My girl’s previous owner recently wrote me an email asking about my Autism as it relates to me and my son. She knew someone who had a grandchild who had recently been diagnosed, and this was the reason for the inquiry.
As always, I wrote far too much, and likely overwhelmed her with my response.
I get kind of excited when people ask about Autism…
I guess you could say it is one of my ‘special interests’ and something I could talk about for hours. I also think, however, that I like to share because for so long I felt like people had no clue what I was living with – and their assessments of me were often cruel, and very wrong.
I like sharing this because I believe that the more people that know the less people will be living under such crushing levels of judgment.
After writing to her, I thought this would be a good thing to share (of course, I have to remove some names for privacy reasons – I don’t mind if I am known, but believe my son’s privacy should be respected.)
As I mentioned, it was quite a long response, so I will divide it into two posts. This is how I replied:
I was diagnosed 2.5 years ago when I was 38 – though I had suspected it for many years, and all the online tests I took said it was highly probable (something like a score over 25 means likely, and I would get a 42.)
As a child I had what is known as ‘selective mutism.’ I hardly ever spoke, even to family, and got ‘does not participate’ on all my report cards throughout grade school.
Since I did actually talk on schedule, everyone thought I was just very shy. The truth was I had a lot of trouble with expressive language. I could think the response, and was often ‘in my head,’ but I could not get the words out probably 95% of the time.
I had trouble functioning in a school setting, was VERY awkward trying to interact with other children and even adults, and spent much of my breaks at school (or other social places) standing against walls trying to block everything out. I had no clue (and still struggle a lot) as to why people do the things they do – like playing games, running around, talking to each other…
My biggest struggle as a child that was not understood was in my food issues. I have very strong sensory issues, and some smells, tastes, textures, sounds, etc. did and do hurt me as much as physical attacks. This was (and is) especially prominent in foods, and when I was a child most of what my family ate caused me a lot of distress. I would throw the food out, refuse to eat it, complain that I was ‘allergic’ to it… and would get in trouble for that. My family didn’t believe me.
I actually AM allergic to eggs (but that developed in my teens, and was a favourite food prior to that) and powdered cheese sauce like in Kraft Dinner – which put me in the hospital for a week when I was 7, though no one believed me about that until I was 23 and had maybe 1/4tsp which made me violently ill so I could not stand or see, and was very sick for the next 4 days.
Other foods, however, still caused me a lot of stomach issues, pain, etc. or the texture or taste itself would make me sick.
For me the biggest help would have been for people to believe me when I said (or showed) that typical things were hurting me. It is very true, and is still true today.
The other would be if I hadn’t been forced to participate, and was given quiet places to work at school – but was still included as far as my functioning and comfort level would have allowed me.
