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Opinion

Late to Walk

This article is part of a series of stories and op-eds issued by IPS on the occasion of this year’s World Autism Awareness Day

OTTAWA, Mar 29 2017 (IPS) - I have two children. A daughter who just turned six and a son who just turned three. My daughter was late to walk. My husband and I were pretty worried about why it was taking so long for her to stop ‘bum scooching’ — her preferred method of movement. I consulted Google on more than one occasion to see if other parents had children doing the same. I felt anxious when I read that 18 months was considered very late. She didn’t start until she was 22 months after a few months of physiotherapy.

My son followed in his sister’s footsteps, but being the second child, we were much more relaxed about his late motor development and repeatedly said, ‘he’ll get there.’ But by the time he was 22 months he wasn’t even close to taking his first steps. His pediatrician referred him to the same physiotherapist who helped accelerate our daughter’s walking. When my son was about to turn two, the physiotherapist, recommended that we get his name on the long waiting list to see a Developmental Pediatrician for a neurological exam because it could take between 6-9 months to get in. If there was an issue, we needed to find out sooner than later.

She also thought he was displaying some signs of Autism.

Autism? What did she mean? I didn’t understand.

He engaged with his peers and his family. He was cuddly and lovable. He reached out to be picked up or held. He made eye contact with us. He smiled when we smiled. He responded to his name and asked for things he wanted. He got upset if his sister was crying or if another child got hurt. He waved and was able to look at things we pointed to. He had a really good, clear command of language early on. He never regressed in any way.

Our seemingly normal child has ASD. His pediatrician doesn’t believe the diagnosis. We had a hard time accepting it ourselves, but it is what it is. It is up to us, as parents, to help guide our children and lead them into the world. The same goes for our son, so he can have a life just like anyone else. Our son is going to be okay.
When I researched the signs of Autism he didn’t display any of them. Except, from a very young age, he would move his arms when he was excited and happy. Like a little bird. We didn’t think anything of it, we thought it was adorable.

When I did the intake for the neurological assessment I mentioned the hand ‘flapping.’ I hadn’t realized it was a flag for Autism Spectrum Disorder (ASD). The wait didn’t take 6-9 months – he was in, in two months.

About a week before the assessment, our son finally took a few steps on his own; he was beginning to cruise. We were thrilled! Then it became time for my husband and I to take him to his assessment. The doctors observed his behaviour and his interactions with us, while he played on the floor. They asked us a lot of questions about my pregnancy and his short life. There was a bit of hand flapping during our meeting. It took about two hours and at the end of the meeting, they sent us away for half an hour. I had a sinking feeling in my stomach: they’re going to think he has Autism. My perfect boy was going to receive the label. I just knew it.

The doctors went over his results. They were pleased he was walking, so there was no issue neurologically, but they wanted to invite him back to be assessed for ASD because he was displaying a few signs. I told them we would do anything for him, but I was aware that the spectrum had broadened and that the medical community loves to label kids.

Five weeks later we returned to the hospital for his test. The week before he was to be seen he finally started to walk on his own. The test, in our minds, seemed skewed to give the doctors the results they wanted. They played with him and it seemed like he was engaging the way a toddler should. After they were done, they sent us away again — the way they did the first visit. When we returned they informed us that we had a very special boy who shared a loving and deep connection with both my husband and myself. They told us that after scoring his results he just made the cut off for being on the ‘spectrum.’

Our son had Autism.

To this day, I don’t know if I can describe how that felt.

After that day, I spent hours and hours researching Autism; trying to make sense of Autism Spectrum Disorder; trying to figure out where he fit on this spectrum. Like most people, when I heard the word Autism, I envisioned a non-verbal child who preferred to be alone, who was disengaged and super quirky.

This was not our son.

We hated that he had been given this label that would instantly cause people to think of ‘Rainman’ or the weird, eccentric kids we all grew up with who were never diagnosed. The ones who never had friends because they didn’t know how to socialize or have normal conversations. The kids who obsessed over things and sometimes rocked back and forth or hummed incessantly.

This was not our son.

It’s been almost a year since he was diagnosed. He attends pre-school and whilst there is a bit of a difference between him and his peers, he’s in it, wholeheartedly. He loves playing with his sister and having play dates. He loves people, his grandparents and dogs. He loves music and laughing and being goofy. He loves watching movies while cuddling on the couch. He could talk your ear off about all six Star Wars movies, Spiderman or diggers and dumpers. He’s picky about foods, but getting more adventurous. He is a toddler through and through, but more often than not, when he does something we wonder, is this a toddler thing to do or is this ASD?

The number of children being diagnosed with ASD continues to rise every day. If there is one thing I have learned in this whole process, it’s that children with Autism Spectrum Disorder need their parents to be their advocates. The spectrum seems so wide and so full of misinterpretation, it is a veritable challenge to navigate. Every child is a unique human being. Yet every child who is diagnosed with ASD falls into an undefineable spectrum and continues to be misunderstood because of the label.

Our seemingly normal child has ASD. His pediatrician doesn’t believe the diagnosis. We had a hard time accepting it ourselves, but it is what it is. It is up to us, as parents, to help guide our children and lead them into the world. The same goes for our son, so he can have a life just like anyone else. Our son is going to be okay. He will be given the tools he needs to make it in this world and my husband and I will be right beside him the entire way.

* The writer is a mother who chose not to disclose her real identity

 

 
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