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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

  • I think for employers to better cater to autistic people they would need to have autistic people involved. In my experience, neurotypical people seem to struggle with empathising or understanding what makes autistic people tick. They can have the best of intentions but it's quickly forgotten.

    For example, where I work had an initiative to improve diversity & inclusion and celebrated Autism Awareness Day and had speakers with autism come to give presentations to the company about how to make it a better place to work. A few months later they announced a move to a new office, which was completely open plan and had no meeting rooms, and advised people could take phone calls at their desk, and people could wear headphones.

    Someone asked if neurodiversity had been taken into consideration and they were told "people need to grow up, everyone is capable of working in a noisy environment once you get used to it". I was gobsmacked.

    The same person had been boasting about how they celebrate neurodiversity a few months before. It seems like it's just about broadcasting your tolerance etc rather than making meaningful changes.

  • in reply to Paper

    I'm gobsmacked too! What lazy thinking and totally inconsiderate and uncaring. I think this person is virtue signalling more than anything actually useful. I do wonder how much diversity awareness isn't a tick box scheme with no real intent behind it? If you look at the way things have stayed the same for other groups, like pay rates and promotion for women, employment of black and asian people, you see not a lot has changed, theres still very, very few female board members of FTSE 100 companies and women continue to earn less than men in the same roles. I don't think it will be any different for us either, it will be the same group of mostly white men deciding things and promoting others like them.

    I was diagnosed by a psychologist, I don't what tests he used or anything or even if he did any?

    I wish shops would stop playing music too, tanoy announcements whilst annoying are probably needed, for example when someone is needed at the tills.

    I wish there was more help for adults, even if we don't need it all the time, someone we could phone or drop in and have them actually do something would be good. Also stop relying on tech to do everything, not all of us are good with tech, but theres an expectation that we will be because we're autistic. I just feel it would be nice to have been asked if I have any additional needs and have it explained to me what's on offer. For us who are late diagnosed it's not good enough to be told that seeing as you've coped all your adult life with no help you can continue to do so. Do they never consider the reason why we're going through the whole rigmarole fo diagnosis? It's because we're having problems and have had them throughout life, they've probably just been mislabled.

Reply
  • in reply to Paper

    I'm gobsmacked too! What lazy thinking and totally inconsiderate and uncaring. I think this person is virtue signalling more than anything actually useful. I do wonder how much diversity awareness isn't a tick box scheme with no real intent behind it? If you look at the way things have stayed the same for other groups, like pay rates and promotion for women, employment of black and asian people, you see not a lot has changed, theres still very, very few female board members of FTSE 100 companies and women continue to earn less than men in the same roles. I don't think it will be any different for us either, it will be the same group of mostly white men deciding things and promoting others like them.

    I was diagnosed by a psychologist, I don't what tests he used or anything or even if he did any?

    I wish shops would stop playing music too, tanoy announcements whilst annoying are probably needed, for example when someone is needed at the tills.

    I wish there was more help for adults, even if we don't need it all the time, someone we could phone or drop in and have them actually do something would be good. Also stop relying on tech to do everything, not all of us are good with tech, but theres an expectation that we will be because we're autistic. I just feel it would be nice to have been asked if I have any additional needs and have it explained to me what's on offer. For us who are late diagnosed it's not good enough to be told that seeing as you've coped all your adult life with no help you can continue to do so. Do they never consider the reason why we're going through the whole rigmarole fo diagnosis? It's because we're having problems and have had them throughout life, they've probably just been mislabled.

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