• Replies 11 replies
  • Subscribers 81 subscribers
  • Views 3511 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Joining voices

Tinyexplorer

Dear community,

 Remember we discussed what would we do if we had to design the services ourselves here:  https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/15461/if-we-could-design-it-ourselves-what-would-as-services-look-like/111233#111233

And here

https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/15479/forum-contents-non-techy---if-we-could-design-it-ourselves-what-would-it-look-like

 Based on these consultations we formed the Neurodiverse Self Advocacy, the voluntary group run by autistic for autistic, a Forum in all senses of the word where we can have a common voice autistic people speaking for themselves. Where we can listen and act on what people are saying and develop the services in the more relevant and helpful way based on understanding from within.

 Now it is possible on NDSA https://ndsa.uk/content/ forum and website. We can listen and act on what users are saying, designing new services that are really helpful to autistic people to address the barriers that are overlooked and under-served by the big charities.

We can structure and channel information into knowledge that can help to remove barriers we face.

It took a while but now our website and forum are ready for you. We sought your ideas and opinions and listened to you in developing our forum and the service here:

NDSA.uk https://ndsa.uk/content/

 It is moderated and safe, it offers advanced functionality, it is all singing and dancing, literally there is music playing in some thread.

 Please come, check it out, give us feedback and ignite the conversation!

 What are the autistic strengths? https://ndsa.uk/forum/threads/autistic-strengths.18/

 What are the most important priorities in autism services? https://ndsa.uk/forum/threads/what-is-the-1-st-most-important-priority-in-autism-policy.2/

What is the most under-served underdeveloped area in services for autistic people? https://ndsa.uk/forum/threads/what-is-the-most-under-served-under-developed-area-in-support-for-autistic-people.3/

  • in reply to photonic_electrons

    I have had to jump through a lot of hoops to get to a diagnosis. You may have to too. I'm fairly intelligent, but my intelligence led me to read up on the subject so I worked out some things about myself long before the doctor did. The waiting list is hellish, I know, but you should try it IMHO. Go to your GP about this, and if they turn you down, get a second opinion. And if that fails, contact a group such as the NAS or Citizens Advice Bureau. Use your obsessive side (most ASD folk have one) to get there.

  • in reply to Niemand

    That is precisely why we set ourselves up. I know I am autistic but i don't think they can even be bothered to give me a diagnosis. My problem is i am too intelligent and work my way through my problems but at much more effort so i am held back in life. I think treating aspergers/autism as a deficiency does not help as it shuts out those of us that are just different.

  • in reply to Tinyexplorer

    There are certainly a lot of homeless people with very noticeable schizophrenia and substance abuse problems, it really wouldn't surprise me if many had autism too. I was briefly homeless (six months), and a friend of mine (who I am 90% sure has autism) was in homeless accom for a couple of years. I was never a rough sleeper, but it could well have come to that under different circumstances.

  • in reply to Tinyexplorer

    I would list the following as medical issues:

    * The diagnosis of autism by GPs, misdiagnosis etc.

    * Medical interaction for other things. I'm told it is harder for autistic people to explain/demonstrate pain/discomfort etc.

    * Prejudice within the medical profession. Even psychiatrists who deal with this (such as Dr/Prof Fitzgerald mentioned elsewhere on here) seems to have misconceptions about our internal experience.

  • in reply to Niemand

    Homelessness is a very good point. I never came across any research on it. It should be researched.

  • in reply to Tinyexplorer

    I was browsing the AMASE website out of curiosity, and it was full of the exact toxic identity politics I'm talking about. It is out there among autism advocacy. It is of little or no use to me. 

    I agree with your list of three priorities. I would add another - housing. I suspect many homeless people are homeless.

  • in reply to Niemand

    I know what you mean. I had my fair share of discrimination and bullying at work. It put me off seeking work for a long time. I am coming back together now.

    Neurodiverse self advocacy is not about identity politics though. We have  three priorities which are very much real life:

    • employment
    • transitions
    • relationships

    Users can vote on priorities and issues on our Advocacy forum https://ndsa.uk/forum/forums/advocacy-discussion.17/

    Come and explore our site!

  • in reply to Niemand

    I was thinking what the medical profession could do,  I suppose 

    • Improving talking therapies for autistic people, tackling mental health issues.
    • Improving cures to additional conditions like epilepsy
    • Improving access to diagnosis 

    but otherwise it is not a medical issue.

  • in reply to Tinyexplorer

    Most of these people are undiagnosed. I believe the interview system weeds out autistic people (unintentionally) for one. Also a lot of people with this are seen and treated as a "bit weird" which is not helpful to them. Many autistic people can be loyal and effective employees under the right circumstances, not just some kind of problematic and odd person and that's the message which needs to be put across.

    I have an acquaintance who has been sacked at least twice because the bosses thought he wasn't paying attention.

    My own employment history is terrible. Everyone who knows me says that I am intelligent (and I agree but I am nowhere near genius level!), but my CV doesn't reflect that. 

  • in reply to Niemand

    I completely agree, it is important not to be trapped, well in a small detail but look at the bog picture.

    For example, the Parliamentary report out this week says that autistic people have the lowest employment rates of all disability groups, stuck at 16% for a decade and progress has slowed down since 2016. We need to change the attitudes of the employers and this will not happen without changing the narrative of autism, away from deficits towards recognising and promoting autistic strengths.

    (not attention to detail though, real relevant strength)

  • I support some forms of self-advocacy, but I am not into the identity politics some groups want. We need campaigning for real world issues - we don't need to trip people up over whether someone says "autistic person" or "person with autism", we need decent and fair employment... Likewise, we don't need infinity badges and pride festivals, we need the medical profession to understand this issue and not treat it purely as a deficiency.