If 5 years ago you would have told me I was going to be writing what i’m about to say–i would have looked at you with the utmost confusion. 5 years ago I knew nothing about kids, about development and speech milestones or about sensory issues or …Autism.
But I’m tired of hiding behind hushed words. I’m tired of people telling me “my kid is fine” until he falls off the 5yo playground equipment because the toddler stuff doesn’t stimulate him enough. I’m tired of wondering where his sensitivities may have come from (so I can understand them) while I get nauseous around avocados and scrap off each topping of a pizza just as he does. Yes–I feel my son may be autistic and that I may be to. And yes-I’m seeing a therapist as is Austin (several in fact) to figure out if this is it or something similar on the neurodivergent spectrum. But let’s go back a little, shall we? Autism is not “just” those things.
It all started with a book Nuerotribes by Steven Silverman. I wrote about it here. My mind was turned on to how people could be so negative to those who are just “different” and the history of something I didn’t see as weird or diseased or needing to be fixed. I grew up in a house where all mental processing was accepted. My dad was bipolar and had infarct dementia along with his diabetes/Parkinson’s. My mom was a grade school teacher and was trying to escape her bad self-esteem issues alongside parenting really 3 kids. (i’ll keep where that came from as private as possible.) I grew up liking classic music, never seeing a major horror film or concert and protected by a parent at school who knew how to address my every need in learning. I made it to GATE despite almost not qualifying for language. That being said — I’m pretty geeky and nerdy and have been My whole life (not sole descriptions of autism btw.)
But then I saw a video by Agony Autie about being autistic. And another. And more videos by Neurodivergent rebel And learned an old friend from church had an autistic daughter. I learned autism isn’t a disease that needs curing, but a different way of communicating and thinking. I learned about neurodiversity (something I LOVE). I learned that we need to provide more support for the autistic community and just not drop them off in adulthood to fend for themselves or criticize their behavior. Then all these memories and connections to my childhood came flooding back. Something I had been trying to reach for a very long time since i have a hard memory block for what happened before my mom got sick when i was 12. I found pictures like this where I see nothing but a mirror image of what my son asked for the other night at the table.
See me?? Hands over my ears? Yep–Austin begs me to hold his ears and head like this when he has had too much. Occasionally when he’s trying to process a new noise.
So you’re probably thinking “you’re crazy Sara.” “you’re not autistic.” “Don’t worry you’ll be fine.”
Well first, I am fine. There’s nothing wrong with me. Second –I’m not crazy. There’s A LOT of things i cover up (technical term “masking.”)
1) I actually do have a problem with eye contact. I remember doing speeches in 4th grade and it was something I always missed (as well as talking too fast.) I learned to mask really young (typical for girls) and remember being told eye contact is super important so I forced myself to do it. It requires a lot of energy…but i’ve been doing masking so long I don’t even know if I can turn it off. What it feels like? – Like I’m staring. Even if it is for a couple seconds, I feel like I have stared into someone’s soul. And if I can’t pull away– i’m sucked in staring. not my fault I just haven’t satisfied my curiosity and thoughts about what’s going on with that person.
2) Transitions are SUPER BAD for me. I mean extremely super. Especially sudden change or if I have established myself in a good place (I.e. a Disney Cruise). Or if my routine (or what I think my routine is) gets adjusted too much. I sit and stew on exact words said and i go into a downward spiral of depression and anxiety. I’ve already been pseudo-diagnosized with Adjustment Disorder and possible PTSD. People that know me know i’ve been through a lot in my life before I was even 30.
3) I prefer to use music to express emotions. Blaring it so loud I can tune out the world. I sink into the notes and I don’t even register what or who is around me.
4) While I have PCOS (comorbidity occurs a lot with autistic, especially things related to healthy gut) which provides me with excess body hair and limited head hair– in college i plucked out 2 inches of hair on my scalp. Don’t. Believe me?-see my first passport photo. Why?-Because I didn’t want “fly aways” and I could see them on EVERYONE’s hair. I can still picture it now sitting in a dorm building meeting looking at peoples hair.
5) I fidget. More than I realize. I originally thought it was just habit. But when I’m dealing with stressful stuff–i click pens, spin fidget spinners, and tap my fingers a lot. Today I pinched my fingers together. It’s a stimming technique. And I guess so was my dancing, singing, music playing. Today I bounced up and down on the curb at Disneyland because the parade had just come thru and I was trying to watch my son thru the whole thing.
4) It is very likely I have expressive language issues. When I was in grade school I had grammar/spelling issues. I had trouble catching up to my thoughts racing through my head. I also titled my head when learning how to write handwriting. I do some of this still. Austin likely has this too… He also has clear speech delays, doesn’t express things that are personal (like “mine” or “i like”) and lacks some major (beyond normal) focusing abilities.
Don’t feel pity on me. This is a new experience and I’m learning a lot of things I’m very happy about like why I would get crying upset but not a really anxiety attack. It’s because my cooling skills were gone and I had “lost all my spoons.” And I have talked to my therapist who while noticed I was talkative and social could see why I may have dipped my toes in the rainbow you see below. I could go thru all the categories and show you where myself and Austin struggle with things. But that’s a whole other blog post. 🙂
So there. I have put it all for all to see/hear. Some may not be surprised. Others will criticize. But I’m getting the help I need and I am 150% and more here for my son. 🥰