When you’re studying people with ASDs from an insider’s perspective, two things become obvious demographically, very quickly.
Add the western medical bias of assuming that symptoms which cannot be suppressed with drugs must be psychosomatic, and you have a population of adult female autistics who are being misdiagnosed, inappropriately medicated, and unsupported.
And finally, add this to a lingeringly lower-status gender more likely to mask true feelings, or turn them inwards in self-blame or self-abuse as a survival strategy, and you have a population of adult female autistics who are wearing masks, pretending they fit for all they’re worth.
So how are we autistic women being misdiagnosed, or missed altogether?
Depression or Bipolar:
Autistic women are more likely to be depressed for various reasons. First, social interactions are more challenging, and friendships more difficult when there are indirect, facial, or body language signals going under our radar, and over our heads. All humans get depressed without some positive contact with other beings (though those beings don’t have to be human, as pet, zoo, gardening, and other studies have confirmed).
Second, the biochemistry in autistic bodies is off, and hormonal swings can be much worse than in the general population. Part of this is because of malnourishment, with it being so difficult to supply for the extra nutrient demand of being so behind on maintenance and repair that detours have to be used to get anything done. And part of this is because of a more toxin-loaded body (impaired detoxification) demanding so much more in the way of materials because of toxin damage.
Third, a very high number of autistic women are unemployed. Outside of fields such as music or sports, where an unusual level of focus, or narrowness of interest is expected and accepted, work can be difficult to acquire, and difficult to keep. As can friends. Lack of either money or friends can be a cause for depression in a culture which assumes that if you’re smart or popular, you’re successful (and that if you’re unsuccessful, you can’t be smart or worth knowing).
And fourth, autistic challenges partially stem from uneven development of the brain and nerves, which then don’t signal appropriately to help keep the body in homeostasis (healthy balance). For autistics, this often means a very high stress response, and inflammation everywhere, including in the brain.
So depression as experienced by autistic women is usually a result of physiological and social factors outside of our immediate control. When these social and physiological factors begin to be surfaced and addressed, the depression usually begins to lift.
Anorexic or Bulemic:
People who feel out of control of some parts of their lives will often over-control one or more other aspects of their lives in which they have at least some power. For women, because there is so much negative feedback for being overweight, this often shows up as eating disorders.
Autistics feel much more “out of control” because we’re often missing so much information that other people seem to pick up out of the air, and will seldom explain to us. This makes every social, work, volunteer, or other communication fraught with invisible hazards for autistic women, because women in general tend to be less direct in their conversation than men. Eating disorders are but one form of compulsive behaviour, which is covered more below.
Obsessive-Compulsive Disorder or Addiction:
When people believe that it’s impossible for them to have what they most deeply want, they try to numb that pain by pursuing something else that gives short-term pleasure or relief, such as food, hand-washing, shopping, reading, overwork, intense sports, or recreational drugs.
Because autistics find so many more things impossible and are inadequately supported by either western medicine or social ties, compulsions and addictions are much more prevalent. However, these behaviours also respond well to hyper-nourishment, trauma release work, and other appropriate health and social support.
Fibromyalgia or Chronic Fatigue:
The hypothalamus is one of the seven major glands in the body, which use chemical signals to keep the body in balance (breathing at the right pace, heart beat appropriate for the level of stress, etc.). Arteriovenous shunts (AV shunts) are
Reductions in blood flow are the most critical in our capillaries, the tiniest blood vessels serving the hands, feet, and other tissues including skin, between the big arteries and veins. When the AV shunts are working sporadically, waste builds up inside cells, and desperately-needed food isn’t delivered. One of the wastes that builds up is lactic acid, well known to cause aches, pain, and fatigue.
The sympathetic nervous system (which enables rest, repair, digestion, etc.) can have its communication disrupted by these malfunctioning AV shunts, causing nerve hypersensitivity to aches and pains as the waste build-up travels from one body part to another.
Higher sensitivity to pain from an early age, and the resultant dissociation from our bodies (which we often refer to in third person, as “the body”) is one of the hallmarks of ASD.
Multiple Chemical Sensitivities:
Increasing numbers of adults (who can speak about it, and remember a time when it wasn’t normal in their life) are experiencing toxicant-induced loss of tolerance, or TILT. What does TILT actually mean?
The previous name for TILT was Environmental Illness, referring to people who, after a single damaging toxic exposure, found they were suffering at every exposure to similar chemicals, however small. This “suffering” commonly includes headaches, flu-like symptoms, insomnia, an inability to concentrate, and fatigue, but each type of toxic exposure has its own additional negative impacts.
People in buildings being sprayed with pesticides, people exposed to the toxic air near ground zero on September 11th in New York city, people given too many immunizations at once for the Gulf war, and many others, are now crippled by TILT.
Now imagine having grown up with TILT, never having known a world where your cognitive function wouldn’t nose-dive, or your pain levels sky-rocket, on exposure to someone’s toxic scented products, dry-cleaned clothes, or lawn care toxins. Who listens to a child? Thank goodness, more and more people are willing to do just that. But those of us who grew up with TILT, possibly from toxic exposures during our mother’s pregnancy, have a tough time getting a hearing from the medical doctors who could help.
Not all women diagnosed with these health challenges are in the autistic spectrum. However, each diagnosis has symptoms which significantly overlap with some portion of the full spectrum of autistic symptoms. Since no autistic has the same selection of symptoms as any other, sometimes the very idea of diagnosis doesn’t make sense.
Unfortunately, until we’ve a much clearer picture of the many ways that physical, mental, and emotional health can be altered by our external environments and the foods we eat, imperfect diagnosis may be the best we can do.
Brain Differences Between Genders:
While this isn’t talked about much in the medical literature as yet, and the researchers looking at autism from a gender perspective have been side-tracked in the incorrect “brain masculinization” theories, stress affects brain functioning in a way that exhibits differently between males and females (as well increasing estrogen in men, and testosterone in women). And most autistics have much higher physical, mental, and emotional stress than is usual in the general population.
Male brains tend to have less connection between the right and left hemispheres which allow higher thinking. Most of the time, this doesn’t matter, because the connection is more than sufficient to link the wide abilities in different areas of the brain to accomplish many tasks. However, under increasing degrees of stress, the linkages between the brain halves work less and less well.
The first place this impaired right-and-left brain communication shows up is in social interactions, which become unemotional, clipped, atonal, and either distracted or forceful. Think of military re-enactments, or war experiences if you’re unfortunate enough to have had them: how do people speak?
In the heightened stress which most autistics experience, males suffer more in communication and social ability because female brains are built with more linkages between the right and left hemispheres. The stress, health challenges and patterns of problems are the same, but masked more in women who are better able to learn some portion of social skill, or fake them better.
Thanks, Jackie. Very informative as usual. Thanks for all of your research and sharing! Anita
Wish I could have been there. It looks like I missed an excellent meeting. Is there any follow-on gathering planned or anticipated?