Growing Up Autistic

As she introduces me on my tours, my colleague Joanne Bowles often mentions that I am very comfortable discussing my autism and answering questions about it, while other tour guides often don’t feel that way, which we certainly can respect. Why is this? Well I can’t speak for them, but it’s been a long journey for me towards self-acceptance.

I’m 32, and unusual for someone my age, I was diagnosed around age 8 with autism, more specifically Asperger’s Syndrome. Most people I’ve met around my age weren’t labeled until their teens or twenties, often they were identified as having AD/HD or another learning disability or mental condition. I was the opposite. My partner jokes that I have “male-pattern autism”- females are less commonly diagnosed with autism, but a lot of that seems to be that it tends to manifest differently in males and females, and most of the research on autism and Asperger’s has been done on males. Autistic girls are more frequently quiet and good at hiding their symptoms. I was loud and opinionated, and definitely didn’t act like a “proper young lady”. Fortunately my father at the time was working for the Menninger Foundation, a mental health organization that had more up-to-date research on various conditions, and that is why I was able to access doctors who could figure me out- at least a little bit!

My parents were amazing advocates for me, constantly communicating with teachers about my IEP, what I was studying, and emotional and social issues that I had. I was mainstreamed throughout my schooling, and had an aide to assist me in 4th thru 8th grade. The aide was mainly there to help keep me focused on my work, and help me calm down (sometimes by whisking me out of the room) if I had anxiety problems. My parents took the attitude with both my brother and I (he is also on the spectrum and has ADD) of focusing on one year at a time. They didn’t worry about planning for the future, they focused on what was in front of them. In retrospect, I can see the disadvantages of that approach, but it was understandable in the light of the more limited resources that were available at the time for transition-age youth.  I believe they did the best they could, and in fact far better than many parents would’ve done in the same situation!

Anyway, my attitude towards my label was very negative at first when my parents told me, because it sounded negative- Disorder, Syndrome. It sounded like a disease, like there was something wrong with me. My parents tried to explain that I was still the same Mariah, but now we could better understand how Mariah thinks and what she needs. My brother had similar reactions when he was told as well.

I finally felt better about being autistic after attending a camp for kids with Asperger’s/ASD, Camp Discovery at Courage North as a teenager. At last I could be around kids like me (no, my brother wasn’t enough!) I realized that autism wasn’t necessarily a negative, it just meant I was different. Meeting an adult on the spectrum (each cabin had one- called a mentor) was a life-changing experience. I could look up to this person, and have an idea of what I could grow up to be. It was run by the Autism Society, and after going there a couple times, I returned as a mentor and worked there for seven years.

Related Topics I’d like to expand on:

Patterns of Autism in Males/Females

Integration Should Not Mean Isolation

Autism vs. Asperger’s