Women* with Autism: An ignored health care crisis

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Friday October 17, 2014 · 11:48 AM PDT

2014/10/17 · 11:48

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.

CinderMcDonald

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Thursday October 09, 2014 · 2:18 PM PDT

2014/10/09 · 14:18

More people paid attention to my last diary than I expected. Thank you, that was a nice surprise. I wondered what to write about next. I asked myself, “What is it that I have to say to others about people with autism?” My response was, “Accept us completely”. When my daughter was 10 years old, we had a conversation about what we would wish for if a magic genie showed up. I told her I would wish that she wasn’t bipolar or autistic because she had gone through so much pain. “But Mom”, she said, “then I wouldn’t be ME.” That answer humbled me. She taught me a powerful lesson that day.

CinderMcDonald

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Friday September 26, 2014 · 9:59 AM PDT

2014/09/26 · 09:59

It would be very easy to draw a quick conclusion that the majority of autistic people are too lazy to exercise. We are often found playing video games or noodling around on our iPads. We were the ones who didn't have to look too far for an excuse to get out of PE during our youth, we were sick most of the time growing up and when we weren't, we weren't able to keep up with peers at recess. It's hard to develop motivation for physical activity when you're always the one picked last for the team. Thus began the cycle of avoidance.

But even when we decide later on that we want to become more physically active, autistic (and other neurodiverse) people face additional barriers that are not well understood. Our processing issues get in the way. I'm almost 48 years old and it has taken me years to be able to put this into words. I blamed myself for years for being weak-willed and inadequate. Understanding how my brain works has helped me develop strategies. I want to share what I have learned in hopes that it will help others in finding ways towards getting their personal exercise goals met. Exercise helps autistic brains and bodies to function better - it needs to be a part of our daily life.

CinderMcDonald

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Tuesday September 23, 2014 · 1:44 PM PDT

2014/09/23 · 13:44

Disclaimer: I'm not a good writer. I became disabled due to a stroke-like event 12 years ago. Despite my best efforts and use of spell-checkers, I skip words, mess up verb tenses and sometimes combine words in weird ways.

Don't call me "special" or "courageous" or any other BS. What I am is qualified to talk about is the social injustices that disabled people face. I am disabled, plus I am a parent to a disabled daughter who is now 22. I have a younger brother with severe cognitive challenges. I want to talk about some recent news stories involving disabled girls and women that are truly, truly horrible. Judging from the lack of diaries I've seen in this subject area, I don't think anyone else is going to write about this. These women's stories deserve some attention, so I'm going to post the links to their stories and then I'm going to share a little personal history about why those stories resonate so deeply with me.

The first story is the rape of a 14 year old special needs student at Sparkman Middle School in Huntsville, Alabama where she was coerced into being used as rapebait by school officials.

The next story is about an 8 year old girl who was tazed by 4 police officers while holding a paring knife.

Another story is about a 18 year old young woman who was gunned down by police while holding a butter knife.

The final story is about a woman shot and killed by police while holding a hammer.

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Doug Sanders, please talk to my daughter Kyla

CinderMcDonald

Community (This content is not subject to review by Daily Kos staff prior to publication.)

Sunday November 17, 2013 · 12:00 AM PST

2013/11/17 · 00:00

Autism Speaks cofounder Suzanne Wright's recent blog post dehumanizes autistic children and labels their parents as victims. Autism Speaks raises nearly $60 million a year in the name of autism but only 4% goes toward direct services. They are widely disliked by autistic adults and many family members for their complete failure to include autistics in their organization. They use horrific negative stereotypes of autistic children to market their charity. I am an autistic adult and my daughter and my brother are autistic too. I'd like for my daughter to have the opportunity to talk with a major supporter of Autism Speaks, Doug Sanders, President of Sprout Markets, who has a grocery store here in my neighborhood. My daughter is a talented artist, passionate, and she's better at public speaking than I am. If he got to know an autistic young adult, I thnk he'd be pretty impressed, and he just might rethink his views.

RSS

Women* with Autism: An ignored health care crisis

Autistic Acceptance Doesn't Seem So Radical To Me

Autism and Exercise: Why It's Frustrating

These Disabled Girls and Women Didn't Deserve to be used as Rapebait, Tazed or Killed

Doug Sanders, please talk to my daughter Kyla