At 45, This Mom Realized She's on the Spectrum

woman sitting alone on swing

Mom Toni Boucher, 45, knows autism. She's been working with autistic teens and adults for the past 27 years. She writes books about people on the spectrum. The eldest of her three kids also has autism. But last year, Toni had an unsettling realization. She had a LOT in common with her clients ... Was she on the spectrum, too?

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Here, in an exclusive interview with CafeMom, Toni explains why she now identifies as having Asperger's syndrome.

Looking back on your childhood, were there any signs that you were autistic?
I've always had a lot of sensory challenges. Seams in socks and tags were painful for me as a child, so getting dressed every morning was an exhausting ritual.

I weighted down my blankets at night with books or piles of clothes and carried a bag everywhere I went full of heavy books. The pressure eased discomfort in my body. I didn't realize at the time that I was making my own makeshift weighted blanket and vest, which is fairly standard treatment for children with autism today.

... As I got older, I skipped lunch most days and read books or did homework in a deserted classroom so I could avoid other kids and the lights and sounds in the cafeteria. I've always been the kid on the outside. I had no idea what to say or how to act around [others]. 

[Rather than making eye contact], I always watched people's mouths instead. Looking into people's eyes felt overwhelming.

If someone interacted with me, I didn't know if they were angry or had a crush ... For example, a boy gave me his class ring in high school. I had no idea that this meant he wanted to be my boyfriend and I just put the ring in my jewelry box.

I have been fascinated with autism since high school and since this is my career, the degree to which I obsess about it flies under the radar. People expect me to be an expert. [But my family] will tell you that autism is virtually the only thing I talk about.

When did you realize that you have autism?
A defining moment happened when I went to the beach with my youngest son last summer during a surf camp for autistic children. My 6-year-old dragged me into the water and I had a mini-meltdown from sensory overload.

The sandy water washing over my skin was excruciatingly painful and I just wanted to crawl out of my skin ... I looked around and none of the autistic kids were showing the kind of distress I felt. I realized I was the most autistic person on the beach at that moment ... That was a moment of truth for me.

It forced me to ask [myself]: "To what extent has my life been impacted by my sensory overload and difficulty understanding social rules?" The answer was incredibly disturbing. It had been debilitating.

More from CafeMom: Moms Share Their Personal Autism Stories

I can't shop in most stores because I get overwhelmed in crowds and some of the lights and noises are physically painful. Other people have had to do most of my shopping for me through my adult years. On those occasions when I do go into a grocery store, it takes me a day or two to recuperate.

I get extremely anxious when I go to a new place and may drive around lost for two hours before the thought occurs to me that I should ask for help. I'm 45, and I am just now learning how to ask for help.

I have had a history of abusive relationships ... My brain does not allow me to quit once it begins something. It's a compulsion ... I had no idea what healthy boundaries were in relationships until my 30s when people saw what I was going through and started to teach me the social rules by directly stating them.

And ... I have a hard time breaking rules, both society's and my own unwritten rules. It took me a long time to realize I could break the "till death do us part" rule if someone was abusive.

Many of the aspie women I talk to today have experienced this kind of difficulty in relationships ... We don't know how to listen to our inner voice.

How has your diagnosis changed the way you move through the world?
I do not have an official diagnosis ... It's very difficult to find evaluators who know how to evaluate autistic women. I hear this same story from women around the world every day.

Autistic females are often aware of societal expectations and take great efforts to mask our differences and follow the rules. [We] put Herculean efforts towards appearing "normal."

But now, instead of expending all my energy trying to fit in, I focus my energy on making decisions that are ultimately more in line with what I can tolerate or what is good for me.

More from CafeMom: 'I Rarely Share That I'm on the Spectrum': What It's Like Being in Your 20s With Autism

Do you share with people that you have Asperger's?
I share sometimes with my autistic clients if I think it will benefit them. Some of them are recently diagnosed and have felt very isolated and misunderstood their whole lives ... I also share with my colleagues when I believe that telling [them] will benefit autistic people in general or my clients.

How do people react?
The reactions are mixed ... Most neurotypicals say they can't see it in me. I've spent my whole life studying what "normal behavior" looks like so I can go about my day without standing out. I drive, have children, own a home, and have a career that I love. People automatically assume that this means I can't be on the spectrum.

Other aspies pick up on the Asperger's in me right away.

Has identifying as an apsie changed your relationships at all?
I have not talked with the kids about it but would be open to it if the conversation arose. My husband recognizes how obsessive I am and that I have significant sensory issues. He's the one who does the grocery shopping, for example.

And he calls me "Spock," so he didn't seem surprised by my realization.

My relationship with ME is 100 percent improved. I am much more accepting of the person I am now ... I don't worry now about hiding my imperfections and quirkiness from people. If I expect my clients to be accepting of who they are, then I really need to come to the table living up to the same expectations.

 

Image via Sapol Chairatkaewcharoen/Shutterstock

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