I also was constantly assumed to be a parent of an autistic person, as opposed to an autistic adult, when I interacted with autism organizations. I remember I got in contact with an autism organization, which I'm choosing not to identify. I had been forced to get into contact with them when I talked to professionals asking them for help dealing with an issue and they assumed the fact I was autistic was at the root of my problems, even though I kept telling them again and again that wasn’t what I was having a problem with. When the representative called me back, they were asking me about “my child” the entire time. “Are you the parent of Caley?” they asked me. I just hung up, because I didn’t know how in the world I could respond to that. Apparently it was assumed that an autistic person would not be competent enough to make the phone call.
A year later, I had another run in with the same organization, having endeavored to give them another chance. When I asked for help, they assumed I was asking about volunteering opportunities, not asking for help for myself. It was assumed that a university student could not be autistic. When I saw the puzzle piece logo, which was on all of their material, I told them that I found the puzzle piece logo to be offensive. I said, “I’m a person, not a puzzle.” The representative told me, “I know, but our director insists upon it.” Once again, I had to cut off contact, and didn’t get the help I needed.
When I was getting help from a governmental organization for disabled people, they told me I had to take an IQ test because they were going to be giving me help going to college and wanted to see my job aptitude. Prior to this point, repeatedly the jobs they were suggesting for me were very basic skilled, the sorts you learn at vocational schools as opposed to college. When I asked how high the scale could go on the test they were giving me, they realized they didn’t have an IQ test that went into above average. I had to come back another day for a test that could measure me properly. Apparently disabled people aren’t expected to be intelligent.
At the autism support group I accompanied my family to, parents basically got together, talked about how horrible it was to have autistic children in my hearing and all the hearing of all the other autistic children and adults there. It led me to feel like I was a burden; I was told I was a lot of extra work and I wasn’t worth the work because I wasn’t a normal child. Not explicitly, but it’s basically what they were saying a lot. I left there hurt, having heard that I needed a cure, which made me feel like there was something wrong with me being who I am. The autism support group apparently wasn’t intended to support autistic people.
At the social skills group, we were all shoved into the same room regardless of age or skill level. We were made to repeat stupid scripts again and again. It was annoying. Because I’m not stupid, but they were treating me like I was stupid.
All of these experiences were very othering, too. Out of these experiences, the support group stands out as the worst offender, one which I was exposed to again and again and again. "Normal" kids' parents don't have support groups. The social skills group was the same; "normal" kids aren't expected to rehearse the same conversation over and over again. Normal kids aren't treated as though they're stupid. But these experiences are far too common for autistic children.
That’s it. Remember that we’re here and please presume competence, because if you don’t, I’ll presume you’re not a competent professional.
-Caley
Note: This post was dictated to me, Creigh, and I typed it all, since as previously mentioned Caley has trouble getting her thoughts out when writing. We also worked together on editing for grammar and flow, but the words are all Caley's.