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Autistic Adults: how can things be improved?

Lotus

I have just finished the OU open learn course in understanding autism. I found it very comprehensive, and it's reassuring to see that the content is relevant and thorough for people who want to learn about autism.

The final section dealt with how things are progressing in the 21st century and included this statement:

"There is recognition that autism often goes undiagnosed, notably in females (Gould and Ashton-Smith, 2011), and also more widely in the adult population. Rectifying this problem, and meeting the needs of autistic adults generally, remain significant challenges"

Apparently, one in 34 children are now being diagnosed with autism. I'm thinking that this rate is probably what it's always been, but there are many adults who were not diagnosed, and some who are now self diagnosed (like me) who aren't in the statistics.

There isn't enough money to support the autistic children who have specific learning and development needs (the course I just did included a report by a parent that the funds for their child were used to employ a teaching assistant who worked as a general TA in the school, so their child didn't get any one to one help) So there aren't going to be funds to support any but the most vulnerable of autistic adults, and due to funding even the diagnosis has a very long waiting list.

So, do you have any ideas about how things could be improved for autistic adults without government funding?

I'll start with some ideas:

1. Diagnosis for adults - does this really have to be done by a medical professional, with the relevant associated costs? The doctor I was seeing when I self diagnosed put the results of my AQ50 and another test he asked me to do (probably the RAADS one, not sure) onto my medical records (with my consent) for future reference. Maybe everyone who suspects they may be on the spectrum should be able to take the AQ50 and send their results to their health centre, and then the medical team can treat them the same as if they had a formal diagnosis? Of course, if someone needed specialist help or sheltered housing, a referral could still be done.

2. Employers - should be required to take training in autism and to make reasonable adjustments in the case of sensory sensitivities and anxiety, whether the employee is formally diagnosed or not.

3. Businesses - shops, cafes, public transport, etc, should stop having music playing and loud tannoy announcements. It's a problem on buses/trains that have announcements of stops though as they do that to help blind/partially sighted people, but maybe just turn the volume down?

What ideas do you have?

Parents

  • Comment: Are Open Learn still using the guy who calls ASD an 'Intellectual Disability, because that's what the Americans call it'? I undertook their understanding autism course a few years back when teacher training and it felt really outdated. It'd be good to know if they've updated it.

    1: Honestly, I feel like if you do all the indictive tests then that should be enough to skip straight on to an assessment with the psychaitrist and into diagnosis. For me I did the RAADS-R, CAT-Q, Aspie Quiz, AQ-50 before attempting to get diagnosed. Then a two and a bit year wait for the assessment. For me it was a painless 50 minutes or so, and three very long, very frustrating forms. That was the process. The indictive tests got it right over two years ago. I kinda think that the NHS is hung up on the current process, but in a world where social media has influencers and there are people self-diagnosing I do have sympathy for anyone who feels like self-diagnosis undermines the hard process they went through to get their formal diagnosis. I'd go a step further though - every autistic, ADHD person in my life knew I was autistic before I did. Seriously I would suggest that some autistic people could probably diagnose other autistic people quicker than most medical professionals.

    2: I think we should be enforcing the law at the application and recruitment stages yes. Application forms are a hellscape for some people who don't 'fit' into the application form boxes. Likewise, I'd argue that any employer setting up one of the 'tests' like setting out an uneven chair to see what the interviewee will do are breaching the equality act. They're literally doing something that doesn't take into account disabilities, and/or neurodiversity. Companies can, and should do better.

    3: Instinctually I think that falls into the realm of unrealistic. Though that's a personal belief and not a criticism of what you're asking. I feel like it's trying to control a world that (annoyingly) can't or won't be controlled. I was fortunate enough to spend a lot of time in a city near me during the 2010-2015 period where there was literally a shop of cafe for every taste. There were cafes that did, or didn't play music - there was choice is my point. I feel like that choice is the answer - but then I'm the type of weird that will happily sit with my laptop in a cafe on my own people watching so...

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  • Comment: Are Open Learn still using the guy who calls ASD an 'Intellectual Disability, because that's what the Americans call it'? I undertook their understanding autism course a few years back when teacher training and it felt really outdated. It'd be good to know if they've updated it.

    1: Honestly, I feel like if you do all the indictive tests then that should be enough to skip straight on to an assessment with the psychaitrist and into diagnosis. For me I did the RAADS-R, CAT-Q, Aspie Quiz, AQ-50 before attempting to get diagnosed. Then a two and a bit year wait for the assessment. For me it was a painless 50 minutes or so, and three very long, very frustrating forms. That was the process. The indictive tests got it right over two years ago. I kinda think that the NHS is hung up on the current process, but in a world where social media has influencers and there are people self-diagnosing I do have sympathy for anyone who feels like self-diagnosis undermines the hard process they went through to get their formal diagnosis. I'd go a step further though - every autistic, ADHD person in my life knew I was autistic before I did. Seriously I would suggest that some autistic people could probably diagnose other autistic people quicker than most medical professionals.

    2: I think we should be enforcing the law at the application and recruitment stages yes. Application forms are a hellscape for some people who don't 'fit' into the application form boxes. Likewise, I'd argue that any employer setting up one of the 'tests' like setting out an uneven chair to see what the interviewee will do are breaching the equality act. They're literally doing something that doesn't take into account disabilities, and/or neurodiversity. Companies can, and should do better.

    3: Instinctually I think that falls into the realm of unrealistic. Though that's a personal belief and not a criticism of what you're asking. I feel like it's trying to control a world that (annoyingly) can't or won't be controlled. I was fortunate enough to spend a lot of time in a city near me during the 2010-2015 period where there was literally a shop of cafe for every taste. There were cafes that did, or didn't play music - there was choice is my point. I feel like that choice is the answer - but then I'm the type of weird that will happily sit with my laptop in a cafe on my own people watching so...

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