But is it Really Autism?

Many autistic girls and women present atypically. We may be highly verbal when we speak, we may not stim noticeably, and we may have learned to mask and fake it, to pass. Of course this is not specific to females, but it is characteristic of the female experience, and I am writing from a female vantagepoint after all, so I will leave it at that.

For me, Oranguette's autism diagnosis together with an understanding of how so-called non-stereotypical autism can present in females was a light bulb moment. However, now and then, I do find myself wondering if it is truly autism either for her or me. I think many people including Oranguette would be shocked by that admission. I have, at points, advocated very hard for her neurodiversity to be considered. The question still nags.

I think a lifetime of masking and internalizing can leave us feeling that maybe we are just overreacting, there's nothing wrong or special about us, why are we making such a fuss? And stereotypes lodge deeply; do she or I really match those stereotypes? Maybe the professional that initially questioned Oranguette's diagnosis was onto something (although I will note that same individual had a change of mind very quickly).

All this questioning does lead back to the multivariate pie chart model of autism. Autism is an incredibly broad diagnosis, with individuals presenting very differently. Imagine tweaking one or two of the variables shown on the pie chart for one person, then tweaking some different variables in another way for a second person. Of course those two people are going to seem very different by many measures.

However, I believe there are more compelling reasons than that to accept and run with a diagnosis of Autism Spectrum Disorder.

Family

The same skeptical professional I alluded to above held many strong opinions. I will simply note that I don't think I have ever disagreed with someone so repeatedly and wholeheartedly in my life. This person also stated resoundingly that family history was irrelevant. Guess what? I disagree with that too.

Although there is much left to be discovered, autism is known to be highly hereditary, and also has known associations with some physical conditions, both minor and major. Two such physical conditions are in fact present in my immediate family.

I am being deliberately light on details here. What I can say is that, even if an autism diagnosis seems borderline or questionable for either Oranguette or myself, autism makes an awful lot of sense as a family predisposition, if you will.

This was the light bulb moment I mentioned above. The simple statement from someone familiar with Oranguette that yes, it was worth doing a full autism assessment combined with a lot of obsessive late night googling on my part made years of... everything... make sense.

Explanatory Power

As a mental exercise, I have tried removing Oranguette's autism diagnosis in my mind and seeing what happens. For different reasons, I know she has done similar. For me, what that leaves is a mess of disparate mental health diagnoses which I'll just describe as involving all manner of internalizing behaviours.

I am not disputing those mental health diagnoses, which she does show traits of, although the exact constellation tends to change a bit over time. Well, I don't dispute them entirely, but they don't seem very... robust. And they don't, by themselves, make any sense at all. Why would they arise seemingly out of the blue? Why don't the usual approaches work? Why are these presentations so intense in the absence of obvious environmental factors?

If I mentally add Oranguette's autism diagnosis back in, then suddenly there is an explanation for the mental health diagnoses. Anxiety stemming from a world not designed for neurodiverse people; depression arising from disconnection due to differences in processing social cues. If that line of reasoning is followed a bit further, it ends up with an even better and far more comprehensive explanation: Autistic Burnout

I put that in a large and somewhat obnoxious font for a reason. It is one of the most important ideas I've been introduced to on this journey.

Treatment Directions

The final factor in my mind is the power of an autism diagnosis to set appropriate treatment directions and provide proper supports. Although there may be some overlap, autistic burnout is managed in a very different way than depression, say.

Final Thoughts

The idea that girls and women collectively are under- and not over-diagnosed with autism seems relatively well-accepted now. I've read many stories of women either incorrectly labeled with mental health diagnoses that never quite fit, bipolar perhaps, or borderline personality disorder, only to be diagnosed later in life with autism. Even more concerningly, this narrative was suggested for my own family even after Oranguette's autism diagnosis.

That alone should give us pause, and suggest that an ASD diagnosis should not be dismissed too quickly. Even if it is uncomfortable.