Autism and Blindness: Reflections on My Diagnosis

Today, I read a post by an autism MOm feeling lucky that her children were diagnosed relatively early on. It caused me to reflect on my late, but not exceptionally late diagnosis of autism. I was diagnosed at age twenty. This was not because no difficulties were noted early on, but because my parents felt a diagnosis would be limiting me, so they didn’t seek one. And I can see why.

I was autistic all my life. I was autistic when the school questioned my intelligence because of my poor behavior and what I can only think was underachievement. I was autistic when I was finally accepted into a high level, mainstream high school. In 2003, I attended a performance by some of my teachers who were mocking school policy, and one of the things they mocked was the school’s overrepresentation of special needs and gifted students. I had three of the conditions they mentioned the school had perfect programs for: intellectual giftedness, autism and blindness. Nonetheless, if my autism had been diagnosed before my acceptance into this school, I most likely wouldn’t have been accepted. In a way, I applaud my school for accepting me as an individual. I didn’t fall apart, or at least not while still there, so probably they met some of my needs to a reasonable degree.

I was autistic when going to blindness rehab and independence training. I was autistic when enrolling as a psychology major at the nearby college. Had I been diagnosed before my enrollment, I would most likely not be accepted regardless of my qualifying high school diploma. I was diagnosed while at this college and in independence training.

I was autistic and diagnosed with it when I enrolled as a linguistics major at university. I was autistic and diagnosed with it when I dropped out. I was autistic and diagnosed with it when I was admitted to the psychiatric unit, although this unit wouldn’t accept my diagnosis at first.

My parents believed that an autism diagnosis would limit my ability to become independent. It did. I believe that a lack of diagnosis would limit my ability to have a good quality of life. It did. And I for one believe that quality of life is more important than independence.

Some people believe that an autism diagnosis would enable a child’s or adult’s care team to cut the child or adult some slack with regard to their behavior. I believe that my parents and teachers in high school cut me more slack than my support staff at independence training or the college teachers did, and this is why I needed a diagnosis. They sought a diagnosis because they knew my behavior wasn’t normal. Accpeting my behavior as normal for me might’ve worked when I was a child, but in the real world, it doesn’t work.

I recetnly read an article in a magazine for parents of blind children about a mother whose child was suspected of having autism in addition to being blind. Eventually, the parents decided not to pursue a diagnosis, as they reasoned the child’s behavior was understandable given her character and blindness. My first reaction to this article was that I’d trade my diagnosis any day for true understanding of me as an individual. The thing is, the systmem doesn’t work that way.

5 thoughts on “Autism and Blindness: Reflections on My Diagnosis

  1. Thanks for sharing this. It has made me think about my own experiences, which, while nothing like as difficult as yours, have been impacted significantly by ‘diagnoses’. I’m not quite ready to share them yet, but a later-in-life diagnosis brought both positives and negatives, and in differing ways to those around as to those diagnosed or otherwise. I’m sorry that’s cryptic, but I just wanted to say thank you with some kind of context around it.
    I do think that, on balance, while it could legitimately be seen as just labelling something, diagnosis makes a positive difference. Understanding a bit more by researching, and knowing that by the existence of a recognised condition, one is not alone, and moreover a set of possible ameliorating treatments may exist, offsets the feeling of being faulty – that was never really in any doubt in the sufferer’s head – because someone else knows what the hell is going on.
    Just my all-too-brief and poorly explained thoughts.

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    1. I understand. You don’t have to share anything you don’t feel comfortable with. I’m just glad you felt something to relate to in my post. Hope you’re feeling a bit less alone.

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  2. You pose quite the dilemma here! As parents we want to do the best and right things for our kids. Sometimes we get it right and sometimes we fail miserably. I have an adult son with autism who is so high functioning now that I regret I ever told him that he had it. Yet at the time I believed I was helping him. He has never used an accommodation or wanted help of any kind. I think he is embarrassed by his diagnosis. I never intended for that to happen!

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