If we could design it ourselves, what would AS services look like?

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?

Parents
  • After reading through the posts on https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/15461/if-we-could-design-it-ourselves-what-would-as-services-look-likeand 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-likehere comes my War & Peace and hopefully broken down for easy reading to everyone:-

     

    Content and Structure

     

    • With the right support network (Server and baseline software) for a site (e.g. here) then that lays the foundation stones and gravitas of everyone on the same hymnsheet.  Note I am good at software usability and development albeit not an out and out coder and Servers (and setting up) are alien to me.

     

    • With the right site layout, maybe a mixture of Autism/Aspergers/PDD-NOA/etc knowledge, help, links to other information, breakdown of the spectrum to include markers/traits and Strengths, etc then it should make navigation of the site easier

     

    • The layout of the site and pages needs to be simple which is where WE come in – we know our condition, likes and dislikes of various aspects of the internet (encyclopedia, forum, web pages, etc) which is where collaboration on the design/layout by US for the benefit of ALL.

     

    • With Server Admin covered then the next layer would be the website admin (trusted individuals) down to Editors/Contributors – Now, the biggest metric is the 90/9/1 internet culture where 90% only read information, 9% editing/contributing and 1% creating new content - https://en.wikipedia.org/wiki/1%25_rule_(Internet_culture)

     

    • Those of us quite IT literate could help to build some consolidation of knowledge from articles into useful “single point of knowledge” articles/information. This includes awareness for everyone on what it is rather than the pre-conceived ideas from TV/Film.

     

    Schools and Services

    • I feel these pages could be laid out better and make use of some further voluntary advocates for the Support Groups, Social Groups, Befriending and Mentoring.  What better way than to collaborate with those of us with the knowledge, skills and experience of the condition.

     

    • This could be improved IMHO especially for Adults wanting to socialise/help others on the journey.

     

    • Knowledge that is easily available (without being overwhelming) to help with all steps on the Journey from initial thoughts (I am different) through the myriad of steps (Work, Health, Legal, Rights, etc) until we have gone a long way down the road, post diagnosis.

     

    • Help with those of us who identify others who may have the condition to broach the subject easier with others (with the condition, partners, children/siblings and/or parents) because it is a condition that form who we are (personality) and can be a huge strength to harness.

     

    • It may be an ASD/ASC trait but not everyone is programmed to navigate through the endless treadmill of Educational exams, I know that I learn differently and cannot regurgitate at will.

     

    • Explanation that Stress, Anxiety and Depression are not only conditions but should be treated as the same keywords to get somewhere from the position you are at (Anxiety is treated as the only keyword that opens doors).

     

    Visibility

    • As it is kept being mentioned, PRIDE/LGBTQ is now such a movement and up there in lights with physical disability but invisible disabilities are completely ignored wrt Equality/Diversity.  As soon as the Equality Act 2010 becomes more out there for those of us with mental health conditions in line with LGBQT visibility then the ignoramuses in the world can still get away with what they have always done.

     

    • Criticisms come from the ignoramuses who do not listen, do not want to listen/change and would rather we leave employment and out of their hair.  You have created the mental monster by your treatment of someone different but do not want to change/support in correcting the mess you have created.
Reply
  • After reading through the posts on https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/15461/if-we-could-design-it-ourselves-what-would-as-services-look-likeand 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-likehere comes my War & Peace and hopefully broken down for easy reading to everyone:-

     

    Content and Structure

     

    • With the right support network (Server and baseline software) for a site (e.g. here) then that lays the foundation stones and gravitas of everyone on the same hymnsheet.  Note I am good at software usability and development albeit not an out and out coder and Servers (and setting up) are alien to me.

     

    • With the right site layout, maybe a mixture of Autism/Aspergers/PDD-NOA/etc knowledge, help, links to other information, breakdown of the spectrum to include markers/traits and Strengths, etc then it should make navigation of the site easier

     

    • The layout of the site and pages needs to be simple which is where WE come in – we know our condition, likes and dislikes of various aspects of the internet (encyclopedia, forum, web pages, etc) which is where collaboration on the design/layout by US for the benefit of ALL.

     

    • With Server Admin covered then the next layer would be the website admin (trusted individuals) down to Editors/Contributors – Now, the biggest metric is the 90/9/1 internet culture where 90% only read information, 9% editing/contributing and 1% creating new content - https://en.wikipedia.org/wiki/1%25_rule_(Internet_culture)

     

    • Those of us quite IT literate could help to build some consolidation of knowledge from articles into useful “single point of knowledge” articles/information. This includes awareness for everyone on what it is rather than the pre-conceived ideas from TV/Film.

     

    Schools and Services

    • I feel these pages could be laid out better and make use of some further voluntary advocates for the Support Groups, Social Groups, Befriending and Mentoring.  What better way than to collaborate with those of us with the knowledge, skills and experience of the condition.

     

    • This could be improved IMHO especially for Adults wanting to socialise/help others on the journey.

     

    • Knowledge that is easily available (without being overwhelming) to help with all steps on the Journey from initial thoughts (I am different) through the myriad of steps (Work, Health, Legal, Rights, etc) until we have gone a long way down the road, post diagnosis.

     

    • Help with those of us who identify others who may have the condition to broach the subject easier with others (with the condition, partners, children/siblings and/or parents) because it is a condition that form who we are (personality) and can be a huge strength to harness.

     

    • It may be an ASD/ASC trait but not everyone is programmed to navigate through the endless treadmill of Educational exams, I know that I learn differently and cannot regurgitate at will.

     

    • Explanation that Stress, Anxiety and Depression are not only conditions but should be treated as the same keywords to get somewhere from the position you are at (Anxiety is treated as the only keyword that opens doors).

     

    Visibility

    • As it is kept being mentioned, PRIDE/LGBTQ is now such a movement and up there in lights with physical disability but invisible disabilities are completely ignored wrt Equality/Diversity.  As soon as the Equality Act 2010 becomes more out there for those of us with mental health conditions in line with LGBQT visibility then the ignoramuses in the world can still get away with what they have always done.

     

    • Criticisms come from the ignoramuses who do not listen, do not want to listen/change and would rather we leave employment and out of their hair.  You have created the mental monster by your treatment of someone different but do not want to change/support in correcting the mess you have created.
Children