Warning: This post is long.
Autism has been on my radar since Kiddo was born. It’s everywhere in the news these days. Plus, my husband and I are older parents, which increases our likelihood of having an autistic child. And we both have some autistic traits, which also increases the chances of autistic kids. We’ve been on the lookout for signs of autism since Kiddo was born, but nothing raised any red flags in our mind.
That changed one day when Kiddo was 2.5 years old. It was a day I’ll never forget. We were at Mother Goose, an early literacy program that’s essentially an extended circle time with parent participation. It was winter, and Kiddo and I were putting our boots on to leave when a little girl we knew ran up to her mom and said, “Mommy! I put my mat away!” It was such a simple little moment of a child sharing her achievement with her mom, but it shook me to the core. I’m sure I must have stood there, staring at her with my mouth agape. She was a few months younger than my son, but my Kiddo had never, ever come up to me to tell me about something he had done. Not once.
That was the exact moment when I began to wonder if he might be autistic.
I started talking to a few people who knew him well for their thoughts on the matter, and I was shocked to discover that some of them had already suspected autism. But nobody seemed sure.
At first I resisted the idea of getting him assessed because by labeling Kiddo as autistic, it felt like we would be labeling him as disabled, and I didn’t feel like he was disabled. Different, yes. Disabled, no. To me, he was just the quirky, bright little boy I adored, and labelling him as autistic felt like a stigma. To me, it felt like the world expected everybody to fit into a little box called “normal,” and that anybody who didn’t fit into that little box would get a label slapped on them, identifying them as “not normal.” I resented that feeling. I just wanted the world to accept my boy for who he was.
But at the same time, I had a burning need to know.
I started reading extensively, but the more I read, the more confused I became. I would read one description of autism, and it would fit my son to a T, and then I would read another description that didn’t fit him at all. Of course, part of the reason for my confusion was the fact that autism is a spectrum, and every autistic kid is different. But another part of the reason was because he didn’t seem to have any of the major “red flags” for autism.
What I didn’t understand at the time was that the “red flag” characteristics of autism are differences of degree, not black and white absolutes.
These are a few of the common characteristics on those lists:
- Absent or delayed speech
- Lack of communicative gestures (pointing, showing, reaching, waving)
- Lack of eye contact
I didn’t see those red flags in my son. His speech development seemed to be on track, and his pronunciation was ahead of his peers; he pointed at things and would reach to get picked up; and he would make eye contact. (Only later did I learn that although he spoke, used gestures, and made eye contact, he didn’t do those things as much as a neurotypical kid. He spoke, but he only communicated to get his basic needs met, and the gestures for showing and waving were completely absent.)
Hubby and I both filled out the online Modified Checklist for Autism in Toddlers (M-CHAT), independently so we wouldn’t influence each other’s answers. We both had the same result: “Low risk for autism.”
As time went on, I couldn’t stop reading and wondering, and by April I felt like we should seek a professional opinion. Our first stop was our family doctor. Hubby and I went in armed with a copy of Does My Child Have Autism and a list of our concerns. As it turned out, we didn’t need any ammo. Our parental concern was enough to get a referral to a pediatrician who specializes in autism. Bonus points to our family doctor.
We had to wait a couple of months to get in to see the pediatrician. In the meantime, Kiddo had turned three.
The pediatrician spent a couple of hours with us, chatting and asking us questions while she observed our son. In the end she said that she didn’t see enough red flags to be convinced he was on the spectrum, but she did see enough to warrant further investigation, so she referred him for an autism assessment.
The wait list was six months long. In preparation for the assessment, we were required to take him for a speech assessment with a speech language pathologist (SLP). I was annoyed. My son’s speech was just fine. A speech assessment was just a waste of time, I thought. It wasn’t.
The SLP was wonderful. She evaluated my son over three separate visits, two in a clinical setting and one at StrongStart (a BC early learning program Kiddo attends). What I immediately realized, and kicked myself for not realizing beforehand, was that she wasn’t just evaluating his speech, she was evaluating his communication, including facial expressions, gestures, and eye contact.
