Unconsented Disclosure of Disability: An Autistic Perspective


It is generally accepted that no one outs an LGBTQ person on their sexual orientation or gender identity, the individual comes out of the closet themselves. The person in question controls that conversation. It can have unwanted consequences. It leaves people open for bullying, discrimination, etc.

Unconsented disclosure is on the rise since the internet usage has increased. Parents of disabled children and talking about their children’s disabilities and how hard it is for the parent without the child’s consent. They buy tee shirts outing them without the child fully understanding so they can give consent. Children’s images are posted in different forums online without the child knowing or giving consent. Autonomy is violated.
Unconsented disclosure of disability is when someone other than the disabled person tells that the disabled person is disabled by a condition without the disabled person consenting to the disclosure. The consequences to this can be very similar. There are certain people in school who have to know, like the teacher and therapists. This goes beyond that.   I have personal experience with this as a child. I am thankful there was no internet when I was a child. It would have been much worse.



Unconsented Disclosure: A personal Story

Before being Mainstreamed

I did not know I was autistic when I was a child. As far back as I remember, I was in Special Ed. They were called self contained classes. There were normally about 8-9 children in my class. I was mainstreamed out for art, math, social studies and English. That meant I would go to a typical class for those subjects and stay in my special ed class. This was fourth grade.
After an IEP meeting my mother went to, it was decided I would go to a “regular class (that’s what it was called back then). ”  I finished fourth grade with my class and had to switch schools. I had friends were I was and I would not see them until middle school. The school district had all the special ed classes at one school and my local typical public school was across town.

After Being Mainstreamed

My first day of fifth grade finally came. This was a different building then what I was used to. My brother went to this school. He was never in special ed. He was one year behind me. I was walked to my class by a teacher since it was my first day.
I took my seat at a desk at the front. My mother told me that my IEP said I needed to. I arrived early because I needed to meet the speech therapist and the resource room teacher. One by one the other students took their seats. I was only used to 8 other students in class with me. There were over 20 in this class! I started to feel overwhelmed.
A few minutes later, the teacher walked in the class. She was an older woman. I don’t remember her name, it was so long ago. She took out the attendance cards. Before everything was on computers, there were attendance cards that were checked off and put in an manilla envelope before going to the office.
The teacher read off the names of each student before calling my name out. She then saw my name, and introduced me as a new student. I will never forget her words. “Amanda transferred here from special ed. she may not understand as much as you do and may behave differently.”
I was mortified. It did not take long for the bullying to start. The same day the other children in the class took turns calling me the r bomb. It was a common thing when I was at school. They hid school supplies and said that I stole them. People took turns torturing me. The principal of this school was not friendly to disabled students so I was all alone. My speech and resource room teachers told me I was lying because those are nice kids who would never do this. I finished 5th grade like this. When I did do something, I got in trouble. I saw in the American Girl magazine to write “how to trick a dummy, turn this sheet over ” on both sides of a sheet of paper. This I got in trouble but being called the R bomb all day was perfectly acceptable.
My mother didn’t believe me either. I was forced to go back to that school. Summer could not come soon enough so I did not have to see them for the whole summer.
The first day of 6th grade came. I had some of the children from 5th grade in my class. I do remember my 5th grade teacher’s name. Miss Duryea. She was tough but took a liking to me. She loved my father’s crossword puzzles. My father’s company was named Dell Crosswords. I was sent to school with red pencils pencils with Dell Crosswords written in gold writing.
After the first week of class, they did the same thing. Call the the R bomb and say I stole their pencils. Only, Ms Duryea was a fan of my father’s. She knew the Dell Crosswords pencils were mine. She made this boy write “I shall not tell lies” 100 times and apologize to me.
They continued with the R bomb slinging but stopped accusing me of stealing school supplies. I guess it was an improvement. I dreaded school all year and refused to go on any trips because I wanted to be far away from them. I was counting down the days until the last day of 6th grade so I could go home for the summer. 7th grade was the beginning of middle school. All 5 elementary schools would mix at the one middle school so there were chances to make friends.
Unconsented disclosure should never happen. It has drastic consequences, even without the internet. Do not do this to your children. Respect their right to privacy and autonomy. This will save future generations from the experience I had. Most parents would not do it if they knew what harm it causes.

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