You’re A Parent and You Just Received An Autism Diagnosis… Now What?
I’ll never forget the day we received our first autism diagnosis…
My heart sank and I immediately questioned everything I had done during pregnancy, what I ate while I was breastfeeding and wondered if I had done something to cause it. I spent hours upon hours Googling “causes of autism” and came across a plethora of information that overwhelmed me even more.
After the initial shock, I was full of sadness, fear and extreme worry. Worried whether I would ever hear the word “Mama”, worried about Leo’s future and whether he would ever become independent and overall, just sad about saying goodbye to the life I had envisioned for our family.
A few days later, after I had processed a number of emotions, I picked myself up and started to do a lot of research about next steps, therapy options and started making phone calls. I was on maternity leave with Lorenzo at this time, so nap times were consumed with conference calls with various service providers and endless hours on the internet in the evenings to learn about what to do next. Everyone I spoke to was so kind and understanding - I cried a lot to anyone/everyone I spoke to because I was so overwhelmed. I wanted to do everything as quickly as possible and I felt like the clock was ticking, as I had studied about neuroplasticity in university and understood the intricacies of brain development before the age of 6.
I came across a wonderful organization named Kerry’s Place Autism Services and was matched up with a coordinator and I’ll never forget her. Her name was Dixie and she was full of knowledge about next steps, what I needed to do, who I needed to call, the waitlists I needed to be on, etc. She was especially comforting and kept saying, “You’ve got this!”, “You already know so much!”… Those words empowered me and the phone calls continued. I registered for workshops and courses that were offered through Kerry’s Place where I learned about the Children’s Treatment Network and Kinark Autism Services that helped me navigate through next steps and provided a list of service providers for therapy. I also registered for the Ontario Autism Program (OAP) and Special Services at Home and joined a variety of Canadian Facebook groups, hoping to learn more from other parents. I filled out all the forms for the Disability Tax Credit and registered for the Access2 Card through Easter Seals and applied for their Incontinence Supplies (diaper) Grant funding. Leo wasn’t potty trained and it didn’t look like he would be anytime soon.
I contacted various speech and occupational therapists and started touring clinics to learn more about ABA therapy. I recognize ABA is a controversial topic, but I didn’t want to leave any stones unturned. We registered Leo for music therapy at home and had a wonderful experience with Tamara’s Piano and Music Therapy Services. Leo LOVED music (he still does) and we started to see changes in communication through music which was heartwarming. He was communicating in his own way and we loved it.
After deliberating and touring a variety of clinics, we settled on Children’s Support Solutions - Life Works (Morneau Shepell at the time) and started ABA, speech and occupational therapies. The cost of these services was astronomical and we had heard about the OAP waitlists and didn’t want to wait for funding to start therapy. Again, I felt like we were racing against the clock and I wanted to do everything we possibly could before the age of 6. As a result, we made financial decisions to make ends meet and suddenly, our lives were consumed with various therapy appointments, conference calls/emails for goal setting with various therapists and my husband and I started binge watching YouTube videos to learn how to implement ABA, speech and occupational therapy strategies in the home.
Looking back, I felt like I was functioning on autopilot in many ways, wondering if I was enjoying “the journey of motherhood” anymore. I seemed to obsess about new therapies that emerged, diets and supplements that promised behavioural/cognitive changes. My husband was always so supportive and on board with anything and everything I suggested. He too was processing Leo’s diagnosis in his own way - taking my lead in many ways was comforting for him. He seemed to think I had it all figured out (I truly didn’t, but boy did I fake it).
At one point, we worked with a Naturopath and did a number of tests (organic acid test, IgG, IgA) to rule out food sensitivities that were potentially causing inflammation and exacerbating Leo’s autism. Before we knew it, I was working with a Dietician, was throwing everything out in our pantry and we were converting to an all natural, gluten-free, sugar and dairy-free diet. This was extremely challenging and it didn’t take long before I was miserable. Aside from the enormous grocery bills, we were also exploring things like probiotics, Omega 3 fish oils, magnesium (for sleep) and other supplements. After 9 months, I felt burnt out because Leo was still struggling with sensory sensitivities at meal time and I wasn’t sure if my approach with his diet was helping or hindering his development. So, we decided to revert to a regular diet (with gluten and dairy) and did our best to avoid sugar at all costs (easier said than done since it’s hidden in so many foods!). I’ll blog about our meal time challenges another day….
In addition to all this, we started to see signs of autism in Lorenzo (in different ways). We raised our concerns to his pediatrician who was very supportive in getting the ball rolling with a speech assessment and subsequently, a developmental assessment for autism. Before we knew it, we had a second autism diagnosis for Lorenzo and this time we were numb. We couldn't believe we were going down this path again, but felt more confident about what we needed to do. We already had therapists we loved and trusted and had become experts in implementing a variety of strategies at home (most of which we learned from workshops, YouTube and trial and error at home with Leo).
Despite the rollercoaster of emotions, our journey continues and we are so proud of how far the boys have come. We truly believe in a spectrum of possibilities and will continue to support them in any way we can.
All this to say, everyone processes an autism diagnosis differently. I’m hoping some of the links I’ve provided will assist you as you navigate through this overwhelming journey. Please note, the links are geared for parents who are from Ontario, Canada and I’m unsure if the service providers have a presence in other provinces.
Regardless, my advice to a new parent who has just received a diagnosis would be:
Take time to process your feelings - Whether it’s sadness, grief, anger, or even relief. A diagnosis is the beginning of a journey to understanding your child and their unique way of communicating/learning/navigating the world around them.
Don’t burn yourself out by doing anything and everything that’s out there in terms of therapy, diets, supplements, etc.. Start with one or two things, give them a try and see if you’re seeing gains and then re-evaluate and pivot, if needed.
Don’t compare your journey to others and don’t compare your child’s progress to other children on the spectrum. This can be detrimental to your mental health and it can lead to feelings of despair.
Celebrate everything your child does and don’t focus on what they can’t do (yet). They are unique and beautiful in their own way and they will amaze you each and every day.
Don’t hide your child’s diagnosis in hopes that it will break the stigma. You are and always will be your child’s greatest advocate. Sharing your child’s diagnosis with their school will help them receive the supports required to help them thrive and sharing their diagnosis with friends and family will help with acceptance, education and understanding.
Learn from others who are on the spectrum - I have been really paying attention to the autism community and what they’re saying as adults.
Be kind to yourself - You’re human and you will have good days and bad days. Reach out to friends and family members when you’re feeling overwhelmed and seek out professional help, if needed.
Embrace the journey and the people you will come across along the way. Be open to suggestions from others who may be further along in their journey and try not to take comments from others (which may seem ignorant at times) personally. Most of the time, people just need to be reminded to be kind and you can use these comments to create teachable moments, to raise autism awareness, acceptance and understanding.
If you’re interested in more content on our journey, you can follow me on Instagram @natalieabkariancimini and are welcome to send me a DM.
Lots of love,
Natalie Abkarian Cimini
“The world needs all kinds of minds.” - Temple Grandin
