Telling people you are autistic can be hard. It can be even harder when the person in front of you doesn’t believe a word you are saying.
People who’ve known me for years say things like…
“Why are you complaining all of the sudden? You never used to talk about autism or complain about these problems before. It’s like you’re happy to have a disability. You just want attention.”
These people are less than half-right.
Yes, people who have known me for years have never heard me complain about my sensory issues. When I was a little girl and tried to explain my problems to people, nobody believed me — so I stopped.
When I was in school, I was very sick. My school building’s busy environment and florescent lights were painful and made me physically sick. The doctors told my mother there was no physical reason for my sensory complaints and that I was making them up to get out of school.
There were no accommodations for me growing up, so I spent my life sick, experiencing pain and discomfort.
My mother told me I had to go to school or she would go to jail. Not wanting to lose my mother, I sucked it up and went. (Side note, remember people on the autism spectrum can take things literally. Be careful what you say to your children.) I experienced this pain and discomfort in silence for 30 years.
I’ve always been different, but my mother told me never to reveal your flaws — so I learned to hide my confusion and executive functioning problems from the world.
Keeping up appearances, trying to be like everyone else and holding myself to an impossible standard eventually led me to an autistic burnout (autistic regression). Finally, as my sensory symptoms intensified, after years of confusion and being told “everything was in my head,” at the age of 30, I received a formal autism diagnosis.
Am I happy to have a disability? No, but I am happy that finally a doctor has an answer for me. After years of searching, I know the reasons for my pain and discomfort. I am happy I finally have the answers and information needed to take care of myself.
Is it wrong to want to feel empowered by information and truth? Should I have let this information crush me — would that be a more acceptable response to others?
They are also correct about my obsession with autism being recent.
I was Anonymously Autistic for 30 years and didn’t even know it.
I never spoke about autism before learning about autism. Is that really so strange?
Until accidentally stumbling across Dr. Temple Grandin (my hero), I didn’t know what autism was. Listening to her words and the way she described the way she experienced the world was a shocking revelation to me. I will be forever grateful for the work she has done educating the world about autism.
Here is where people always get things wrong — I don’t want attention. Most of the time, due to my social anxiety, I wish I was invisible.
I’m not trying to complain when I point out a sensory trigger.
Now that I know what’s going on with my body and brain, it is easier for me to understand my triggers. People say I am complaining when I ask for simple accommodations, like a change in lighting or to wear earplugs. They say, “You never asked for these things before.”
I’ve always had triggers, but I had learned to ignore them, making things worse. All because people don’t want to hear me “complain.” They don’t know about the secret headaches and physical pain caused by certain sensory experiences. If I try to tell them, they accuse me of complaining or exaggerating.
I’ve been acting like everything is OK for a long time now. It’s tiresome, but apparently I’m so good at “passing” that even some of my closest friends can’t see (and refuse to believe in) my autism.
It hurts that they think I am lying, but I try to remind myself they are only responding to what I’ve let them see over the years. They only see the tip of the iceberg.
Do I show them more or let them go? I get the feeling they don’t care to know more.
Luckily my immediate family has been supportive and encouraging. They remember how I was as a child and don’t doubt the diagnosis. I am grateful to have their love and support. Coming out to them was easy because I was not met with doubt.
Telling people you are autistic is hard for a multitude of reasons — people don’t believe you, people don’t know what autism is, people think autism can be “cured,” people think autism only affects children, the list goes on and on. I believe the worst thing about coming out is when you try to come out to someone close to you and they basically tell you, “No, you’re making this up. There is nothing wrong with you.”
When you don’t believe, it hurts so bad that I want to stop sharing, but I can’t because the world needs to know — for all the other Anonymously Autistic people in the world.
Follow this journey on Anonymously Autistic.
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