. As someone whose academic background is in education, I prefer the word education, Latin this time for “I lead out”.
Education is where I believe the most appropriate help can be given at the most appropriate time for it is the disadvantage in education that led to the National Autistic Society being formed, and the disadvantages in education as an unrecognised autistic have been no less.
I am wary of the term special needs, because that allows one to consider a hierarchy of needs and to disregard the needs of the minority in favour of the needs of the many, a utilitarian argument of the kind that is over abundant in times of “austerity” (Arnold, 2013).
The future I would like to see, the difference I would like to make, is radical: it is to take the early identification of autism out of the current medical NHS gatekeeping perspective entirely and put it into the hands of suitably qualified experts, experts in educational psychology, thus freeing up a great many resources and ending some of the road blocks to diagnosis.
It is not a solution without challenges however, but the only reason we have ended up in this fashion is historical and can be contrasted with the way in which specific learning difficulties are considered.
There is the danger that such a system in itself could be underfunded, however there needs to be a radical rethinking of the way in which health and social care are still compartmentalised and have very different funding mechanisms. It would also take education; of parents, pre-school practitioners, GP’s and paediatricians, to recognise the signs that would lead to a referral. However once a referral is made, it would be outside of the current mechanisms, and be recognised externally within a legal framework as a gateway to appropriate services throughout the lifespan.
Dr Larry Arnold
Dr Larry Arnold is a member of the National Autism Project’s Autism Advisory Panel with a long record in disability advocacy. Read more about him here.
Arnold, L. (2013). Need. In C. Cameron (Ed.), Disability Studies (pp. 104 – 106). London: Sage.