Diagnosis? Part One

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So… Covid19… Lockdown… strange times.. “unprecedented” ( how often was that word used pre Covid eh?) times…

It was during the first lockdown I finally realised I am autistic..

It wasn’t the fact that I’m a parent of an amazing soon to be 20 year old autistic person. It wasn’t the 16 years plus I’ve worked in Autism, after leaving a career as a pro makeup artist. ( and I’ve not regretted a single day. Ever.- to the point I can’t believe I did anything else but work with autistic young people and their families as well as and most importantly those who Educate them).

It wasn’t even the Autism post grad degree or the fact that over the last 6-8 years I’ve surrounded myself with wonderful glorious and often sparkly autistic friends I consider family.

I mean the signs kind of were always there. I don’t know why I always dismissed it when one of my autistic friends commented that I was autistic and were shocked when I replied no. But I did. I guess that’s another blog post for another time.

I was a “shy”child. I mean painfully so- to me. I recently recalled my first panic attack and spoke about it on a Facebook live ( hyper – empathy ). I must have been at most 5-6 years old. In the states we did take those iconic yellow school buses. I was waiting for the bus and this kid shows up. To any other child, they would respond with interest or apathy. I went into what I called a panic attack. Who was this person and WHY are they here.

I can remember every thought and every feeling I felt. The anxiety and panic rising…I felt them often throughout my childhood- teenage years and adulthood. Up to today and I will again. I finally realise that and it’s ok.

I didn’t have many friends. I remember thinking adults were by far much more interesting and they, bar some, listened to me. I was called the “little professor” as apparently I was smart for my age and of course, wore glasses.

But I also remember vividly feeling completely out of place. All the time, unless I was with one of my only friends, my dad or by myself.

It was the late ‘70’s. I was what was called a “latch-key kid “ . My parents were divorced ( another long story) but good friends and I saw dad in weekends, every weekend as well as holidays and vacations at the seashore. So weekdays, school days were at mom’s. Mom had to work, Dad provided anything we wanted but mom was very independent ( and rightly so! I get that streak from her- albeit I’m adopted (another long story). So I came home by big yellow school bus and wore my home key on a chain around my neck. Hidden of course. Yes. Literally around my neck. Hence Latch Key kid..

So I had time on my own as my older sister was always out. ( another long story – boy there are a lot of “long stories “ 😆) . I loved taking my transistor radio outside ( round red one – it was so cool 😎) and my skates and just skate for hours., or climb trees.

Occasionally I would play with my friends. I only had three that I remember. Two at my mom’s house and one at my dad’s.

One of my best friend’s at Mom’s was Theresa. Theresa preferred to be called Terry as we got older. Terry was Downs Syndrome and I realise now autistic and definitely trans. Terry died when I was about 17-18. Years later I realise Terry was much older than I was and had a heart defect that led to his death.

Terry was amazing with his love of cheesy 70-80’s American shows specifically The Dukes of Hazzard. Terry was also funny as hell. Plus Terry was kind and loyal and cared for me. So it was easy as all hell to break the nose of the kid who dared make fun of Terry. Mind you I had also broken the nose of a kid three years older than me who dared to mess with my sister too.. I guess I had a strong sense of right and wrong and that has never left me.

The other two girls. One at dad’s and one at mom’s were named Susan. I kid you not. Coincidence? Who knows at this point over 40 years later. Both were what were called at the time “Tom boys” like me. We rarely played what other “typical” girls played preferring to explore, create dens, beat the boys at whatever game they were doing – simple ones like kickball being a favorite, swinging on the swings and skating.

Early memories include the need to put my toys to bed including pillows and blankets. Many would see this as appropriate play. Sure unless you consider the need I had to check them often, as if suddenly they wouldn’t be warm. I also lined them all up. Often my dolls would have adventures with Darth Vader. Now is it because I was born female and a child in the 70’s that these, now obvious signs to me, were missed?

We didn’t understand autism the way we do now back in the early 70’s and 80’s. Inclusion didn’t even exist and Terry went to a special school. Special education schools were NOT what they are now, back then. I went once. I was young and I can’t remember why I was there but I still remember the shock I felt and that they most certainly did not understand Terry.

So is it any wonder I wouldn’t be seen as autistic, especially as a girl? Autistic people were rarely diagnosed and even less so in the 70’s.

I realise now I learnt to mask at a very young age. My grandma was amazing in helping me, I see now. Those times we sat on benches by the sea on the boardwalk or even just a busy street in west Philly. Every passing person, every one we saw had a story. She would make up whole story lines as well as dialogue with me. What would this one say if they found out they got their dream job? Lost their keys? Found out their wife was cheating.

