I have shared some insights on what it is to go through life as an autistic person from time to time. It’s funny because there is so much being said and done about accommodating children on the ASD spectrum but there is next to nothing said about what happens to these children as they become adults.
I sincerely understand what challenges autistic kids go through and what sheer hell growing up on the spectrum is, especially when you know you don’t belong, and no one, especially your own parents, knows what to do with you.
In their defense, they tried. Doctors had no answers. All they could say about the 2 year old who could read the dictionary but did not want to be touched, who was terrified of anyone who was not an immediate family member, was plagued by night terrors and screaming fits, and could not walk or run properly without falling, was I had “congenital gross motor deficits.” Physical therapy for my gross motor deficits was nominally helpful, as was vision correction. I am coordinated enough to drive a manual shift car and walk across a room without falling. I eventually got to where I could ride a bike and rollerskate, but much later than most kids and not as proficiently. Nothing anyone could do could assuage my anxiety and social ineptitude. I have worked with psychologists and counselors (some good, some bad, and some positively abysmal) but to this day I still struggle with both anxiety and social ineptitude. I have had to build my own roadmaps and navigate my own way.
Medication (Prozac and Catapres, prescribed by a one time family doctor who had some understanding of anxiety, depression and autism) and educating myself have been helpful in this endeavor, but there is no “manual.” There simply isn’t much help out there for people like me.
I had to figure out how to script, how to mask, and how to put up a good front to survive. It’s good that the bullying and mocking isn’t as widely tolerated (and sometimes even encouraged) as it was in my youth. Perhaps there are ill-coordinated, awkward, badly dressed, terrified, myopic, autistic girls like I was who don’t get thrown in the bushes or tossed head first into the trash cans every morning at school. That would be a start.
However well intentioned early intervention and active assistance for autistic children may be, the challenges and the social dystopia don’t disappear when one turns 18. If anything, life becomes more painful and complicated and isolated because there is a dearth of help or advice for autistic adults.
I’m 50 years old. I grew up in a poor backwater town where educational resources were sparse at best. On my first day of second grade the teachers were arguing in the hall because neither of them wanted me in their class, and both claimed that the principal had promised each one I would not be in either teacher’s class. Eventually they came to an agreement, in which the teacher with the least seniority had to take me. I am hyperlexic and could read before I was two years old. The teachers in elementary school were intimidated by my vocabulary and reading ability. They didn’t know what to do with my constant freakouts- like when bees or wasps would fly in the room and I would lose it in terror at the sight of flying insects. They had no idea what to do with me, and in retrospect I can see that my mere presence freaked them out. I don’t blame them. I wasn’t normal. I didn’t look normal and I didn’t act normal. I hated (and still have trouble with) maintaining eye contact with people. I don’t like being touched.
I have no explanation for my reading ability or the compulsion to read everything I could find in print, but I am thankful that I was verbal at a young age. I was probably spared a great deal of injury and abuse simply because I could speak out to some degree.
Even though I was verbal and quite literate very early, I still have issues processing emotions and making my needs known- or even knowing whether or not my needs are valid or appropriate. My constant and intense anxiety (which has not gone away with age) makes it difficult for me to communicate when I am stressed. I was easily intimidated and was routinely beaten up by my older sisters and kids at school. I was an easy target. The terror, insecurity and reticence to speak out or to defend myself remains.
My own mother would backhand me for “staring” when she thought I was too focused on someone or something, or for being “rude” for not hugging and kissing on people who were her friends, but who I didn’t know from Adam’s house cat. Physical contact of any kind is uncomfortable for me unless it involves a close family member (and then only in certain situations)- or a dog. My aversion to physical contact has gotten even more acute with age.
To make my childhood even more fun I had chronic health issues-including constant respiratory infections and a bout of rheumatic fever that has led to heart arrhythmia, joint damage and constant pain. I have ongoing difficulty with spatial perception which I am sure contributes to my poor gross motor skills.
On the plus side I have managed to stay gainfully employed since I was 16, my son is thankfully neurotypical and doesn’t have my wiring issues. But life on the spectrum is different. It’s hard to know where you stand with other people.
William Shakespeare once wrote,“All the world’s a stage, and we are merely players.” This is so true for me when my every interaction with other humans must be carefully analyzed and scripted, and even then I am terrified of being inappropriate, using language that doesn’t resonate with my intended audience, and sending the wrong body language. To make it worse, when I’m tired, sick or stressed, my ability to script and filter goes right out the window. I am not normal. I can put up that front, but it has a very high cost. The older I get the more maintaining the “normal” facade exhausts and depletes me.
I understand I am the one with the disparity and I am the one who has to be accommodating and I have to adjust. No one is going out of his or her way to make my life easier. This world wasn’t designed for people like me.
At my age some of my idiosyncrasies get a pass. I dress how I want for the most part, and can decline most social activities outside of work that I deem stressful. It’s a mixed bag.
I wouldn’t say that being wired the way I am is easy but then again it’s the only way I know. I still have more questions than answers.