I don’t remember when my parents told me that my little brother was autistic. I don’t remember a time when I didn’t know; my memory doesn’t go back that far. He was diagnosed when I was around five or six, per his age of diagnosis at three. I’m a late-diagnosed autistic, not receiving my diagnosis until age 25. He has so called “Classic Autism,” accompanied by a language delay (although he now speaks fluently). I did not have a language delay. In fact, according to my parents, I started speaking and hitting other milestones younger than average. The difference in language delay is what really led to my missed diagnosis for so long. My parents thought how could I, who hit all my milestones, have the same diagnosis as my brother, who lagged behind peers.
I didn’t have any diagnoses until trying to learn skills. Reading was a substantial blocker. My dad tutored me for hours every night, while I’d throw enormous tantrums and forget words from one page to the next. My resulting diagnosis was ADHD. From there the list grew to include OCD with dermotillomania (skin picking disorder), Generalized Anxiety, and Bipolar II disorder. Overall, I was a good kid. I never did drugs, committed crimes, or even drank underage, but I was rebellious, frequently yelling and slamming doors at home. I said intentionally hurtful things to my parents while also seeking attention from adults at school.
I had many privileges as a child that I was unaware of and ungrateful for. My family had a lot of privilege – my parents were married through my and my brother’s entire childhoods (and still are); my parents have graduate degrees and relatively steady white-collar employment, putting us in lower to upper middle class categories at different times; and we are Caucasian. However, when I outgrew “playdates” organized by parents, I struggled to hold down friendships. I didn’t struggle to make friends, I could do that. Instead, after short periods of time, I was ostracized from groups for reasons I didn’t understand. I spent much of my childhood alone, wondering what I was missing that others seemed to have. My missing puzzle piece. In addition, I didn’t have the sibling relationships I saw on television. Pre-teen and teenage shows overwhelmingly feature close knit siblings and friend groups, where the parents take a backseat. I watched significant amount of television since I didn’t have much else apart from school. Between the lives of my fantasy-peers reflected there and the distorted image of my actual-peers played across MySpace (and then Facebook), I was overwhelmingly lonely.
With that came intense jealousy of my little brother. Josh was always surrounded by people, mostly younger and (to my kid brain) super-cool adults. I now understand that those individuals were therapists, teaching him skills he needed to live a fulfilling life. They were paid and not his friends but I didn’t understand that as a child. I observed my parents spending unequal amounts of time between us. This was, of course, necessary. I was an independent kid while Josh needed help with nearly everything until much later in life. There was a dichotomy in discipline between the two of us. Josh’s meltdowns were met with understanding, whereas my “tantrums” were met with punishment and dismissal. Josh did not have to eat foods he didn’t like, I had to clear my plate whether I wanted to or not. With diagnosis, we now understand I was having meltdowns out of my control, not tantrums for attention. My dislike of vegetables was sensory based, rather than preference for junk. I started throwing up and choking on food I didn’t like as I got older, cluing surrounding adults in that there was something more extreme going on.
I graduated high school with few friends, and went to college, where I had some friends but not many. I began self-identifying myself as autistic my junior year of college, as I felt more and more like something was off with me. At the time, autism was the only diagnosis I could think to explain the emotional and behavioral issues I exhibited at times. My journey to diagnosis started in my second internship post-college. I was fired after five weeks into the internship and left stranded in a South American country. The termination letter was both a gut punch and enlightening. It read like a diagnostic assessment. I was terminated for using “rude tones” with volunteers, “oversharing,” difficulty sustaining attention, and more. When back in the states, I met with a therapist to help deal with the trauma and self-esteem damage that had come from that internship. Upon seeing the termination letter, she recommended an autism assessment.
Okay, so now you might have a little insight into your child(ren)’s minds. What do you do?
Well no advice I can give here is one-sized-fits-all. For that matter, I am not a child specialist, psychologist, behavioralist, or anything of a sort. I work in IT. I speak from my experience as I described at the beginning, and a lot of flexibility comes with my family’s circumstances that not every family will have. The wait time alone for autism support services in North Carolina is years, and many parents will be all the support their high-support child has for unpredictable amounts of time. I will say that autism does tend to be genetic and missed in girls and women. It can also be missed when other diagnoses are present. My parents never thought to put me in front of an autism specialist growing up. If that is a resource you have, please get your other children evaluated for autism and co-conditions. A diagnosis alone can set a child on a healthier and easier path, particularly in the United States public education system, which is overly preoccupied with labels. So while I don’t have step-by-step instructions for every situation, I hope this gives a little bit of insight into the tangled corners of your child(ren)’s minds.
Autism Diagnosis for Adults: Frequently Asked Questions
“Don’t Forget Me!” The Importance of Sibling Support
About the Author
Becca Alley is on the LiNC-IT program Steering Committee, ASNC Self-Advocates Advisory Board, and provides consultant support to UNC TEACCH. She has a full-time job at a large financial institution as a Project Management Officer (PMO).Tags: autism, autism awareness, autism behavior, autism communication, autism gender, autism siblings, Autism spectrum