The realization that I was autistic came slowly and in bits and pieces. When I look back, the first hints were in my teenage years, and many other hints spread throughout my adulthood.
When I was studying for my arts degree, I took some psychology classes. I enjoyed learning more about this “disorder”, but sometimes I struggled to understand why some of the characteristic (diagnostic) behaviors seemed like very normal thoughts, feelings, and actions. At the time I was seriously considering pursuing a degree in psychology, but the college career counselor advised me that there weren’t many jobs for psychologists and that I might not 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 expressed 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 read about. He was bright, articulate, funny and loving. I thought he was perfect just 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 more significant challenges and was diagnosed with autism at age two. Over the next few years I read everything I could find about autism, most of which was, not surprisingly, given the prevailing wisdom at the time, about male children who experienced many of the same challenges and demonstrated many of the same characteristics as mine. son To me “success” was him being happy, being able to communicate his needs and not hurting 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 creative writing, and we makes you feel proud every day.
As the boys went through school, I occasionally wondered if my oldest son was on the spectrum too, but then I thought about how much he was like me and attributed his challenges to being shy and smart . When she began struggling with social and relationship issues in high school and sought support, she was diagnosed with Asperger’s syndrome (as defined in the DSM-4).
Over the next few years, he and I learned more about Asperger’s. We nodded conspiratorially and shared many “a-ha” moments and laughs as we saw a lot of him in the things we read. Even though most of it was still about men, I was surprised by how much it resonated with me. Again, I will not tell you his story as it is not mine to tell, other than to say that he has grown into an equally wonderful young man. He has already surpassed my academic achievements and has a successful career as a university researcher, but he also finds time to support and mentor others and is a true gentleman.
I didn’t seek a formal diagnosis because I couldn’t see how Sandra Thom-Jones would be beneficial
As my children grew up, I continued to learn about autism, but it was a long time before I really processed the fact that women can be autistic. It took even longer before I began to accept that perhaps the many similarities between my thoughts, behaviors, and my children’s challenges are due to a shared neurotype and not just shared genes.
After pondering this possibility for a year, my first tentative step was with my oldest son. I casually asked him, “Do you think it’s possible that I’m autistic?” He was ready for her to laugh or express surprise at such a crazy thought, but instead he said, “Yes, I’m sure you are. Where do you think we got it?”
With some trepidation, I asked my husband the same question. His answer was not what I expected. “I’ve known since I met you.”
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For a while, I sat with my self-diagnosis. I didn’t seek a formal diagnosis because I didn’t see how it would be beneficial; I was too old for any kind of intervention or support. I was also concerned that it would affect my career, given the stigma and stereotypes surrounding autism that I had experienced so many times in my children’s lives.
Both of my sons were clients of the same psychology practice, the ASD Clinic, who had been recommended to me as autism experts 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 practice manager, with whom we had spent many hours.
First, your undiagnosed autistic child will not be protected by the absence of a diagnosis
I figured he’d probably done such a good job masking himself in front of her that he’d 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 diagnose adults ?”
He replied that the clinic does assessments for all ages and asked who I was thinking of. I said, “Um… well, I was just wondering if maybe 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 anymore? had assumed In my notes I wrote “mother is autistic”.
So we made an appointment for a diagnostic assessment. I was nervous in the weeks leading up to it. I wasn’t worried about being diagnosed as autistic, as I had long identified myself that way and was comfortable with it – I was worried about being diagnosed as non-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 revealing, so much so that I really enjoyed having my husband with me. I strongly recommend anyone going through this process to bring someone who knows you well. If you’re like me, you’ll be stuck in your lifelong 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! Here I was, a person with an abject fear of failure and a strong need for control, who had gone through school with the absolute conviction that anything less than 100% on an exam equaled failure.
At this stage I was pretty sure I was going to say, “No, you’re not autistic. You are a normal person with no social skills and a lot of strange thoughts and behaviors. You just have to try harder.” He didn’t say that.
That day was life changing for me. Here was official confirmation that the challenges and problems I experienced were not a matter of not trying hard enough or not being good enough. I was different, not broken. The things about me that I was ashamed of and tried to hide from the world were just normal parts of being autistic, not character flaws unique to me.
Growing into Autism, by Sandra Thom-Jones. Photography: MUP
I know many people are hesitant to seek a diagnosis. In particular, parents have told me about their reluctance to seek a diagnosis for their child or to disclose a known diagnosis. They express their reluctance to “label” their child and worry that being identified as autistic will harm the child’s self-esteem.
As a (very) late-diagnosed autistic woman, I would raise both of these concerns.
First, your undiagnosed autistic child will not be protected by the absence of a diagnosis: the labels others will give them to explain their differences will be much worse. I know that growing up I would have felt much more comfortable as “autistic” than the terms my peers commonly use to describe me: words like freak, freak, and others I wouldn’t want to post. Second, in my experience, it is much better for a person’s self-esteem to be a successful autistic person than a failed neurotypical person.