When People Ask How My Autism Went Undiagnosed for So Long
I’ve noticed a number of threads on Asperger’s/Autism/ASD forums where a younger person with an ASD quizzes those with a late diagnosis as if they don’t totally believe them. They want to know how it was ever possible to be autistic as a child and not be diagnosed. It’s a perfectly reasonable question, and one I would probably be asking if I were in their position. Using my own experiences, I will explain exactly how it was possible.
I was born in the mid-1960s and lived in a village in rural England. I was my mother’s first child, so she had nothing to compare me to and probably didn’t realize just how strange some of my behavior was. For example, I didn’t speak until I was 3 and a half, unless you count running up and down shouting nonsense words. Her own mother lived over 200 miles away and she hardly saw her, so she had no one to advise her.
My mother really wanted children, but it took her five years to conceive. When I was born, she was so overjoyed that the last thing she wanted to think about was whether I was “normal.”
I was never neglected as a child. Like most parents of that generation, they were happy to take their child to the doctor for physical ailments like ear infections and broken bones, but it just never occurred to them to seek medical attention for matters of the mind. Seeing a psychiatrist was seen as something rich Americans and actors did, in the same way that “suntan lotion” aka sunscreen was seen as something rich women on yachts used to get a better tan.
Children were often just not considered as important then as they are now. Adults came first and children were left to get on with it. It wasn’t quite “children should be seen and not heard” (that was considered very old-fashioned, even in the 1970s), but children were taught to be content with what they were given and keep their mouths shut. It was legal to smack your children in 1970s Britain and any behavior which your parents considered unacceptable could result in pain. Any emotional outbursts would have resulted in a smacking, so I learned to keep my mouth shut and my feelings to myself.
It would have been nice to think my problems could have been picked up on at school, but they never were. By the time I went to primary school aged 5, my speech was typical and my reading age was excellent, so there was never any cause for them to be concerned. I’m sure my behavior was somewhat odd, but that was considered an irrelevance.
At the age of 11, I won a scholarship to a public (fee-paying) school. While I was there, I was bullied, deeply unhappy and developed a series of facial tics and repetitive, compulsive behaviors. I tried to keep these confined to the home. My parents noticed, of course, and I have the vaguest memory of my father whacking me across the hand with a ruler to try and stop me. I never told anyone about the bullying, as it wasn’t considered appropriate to burden other people with your problems.
For much of the school day, I retreated into an icy silence, as it was easier than trying to navigate the shark-infested waters. I found out later that the teachers were aware of the bullying, they just didn’t care. It was a fee-paying school and my job was to achieve excellent exam results, so that it would get more customers in and keep the money flowing. They didn’t care about my health or psychological well-being, so long as I got good results and preferably was still alive at the end of it.
If a child today exhibited the unusual behaviors and speech delay I exhibited when I was a child, they would almost certainly be taken to the doctor/speech therapist/child psychologist, but this was not usual then.
Another thing to remember is that Asperger’s syndrome was only recognized as a distinct and separate diagnosis when the diagnostic manuals the DSM-IV (1994) and the ICD-10 (1993) were published. I was born in 1966. When I was a child, autism was thought of as a condition that automatically meant having a low IQ and serious behavioral problems, neither of which I had. It would therefore have been impossible for me to have been diagnosed as a child.
I’ve heard it said that late-diagnosed autistics can be described as “survivors” and it certainly feels that way to me. I’ve had a lifetime of struggle. I grew up feeling like an outcast, with no explanation as to why I was different, and it’s only now that I can finally make sense of my life. So please don’t tell me that I’m not autistic.
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