‘I’m different, not broken’: How my autism diagnosis changed my life Australian Books

Realizing that I had autism was slow and piecemeal. Looking back, the earliest clues were in my adolescence, and many other clues spread in my adulthood.

When I was doing my BA, I took some psychology courses. I love learning more about this “disorder”, but sometimes it’s hard to understand why some characteristic (diagnosed) behaviors seem to me to be very normal thoughts, feelings, and behaviors. I was seriously considering going on to major in psychology at the time, but a college career advisor told me that there weren’t many jobs for psychologists and maybe I didn’t have the “people skills” for that career.

Then I became a mother. My first son had some difficulties in daycare and preschool and the teachers thought he had Attention Deficit Hyperactivity Disorder (ADHD). A medical expert thinks autism is a possibility, but I don’t believe it. He’s not like the autistic kids I read about. He is smart, articulate, funny, and loving. I think he looks perfect now, but as he progressed in school he learned to act like everyone else – a pattern I should recognize.

My second son had an even bigger challenge and was diagnosed with autism when he was two years old. Over the next few years, I read everything I could find about autism, and most of it was—given the prevailing wisdom at the time—about people who had gone through many of the same challenges and showed signs of being different from mine. Many boys with the same characteristics, which is not surprising. son. “Success” to me is making him happy, being able to express his needs, and not hurting himself or his brother. I won’t go into details here, it’s his story if he wants to tell it, but I’ll let you know that he’s grown into a very good young man with a big heart and creative talent, and he makes us every day proud.

When the boys went to school, I sometimes wondered if my oldest son was actually in that range, but then I thought about how much he was like me and blamed his challenges on being shy and smart. He was diagnosed with Asperger’s Syndrome (as defined by DSM-4) when he began struggling with social issues and relationships and seeking support in high school.

Over the next few years, he and I learned more about Asperger’s. When we saw a lot of him in what we read, we nodded conspicuously and shared a lot of “aha” moments and giggles. While most of it is still about men, I’m amazed how much of it resonates with me. Again, I’m not going to tell you his story because that’s not what I’m going to tell – other than to say that he has grown into an equally good young man. He has surpassed my academic record, achieved a successful career as a university researcher, and also took the time to support and mentor others, a true gentleman.

I continued to learn about autism as the kids grew up, but it took me a long time to really appreciate the fact that women can have autism. It was even longer before I began to accept that perhaps many of the similarities between my own and my son’s thoughts, behaviors, and challenges were due to shared neural types and not just shared genes.

After thinking about this possibility for about a year, my first step was to try it with my oldest son. I casually asked him, “Do you think I might be autistic?” I was ready to make him laugh or express surprise at the crazy idea, but he said, “Yes, I believe you are. You Where do you think we got it from?”

With some trepidation, I asked my husband the same question. His reaction was beyond my expectations. “I’ve known it since I met you.”

For a while, I sat there diagnosing myself. I didn’t seek a formal diagnosis because I didn’t see any benefit in it; I was too old for any intervention or support. Given the stigma and stereotypes about autism I often experience in my children’s lives, I’m also concerned that this will affect my career.

Both of my sons are clients of the same psych clinic, the ASD clinic, which was referred to me as an autism specialist when we moved to Melbourne in 2014. With great encouragement from my family, I decided to present my subject with my youngest son’s psychologist-principal of practice who has autism, with whom we spent many hours.

I think I’m probably going to cover it up so well with him that he’ll turn down this ridiculous suggestion. At the end of one of our meetings, with the spiritual support of my husband, I asked a “put your hand on the doorknob” question: “Are you doing diagnostic evaluations only on children, or do you do diagnostics on adults as well?”

He replied that the clinic had assessed people of all ages and asked who I was thinking. I said, “Well…I’m just wondering if I might have autism.” I held my breath, waiting for him to laugh. To my surprise, his response was: “You haven’t been diagnosed yet? I had assumed. In my notes, I wrote ‘Mom has autism’.”

So we made an appointment for a diagnostic evaluation. In the weeks leading up to this, I was very nervous. I’m not worried that I’ll be diagnosed with autism because I’ve been self-identifying in this way for a while and am comfortable with it: I’m worried that I’ll be diagnosed as non-autistic. What if autism isn’t the explanation for my differences and challenges, I’m just a flawed neurotype?

The interview portion of the diagnostic process was so eye-opening that I was really happy to have my husband with me. I highly recommend anyone going through this process to bring someone who is familiar with you. If you’re like me, you’re stuck in a lifelong mode of giving “correct”, socially-desired answers to questions.

The second part of the assessment is hard: it’s a series of tests! Here, I’m a guy with an extreme fear of failure and a strong need for control, who went to school with the conviction that a test below 100% equals failure.

At this stage, I’m pretty sure he’s going to say, “No, you’re not autistic. You’re a normal human with no social skills and a bunch of weird thoughts and behaviors. You just have to work harder.” He didn’t say that.

That day was life-changing for me. This is official confirmation that the challenges and issues I’m having are not not trying hard enough or not being good enough. I am different, not broken. The things I’m ashamed of and try to hide from the world are just a normal part of autism, not a character flaw unique to me.

Growing up to be autistic, by Sandra Thom-Jones. Photo: MUP

I know many people are hesitant to seek a diagnosis. Parents specifically spoke to me about their reluctance to seek a diagnosis for their child or disclose known diagnoses to their child. They expressed reluctance to “label” their children and feared that being identified as autistic would damage a child’s self-esteem.

As a woman with a (very) late diagnosis of autism, I would revisit both.

First, your undiagnosed child with autism isn’t protected from a lack of diagnosis: the labels others use to explain their differences are worse. I knew growing up that I would have been more comfortable being called “autistic” than the terms my peers often used to describe me — like weirdo, freak, and other words I didn’t want to publish. Second, in my experience, one’s self-esteem is much better for being a successful autistic than a failing neurotypical.

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