- When some adults receive an autism diagnosis, it helps them understand their childhood.
- Late diagnoses are more common in women.
- Late-diagnosed adults should seek help for the childhood trauma they may have suffered.
When I was 42, I sought an autism diagnosis.
Like many adults who seek diagnoses, I was inspired to do so because I am a parent and my children were diagnosed with autism.
After my children were diagnosed, I looked at them, and then I looked in the mirror and realized that I had given birth to miniature versions of myself. I immediately made an appointment with our local autism center for testing.
If you had asked me at the time why I was making plans for autism testing, I wouldn’t have been able to give a truthful answer. I didn’t truly understand the reasons myself. Instead, I made up an excuse to tell people: “A correct diagnosis will help my bipolar disorder treatment." Although true, it was not my driving motive.
Instead, deep inside, I wanted to make sense of something. But I could not put my finger on exactly what.
After I was diagnosed, however, I realized that there was a hole inside of me that I didn’t know existed until the diagnosis came along and filled it.
In other words, my autism diagnosis made my entire life, starting with my childhood and all the way through today, make sense. It validated my childhood struggles, for example, and made me feel more at peace with myself.
I learned that I’m not a social failure who kept—and keeps—trying and failing to be “normal.” (Note: There is no “normal,” but that’s for another post.)
No, I’m autistic and perfect just the way I am.
My story is a common one for late-diagnosed adults with all sorts of neurodivergence, not only autism. Adult-diagnosed ADHDers, for example, frequently experience struggles in college or work caused by their unsupported neurodivergence.
What it’s like for an undiagnosed child
Like many late-diagnosed adults, once I received my diagnosis, my past snapped into focus. When I looked back at my childhood, it became clear that I was so very, very autistic.
For example, I lined up my books, pencils, and Legos in specific ways, and when others disturbed my neat little piles, I would get upset—sometimes very upset. I had intense “special interests" in a few specific things, another typical autism trait. Some of these interests have not abated as I’ve gotten older. (I was a “horse girl.” I am still a horse girl.)
I was frequently bullied, as autistic kids often are. Research shows that adolescents with ASD are victims of bullying at a rate of 46 percent or more—compared to 22 percent in the general adolescent population.
I also suffered a lot as a child and young adult because I was deeply misunderstood: by my parents, teachers, and peers at school.
My parents didn’t have the advantage that I have as an autistic parent of autistic kids. My apples fell close to my tree; theirs did not. Instead, my parents were handed what must have seemed, to them, like a mysterious little creature who frequently baffled them. Like many neurotypical parents of autistic children, they did what they thought was best.
For example, they didn’t understand my desire to be alone a lot and tried to force me into uncomfortable social settings. They didn’t understand my intense special interests and tried to make me do things that didn’t interest me. They didn’t understand the source of my social awkwardness and criticized my lack of “social skills.”
But I believe they did the best they could. My parents didn’t just wing it—they sought help from doctors. Unfortunately, the doctors weren’t much help. Back then, in the early 1980s, getting a girl diagnosed with autism was about as easy as walking to the moon. And it remains difficult today.
Because of our lack of diagnoses, autistic girls and women become adept at "masking"—hiding our autistic traits—and do so more frequently than men. Masking causes even more harm to our mental health.
If you are also a late-diagnosed autistic adult, let’s figure out how you can square your sometimes painful past with your new diagnosis.
I have two pieces of advice:
1. Look back at your young selves and celebrate them.
Let us celebrate our childhood differences rather than scorn them.
For example, our young, autistic selves likely had intense interests in things. Let us celebrate these “hyper-fixations” (as autistic author Pete Wharmby calls them). They were wonderful, not a problem, even if adults around us told us that they were. And today, if you still love those things, bring them back into your life if you can.
Celebrating our childhood differences can be hard to do because sometimes these differences caused us pain. We might remember that our awkwardness caused teasing and difficulty making friends.
The world made us feel as though we were made wrong. But we weren't.
That awkward child you once were deserves your love today. She didn’t make mistake after mistake for no reason. She had undiagnosed autism, and she likely had little help learning how to navigate complex social situations.
Furthermore, sometimes what seemed like mistakes in the past weren’t mistakes at all. Sometimes we were punished simply for being different.
Find a memory of yourself as a child during a moment of intense joy. Now, go join yourself in that celebration. You both deserve it.
2. Seek help for the harm you suffered as a child and adult.
Autistic kids, whether diagnosed or undiagnosed, frequently suffer traumatic events such as bullying and assault and their aftermath such as PTSD. If we were undiagnosed as kids, then it is even more likely that we suffered trauma—all the way through adulthood.
Today we might try to forget these traumatic events. We might try to reason that they weren’t that bad. That’s what I did for years. But carrying around the burden of these traumatic events harms us.
Now, in my mid-40s, I’ve started working through this trauma with a therapist. It has been life-changing.
Because of my autism diagnosis, I’ve learned that what I suffered wasn’t my fault. I was targeted because I was autistic. And, when I should have been taught how to protect myself, I was not.
But we can protect ourselves now, starting by addressing the lingering pain inside ourselves that stands in the way of mental peace and happiness.
To find a therapist, please visit the Psychology Today Therapy Directory.
Note: The information in this post is not legal or medical advice.
Kerri P. Nowell et al., “Characterization of Special Interests in Autism Spectrum Disorder: A Brief Review and Pilot Study Using the Special Interests Survey,” Journal of Autism and Developmental Disorders 51, no. 8 (August 2021): 2711–24, https://doi.org/10.1007/s10803-020-04743-6.
Paul R. Sterzing et al., “Bullying Involvement and Autism Spectrum Disorders: Prevalence and Correlates of Bullying Involvement Among Adolescents With an Autism Spectrum Disorder,” Archives of Pediatrics & Adolescent Medicine166, no. 11 (November 1, 2012): 1058, https://doi.org/10.1001/archpediatrics.2012.790.