01/11/2025
Many of you know that up until two years ago I was CEO of an Autistic led charity. It was a space run by Autistics for Autistics and other people who were connected to Autistic folks. Our board was almost exclusively Autistic and all front facing staff were Autistic. The stress of running small charities cannot be understated. The lack of reliable funding make things extremely unpredictable.
So when there is a study about large Autism charities out there, I want to read it for both personal and professional reasons. This particular study related to large Autism charities in England and Wales but we know this also impacts and influences Scotland and other countries too.
I am sad to say that this study’s results did not come as a surprise but it sure is shining a welcome light on some poor practices.
The continuing portrayal of Autistic people as a burden is deeply problematic and one of the major reasons why we continue to face stigma. Governments very often prioritise the voices of large non Autistic led organisations over the voices of Autistic people and Disabled Autistic People’s Organisations. They will listen to them first and then check if the Autistic community agrees. And even if we don’t they sometimes barge on ahead anyway.
In presenting Autistic people as a problem, many large charities are able to present themselves as the solution. It’s ok, come to us, we can deal with it. Despite there often being an entire lack of Autistic representation on their Board, leadership team or staff.
This is deeply problematic for many reasons, not least of all because government funding is often given to these charities to provide what should be statutory services. This leads to a postcode lottery. If a charity doesn’t operate in your area, you may not get any support despite friends in a different local authority getting the support you need.
And I can tell you that as former Autistic led charity staff it broke our hearts when we had to turn someone away because they were not within the area we were funded to cover.
The NHS often refers Autistic people and our families to these places as a first stop before, during, and after assessment. Not once during my journey or my child’s was I told that Autistic People’s organisation and Autistic led organisations existed.
In this particular study, every one of the charities depicted Autistic people as needing to change. We should be more resilient. We should communicate more.
Let that sink in. So all the work Dr Milton and other researchers have done on the Double Empathy Theory has not been taken on board. All the work innumerable advocates and teachers have done showing how incredibly and remarkably resilient Autistic people are is totally overlooked. Because it does not suit their narrative.
Earlier in the week I said that my husband was not a hero for being my knight in saviour armour. But it appears this is exactly what these non Autistic led organisations are trying to be.
The report also points out that each of the organisations studied infantilised Autistic people. This is highly damaging and leaves Autistic people extremely vulnerable. If we are children, we don’t need to know about grown up things like understanding healthy relationships, s3x education, working with colleagues, managing money. And those who came along to our event on Tuesday evening saw me talking passionately about the importance of access to many of these things!
I know first hand that Autistic People are perfectly capable of running charities and other organisations. And it is essential that any organisation claiming to represent and support Autistic people have good Autistic representation at all levels in their organisation.
And distressingly, PBS aka Positive Behaviour Support - a dangerous form of behaviourism - is promoted by the majority of the charities in their annual reports.
PBS is not neuroaffirming. It literally cannot be because it encourages Autistic people to change our natural ways of being to fit in with societal expectations. It is strongly linked to cPTSD and as someone who had seen the trauma it causes first hand, as someone who has heard countless people share their experiences of behaviourism, I want to say out loud again that there are better ways than ABA and other forms of behaviourism.
If you’re seeking to gain support from an organisation here are some questions to consider:
♾️ How many Autistic Board members do they have?
♾️ How many Autistic leadership team members?
♾️ How many Autistic staff?
♾️ Do they have policies on increasing Autistic representation within their organisation?
♾️ Do they collaborate with respected Autistic professionals?
♾️ Do they promote or use PBS or any other forms of behaviourism?
♾️ Is the information on their website accessible?
♾️ Are the images they use problematic or supportive?
♾️ Is their language genuinely neuroaffirming or are they misunderstanding words like “neurodiverse”?
