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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

  • We should go back to the old ways where Irish Catholic Religious Orders of Priests & Nuns ran the hospitals and the mental health services properly, in a similar way to how autism charities are now supporting autistic people - already, with talk of privatising the NHS due to decades of mismanagement and wastage of funds with too many managers who are useless in their roles and are massively overpaid, getting in the way of staff who are trying to provide proper patient care, mental health and hidden disabilities needs its own separate body away from the NHS, which many NHS staff have privately said that is much needed - such a separate body would be able to focus more on directly helping people and keeping up to date with latest trends and research through regular training for all staff - given that university teaching hospitals provide a consistently higher standard of patient care, maybe they should be taken out of the NHS altogether as the NHS is potentially dragging them down and they should spearhead a separate body for MH & HD issues 

Reply

  • We should go back to the old ways where Irish Catholic Religious Orders of Priests & Nuns ran the hospitals and the mental health services properly, in a similar way to how autism charities are now supporting autistic people - already, with talk of privatising the NHS due to decades of mismanagement and wastage of funds with too many managers who are useless in their roles and are massively overpaid, getting in the way of staff who are trying to provide proper patient care, mental health and hidden disabilities needs its own separate body away from the NHS, which many NHS staff have privately said that is much needed - such a separate body would be able to focus more on directly helping people and keeping up to date with latest trends and research through regular training for all staff - given that university teaching hospitals provide a consistently higher standard of patient care, maybe they should be taken out of the NHS altogether as the NHS is potentially dragging them down and they should spearhead a separate body for MH & HD issues 

Children
  • in reply to IrishInManchesterUK
    IrishInManchesterUK said:
    too many managers who are useless in their roles and are massively overpaid, getting in the way of staff who are trying to provide proper patient care,

    I understand what you mean here but since I spent a long time working on that side of the fence as well as on the front lines it helps to understand what they are primarily there for.

    The managers are there to make sure the front line deliver what the upper management want. Not what is the best thing for patients, not to make employees happy and not to be necessarily good value for money all the time.

    Managers (often in NHS roles) have to keep front line staff from doing things that are not cost effective. If there would be a benefit of giving a third of patients a CAT scan for example then a nurse may want to do this, but a manager understand there is limited availability and a massive cost to doing this, so will review and restrict what can be proposed in order to keep the department from overusing the overall budget.

    They also have to try to keep the peace when staff don't get on with one another or with patients.

    When one employee starts to cause disruptions in the team then they need to be brought back in line or removed and this is a careful process that needs to be done properly to avoid lawsuits. This sort of interaction is often what impacts autists as our social skills frequently lead to us clashing with others.

    When staff are performing badly or not following the "company line" then the manager also has to bring that employee back to an acceptable performance level or find a way to let that employee leave. This is another situation autists find themselves in and the most common approach I've seen is for the employee to have their life made just difficult enough that they choose to leave but without grounds to sue for discrimination.

    I don't support this process but I know so many managers who have used it (not specifically for autists but in general) because the effor to make an "underperforming asset" valuable again is often so difficult that they prefer to push them out instead.

    Ultimately they are just people - front line staff themselves once but who were promoted and made to do a lot of the management stuff they probably don't like.

    I'm sure there are a few who are on a power trip but these are often unable to perform themselves and end up being sacked.

    Just some observations from my decades on the other side of that fence.

    For what its worth I spent 4 years working in a supermarket while going through university and just after - I was always being pushed to move into management there as my education made me stand out amongst the rank and file of the shop floor / warehouse staff. I couldn't imagine a worse job at the time so I declined.