I think she knew. My dad was without a doubt autistic and she saw it in me. I’m sure of that now. ( which is Wild! Remember I’m adopted!?)

Dad. Dad who had the same dark eyes and hair as me. Dad who loved and introduced me to Doctor Who, Star Trek, and Hammer Horror movie Saturday mornings. Dad who sat through Star Wars – all three – multiple times and loved to walk the mall eating ice cream with me, as I people watched.

Mom, with dad, nurtured my love of reading. Giving me access to books probably far beyond my age but respecting me enough to go forward it. So I was reading ShoGun as 9 years old and the entire Lord of the Rings, as well as Nancy Drew all at the same time. They also introduced me to classic films and good music. Mom showed me women can be independent, strong and have opinions. Dad showed me that men can be kind, soft and accepting of difference.

I was also called “cry baby” ( ie- hyper empathetic!) as well as “the little professor “ and have vivid memories of being told I was too emotional “over emotional” and being shamed for showing my emotions the way I did. Which I see now as full on hyper empathy. I cried at a lot of things including movies, tv shows, when someone else cried, every time I was reprimanded ( even softly, kindly) or shouted at, scared and even angry. I cried enough to be labelled a cry baby. I was even given this little figurine of a baby crying once. The person who gave it to me, thought it was hysterically funny. It wasn’t.

I remember feeling tension in a room even as a small child. Sadness was almost palpable sometimes. I could feel other’s emotions, especially some of my immediate family members without them saying a word or seeing their face. I still cry if someone else cries. Certain songs, movies, even commercials! But I understand it now and can use it, control it a bit more. But for years it led me to try my best to change someone’s emotions especially if they were sad or angry.

I remember being told to stop hugging people. I do remember hugging my nursery/kindergarten teacher vividly as she was a nun. I also remember being confused by her reaction. Looking back I see she was shocked most likely and felt it “inappropriate” possibly. I also remember watching other people closely especially when emotional in any way to try and figure why they were and what it was supposed to look like as it seemed my emotional reactions were somehow wrong.

There was also that time at the shore that my sister and I were almost taken into a cult/ abducted. If it weren’t for my sister telling my mother immediately when we saw her. I would have been. My sister had no intentions of meeting these people who suddenly approached us while we were playing arcade games on the boardwalk at the seashore. I realise now that she knew exactly what was going on. I didn’t and was absolutely going to meet these two adults much older than me later that night and I certainly wasn’t going to tell my parents. They told me not to. Plus it seemed fun.

I had no concept. I certainly didn’t think they were not going to let me go home to my parents when I had enough of the fun and games they promised. It is horrific to think what could have happened if my sister didn’t realise and immediately tell my parents. I found out years later the police showed instead of us.

The need to control me as well as make me fit in was there 5 days a week with 2 days relief and the ability to just be. Educated by nuns pretty much until I graduated high school, the message to “fit in” was constant and never ending as well as inescapable.

Some of my good high school friends saw me without a mask but others rarely did. But I was always quietly rebelling. Could this be an element of pathological demand avoidance? When the principal/head teacher who was a nun told me to cut my 80’s post punk/ post modern hair ( think very teased out long fringe/ bangs) and I returned to school with my head shaved? ( think Annie Lennox 80’s short!) I mean I did what she asked right?

How about the times I got permission to go to a school dance and I was walked out of the apartment we lived in virtually a clone of my Barbi- esqe sister minus the long blonde hair, long legs and breasts. Only to go to the laundry room in the basement where I stashed my real- virtually all black outfit with leather jacket in the dryer and change? Clothes I worked my ass off babysitting, newspaper rounds and when just legal enough with parental permission as a “busboy” to get and hide. Physical making anyone ?

At 15 I lost my dad due to a massive heart attack. Looking back, I masked hard and delayed my grieving. I became very depressed at at one point suicidal. I realise now I had a complete burn out. I wasn’t just depressed. I couldn’t do. I couldn’t think. I could not feel.

Thankfully with good friends and support I slowly came out of the burnout and depression to a degree.

By 18 I had not only had moved out of my home for a couple of years, I graduated high school, moved into a shared house, pierced my nose, pierced my ears a few more times, bleached my hair blonde, had extensions and got tattoos.

I also started going to clubs, bars, gigs and of course parties at the same time I got drunk for the first time and took my first drug.

Again… signs..??!

Part two to come …..

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