Published on 12, July, 2020
The amazing expert at my PIP assessment stated that as I was diagnosed at 46, I can't be that bad because I held jobs, had a mortgage, etc, and the condition doesn't change or get worse. I have had the same conversation with my partner recently about this, and am interested in opinions.
The way I described it to her was - when you are younger, you can party all night & work all day - for me there was no partying because I was up a 4am so I could be focused by 9am, then shutdown when I got home. However, as you age, the partying gets harder to do, and recovering from one eventually takes a day or two! So, for me, rather than the condition getting worse, it's the affects of it that are harder to deal with and recover from.
What are other peoples experiences with this? I can't find much about it online!
I agree with you.
The true extent of the difficulties we experience as a result of autism are often masked or camouflaged. Earlier in my career I could do really demanding jobs for a couple of years at a time then I would get physically ill, and/or experience high levels of stress and anxiety. Back then, not knowing I was autistic, I would move on to the next challenging role. A fresh start would usually re-energise me, at least for a while. The period of time I could push myself for reduced as I got older. I'm in my late fifties now and I am off work with stress currently, feeling really exhausted. At least the intense agitation I was experiencing has calmed down now - I really felt I was being 'driven to distraction' by massive change and uncertainty at work, combined with hostile management.
Autism fatigue and Burnout often result from pushing ourselves too hard for too long. There isn't that much published about this although it seems to be well known about and accepted in the actually autistic community. Kieran Rose gave a talk at a recent autism conference on the subject which I found very useful. I hope the video will be available soon, in the meantime here is a piece on masking from his website: http://www.theautisticadvocate.com/2018/07/masking-i-am-not-ok.html
The psychologist who diagnosed me also explained that stress intensifies sensory aspects of autism so that things become harder to tolerate. Again this makes autism seem 'worse'. As we get more confident in our autistic identity we are able to drop our masks - this too can make it seem as if we are becoming more autistic. Once we realise the negative effects of suppressing coping mechanisms like stimming it is harder to keep covering up.
We all change and evolve during our life course and while fundamental aspects of autism may remain unchanged the way it combines with hormonal, physical and psychosocial aspects as we age is bound to have an impact. It's ridiculous to suggest otherwise. Sounds to me like the PIP assessor is trying to deny the disability associated with autism and suggest that you just need to 'try harder'. Trying too hard for too long breaks us in the end, and it can take a very long time for us to mend enough to resume our 'normal' working lives, if we ever do.