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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

    Sadly even when they are aware they do not really understand what it is like. It seems however much we try to explain, others, apart from those who live with us, will really not understand how much planning goes into small every day activities. Due to a lot of changes in my work at the moment I am struggling to do much at all on Fridays which are non working days, due to being so exhausted from my working week. I am getting to the stage where even mentioning it is exhausting.

    In my experience, just when you think they get that I need warning or to plan my day, something unexpected gets passed to me to do.

    I think, just as it is difficult for people without children to understand our daily experience as parents, those who are neurotypical can't understand what it is like for us. 

    Even when people get training this doesn't always help, as I have come across people who have and think they understand, but really have no idea and don't want to listen.

Reply
  • in reply to Paper

    Sadly even when they are aware they do not really understand what it is like. It seems however much we try to explain, others, apart from those who live with us, will really not understand how much planning goes into small every day activities. Due to a lot of changes in my work at the moment I am struggling to do much at all on Fridays which are non working days, due to being so exhausted from my working week. I am getting to the stage where even mentioning it is exhausting.

    In my experience, just when you think they get that I need warning or to plan my day, something unexpected gets passed to me to do.

    I think, just as it is difficult for people without children to understand our daily experience as parents, those who are neurotypical can't understand what it is like for us. 

    Even when people get training this doesn't always help, as I have come across people who have and think they understand, but really have no idea and don't want to listen.

Children
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