I will raise my hand in shame. As a clinician, I have not always considered the effect that the words I choose. My reports were full of “impaired communication skills”, “limited ability”, “low-level skills”. And I felt quite free to use these labels because my clients would not be the ones to read my reports. If my report was directed to my client, the language would be different. So at least on some level, I recognised how negative these labels are. Yet I used them about people who as speech and language therapist I truly care for.
And then suddenly my world changed. And with my world my perception changed too.
Over the last year my family have all received the label of “Autistic Spectrum Disorder”…
“They used food deprivation in my program and they made us pair up and do it to each other. I feel incredible guilt over this.
Every morning I’d cut up a peanut butter and jelly sandwich into as many pieces as possible. Each piece was like a little bigger than an M&M.
Then I’d be told to force this non-verbal Autistic boy to do behaviors for each piece of the sandwich. He’d cry, hit his head in frustration, and say “hungry” which was one of like four words he could use.
I have no words to describe how bad I feel about being forced to do this as a child. If he didn’t “behave” he’d get no food and he’d go hungry.
He and the rest of us were expected to perform like trained circus animals for basic rights, like the ability to go to the bathroom.”
My journey to realising that I was autistic is similar to that of many women, in that I was placed in the mental health system as a child. For the next 15 years, I was given various diagnoses – one of these being Borderline Personality Disorder (BPD). My sensory and emotional difficulties were pathologised and misdiagnosed. What we know now is that there is a multitude of evidence showing how often autistic girls and women are misdiagnosed. But, that’s not what this blog is about.
When I first considered the possibility that I may be autistic, I thought the only missing piece was difficulty with social communication. I understood topic maintenance, turn-taking, figurative language, sarcasm, small talk, and the fact that no one actually wants a real answer when they ask how you are doing. I also knew that I hated small talk, talked about things I had no interest in for the sake of being social and polite, practiced responses in my head before saying them out loud, and had more difficulty expressing ideas verbally than in writing.
My mom is Puerto Rican and was raised in a strict Catholic household. My father is from New Jersey and was raised in a Jewish household. My mom moved to the states when she was in her twenties, met my dad, got married, and then they had me.