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  • Alison Wilson

A new diagnosis

Hello everyone :)

In mid January, James received a new diagnosis - ASD (autism spectrum disorder). We've suspected this for quite some time and pursued the testing. We've had behavioural challenges with James that for awhile we (along with our therapists) believed were caused by James' significant speech delay. It makes logical sense why you'd have a fair amount of frustration when you have trouble communicating with others, right? Well, we've had help with the team at Holland Bloorview for almost 2 years now with getting James' speech generating device (his "talker" we call it). That has helped tremendously with lots and lots of practice and repetition at home, school and in therapy. But even with the talker, we've had significant behavioural trouble. At first we thought it was mainly at home, but when we probed further, we discovered there were behavioural concerns at school too. Other things that alerted us to a possible ASD diagnosis was during the summer, James became very interested on watching Olympic swimming to the point where months later, and even now - that's what James watches daily (he's now added NBA dunk highlights to his favourite list too!). Having very specific interests is characteristic of those on the spectrum, so this made us wonder more about the possibility. He loves tv more than anything (and significantly more than neurotypical kids). He will frequently ask to watch tv as soon as the day starts and will get quite upset when the answer is no. James also has some sensory sensitivities often seen in those with autism as well. He always wants his socks off and gets very irritated with dressing - certain types of fabric really annoy him and he really doesn't like coats! He has a love/hate relationship with music. There's really no in between - he either really likes it or wants the music off immediately (especially when Shae is singing Disney songs!). James can go from 0 to 100 which has made daily life rather challenging because you never know when or what will throw him off. He has some social and play skills that are behind developmentally & at 5.5 years old, James still is not potty trained (unfortunately he has no interest yet).

So there's some detail that helps to show how the ASD diagnosis came about. Those on the spectrum are sometimes non-verbal, so James' autism diagnosis could potentially explain that too. When James is 7 or 8, it is likely he'll have a 3rd (and hopefully final!) diagnosis - global developmental delay.

Mike and I are big believers in getting these diagnoses to help get more supports for James. He is not defined by these labels; they are a part of him and how he understands and interacts with the world. It's been helpful as parents to know about the autism diagnosis as we care for him. A daily struggle for James is the transition from tv time after school to dinner time. He will often have a meltdown and take a significant amount of time to calm his body (no matter how much of a transition/warning you give him). Appreciating neurodiversity and how James' brain processes things differently, has helped me have compassion for him in these tense times in our house. He's not trying to give us a hard time; he's having a hard time. Figuring out what sensory input he needs has helped (music on/off, weighted blanket, lots of hugs to name a few).

It seemed fitting to share James' autism diagnosis on Autism Acceptance Day - April 2. It can feel like an overwhelming experience as a parent to take on another diagnosis; find our way in a whole different community, supports, therapies, funding, the list goes on. We are thankful though for the timing of this diagnosis as we have transition meetings set up to prepare James to go to our home school in September. His autism diagnosis in addition to cerebral palsy, helps us advocate for more supports.

Often you'll see colourful puzzle pieces representing ASD as well as the infinity symbol. We had to get matching shirts for our first official Autism Acceptance Day.


Here's an assortment of pictures and video highlights of the last few months:

Celebrating Donna's 60th birthday

Pink Shirt Day supporting anti-bullying

Said goodbye to our fav OT of 3+ years, Kali

We recently started a new therapy on Saturdays called Therabounce which uses a trampoline. James loves it! Next weekend, James starts a spring session of horse back riding.

stander, cerebral palsy
James' stander at school getting fitted to mount his talker

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