She confirmed my assessment that his speech was on track, but she said his communication skills were severely delayed. He was incapable of participating in a conversation, he didn’t use many gestures, and while he did have eye contact and point at objects, he didn’t do those things nearly as much as he should. The SLP, who had considerable experience with autistic kids, said that while she wasn’t qualified to give a diagnosis, she strongly suspected he was on the spectrum and that he would probably get a diagnosis of Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS).
That sent me down the PDD-NOS research rabbit hole. It’s basically a catch-all diagnosis for kids who are on the autism spectrum but don’t meet enough of the diagnostic criteria for autism or Asperger’s.
From that point on I no longer worried whether Kiddo was on the spectrum or not because it seemed fairly certain he was. Instead, I started worrying that he wasn’t on the spectrum enough and wouldn’t get diagnosed as being on the spectrum. In BC, kids with an autism diagnosis get $22,000 a year of funding for intervention until they’re six, and after that they get $6,000 a year. It’s a sweet deal.
Although we wouldn’t get our autism funding for intervention until after we had an official diagnosis, our local Children’s Association, which offers services for kids with special needs, was there to help right away. We started seeing an occupational therapist and a support worker. The wait for Kiddo’s autism assessment seemed to be endless, but the team at the Children’s Association helped make it more bearable. I knew how critical early intervention would be, and our occupational therapist at the Children’s Association became the first member of our intervention team. I also started attending the local Autism Support Group for parents.
Finally the day came, six months after the pediatrician had given us the referral. It was by far the most anticipated day of my life since my son’s birth.
The assessment took a couple of hours. First my husband and I met with a pediatrician and answered a bazillion questions about our son while he was in another room with a psychologist getting a cognitive evaluation. Then the pediatrician played with him for the better part of an hour while we watched. It seemed like simple playtime to Kiddo, but my husband and I could clearly see the various behaviors she was testing him on with each play scenario. Afterwards the pediatrician and psychologist had a short meeting, and then they called my husband and me into the office for the diagnosis.
The official diagnosis was Autism Spectrum Disorder (ASD).
I was relieved that he had been diagnosed as being on the spectrum because it meant he would get funding for intervention, but I was thoroughly annoyed with the ASD diagnosis. I hadn’t expected them to use the newly revised diagnostic guide (DSM-5) that lumps all forms of autism under a single label rather than differentiating between autism, Asperger’s, PDD-NOS, etc. I thought that change wouldn’t take effect until well into the new year, but I was wrong. I asked the doctors what his diagnosis would have been under the old guide (DSM-IV), and that was when I got a surprise: autism.
Not PDD-NOS as I had expected, but full-blown autism.
Despite the surprise that Kiddo’s autism was more severe than we had suspected, my initial response to the diagnosis was relief. After a full year of wondering, we finally had a definitive answer.
The next few weeks were a whirlwind of paperwork, phone calls, and appointments as we lined up Kiddo’s autism funding and intervention team. (I’ll leave the story of assembling our intervention team for another long post.) I rode an emotional roller coaster during those first few weeks, from the relief of diagnosis, to the lows of worrying about his future, to the stress of trying to find therapists in the middle of the (school) year while time ticked by during this precious and critical time window of opportunity early intervention.
Fast-forward to today. Kiddo has been getting intervention for a year and a half now, and after some initial false starts, we have found the right-for-us team of professionals, consisting of an occupational therapist, music therapist, behavior interventionist, and speech language pathologist. The difference between Kiddo back then and Kiddo now is astonishing. He has come so far.
We recently went to visit my mom, and while we were there we went to a playground beside the local preschool. It was a Saturday, and the preschool teacher was there doing some work, so she gave us a tour and we spent a little bit of time with her. After I took Kiddo back out to the playground, my mom continued chatting with the her and told her that Kiddo is autistic. The preschool teacher, who has decades of experience, said she can usually identify autistic kids almost immediately, but she hadn’t seen any indication of it from our son.
Now, I’m not saying that Kiddo has overcome all of his challenges. He hasn’t, and there are new challenges yet to come. But he has come such a long way. And for that, I credit his awesome team of therapists, the government of BC for providing the funding to pay for intervention, our family and friends for their support, and my husband and me for our hard work.
But most of all, I credit my son because he has worked the hardest of all of us. He is autistic, and he is awesome.