What are issues on which an autistic organisation should have a position?

The US Autistic Self Advocacy Network publishes position statements on range of issues from unethical fundraising to autism policies. What are issues if any that a UK charity should publish a position statement about?
 

Pattern-chaser

Active member
I'm not sure about a "position", but I think it's vital to have a simple description of what autism is. It's difficult enough for us to understand; for an NT it's next to impossible. 😯 And, since understanding is the most important and beneficial thing that society as a whole could do for us, we really need to promote it. The beginning of that is explaining what and who we are, what we have to offer, and what we need. I think. 😉

Just my two pennyworth. 😉
 

Margot

Administrator
Yes, and change the deficit narrative.

I attend a social group run by NT people. They are writing a leaflet about autism...
It goes, "A mind that can attend to the detail but cannot see the big picture..."

I am cringing that such literal interpretation of diagnostic criteria are promoted.
 
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Pattern-chaser

Active member
Yes, and change the deficit narrative.

I attend a social group run by NT people. They are writing a leaflet about autism...
It goes, "A mind that can attend to the detail but cannot see the big picture..."

I am cringing that such literal interpretation of diagnostic criteria are promoted.

Yes, especially as, for me, seeing the big picture and the details was an essential part of my career as a designer. I know we're all different, but that particular phrase promotes a factually incorrect impression of me, at least, and presumably of many other autists too. 🙄
 
I'm not sure about a "position", but I think it's vital to have a simple description of what autism is. It's difficult enough for us to understand; for an NT it's next to impossible. 😯 And, since understanding is the most important and beneficial thing that society as a whole could do for us, we really need to promote it.

This is so true. Understanding is the beginning of change. It's the beginning of empathy and respect towards autists.
 
Yes, and change the deficit narrative.

I attend a social group run by NT people. They are writing a leaflet about autism...
It goes, "A mind that can attend to the detail but cannot see the big picture..."

I am cringing that such literal interpretation of diagnostic criteria are promoted.

This is appalling! Maybe NDSA should write an alternative leaflet...
 

catwrangler

New member
The NHS is a big one. I'd guess most of us have relied on it for diagnosis, yet there are long waiting lists, the ASD sector is chronically underfunded and some areas can't offer mental health support suited to our needs.

Social care is another.

And austerity - that plays into all of the above, plus the problems with the benefits system being so adversarial and discriminatory.

Inclusivity in education.
 

Thunderchild

Administrator
I have been seed for ADHD months after my previous appointment. My actual first letter from them said they would see me but due to the demand on the service they could not say when. It too a few months.
 

Pattern-chaser

Active member
The NHS is a big one. ASD underfunded ... mental health support ... Social care ... austerity ... discriminatory benefits ... inclusivity

Yes, to which we could add inequality, in all its forms, and then we more or less have the world as it is (but not as we'd wish it to be). Thoughtful post; thank you.
 

Hannah1

Guest
I think any Autism organisation should have knowledge and training on the different learning disabilities on the Autistic spectrum such as Autism, adhd, tourrettes and put this information on their website for people using the service to show they are a very good knowledgeable organisationon theb subject and have other sertvices like advocacy and befriending and information resources on autism for people to download or enquire aboiut.
 
I'm wondering what space the NDSA wants to take? Is it only about autism or about other neurodivergent conditions? Is there an ambition to make this a UK wide autistic people's organisation? I ask because I'd like the Welsh statutory autism service to formally consult an autistic led organisation: https://amase.org.uk/apos/
 

Chair

Member
We want to be an open national grassroots autistic organisation that also addresses other Neurodivergent conditions. We welcome neurodivergent members without autism, but our area of expertise is primarily in autism. Would you like to partner with us to cover Tourette?
 
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We contacted ASDinfo Wales and the 'put us on the distribution list'. Are they the organisation that produced that booklet with puzzle piece?
Well yes and no! They are the public sector service in Wales and although we have a Labour Govt and they are being pushed to be very progressive, they did use that puzzle piece guide as it was all they had to hand at the time and they didn't know enough to know how bad it was!

I tried a couple of routes to contact AutisticUK but have heard nothing back so it's great that you've been in touch with them. I was also going to see if the Welsh disable people's organisation would look at things. We really need people to start treating us as adults and a community and not a range of childish individuals!
 
We want to be an open national grassroots autistic organisation that also addresses other Neurodivergent conditions. We welcome neurodivergent members without autism, but our area of expertise is primarily in autism. Would you like to partner with us to cover Tourette?
Sorry the only thing I know about Tourettes is what I picked up from a programme I watched on TV last week.
 
The definition should start from Neurodiversity

'A neurological difference and an integral part of human diversity'
But remember that the diversity is not in the individuals but across the human population. Neurodiversity applies to the diversity found across humanity, meaning that NTs are included in it. So rather than 'a neurological difference' we could say it's about the natural neurological difference found in humans?
 

Thunderchild

Administrator
But remember that the diversity is not in the individuals but across the human population. Neurodiversity applies to the diversity found across humanity, meaning that NTs are included in it. So rather than 'a neurological difference' we could say it's about the natural neurological difference found in humans?

Yes that is exactly what we want to be about. The NT versus the rest is a a set of boxes most people find useful to classify people. But in reality we are all on various sliding scales and we would like to see an acceptance that we are all different and just one big diversity. People are marginalized based on certain "differences" but everyone is different. As I heard someone recently say, when you have met an autistic person you have met one autistic person, every autistic person is different and although in the NT population differences are less highlighted but applies just the same.
 

ProfessorWorm

Active member
I’m currently based in the states, although English and moving back in a year, so I’ll provide my opinion. It would be helpful if there was a very firm line on education access. The number of instructors/admissions tutors that were very happy about me applying until I began asking about accommodations. Suddenly they weren’t sure my qualifications were good enough (20+ American university courses with straight As in all), rude and irrelevant questions about my life/ health, and were suddenly struck by the compulsive need to run off is horrifying and I imagine I am not alone in that experience.

I would also recommend info about physical co-morbid conditions as well as info about other ND conditions/mental health co-morbid conditions.