This week it will be three years since my son’s formal Autism diagnosis. At the time he was 3. Our journey with special needs started the day he was born. Arriving 16 weeks early at 24 weeks, my guy was almost pre-destined to be Autistic, as premature babies are five times more likely to suffer from the disorder.
For a very long time I didn’t believe that my son was Autistic but pursued the diagnosis in order for him to have a classification in the educational system. We knew that his chances of getting an Educational Assistant were virtually nil if we didn’t have some sort of paper work that professionally laid out his issues.
I attributed his ‘uniqueness’ to side-effects from being born early. Premature babies are often at risk for having sensory issues because they have been ‘handled’ long before their system was ready. Early on my son had severe eating problems, a heightened response to unusual noises and a love for anything that spinned. We fought for many years to teach him to eat foods that weren’t completely smooth. He still has breakdowns when he is somewhere when a machine goes on that he wasn’t prepared for(hand dryers in the washroom) and could sit forever watching circular objects spin on the floor. All of these can be classified as Sensory Processing Disorder.
He is not sociable, but I blame myself for that. When he was little I tried to get him to playgroups but my fear of RSV in the Winter prevented us from going anywhere for the first 6 months that he out of the hospital. After he learned how to walk he was too busy to play with the other kids. He just ran and ran and ran. He also wasn’t interested in the same things they were – and still isn’t. We tried to work on this in occupational therapy, but he had his own agenda.
He is developmentally delayed. Again this is part in parcel of being born extremely prematurely. These little ones don’t often meet their milestones until months after full term babies. This wasn’t a problem for us because really – he has his whole life to walk doesn’t he?
So when my doctor suggested that he be tested for Autism, I cried and then told him that he didn’t know what he was talking about. My son wasn’t Autistic, he had 3 issues that could mimic the characteristics of Autism because he was premature. It wasn’t until a therapist explained to me that more doors would open for us in terms of support, therapy and education that we agreed to have him tested and it was the best decision we made.
Once he was diagnosed we started to work with a team that could help us with issues that we were having. The diagnosis also gave us the ability to anticipate learning challenges that he was going to have and work on a plan to teach things in a way that he was going to benefit from the most.
It also changed our mindset. I really did believe that he was intentionally not listening or not doing what we asked to be difficult. Now I know that even though he knows he’s not allowed to do something, there is a stronger force working inside him that makes him do it anyway. His impulse control is very weak, which is something that we work on every day.
Having a ‘label’ also gave us something to tell others. Because he looks like a regular little boy, can walk, talk, eat and breathe, I often get judged when he is being difficult while we are out. There was a time that we couldn’t pass the CD/DVD section of a store without him having a complete and total mental breakdown. From the outside it looks like I have a spoiled brat child that is lashing out because he’s not getting his own way, when in reality CD’s and DVD’s are his ‘thing’. Every Autistic child has a thing and this is ours. Rather than go into detail about what is happening I simply say he is Autistic when I’m getting the look of death from other shoppers and it seems to help them understand what is happening.
Knowing that he’s autistic has also allowed his teachers to be better prepared. We have done a lot of reading on the disorder and are now able to point out what characteristics suit him. Together with the school we have been able to come up with a plan that sets him up for success like the use of a special chair for circle time, a weighted animal to provide deep pressure touch and visual reminders that are velcroed to his desk.
We have a long way to go, but I believe that his early diagnosis prepared us to help him learn more efficiently. Because we pay more attention to triggers and also what works, I think that our preparedness will benefit him in the future.
With that being said, he is constantly throwing new challenges at us to keep us on our feet, but that is the case with children who are born without any issues. Parenthood on it’s own can be tough, navigating it in this special world has been lot of hits and misses.
While there is no cure for autism, the disorder is certainly treatable. Early intervention is crucial in securing the best possible outcome for children with an autism diagnosis.
If you think that your child may be Autistic please talk to your doctor about being referred to a specialist in your area for a more in-depth check.
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