Did you know that over 700,000 people in the UK are autistic and most of them are adults? Much has been written about children and autism but there is very little information about ageing with autism..
Most autistic people have additional problems such as depression, anxiety, sleep issues or learning difficulties and on top of all this comes the ageing process – which can be shit at the best of times.
Being diagnosed at 46, I understand myself as the child that I was and the adult that I am now but what next?
What will happen to me when I’m old (er) ?
A positive thing about diagnosis is that it’s given me permission to be myself. Pretending to fit in is exhausting, but now I have confidence to be me so I no longer have to work quite so hard at existing.
However, the way my mind works is that I dwell on the past and overthink the future. The future causes me concern because I fear being put in an old peoples home where I would be forced to be social. I’m not saying that every autistic person will feel like I do as we’re all different but as far as I’m concerned, it would be hell.
I’m not completely averse to being social but it has to be on my terms and I reckon I’d die pretty fucking quickly if my need for solitude was not respected or understood.
I don’t want to sit on a plastic chair and watch shit TV programmes.
I don’t want to play bingo.
I don’t want to eat my food with everybody else.
I don’t want to go on day trips to the seaside where I’ll be asked if I need a piss every five minutes.
No. Thank you.
I’m sort of hoping I’ll vacate this planet via my own home, but you don’t always get what you want do you?
I get that oldie homes work for many people. The social thing probably keeps them alive longer, but not me.
As I age, I will most likely need more medical intervention. I mean, I’m creaking like an old barn door now so it’s a given things will worsen. One problem with this is I struggle with verbal instruction, not because I’m slow, but because my brain can’t process more than one verbal instruction at a time so when medical professionals start reeling off instructions at one million miles an hour because they are SUPER busy, my brain goes screen saver and I just remember the first part or nothing at all. I need them to understand this about me and either slow up or write it down and when I request this of them I don’t want to be considered an awkward git.
One example of this is when I recently went for a Dexa scan. The radiographer fired out about four verbal instructions in one go. My brain went blank and I froze so he got up from his chair and physically moved my legs into position. He didn’t ask if he could move my legs for me and I resent that. I felt stupid. In the past I have been called stupid when I haven’t responded to verbal instruction. Now I understand why I struggle. I’m NOT stupid but people are ignorant.
I want healthcare professionals to understand that unfamiliarity makes me incredibly anxious which exacerbates my sensory issues, like pain threshold. I’m not being pathetic or difficult. I’d like them to treat me as they would a member of their family. That applies to everybody, regardless of autism, because we ALL matter. Would that radiographer have been as abrupt with his own mother? I don’t think so.
Although I’ve known I’m autistic for the past four years, I wasn’t able to say it. Had I have had the diagnosis it when I had that scan, I would have been able to explain about the verbal instruction (or OH would) and I wouldn’t have been made to feel like a tit.
The first children diagnosed as autistic are now middle-aged and I think it’s very important that we research how the autistic person changes physically, emotionally, cognitively and socially as they age. Most people need help in old age so it stands to reason that autistic people will require more support and understanding of their individual needs. I still fear old age but not quite as badly as before I was diagnosed..
The fear I have about not being here for The Boy is one I have the most trouble with. How will he cope without me? That thought physically hurts me but my job is to make sure that he can survive on his own. We’re on a path, him and I. He’s growing up and I’m growing old. I may still be 16 in my head but my body is convinced it’s 109. However, while I still have breath in my rapidly ageing body, I will do ALL I can to support my son. The day he no longer needs me will be a heart stopper but that’s what I’m aiming for. Not for my heart to actually stop cus I’d be dead like, but for him to be independent.
That’s what any parent aims for.
Some autistic people never achieve independence and that must be so hard for parents to deal with but I can only tell our story and independence is a possibility given the right support.
I’ve managed to survive for almost 47 years without support. However, it’s been hard and I don’t want him to struggle as I have. Once he’s living his life independently, I’ll embrace codgerdom in all it’s glory until Death points his bony finger my way and says in his best Sean Bean accent “Come on lass, let’s go ‘ome”.
And off I’ll go.
Thanks for reading.