Speaking about Autistic Adults at Hackney Health and Well-being Board

On 13 January, I addressed Hackney’s Health and Wellbeing Board as part of its Patient Voice agenda item, discussing provision for autistic adults in the Borough. Rather belatedly, Hackney is now considering a draft plan to implement its duties under the Autism Act. Here’s what I said …

I first moved to Hackney in 1990. I was diagnosed (or perhaps ‘recognised’ would be a preferable term) in March 2012. I’m going to make three key points that I would like to see addressed in the Autism plan:

1. My diagnosis/recognition was very useful to me. It explained a lot of things and helped my self-understanding. But when I asked: “So, what support is available for me now?”, the answer was “None.”

Last month I phoned Adult Social Care and asked for a needs assessment as an autistic adult, which I am entitled to by law. The person who answered tried her very best to be helpful, but did not know anything about this and seemed bewildered. That’s not her fault: rather, it indicates that the Council has not arranged the provision which it is required to.

2. Only 15% of autistic adults are in full-time employment; 9% in part-time employment. This is not because they can not work – most can – but because workplaces and employment practices are not autistic-friendly.

So yes, support autistic people into work, but make sure work is suitable. Instead of trying to change autistic people, change workplaces and employment practices.

3. I am pleased that the proposed Autism Alliance includes seats for autistic people. However, I am concerned:
–  that numbers are not given, and there is a danger of a couple of token autistic people being outnumbered by other members eg. professionals, councillors
– about who will take up these seats – or rather, how they will be chosen

If these members are to be representative of autistic Hackney residents, then they must be elected by and accountable to us. Too often, government bodies and others have taken charities or professionals or carers to speak for us, but we can communicate for ourselves, collectively.

The UN Convention on the Rights of Persons with Disabilities requires government bodies to involve disabled people in discussions on disability issues through our representative organisations. The draft plan can apply this by adding a provision to facilitate autistic people in Hackney to organise – provide us with venues, support, equipment etc to meet, discuss issues, elect representatives, tell those representatives what to say on our behalf, receive reports from them, etc.

Many of us have learned through bitter experience the difference between ‘consultation’ and democracy. We want a genuine democratic input into the strategy that is, after all, about us.

Nothing about us without us.

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