Autism isn’t always diagnosed in the preschool years. But if problems become evident after children are in the school system, it can be difficult to get a diagnosis. Here is one parent’s story of the difficulties that can come from misunderstanding the reason for a child’s struggles….
His struggle began in earnest that first day of Kindergarten, but I am his mother. I know it started far earlier. From the start he didn’t sleep through the night. He needed comfort, and light, and music to soothe, but he needed the same each night, and was inconsolable if his schedule changed. We adapted, he and I; I made sure we were home at the same time, ate at the same time, bathed at the same time, and walked the floors at night at the same time. At 14 months his home daycare lady said “he may be developmentally delayed; he needs to be evaluated by the Child Development clinic”. We went to the pediatrician and got our referral. We went to all of the appointments, my boy and I. And we found out he was normal. We followed up again when he was having difficulty in his preschool daycare – he wasn’t picking up speech as quickly as he should, and he didn’t interact with other children very often. He liked to be by himself, or with the little girls who doted on him. The words “Autism Spectrum” were uttered; I didn’t give it much consideration. After all, he played with the girls, and he only flapped his hands once in a while. He was potty-trained and had transitioned to his toddler-bed with ease. And there were some words. Besides, they couldn’t do much about it that early, and by the time they could they would find that he was perfectly normal, I was sure.
He entered Kindergarten; a time of transition and change. From the outset things were “different”. He couldn’t sit still. “Carpet” time became a daily struggle with his teacher. It had to be green; he would protest loudly if someone else had “his” green carpet. The price of peace was a trade, and placating the child forced to give up this innocuous bit of floor-covering. He couldn’t sit still; he would tap, rock, wiggle, flap. He would migrate off of his carpet to invade the personal space of the child next to him, or in front, or behind him. He would chatter. He would hum. And eventually he would get up and wander. His carpet migrated from the rear to the middle to the front to right beside his teacher. Even then he couldn’t recount what he had learned that day, mere minutes after he learned it.
Music was another challenge. He couldn’t touch the instruments he wanted to. He couldn’t sit still. He couldn’t kick the risers. He couldn’t chat and make faces with the other children. He would fidget and rock and chatter, then melt down completely. He would be sent to the hallway, where he couldn’t stay still. He would wander away and visit other classrooms, making funny noises and faces that to him are humorous but to other children are curious and concerning. It became apparent this was a safety issue for him when the Kindergarten teacher found him wandering the hallway after such an ejection from class; she would come and escort him to the office each time after that he couldn’t make it through.
Daycare had its own challenges. He would melt down. They thought he needed a nap; he was opposed, and sometimes violently. He couldn’t follow the rules consistently. He would forget things. He developed his own rules and would become agitated when he was not permitted to follow them. He couldn’t cope with children who didn’t want to play with him, or who violated his ruleset. It didn’t really matter except for those few times, as he mostly preferred to play by himself. He would become insistent that he wanted to go home and the staff needed to call his Mom. If they said No he would cry, and tantrum, and scream. He could be distracted from his mission to leave, but only occasionally. And in order to keep the peace and keep him in daycare he frequently got his way. The Daycare Director was incensed. “He’s doing this on purpose. He knows exactly what is right and what is wrong.” She warned over and over that he would not be welcome much longer.
A meeting was scheduled after a Music class where his behaviour went “supernova”. At the Kindergarten teacher’s behest we invited the Daycare Director; if we could involve her in the process perhaps we could postpone my boy’s ejection from daycare and my resulting descent onto Welfare. Everyone attended; the school Principal, Resource, Kindergarten and Music teachers, Daycare Director, and me. We agreed there were issues. ADHD and ODD were possibilities. We agreed to do what we could. My next step was a Pediatrician’s appointment. After that the school would evaluate whether or not to seek support through the school division.
My boy’s days continued as they had. He struggled to adapt and cope. The Pediatrician had me fill out a Snap IV form, and pass them on to school and daycare as well. The returned forms told him there were issues; I needed to see a private Psychologist for a proper diagnosis. After a brief meeting with the Psychologist I was told I would need $1800, and to wait until he was 6. “Perhaps we can spread it around so your insurance covers more of it.” I couldn’t fathom where I, a single parent with no Child Support and a tenuous IT consulting position, would gather together the funds that insurance wouldn’t pay. I couldn’t fathom how people with less fortunate circumstances got that kind of money. I was in a holding pattern until September anyway; the Psychologist couldn’t schedule another appointment until after the summer.
A particularly large meltdown at daycare just before the end of the school year had me calling the pediatrician; when he finally called back two days later he told me that there was nothing he could do. “If he’s hurting himself you can bring him to Children’s Psychiatric at the Health Sciences Centre. Beyond that I can’t help you.” He wasn’t hurting himself. And he didn’t need psychiatric intervention. He needed assistance, and he needed understanding. We both did. And I discovered that we were completely alone.
The day my beautiful boy graduated from Kindergarten I cried. I knew what a huge struggle it had been for him; how hard he had worked, and what a huge achievement it actually was for him. For the other children it was a transition, and sometimes a difficult one. For my child it was ascending Everest. And the summit was yet to come.