It's time to stop thinking of autism as a disorder that only affects little boys.
I would like to bring to your attention that an alarming number of autistic adult females and autistic transmen are struggling with chronic health issues, and it grows worse as we age. Perimenopause seems to play a role in this.
When will there be a study on this population? Some of us have discovered, through what little trial and error we have been able to do on our own, that we have specific nutritional requirements, different from young autistic cis males and that those requirements change dramatically as we age and our hormones change.
There are no doctors with any expertise on our unique health care needs to be found. Most doctors who treat autism or co-occuring symptoms don't take insurance or else they are behind the wall of the Long Term Care system, which is inaccessible to most females / transmen because of the diagnostic bias against us. (Typically it requires early diagnosis to get into the system. Females or those viewed as female usually are later diagnosed because they don't fit the expected autism profile.) Since the majority of autistic adults are low income, paying out of pocket for medical expenses is generally not an option. Even the cost of a bottle of multi-vitamins is out of reach for some of my friends.
My daughter, whom I have written of before, is not doing well. Writing has been a way for me to channel the stress our family has been going through. I will not disclose too much information about her, it's her struggle, it's her right not to have intimate details of her life spilled out online. But she is an activist like me, she has a desire to help others and she is OK with me talking about this.
She has been hospitalized twice in the last month. The first time, she told them that she was on a gluten-free diet, but they didn't take her seriously. It set off a major reaction in her immune system and caused a cascade of reactions. It has been severe enough, that we fear that this might be the thing that pushes her into lupus. She isn't recovering like she should be.
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I go to a support group for Aspergers adults once a month. The men generally talk about the lack of jobs and difficulty of dating or the difficultly of communicating with their significant other. The women generally talk about their health struggles. Also a lot of the mothers of autistic children have health issues, too. There are a lot of older transguys with autism that are sick, too. How is it that Autism researchers overlook this? What is really glaring is when there is an autistic mother with an autistic child...nearly all of those moms have health issues. There is definitely something that goes along with Autism that is causing physical illness and it's related to hormones.
It's like a bomb goes off in Aspie AFAB (assigned female at birth) bodies when they are in their 30's, regardless of how healthy they are. Mine was very dramatic - I had a two month migraine event that left me as ill as if I'd suffered a left-brain stroke. I used to feel very alone in my health issues, until I met autistic adult females. Now I'm just part of the crowd. We do our best to support each other, but there's no resources.
Where are our doctors? There are developmental pediatricians for autistic children, but what happens when those children grow up? Where are the studies to help us figure out what our nutritional needs are? I don't believe for one minute that the vitamins that are so great for a young growing boy on the Spectrum are going to be the best choice for me, as a menopausal transmale with a myriad of chronic issues.
I know some of you will say, "Go see a naturopath". But how is that a realistic option for all those adults who live on less than $1000/month? That's a slap in the face to them. For instance, I got a friend who primarily lives on lentils, because that is the only thing in the food box that she gets that is safe for her to eat. We need to build practical systems, not just ones that cater to those with money. Nearly all of autism revolves around privileged, white people with money. Can't we just rise up and say, "Stop it!"
There are organizations out there raising millions for autism. How 'bout making sure autistic people can have enough to eat, healthy food, vitamins, transportation to a doctor, shoes to wear, affordable housing that is free from vermin and mold? These are the issues that my friends are dealing with.
I don't know how to make people in power listen, how to make them care. In Arizona, the only disabled people who have acknowledged rights, who are permitted a voice, are the ones within the Long Term system. Anyone outside of that, you get a SSI check, you get acute medical care, maybe Section 8 if you can hang on through the 5 year wait, but that's it.
I worry about my daughter. I worry about me. I worry about our future. I've got to find a way to keep this wrecked body of mine going. I'm tired of knowing more than the doctors in this area and not being able to count on them. Mainly, I'm just tired and frustrated....