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Autistic Adults: how can things be improved?

Pixiefox

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
  • Pixiefox said:
    1. Diagnosis for adults - does this really have to be done by a medical professional

    Yes. This is due to the diagnosis being one of a disability and the corresponding impact it has on benefits, extra rights etc.

    If you want to know if you are neurodiverse then it is easy enough to self diagnose but the label can be a game changer and needs to have gatekeepers to stop it being abused.

    Pixiefox said:
    Employers - should be required to take training in autism

    A nice idea in principal but from having worked in management and in the trenches I know that management have to learn so much stuff and often don't get the time that the stuff that has less impact on the bottom line for the company is often left as a "one day we'll do it" option.

    It would be great to have but realistically is isn't going to happen.

    Pixiefox said:
    3. Businesses - shops, cafes, public transport, etc, should stop having music playing and loud tannoy announcements

    Only some autists have hearing sensitivity so even if it is half then that makes up 1% of the population. Are we really going to expect the other 99% to change what they do when we are quite capable of wearing noise cancelling headphones?

    I get where you are coming from with these suggestions but I have a very pragmatic view here that we are being seen as the tail wagging the dog by pushing for all these changes when so few of us are out in these environments anyway.

    Personally I think we need to learn to adapt to fit in. It won't work for all of us but those that can't/won't adapt are probably going to struggle even if all the changes are made anyway.

    I think we need to learn how to protect our sensitive parts (sunglasses for bright lights, earphones for loud environments, mask for sensitive noses etc) and try to find environments that are more tolerable when needed.

    Spreading awareness is going to be much better on the uptake when we can present positive examples of us in the media rather than being seen as needy, demanding and whiny and forcing people to make lots of accommodations for us.

    It is a slow process so best if we take control of managing our sensitivities in the meantime.

    It would really help if we weren't such a mixed bag of needs - that difficulty in people being able to identify us actually makes it look as if we are making it up or have a different mental health issue.

  • in reply to Iain

    Some good points Iain - if I didn't know myself that I was autistic until I was in my fifties, i can't really expect others to identify me as autistic.

    I think I might start a new thread about what we might be able to do to help ourselves - I'll have a think.

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