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Finding My Voice as an Adult With Multiple Disabilities

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These times are thrilling for me. I’ve been working my sanity off since I was a kid to try to express the worlds within I could not express.

Imagine what it would feel like to have advanced language, spelling and reading skills but not be able to express very basic needs. And then being constantly belittled, betrayed and blamed for it because you’ve been told a million times and can’t seem to figure it out.

For 29 years. I’m almost 31 now, I have a great deal of learning and unlearning left to do. I’ve begun to shift to significantly more written, visual and nonverbal communication despite having language and even being very articulate — when planned and practiced. I’m great at public speaking.

I have literally zero interest in why anyone thinks I should “complain less” or even interpret it that way in the first place. I have well defined values and morals thanks to a lifetime of adversity, a tendency to retreat within myself as a refuge from an often very cruel world, excessive overthinking at ADHD speeds and a magnetic draw to letters and blank pages of paper.

Autism removes most difficulty in being fairly brutally honest with the world; your discomfort certainly does not belong to me.

I’m also my own biggest and only advocate (aside from two doctors on my team now, boo yah) and have been since I was 14 years old, battling severe bulimia, depression and self harm which are common massive red flags for female autism. I’ve been surrounded by those viewing it only as a behavior requiring discipline and hard punishment, better training or just trying harder.

Undiagnosed autism and ADHD due to little to no research on girls/women means many of us will be diagnosed in teenage years or adulthood, if ever at all. Most of us report feeling an innate and persistent sense of “otherness” or feeling (usually unwillingly) disconnected from people. My Ehlers-Danlos syndrome and hyperadrenergic POTS was dismissed as teenage angst, emotional instability, hypochondria, depression, and imagined illness for 16 years, leading to my total disability and largely immobile life and compelling me to share the medical side.

I’ve been the recipient of constant bullying, random attacks, and emotional and psychological abuse. It hasn’t ended just because I’m an adult or because I talk about it. And it certainly hasn’t disappeared or become irrelevant due to the progress I’ve made. If anything, the more I speak up the more hate I get.

As a 30-year-old autistic woman with many complex challenges, rare presentations, falling into nearly every category of “exceptions to the preconceived stigmatic rule” and brushing so close with life-threatening, life-altering and disabling consequences, there is little reason not to speak up.

Not everyone will understand. I’m loving the sense of peace I feel with that lately.

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Originally published: December 20, 2017
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