Published on 12, July, 2020
I got a formal diagnosis this year - 25 years after taking the AQ test (39) and nearly 60 years after I was first referred for assessment as a child - it's been a bumpy ride! I've had some amazing help from my local authority AS services around employment but I've been a bit surprised at how little AS people are actually involved in the service and it also seems that there's very little ongoing support for AS adults. It also seems a bit of a lottery regionally.
Meanwhile, we have researchers cruising the forums looking for input on the latest app or conference. Again, none of them seem particularly keen to do more than get input on their own ideas - we don't get 'invited to the table'. All the apps I've seen look as though they're for children. The diagnostic process is designed for children. Services seem to be very vague on high-functioning adults?
This NAS forum has been a life-saver in floundering around post-diagnosis and it feels ungrateful to moan - but it's very far from perfect for HF AS adults and, again, there seems to be very little involvement on the part of AS people in defining the service.This might be partly as it started off as a service orientated around parents - it gives the impression of being very much by-and-for people *around* AS people rather than AS people themselves.
So maybe we need to be a bit proactive?
What sort of resource, spaces, support would you have liked (or would like now) that you haven't been offered?
I've been a bit surprised at how little AS people are actually involved in the service and it also seems that there's very little ongoing support for AS adults
here seems to be very little involvement on the part of AS people in defining the service.This might be partly as it started off as a service orientated around parents - it gives the impression of being very much by-and-for people *around* AS people rather than AS people themselves.
Very much so.
Thee is very limited scope to contribute, get heard and get involved, there is no space and process for listening and for trying to organise something that NAS has no time or funding for. Autistic people can do a lot to support each other and basically themselves, but we need some structure and support for that..
In terms of services, I haven't been offered anything at all, so I think there is a lot of scope. lol
I think there is a real niche in UK, a need for autistic adult self advocacy organisation that is distinct from education agenda and from other professional people around autism who are not autistic themselves. It could be a brunch of NAS or a sister organisation. I think NAS is great in many ways and does essential work and services. But they are not set up to do certain niche things. I think they have one focus campaign at a time.
In US the Autistic Self Advocacy Network (ASAN) established the important aim, the famous 'Nothing about us without us'. They are effective in getting autistic people a voice, lobbying the government and to offer an alternative agenda to to the powerful parent lead big organisation. I am not sure there is a clear national autistic voice like this in UK. Yes, there are advocates, but they are a little fragmented and work privately for individuals.
An Autistic self advocacy space/organisation, I think there should be a virtual space, an open process, a forum for autistic adults to suggest and discuss priorities and input, set the agenda. There is no open national 'space' like this for the moment.
I think some of the things that need addressing are:
Resources:
Support:
Research
This is a draft document on the services, people can comment on it, they can copy it into a new message and edit it, make suggestions, additions, deletions. [it does not include yet latest from Lagrangian as I was writing, to be added]
It is an attempt at collaborative working.
Formatting: I will use italic for comments
Introduction
It is estimated that about 1 in 100 people in the general population are on the autism spectrum. This means that there are potentially XXX adults in the UK. Many of them are not diagnosed, many are in the process of getting a diagnosis. It is the experience of many autistic people diagnosed i adulthood that:
Holistic, integrated, preventative, life long
National framework, no post code lottery and variation
Defined and designed by autistic people
Based on progressive vision of autism, social model of disability, autism acceptance
Supporting personal growth and life skills as defined by autistic people themselves, support and coaching in coping with autism in achieving life goals.
Support for health needs, for the entire family, for employment, aging, housing.
Life skills defined individually in broad and flexible terms by autistic individuals. For some it is taking a bus, for others it is avoiding fall into depression, starting a family, or even retaining their job in professional capacity..
The need for an open national Autistic Self Advocacy organisation that would provide a forum, an open process for autistic adults to discuss priorities and needs and provide a voice, at a national scale that is distinct from the parents organisations and the voice of professionals working in autism,which would enables to discuss and focus on issues important for autistic people, but not yet covered by existing structures. Also a space and process for autistic people to contribute, get heard and get involved, there is no space and process for listening and for trying to organise something that NAS has no time or funding for. Autistic people can do a lot to support each other and basically themselves, but we need some structure and support for that..
It could be a brunch of NAS or an independent organisation. NAS is great in many ways and does essential work and services. But they are not set up to do all things, niche things. There is a scope for an additional self advocacy and peer to peer support organisation that could cover autistic needs and priorities for which NAS has no capacity.
Some of the things that need addressing are:
Training professionals on a progressive non limiting model of ASD to respond to the needs of autistic people and support them in their coping. personal development and fulfilment of their life goals. Professionals who understand ASD and actually listen to autistic people.
Ethics of genetic research into autism. I read articles that ethics i any autism research are 'weak', maybe it's time to strengthen them.
An online forum
Wow, this is amazing! I love how many great ideas people have provided. This is a wonderful summary, Tinyexplorer. Wouldn't it be great if some policy makers (good ones) came and looked at the forum.
We'll have to bring it to them - will get something together shortly - they were reviewing the autism strategy recently - if we can do it by 16 May, we could form a group and respond as a group to the consultation survey: https://www.gov.uk/government/consultations/review-of-the-national-autism-strategy-think-autism-call-for-evidence/review-of-the-national-autism-strategy-think-autism-call-for-evidence - if they're not asking the right questions, we could also write them a supplementary letter? @tinyexplorer summary would be a place to start?