Better Late Than Never | Organization for Autism Research

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I wasn’t diagnosed with autism level 1 until later in life. I was 35 when my counselor and I figured it out.  It still took a while to get an official medical diagnosis.  But once I did, it was one of the most validating things I’ve ever experienced in my life.  I finally had the explanation for why mostly all social situations were confusing and draining.  Despite all the upset teachers, and peers, family members and strangers who’d been upset with me for behaving wrongly, now I knew that I hadn’t been guilty of anything.

Once I was diagnosed, I was able to go to ASD support groups and social groups and finally meet people that I knew were like me in some way. At the very least, they knew what it was like to feel different like I did.

Along with those things, I now had an easy shorthand to describe certain aspects of myself.  Before I was diagnosed, it was so hard to articulate what was going on; now I can just say that I’m on the spectrum.

So the diagnosis didn’t change who I was but changed my understanding of who I was, which then helped me feel less embarrassment for being how I was.  I felt more freedom to explore things and be myself. 

But I also felt frustrated for all the lost time.  All those years, I could have known earlier, and lived a more whole, self-accepting and self-aware life.  I would have known what directions to go to meet others who’d understand.  And I wouldn’t have felt such painful isolation and loneliness for so long.

In addition to that, I could have had insight into medical conditions common to those on the spectrum.  That would have helped a lot.  At least I know now. I do have a number of conditions that are known to occur with ASD: hypermobility, hypotonia, digestive issues, autoimmune conditions, connective tissue problems.  Had I known when I was younger, I definitely could have received treatment for a few of these things that went unnoticed.

I do suffer from anxiety and depression, which I think is common as well for those on the spectrum, and I have a counselor and psychiatrist to help manage my mental health.  These conditions were greatly exacerbated when my mother found out she had cancer.  Since then, I have been her caregiver.  She is a fellow aspie.  She is my only family.  And I hope her cancer never comes back.

However, the things that give me some peace are Buddhism (though I am secular) and animals.  I try to visit sanctuaries regularly because it’s like free therapy to me and I hope to improve my time attending dharma talks or meditation groups.  And I like spending time in nature.

I hate to think of others waiting as long as I did to discover they’re on the spectrum.  I hope the efficacy of diagnostic tools improves so these things cease from happening. But it’s mind-boggling for me to think of how long the diagnoses didn’t even exist.  So for every century before our last two, no one ever knew at all.  Now that we do, I hope it helps us all live better lives.

Carol Smith is a self-advocate with Asperger’s who is interested in raising awareness of autism in women.

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