Missing Road Maps?

A person (or orangutan) does not need to look too far to find examples of autistic girls and women. Some like Greta Thunberg are well known, appearing in the news. The autobiographies of others, like Chloe Hayden and Jennifer Cook O'Toole, are easily found in bookstores. One of my favourite fictional depictions is Sara in the Young Royals Netflix series. Sara is played by Frida Argento who is herself autistic. More appear in anecdotes in books. Others are hiding in plain sight, amongst our neighbours and colleagues, especially in roles and places that tend to attract or provide a safe haven for the neuroatypical.

Despite their many differences, these girls and women feel instantly recognizable. Many have concurrent mental health diagnoses. Eating disorders are horrifyingly common. Their strengths and struggles are familiar.

Oranguette has often been described as "complex". That seems to be a common label for articulate, intelligent autistic females. Mr. Orangutan and I have been warned repeatedly that, because of Oranguette's complexity, there will be no one approach, no single program or institution, that will provide a sure way forward.

To an extent, this is true, and is useful advice. In our particular orangutan forest, supports are accessed through a confusing tangle of private and public services, including agencies, individual professionals, schools (public, private, and in-between), health institutions, and so on. All of which are oversubscribed and under-resourced, and shockingly uncoordinated. I expect that this description would apply to any place where one is fortunate enough to find any sort of resources at all. It is a bewildering system to navigate for anyone.

But what is there about Oranguette's particular presentation that would make her uniquely complex? Clearly she is not particularly unique! Yet we have frequently found ourselves referred to place A for one aspect of treatment, only to speak to place A to find out they don't deal with patients with another aspect of her presentation. Place B will do the exact opposite. A similar scenario emerges with schooling. Picture, if you will, this worn-out orangutan chasing wild geese in circles that rarely lead anywhere.

Why are road maps so lacking for these type of autistic girls and women? In my experience, misogyny and ableism are still deeply entrenched in pockets of the public health system in particular. I say this while fully acknowledging that males face their own set of damaging stereotypes, and that many other groups face much deeper systemic barriers. Again, I am just writing from my own vantage point. When misogyny and ableism overlap, neuroatypical females struggling with mental health are often either not taken seriously, or simply written off as lost causes. All too frequently the result seems to be dismissiveness rather than curiosity, support, or research.

Age further complicates things. Autistic females are typically diagnosed later than males. They often miss the entry points into they system that happen at earlier ages. Trying to get into a specialized school (if a suitable one can even be found) in the middle school years seems to be a particular challenge, for example. Spots are already full with returning students, making options even fewer.

Age can be tricky in another way. The tween years seem to me to be a common age at which autistic females first present seeking help for mental health struggles. Oranguette often found herself at the dividing line between child and teen programs, or falling through the gap between the two. Our worst experiences have been in settings dealing with children, which is a worrisome observation to make.

Yet there are bright spots in the midst of this disarray. The right psychologist, teacher, doctor, or other professional, at the right time and in the right place. A fellow parent or online group with a new idea or lead to follow; one like-minded professional referring on to another. Signposts slowly emerging from the fog.

The beginnings of a road map.