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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

    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

    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.

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  • 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.

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