Wednesday, February 13, 2019

54. Connecticut. 

In my opinion my biggest accomplishments are

Personally, being a round the clock caregiver to my late husband for five years while he was dying (he died at age 42). Professionally? Writing a book about that, showing my art in galleries, getting a fulfilling job finding bugs in software. 

I wish Neurotypicals knew about autism: 

Our way of simply being is a different way to theirs but that doesn’t make either NT or autistic better or superior or normal or more correct than the other. I AM normal for me. 

Resources that helped me: 
I had an advocate to come with me to my son’s school meetings. I didn’t get resources until in my late 30s. I got nothing beneficial from social skills group except I got a like-minded friend I’m still in touch with today. Because of the Autism Pilot project in my state I got to meet so many people like me. They helped me literally get my art of a closet and sell it and they got me paid mural work. In school if autism was known I could’ve benefited from.... being understood. I thought I was the only one like me anywhere. 

I want those who are also autistic to know that: Together we are strong. 

As soon as I read page one of Donna William’s first book, I knew FINALLY I know what the hell makes me different. I would never ever have thought it was autism. I had an answer at last. She and I became pen pals, we met, we collaborated on projects, she was my mentor and supporter and she once called me her favorite writer and said I was like a sister. Knowing her has been one of my my greatest gifts in life truly. As a child: I rarely spoke. Quiet was my natural state of being. I didn’t “get” why others did things, especially when I became a preteen. I read encyclopedias for fun like novels and needed to be alone. I was highly creative and easily overwhelmed. I melted down. Social things made me feel setback and drained. I didn’t express emotion through gestures or face expressions. I knew I appeared emotionless yet I knew I wasn’t. People took advantage of my naivete. Certain smells or textures I COMPLETELY boycotted, refusing to ever touch or be around them. My food was limited. I ate the same thing every day for years. I did not do well with change or sudden movement or loud people or small talk niceties or oral reports or yelling.  I had certain interests. Rocks. Bugs. Dust. Secretly planning every detail of a fake party down to creating placards and favors but with no interest in having an actual party. No friends. Isolation. In my own head. Constantly trying to figure out everything. Feeling like an alien. 

How I felt when i got my diagnosis: 
Revelation. Validation. Giddiness. I have never doubted the diagnosis. I have always felt it true 100%. I feel the same feeling today about my diagnosis, nothing has changed. 

 The autistic groups I belonged to had autism radar. If a member said they were self diagnosed which I was for awhile, they received the same support as those formally diagnosed. We could tell who was in our tribe whether on paper or not. That being said I needed the formal diagnosis for disability income after my husband died before I was working and I needed it for the autism program I mentioned

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