It’s been ages since I posted here and I feel so neglectful of my poor Arty Auty page. I’m not a professional blogger nor am I any kind of advocate, just an ordinary person who has been negotiating five years of self-identity since discovering my autism. And my inner dialogue has changed a lot since writing previous posts.
My most eye-opening experience has been the course, The Inside of Autism run by Kieran Rose, The Autistic Advocate and Nic King of PANDAS. Worth every penny and tells the truth of autism from an autistic point of view.
Now, I feel a need to return here as an aging autistic person because I am afraid – afraid of the future for so many of us getting older and approaching retirement age. Having searched online, there is so little about us as if we don’t exist. When a friend of mine was diagnosed in her 70’s, her doctor said she had never met an autistic pensioner! How would she know? Especially as many of us didn’t know ourselves plus society seems to believe that only children are autistic. Like they don’t grow up!
Because I’m speaking from personal experience and my own diagnosis, I will use the ‘autism’ word in my writing, however I totally embrace ND and any other description people use. The only one I have difficulty with now is Asperger’s. I cannot get past the Nazi association. Also, I have learned that ‘low’ and ‘high’ functioning autism, does not exist. Again, a medical misunderstanding of nonverbal autistics, such as Naoki Higashida, who I have no doubt, are far more intelligent than me. Only they were not given any means to communicate, so got labelled ‘low functioning.’ But that’s their story, not mine.
To me, my autism is a normal human neurology. Just very misunderstood and judged. The problem we have is that ‘difference’ is now considered and labelled abnormal by a majority rule that models the world on itself.
Since I began this blog, I have learned so much about the autistic community and now understand my own neurology far better. Not everything is clear cut, but I know that I am not ‘disordered’ nor with a ‘condition’. Neither do I ‘have autism’ or ‘learning difficulties.’ Au contraire – I have many professional qualifications to my name, even though I was damned at junior school and put in the remedial group then expelled at age seven! But that was at the other end of my life. I’m here to talk about the present and future.
Before today, I was influenced by medical speak, having only heard what doctors were telling me. Now, I have listened to other autistics, advocates, read books by autistic authors, watched videos, listened on Facebook and belong to some groups, full of amazing autistic people.
Another eye-opening clarity was a realisation about Mum. After Dad died, I cared for her at home and now, it is blatantly obvious that she was autistic. Never one to mix with people, especially neighbours who considered her reclusive, she was obsessed with reading books and cooking as a science. Highly intelligent, she passed the difficult exam to become a morse-code operator in the WAAF during WW2.
Blunt to the point of hurtfulness, a difficult perfectionist, she always bottled her emotions and had little eye contact. When upset, she would screech, flapping her hands in the air. She was very practical, literal and hypersensitive. If you touched her, she would scream in pain and have bruises from the lightest tap. It is obvious why we shared a bond as I constantly tried to fathom her ways – they were my ways, only I didn’t know it back then.
I can remember telling her that bright light bothered me. Her advice was to look at something dark. This saved me on many occasions of watery eyes, long before I understood hypersensitivity. So, it is obvious that Mum had developed strategies to cope. As an undiagnosed, autistic woman, she had worked out her own tools to survive the world. Lucky for her, she met my Dad, who adored her as she did him. He was her place of safety.
After my father passed away, I returned home to care for Mum. I knew that putting her in a home would have probably shortened her life or had her labelled with dementia. I don’t have children and wonder what will become of me in a care system that has not a clue about autism. It’s bad enough for non-autistic folk. Even the education system is struggling to understand autism, but no-one is considering us older auties. Yes, we do grow up.
Image: Always ask permission before touching an autistic person. Be gentle as hypersensitivity can trigger meltdown regardless of age.
The biggest issue for us would be hypersensitivity and being handled by care staff. I feel I must address this in other blog posts as there is a lot to cover and I don’t want this one to become overly long.
Until next time,