It’s taken me a few months to gather my thoughts sufficiently to be able to write about this.
In September 2013 I was at the mental health clinic with my mother, getting interviewed on my childhood behaviours. This part of the adult autism diagnosis refers specifically to the section in the DSM-5 that says:
“Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).”
I felt incredibly nervous about this part of the diagnosis.
Mostly because I knew I didn’t exhibit many symptoms in childhood. Sure, I always had hobbies that I was intensely occupied with, and that weren’t very typical of other children my age, but overall I just seemed a shy, studious, slightly naive but happy young girl. My parents were very supportive of me and my interests and never made me socialise with others if I didn’t feel like it. It was perfectly acceptable in our family to spend most of Christmas Day reading the books we had received as presents.
My mother was nervous about the interview too. I noticed she was clutching her hands so hard that her knuckles were turning white. Up until that point, the therapist had addressed most of her questions to my mother, so I’d kept quiet and let my mother do the talking. But she wasn’t doing much talking. So when I saw her hands, I took control.
Maybe the questionnaire had set us both up for feeling a bit unsettled about this part of the diagnosis. It was obviously meant for the diagnosis of children, with some half-hearted attempts to make it suitable for adults. And by half-hearted, I mean questions like:
As a child [section heading says 0-5 years old], did he look at people (meet their eyes) when they were talking to him?
- Never or rarely
- Only with parents
- Usually did
And at a later age? [emphasis mine]
Some of the questions did indicate that they were meant to cover specific ages, like 0 to 4 years old, 1 to 5 years old, or 4 “and older”, but none of the questions specified HOW MUCH older. Not even adolescence was mentioned specifically.
I had planned to go through the questionnaire together with my mother, to explain things and to give feedback on her recollections. But about halfway through reading through the questions, my mother gave up. She said they were such leading questions that they were making her feel anxious and she couldn’t remember all those things about my childhood anyway. We did spend some time reminiscing about my childhood and even getting out my baby book, so that was fun. But filling out the actual questionnaire wasn’t going to happen with me there.
She brought the filled out questionnaire with her to the interview, so I had about 2 minutes to scan through her answers before the therapist came in. She’d basically answered “my child was normal” to every single question.
As a child, did he feel very afraid or anxious?
- Yes, about strangers or specific people
- Yes, about animals, noises, or (mechanical) objects
- No, showed no fear or sense of danger
Yep, they used the word normal.
Of course, it’s been a while since the interview, so my recollection is a bit hazy. There were a lot of questions about how I interacted with others. Like, did I have any friends (yes, I did). Did I get invited for birthday parties (my mum’s answer was, “We didn’t do birthday parties”, ha!). Did I come across as bossy or controlling when playing with other kids (my mum ran into my nursery teacher a few days before the interview, and even she remembered how much I enjoyed “playing teacher”. I was in nursery school in 1981). Things like that.
Me taking control of the interview meant that I started answering the questions with how I remembered things. Like playing with other kids but not knowing when it was OK to join in. Constantly feeling puzzled by the behaviour of other kids. A very vivid memory about not understanding when someone’s joking or serious. (Still makes me cringe to remember that: I’d given a presentation in class about windmills, and a classmate asked me how windmills actually worked. I thought he was joking, so I gave an extremely scathing reply. And got reprimanded by the teacher for making the kid look ridiculous, because it was a serious question. Ouch).
My mother started relaxing a bit more when I was the one doing most of the talking, and started adding and elaborating on my recollections as well. It got to the point where it was mostly a conversation between me and her, with the therapist desperately trying to keep us on subject and within the time limit. That was fun.
Of course, with my mother seeing me as normal and that attitude colouring all of her replies, I wasn’t feeling all too sure about the conclusions the therapist would draw from the interview and the questionnaire. I knew my diagnosis would hinge on autistic traits being present in childhood.
To counteract the “normal”, I got in touch with the therapist the day after and explained a bit about my family. About how most of my family members exhibit the same traits as I have. How within my family, I am indeed our kind of normal. Which, I can tell you, didn’t seem all that normal to others who got introduced to our family. My youngest brother even made a point of warning friends who stayed for sleepovers that they shouldn’t pay attention to anything happening at breakfast, because, in his words, “They all like to have these discussions, you know?”
The fact that I grew up in such a family meant that I never had to explain why I’d rather read books than play football. That it was perfectly OK to hate crowds. My parents never told me that it was my own fault for getting bullied because I should try harder to behave in a certain way; they encouraged me to remain true to myself and to take pride in my differences. They never expected me to read between the lines, to understand things instinctively just because “everyone knows how to do that”. My parents provided me with the support I needed to function in an overwhelming world.
My diagnosis took this information into account. Yay!
From the official diagnostic report:
Judging by early childhood, there are very few indications of an autism spectrum disorder, although there are several examples of not understanding social interaction as a child. There are several explanations for the lack of symptoms in childhood, such as the close ties within the family and more family members possibly having undiagnosed autism spectrum disorders. For example, patient indicates that it is very normal in her family to talk in a formal, old-fashioned way (they often talked about scientific subjects and regularly consulted the encyclopedia during discussions).
Even though in the Netherlands the DSM-5 has not yet been adopted, the idea that “symptoms may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life” has obviously been accepted. This will hopefully help others get diagnosed. Others who, like me, don’t seem all that autistic until you realise how many supports they have in place.
- The Autism Research Institute’s Form E-2 Check List (Rimland) on which my adult questionnaire was based (warning: pathology-based and gender insensitive)
- The “Rimland” for autistic adults (in Dutch)