Diagnosis: Importance of Childhood?

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I’ve been learning about AS and related conditions for several months now and I think I have AS. I feel so at home when I read books like Rudy Simone’s Aspergirls or Liane Holliday Willey’s Pretending to Be Normal. The more I learn about AS, the more I keep finding little things that I thought were just quirks of my personality that can be attributed to AS. I stim, and not just things like foot tapping or nail biting, but bigger, noticeable things like hand flapping. Asperger’s explains so much about my everyday life that simply considering that I might have AS has changed my life for the better. It’s like having a light turned on and being able to see the obstacles in my path instead of just blindly stumbling over them.

But, all that said, I can’t really trace my struggles back to early childhood. I may have been hyperlexic, or I may have just been gifted. I may have had figurative language problems, or I could have just been a kid saying and doing “the darnedest things!” I may have had sensory issues, or being blue-eyed and nearsighted may just make me more sensitive to light. I didn’t have any major behavioral problems, and when I asked my mom, she described me as an “extremely polite and well-behaved child” which I assume is in comparison to my ADD sister and my ADHD brother who both had significant behavioral problems in preschool and early elementary. I have memories that suggest AS from as early as 3rd grade (repetitive behaviors, obsessive interests, difficulties with change), but most of my major social difficulties started in middle school. I don’t know if the reality is that I didn’t start exhibiting AS-like symptoms until middle school, if my intelligence shielded my social deficits until middle school, or if I simply don’t have an accurate picture of what I was like outside of my own memory.

I know that having AS symptoms that seem to have begun when I was a teenager as opposed to a child naturally points to a personality disorder as opposed to true AS, but every differential diagnosis for AS doesn’t seem to fit. I’m not quite rigid enough for OCD and none of the descriptions of it seem to fit but small aspects of my behavior. Anankastic/OCPD is out for the same reasons as OCD. I don’t have social anxiety disorder because I can easily do things like speak in front of audiences and talk to strangers, it’s more that I have trouble in starting and keeping conversations going. I can’t have ADD or ADHD because I have a sister and brother with each respectively and I see the problems it causes them that I don’t have. Pretty sure I’m not schizophrenic or I’d have hallucinations. Schizoid’s out because I like being a part of my family and praise makes me happy. I don’t have Antisocial PD because I can’t stand cruelty to anyone from anyone.

Avoidant PD is admittedly a possibility, but I find a lot of the things people say in the “personal stories” about AvPD to be strikingly similar to the personal stories from AS people, minus the specific AS issues. But it simply doesn’t feel like a complete picture the way AS does. It doesn’t explain a lot of the things I found in Simone or Willey’s books, like why I can’t focus on one conversation when there’s another going on beside me, why I can’t multitask, why I panic when I leave home without my trusty bag of stuff, why I stim, my struggle with gender roles, why I can’t understand subtext in conversations, why people wear me out, why I still get lost in my hometown, why I still can’t identify irony or understand poetry despite English being my strongest subject, and a million other things.

So I guess what I’m getting to here is how significant are strong childhood symptoms to a diagnosis? I want to move forward, but I don’t want to move forward with doubts only to have them realized.

Symptoms as they appeared in childhood are significant to a diagnosis, according to the professionals who are going to assess me this autumn. For this information they required a 45 page form to be filled out by my parents, especially my mother. I've already submitted it along with my application. I took the liberty to interview my parents, relieving them from the tediousness of writing. My father found it helpful that we talked about my childhood, school problems, behaviour, customs etc or simply old memories that have been basically forgotten by now.

Some symptoms might become easily masked by the time we are adults due to learning coping techniques and repressing characteristic behavioral patterns that are considered inappropriate by the majority.

Well considering that AS is a DEVELOPMENTAL disorder I would say that strong childhood symptoms are probably a major factor in the diagnosis. Usually ASDs are much worse in childhood and improve with age (either due to compensatory strategies or therapy) so if you are saying your SYMPTOMS are worse now, perhaps you have a co-occuring disorder or you simply don't have AS. On the other hand if your FUNCTIONING is worse now but your symptoms are the same or improved (functioning often gets worse in adulthood due to added responsibilities and more complexities of everyday life) I would say it's possible you have AS. Really the only way you can find out for sure is if you get a full neuropsych evaluation from a competent professional. Sometimes it is wise to get second and third opinions, too.

There are however times that the symptoms themselves actually do get worse. Personally, my symptoms are worse than they were when I was a child. When I was a child I lived in the suburbs, at the moment, I live in the city. The longer I've lived in the city the worse both my functioning and my symptoms have gotten. My senses have even gotten more sensitive to the things that bother me since I've been living here. However, in this case its a question of environment as well as stresses of growing up.



However, there is no question in my mind that the information from childhood is incredibly important to making a diagnosis. For my diagnosis, there was a meeting with both me and my parents that went over all of the background information, and then I went and did the evaluation. He asked if I minded there being another meeting with my parents, but that didn't end up occuring because between the background session and the fact that I specified on some of the questions the differences between me currently and as a child he felt he had enough information about my childhood.


ASDs are developmental, if the symptoms aren't there in childhood it won't be an ASD. On the other hand, the symptoms don't necessarily need to be causing a problem for them to be there. For me, while there is no question in either my mind or my parents' minds that the symptoms were their when I was young, they didn't start really causing problems until 4th grade because that's when being different started being a problem in people's eyes.

I'd suggest going through a list of symptoms with your parents, asking them about those in particular between what they remember and what you remember.