‘I Was Different, Not Broken’: How My Autism Diagnosis Changed My Life | Australian books

The realization that I had autism came slowly and piecemeal. When I look back, the first ideas date back to my teenage years, and many other clues spread throughout my adulthood.

When I was studying for my Bachelor of Arts, I took courses in psychology. I enjoyed learning about this “disorder,” but sometimes struggled to understand why some of the characteristic (diagnostic) behaviors seemed to me to be completely normal thoughts, feelings, and actions. At the time, I was seriously considering continuing with a major in psychology, but the college career counselor advised me that there weren’t many jobs for psychologists and that I maybe didn’t have the “people skills” for this career.

Then I became a mother. My first son had some difficulty in daycare and preschool, with teachers expressing the opinion that he had Attention Deficit Hyperactivity Disorder (ADHD). A medical professional suggested autism as a possibility, but I wasn’t convinced. He was not like the autistic children I had heard of. He was bright, articulate, funny and loving. I thought he was perfect the way he was, but as he progressed through school he learned to behave like everyone else – a pattern I should have recognized.

My second son had bigger challenges and at two he was diagnosed with autism. Over the next few years, I read everything I could find on autism, most of which concerned – unsurprisingly, given the prevailing wisdom at the time – male children who encountered many of the same challenges and demonstrated many of the same characteristics as my son. For me, “success” was for him to be happy, to be able to communicate his needs, and not to hurt himself or his brother. I won’t go into detail here, as it is his story to tell if he chooses to tell it, but I will let you know that he has grown into a wonderful young man with a big heart and a great talent for life. creative writing, and it makes us proud every day.

As the boys progressed through school, I occasionally wondered if my eldest son was also on the spectrum, but then I thought how much he looked like me and attributed his difficulties to his shyness and his intelligence. When he began to struggle with social and relationship issues in high school and sought help, he was diagnosed with Asperger’s Syndrome (as defined by DSM-4).

Over the next few years, he and I learned more about Asperger’s Syndrome. We nodded conspiratorially and shared many “a-ha” moments and laughs as we saw it so much in the stuff we read. While most of it was still about men, I was surprised how much it resonated with me. Again, I won’t tell you his story because it’s not for me to tell – except to say that he grew into an equally wonderful young man. He has already surpassed my academic achievements and has a successful career as an academic researcher, but also finds time to support and guide others and is a true gentleman.

As my children grew up, I continued to learn about autism, but it took me a long time to really understand the fact that women can have autism. It took me even longer to begin to accept that perhaps the many similarities between my own thoughts, behaviors and challenges and those of my sons were due to a shared neurotype rather than shared genes.

After considering this possibility for about a year, my first attempt was with my eldest son. I asked him casually, “Do you think it’s possible that I have autism?” I was ready for him to laugh or express surprise at such a crazy thought, but instead he said, “Yeah, I’m sure you are.” Where do you think we got it from?

With some trepidation, I asked my husband the same question. His response was not what I expected. “I know it since I met you.”

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For a while I sat with my self-diagnosis. I didn’t ask for a formal diagnosis because I didn’t see how that would be beneficial; I was too old for any type of intervention or support. I also feared it would affect my career, given the stigma and stereotypes around autism that I had so often experienced in my children’s lives.

My two sons were clients of the same psychology practice, the ASD Clinic, which had been recommended to me as an autism expert when we moved to Melbourne in 2014. After much encouragement from my family, I decided to tackle the about my own autism with my youngest son’s psychologist – the director of the practice, with whom we had spent many hours.

I thought I had probably done such a good job of masking it in front of him that he would dismiss the suggestion as ridiculous. At the end of one of our sessions, and with my husband there for moral support, I asked the “hand on the doorknob” question: “Do you only do diagnostic assessments for children, or do you also make diagnoses for adults?

He replied that the clinic does assessments for all ages and asked who I was thinking. I said, “Um…well, I was just wondering if I could be autistic.” I held my breath, waiting for him to laugh. To my surprise, his response was, “You don’t have a diagnosis yet? I had assumed. In my notes, I wrote “the mother is autistic”.

So we made an appointment for a diagnostic check-up. I was a nervous wreck in the weeks leading up to it. I wasn’t afraid of being diagnosed with autism because I had identified myself that way for a while and was comfortable with it: I was afraid of being diagnosed as not autistic. What if autism wasn’t the explanation for my differences and challenges, and I was just a flawed neurotypical?

The interview part of the diagnostic process was a little eye-opening, so much so that I was so glad to have my husband with me. I strongly recommend to anyone going through this process that you take someone with you who knows you well. If you’re like me, you’ll be stuck in your life pattern of giving the “correct” and socially desirable answer to questions.

The second part of the assessment was grueling: it was a series of tests! There I was, a person with an abject fear of failure and a strong need for control, who had gone through school with the absolute belief that anything less than 100% on an exam was tantamount to failure.

At this point, I was pretty sure he was going to say, “No, you’re not autistic. You’re an ordinary person with no social skills and a bunch of weird thoughts and behaviors. You just need to try harder. He didn’t say that.

That day changed my life. It was official confirmation that the challenges and issues I encountered were not a matter of not trying hard enough or not being good enough. I was different, not broken. The things about myself that I was ashamed of and tried to hide from the world were just normal parts of autism, not character flaws unique to me.

Growing up with autism, by Sandra Thom-Jones. Photography: MUP

I know a lot of people are hesitant to ask for a diagnosis. Parents in particular told me about their reluctance to seek a diagnosis for their child or to disclose a known diagnosis to the child. They express a reluctance to “label” their child and fear that being identified as autistic will harm the child’s self-esteem.

As a (very) late diagnosed autistic woman, I would reframe both of these concerns.

First, your undiagnosed autistic child will not be protected by the absence of a diagnosis: the labels that others will give him to explain their differences will be much worse. I know that growing up I would have been much more comfortable being called “autistic” than the terms regularly used by my peers to describe me – words like weird, freak and others that I would not like to print. Second, in my experience, it is much better for a person’s self-esteem to be a successful autistic person than a failing neurotypical person.

About Mildred B.

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