A friend of mine, Andrew Carpenter (@NBNLondonRegion) is writing a report for the NHS and wanted feedback on his summary of the cultural context in the autism world at the moment. Please can people comment or tweet with their feedback…

It could be said that we are in place of ‘the more we learn, we less we know’. There is very little research into autism in adults, leading the authors of The Autism Dividend to conclude that

…most policy and practice is not supported by evaluation of effectiveness and cost-effectiveness in studies of good quality. This is hardly surprising in view of the very small sums of money spent on autism research (only £4m per year in the UK) compared with other societal issues of comparable size and importance.

At the same time, the autistic voice (often coming together under a hashtag movement known as #ActuallyAutistic) is finally beginning to be heard. What was seen as best practice only a decade ago is now being challenged, or sometimes shown to be actively harmful (see later in this report) and it is perhaps no surprise that the more the #ActuallyAutistic voice is heard, the more we are beginning to understand and change. Sometimes, though, this has led to conflict between autistic people themselves, and the families and professionals who seek to support them.

With the dearth of research, it seems vital that the autistic voice is not only heard, but accepted as the very best way of gathering useful information about what is required, desired, and works best, whilst also recognising that the autistic population is as varied and different as the predominant neurotypical (PNT) population. It also seems vital that autistic people are not just included in, but acknowledged as often able to lead on, discussion and research. The community’s frustration at being excluded or having only tokenistic representation must, I think, be acknowledged openly.

Part of this change is to argue for more acceptance of autism (not just awareness) as a difference and definitely not something to be cured. Indeed, the very idea of this is quite offensive to many autistic people, in the same way that the thought of ‘curing’ homosexuality would quite rightly be held up as something abhorrent.

Whilst I do not wish to dwell too long on this, I think it is important to understand the wider context and for clinicians and commissioners to understand that direct involvement is key in a world that lacks concrete evidence from research. Is autism something to be diagnosed or simply identified?

And on a personal note, I would like to thank the commissioners of this report for insisting that it was carried out by an autistic person.