Very late diagnosis story with some advice

Post Reply New Topic

The realisation that I was autistic came slowly and in pieces. When I look back, the earliest inklings were in my adolescent years, and many other clues were spread through my adulthood.

When I was studying for my Bachelor of Arts degree, I took some psychology classes. I enjoyed learning more about this “disorder” but sometimes struggled to understand why some of the characteristic (diagnostic) behaviours seemed to me to be very normal thoughts, feelings and actions. I was at the time seriously considering continuing with a psychology major, but I was counselled by the university careers adviser that there weren’t many jobs for psychologists and that perhaps I didn’t have the “people skills” for that career.

Australia’s parliament has to change – because autistic people like me can’t
Read more
Then I became a mum. My first son had some difficulties in day care and preschool, with the teachers expressing the view that he had attention deficit hyperactivity disorder (ADHD). One medical professional suggested autism as a possibility, but I was not convinced. He was not like the autistic children I had read about. 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 recognised.

My second son had more significant challenges and at two years old was diagnosed as autistic. Over the next few years I read everything I could find about autism, the bulk 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 my son. For me “success” was for him to be happy, to be able to communicate his needs, and to not harm himself or his brother.

As the boys moved through school, from time to time I wondered whether my older son actually was also on the spectrum, but then I would think of how much he was like me and attribute his challenges to being shy and intelligent. When he began to struggle with social issues and relationships at high school and sought support, he was diagnosed with Asperger syndrome (under the DSM-4 definition).

Over the next few years he and I learned more about Asperger’s. We nodded conspiratorially and shared many “a-ha” moments and giggles as we saw so much of him in the things we read.

After pondering this possibility for about a year, my first tentative step was with my older son. I casually asked him: “Do you think it is possible that I am autistic?” I was ready for him to laugh or express surprise at such a crazy thought, but instead he said: “Yes, I am 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’ve known that since I met you.

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

Both of my sons were clients of the same psychology practice, the ASD Clinic, which had been recommended to me as the experts in autism when we moved to Melbourne in 2014. After much encouragement from my family, I decided to broach the subject of my own autism with my younger son’s psychologist – the practice principal, with whom we had spent a great many hours.

I thought I had likely done such a good job of masking in front of him that he would reject the suggestion as ludicrous. 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 diagnose adults as well?”

He replied that the clinic did assessments for all ages and asked who I was thinking of. I said, “Um … well I was just wondering if maybe I might be autistic.” I held my breath, waiting for him to laugh. To my surprise, his reply was: “You don’t have a diagnosis already? I had assumed. In my notes I have written ‘mother is autistic’.”

So we made an appointment for a diagnostic assessment. I was a nervous wreck in the weeks leading up to it. I wasn’t worried that I would be diagnosed autistic as I had self-identified that way for some time and was comfortable with it: I was worried that I would be diagnosed 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 bit of an eye-opener, so much so that I was really pleased 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 are anything like me, you will be stuck in your lifelong pattern of giving the “correct”, socially desirable answer to questions.

The second part of the assessment was gruelling: it was a series of tests!

By this stage I was fairly convinced he was going to say: “No, you are not autistic. You are a regular person with no social skills and a bunch of bizarre thoughts and behaviours. You just need to try harder.” He didn’t say that.

That day was a life-changer for me. Here was official confirmation that the challenges and problems I experienced weren’t 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.

I know a lot of people are hesitant about seeking a diagnosis. Parents particularly have spoken to 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 worry that being identified as autistic will damage the child’s self-esteem.

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

First, your undiagnosed autistic child will not be protected by the absence of a diagnosis: the labels other people will give them to explain their differences will be far worse. I know that growing up I would have been much more comfortable being referred to as “autistic” than the terms regularly used by my peers to describe me -words like weirdo, freak, and others I wouldn’t want to put into print. Second, in my experience, it is a lot better for a person’s self-esteem to be a successful autistic person than a failed neurotypical person.