The Big “A”
It was over 7 years ago that my first son was given the Big “A” label, autism spectrum disorder. He was 18 months at the time. Although it was a shock, it was also a relief as he had been born with two severely clubbed feet – something the doctors and geneticists always felt was linked to something else. My pediatrician always watched him closely and at 15mths when she felt he was not meeting his developmental milestones and falling further and further behind his peers… she wanted a specialist to check him out. After blood and urine work to rule out any other possibilities, EEG’s, hearing and eye tests we got the diagnosis from not one, but eventually 2 pediatric neurologists.
Fast forward to 2013 and I was getting a “Déjà Vu” feeling, only it wasn’t something in my mind… it was staring me in the face everyday. I felt that there might have been something “not right” with our boy twin early on… but instead labeled him – the sad twin, the boy, the angry twin… and hoped he would turn a corner at some point and be the happy child that his twin sister was. However, as the months went by and our babies grew into toddlers it was more and more apparent that our little boy was not keeping up with his sister. They were 5 weeks premature and had earned time in the N.I.C.U., and although my daughter had some issues that may have really warranted her stay and not just “hospital protocol” she seemed to thrive, our son just seemed a bit out of it. At home he cried a lot, didn’t sleep well and over time this escalated to the point where everyone in our family seemed to jump at his demands… yet we never really knew what he wanted. By the time of their first birthday I started to let the thought creep in… could he be on the spectrum? His older brother had also been cranky and inconsolable at times, but they were also different. Having twins though… well that just gives you someone to compare with… daily. I was starting to think that my son’s issues were not just a “opposite twin” thing… something else was going on. After several months of agonizing over it, I went on line to review the “red flags”… I watched video clips on various Autism support websites and felt the answer was staring me in the face… autism… the label that I hated and had such a negative connotation to it… was going to be put on another one of my children again!
Of course in our country, Canada, things don’t happen too fast. My older son had been born in the United States as we were living there at the time. We also lived in a good State with autism services. Now we were dealing with a “free health care” system that is overwhelmed and under-serviced. After getting my General Practitioner doctor to send the referral to the local Pediatrician (a doctor that my older son already was a patient of) it still took over 6 months to get the appointment for the diagnosis. This was actually quick compared to some parents experiences. However, having already traversed the system once before, I was aware that you need to be that “squeaky wheel” in order to get help. I may have gotten it months earlier except for the fact that apparently the ADOS testing in our area is not “set up” to test children younger than 2 years of age. In fact even after that and biweekly calls to the Pediatrician’s office to inquire about our “queue” position and the subtle reminder that we would happily accept a cancellation appointment, we were still told that perhaps we should wait months after our son’s birthday so that he may be more chronologically the right age, due to his premature birth. Again, with a little pushing I only had to wait several weeks after his 2nd birthday and were scheduled for the end of this month. Then, shockingly… we got a call on a Thursday saying there had been a cancellation and could we come in on the following Monday… I jumped at the opportunity and said “YES”. That appointment was over a week ago now, and after months and months of waiting, dealing with County programs to flag for services and special needs like Autism – our son had flags “out the ass” for Autism incidentally! We went to our appointment. The doctor was, as usual, very warm and patient with our child as she has been in the past with my older son. She worked with him in the little plain room attempting to get him to make eye contact, ask her for help (even non-verbally), play with toys appropriately, copy her actions, engage with toddler games like blowing bubbles… but not much grabbed our son’s attention. He barely made eye contact, he was fixated on a couple of toys that she had, ignored most of what she did, and instead jumped around the room putting toys in his mouth instead of playing with them. She made notes, scored up the test and gave her diagnosis – Autism Spectrum Disorder. She went on to say that there wasn’t a doubt at this point that he is on the spectrum… and this WAS what we were expecting, and it was a bit of a relief oddly. For me, I felt that there was the possibility of something else, maybe Apraxia or some other learning challenge. I felt our son often looks like he wants to say something, but can’t… So there we were, getting the diagnosis that we felt was there… on to the next step… but wait, she had more… the Pediatrician went on to say that in the scoring of the testing our son was scoring very high and what that meant was his Autism symptoms were…. Severe. Ok,… what???!!! THIS we were NOT expecting… severe… um, no… he doesn’t rock or flap his hands… but ok, yes he does jump on the spot a LOT and spin himself sometimes, spin toys, mouth toys like an infant… ok, ok, but really,… severe??!!! Funny, I can’t even remember exactly what my older son had gotten, but it was something like… “I can’t predict where he will end up, low or high functioning, he’s all over the board with his skills and challenges”… yet here I was again hearing something that I wasn’t quite ready for… and didn’t want to process…
Even though the medical DSM-V no longer categorizes children into low, high functioning or Aspergers I think parents and maybe professionals will make this distinction… and why not? It helps to figure out what needs your child has and possibly give you a better picture on how much help or assistance they will need to navigate through their lives. However, low or high functioning Autism can only be determined by an IQ test and that test cannot be administered until age 4. So where does that leave us now… wondering and worrying about the future of our son… at least for the next 2 years!