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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/

Parents

  • 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.

  • 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 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.

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  • 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.

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