This post was written by Susan Dunne, who has autism and is the author of "A Pony in the Bedroom." You can follow her on Twitter @sueandspot. This post originally appeared on the Guardian Social Care Network. Read more of their articles here.
My neck has been refusing to turn properly for some time. Perhaps it’s hurting but I’m not sure – like many people with autism I can find it hard to recognise pain and even harder to voice it. I should probably have had it checked out months ago but in the absence of family, partners and friends to point this out, I haven’t.
Although my neck is affecting my driving, it takes a near car crash to make me go to a noisy, alien health centre. The doctor who sees me is kind enough but he moves into my space, touches my neck and stares when he asks questions. When he diagnoses the problem as “a bit of wear and tear” I grab my prescription and run.
Later, swallowing the prescribed anti-inflammatories, it occurs to me that “wear and tear” is probably medical speak for getting older. I’m in my early fifties and it’s getting harder to convince myself that my autistic self-reliance will hold out forever. Before long I may need some level of support – and that scares me.
Focus on childhood research means that many older adults with autism today may not have been diagnosed and risk having autistic symptoms mistaken for mental illness or dementia. And concurrent with a lack of research and knowledge is a lack of understanding and training in adult health and social care. This matters, as the isolation that many people on the spectrum experience due to social and communication difficulties is likely to worsen with age. When you have very limited support networks, you may become increasingly reliant on social care.
Many of us on the spectrum replace social relationships with intense areas of special interest. What, I wonder, will happen when the brain cells just can’t do quantum physics any more? Where will the model train collection acquired over 70 years fit in the constrained space of social housing or care homes? Will those of us who have lived a cocooned existence suddenly be expected to turn into social butterflies in a reminiscence group?
Homogenised solutions for care of older people are unlikely to work well for anyone. For people with autism, they can be damaging and distressing. Rigid routines and the ability to close the door on the world when it gets too much may be crucial to managing anxiety. With autism it is easy to be overwhelmed by sensory input from noise and people standing too close. Having a chirpy care worker turn up at unexpected hours to make small talk and suggest joining bingo at the day centre is unlikely to be of benefit, however well meant.
I hope by the time I need age-related support that health and social care professionals will appreciate the importance of consistency and routine in managing anxiety in autism. I’d like it if they understood why loud noises, unexpected touch and doors left open can be anathema. I’d prefer it if I’m not assumed to have mental health issues or the onset of dementia because my brain processes information differently.
Given the present lack of research, knowledge and training in ageing and autism, I’m not optimistic that any of this will have happened by then.