After years of wondering, fretting, and concerning over the unknown, it has been medically confirmed that my son likely has Autism Spectrum Disorder* (ASD). Before this one doctor’s appointment that plunged me into a new reality, I have tried to not let my fears get to me. I was never so fearful about my son receiving the diagnosis as I was about the possibly that I could have been responsible for it.
How could I be responsible for this, you ask?
Four and a half years ago when my son was born, the medically educated, evidence based part of me vehemently ignored the popular idea that vaccines could cause autism. The biomedical researcher in me spent the two months leading up to my baby’s first vaccination appointment (and probably the last few months of my pregnancy) reading journal articles, personal stories, admissions, and anything I could find on this “possible link” between vaccines and autism. It just didn’t make sense. And, even though I was standing vigilantly in the public health waiting room on my son’s second month birth date, the new mother in me still felt a small sense of uncertainty. That uncertainty popped up again at 4 months, then 6 months, and at 12 months, I briefly entertained the idea of delaying the MMR vaccine. Finally, at 18 months it was already evident that my son was “a little different,” so I said “what the heck, give the vaccines anyway.” At his 4 year old appointment, I just didn’t care anymore – even without the diagnosis, I recognized the subtle signs and we were already on the assessment waiting lists.
Before you go jumping to conclusions and accuse me of contributing to the ever-growing body of ill-informed, fear-mongering, anti-vaccine propaganda floating around, I just want to point out that, despite my nagging uncertainty, I vaccinated my son according to the nationally recommended vaccination schedule. I knew my fears were fueled by unsubstantiated claims with no evidence to support them. I knew that those fears fed directly into all of the uncertainties I had over my new responsibility for this tiny human being in my arms. I knew that there was no evidence to support vaccines as a cause of autism, and more importantly, I knew that there WAS evidence to show that vaccines were NOT the cause of autism. It became a war between the longstanding medically educated, evidence based part of my persona; verses the newly discovered, uncertain, and vulnerable role of Mother that I was still trying to navigate.
Vaccines did not cause my son to develop Autism Spectrum Disorder. They didn’t. Period. Even as the months went by and I watched my son miss his milestones each and every time, I maintained that position. Even while I sat with my hands resting on top of my swollen, soon to burst belly and watched my verbally delayed son ignore the speech-language pathologist, I never once considered not vaccinating my new, soon to be borne child. I never ever let my uncertainties and insecurities override what i knew (and what every medical professional ever told me) was best for my children’s health.
Now I sit here, days after the confirmation of this probable diagnosis, wondering how this beautiful, smart, loving child managed to acquire this strange and poorly understood condition. If I can’t blame it on vaccines, what can I blame it on? The books and the internet suggests a strong genetic component – but I don’t have ASD, and neither does my husband… or so I think. The more I read, the more I became familiar with the facts of ASD: and it is too familiar, really.
~ASD wasn’t formally recognized or diagnosed before its inclusion in the DSM in 1994.
~Most parents, upon their child receiving a diagnosis of ASD, begin to realize that they actually could (or did) fit the diagnosis themselves.
~Some people have small obsessions or rituals, and they have rigidity in play and routine
~There can also be disturbances in sensual perceptions like textures, touch sensations, and sounds.
~People with ASD are usually high achievers with average to above average IQ. They usually excel in their education with little effort.
~Most difficulties arise in the areas of social interaction: a lack of eye contact, difficulty making or keeping friends, disinterest in social relationships, feeling misunderstood by other people, not understanding why they don’t fit in or feel comfortable in social situations.
I have always been a person who like things to be structured and to make sense. I find it extremely irritating when someone else does something in a way that I wouldn’t have done it. Even today, I am compelled to reorganizing the clothes in my closet or drawers after my nanny puts them away in the “wrong place.” I might even let myself be late for my next engagement for clothing organization to take priority.
I hate wearing socks and will usually try hard to not wear them at all. On days that I have to wear them, I take them off as soon as I get home. I can’t wear shoe covers in the OR because they make my feet too hot, and when my feet are too hot, I get antsy and anxious. It has been a difficult adjustment in surgery to wear closed, non-breathable shoes. I also get easily irritated with mild touching, stroking, or other light touch. I find this is so irritating that I don’t even like my kids touching me when I don’t want them to; I can never sit next to them at the dinner table because if they brush up against me while they are fidgeting, I almost can’t handle it.
I wouldn’t necessarily say that I am sensitive to sounds, but I have been known to freak out when there are too many different sounds or voices all at once. A TV, and talking children, and my talking husband, and the sound of toys in the background, and then the phone ringing – it call all push me over the edge. Once, in a forceps assisted delivery, I used every once of my energy to not yell for everyone to “shut up” when I became overwhelmed with the NICU team conversing, the anesthetist chatting with the nurse, the support people coaching the patient through contractions, and the staff person explaining the procedure to all of us learners – then add on the underlying beeping of the heart rate monitor and the heavy panting of the woman giving birth…
A few years ago while I was in counseling, I commented on how I was distressed over feeling like I never fit in and could never make friends. When I expressed my concern that there was something I was doing that made everyone turn and run for me, this counselor gave me a small hint:
“You don’t make or maintain eye contact for very long when you are talking to people. That, in itself, can be very off-putting and can make people feel uneasy around you.”
She gave me some tips on how to work on maintaining better eye contact, but I’ve never taken the time to wonder if it’s worked. I also mentioned that I want to make new friends and meet new people, but I always feel awkward and I don’t know what to say, so I just say nothing and then it’s uncomfortable. At that, she just nodded her head and asked me to elaborate.
It’s not just me who’s socially awkward: my husband hates all social situations and would prefer to stay home than to go out and interact with anyone. He thinks all socially accepted traditions are pointless and celebrating occasions like birthdays, anniversaries, Mother’s/Father’s day, and Valentine’s day is frivolous and unnecessary: He fails to see the importance of these occasions and celebrations in the lives of other people (like me). Social awkwardness is not the only ASD-like quality that my husband and I share: We both maintain that school was always easy and we never had to work hard to get some of the highest marks in our classes. We are both in highly demanding, successful jobs, and we are both over-educated for these jobs – with a whopping four University degrees to both of our names.
In the past days, it almost seems like there are more coincidences than I can allow for. Perhaps if ASD was recognized in the 1970’s, my parents would have been having many of the same appointments and conversations over me as I am now over my son. I’m not sure if I want to know, or if it would make a difference to where I find myself today.
I am not completely shocked at these revelations about my own ASD-like behaviours. They have come to my mind for many years now, but I never linked them all together. As I began to notice some of the same traits in my son over the past few years, I started to wonder if maybe there was something I wasn’t understanding. Maybe it was fear: Not fear that I may meet the criteria for an ASD diagnosis. Not fear that my son might befall the diagnosis. My biggest fear was that all this would mean that I am the reason my son is faced with these challenges.
The more I read, the more I think, and the more I learn, I’m beginning to realize:
My son has Autism Spectrum Disorder* and likely has it because of me.
*At the time this was written, we are still awaiting the official assessment and diagnosis, despite my son meeting all of the criteria on his preliminary assessments.