On the Spectrum:
Life with a Child with Autism
Every human on this planet faces an invisible, daily battle to heal their wounds and live their lives to their best ability, that most of us know nothing about. Every action, or inaction we choose has an impact on ourselves, and by extension everything else in existence. It is our duty as a self-aware species to take the time to learn how we can be of best service to ourselves, others, and this planet.
An estimated one in eighty children are diagnosed with an autism spectrum disorder worldwide, each year. This number is on the rise due to a number of factors varying from increased awareness, to improved diagnostic assessments and reporting. Considering the number of people living with, or who are touched by autism in some way, the amount of misinformation on autism is astonishing. It is long overdue that we end the epidemic of incorrect data, phony studies, and understand autism for what it really is at this point in time: a simple difference in neural makeup with no underlying, concrete cause.
Here to help us clarify what it is really like to care for a loved one with autism is my dear friend, Catherine Leroux.
1. What is one of your favorite memories with Alex?
Alex was always a happy baby and would laugh very easily. I have lots of memories of running around the house with him laughing.
2. How old is Alex now, and how old was he when he was diagnosed with Autism Spectrum Disorder?
We received a tentative diagnosis when he was 15 months old and 2 official autism diagnosis when he was 2 and 2 ½. The first signs that he was different from the other toddlers started to appear around 1.
3. What were some of the first indicators to you that Alex may need to be assessed for autism spectrum disorder?
At first, we were puzzled by the fact that he didn’t speak or imitate anything. His dad was speaking English to him and I was speaking French to him so we thought maybe it was confusing but then family members started to notice that he was different. Until about 9 months, he was meeting all his milestones and developing perfectly normally. The only thing he wasn’t doing was communicating. He loved repetitions, music, cartoons, and action/reaction toys and he was very ‘busy’ and happy but a little bit in his bubble. So the first person we consulted was a neuro-psychologist, to assess if his problem was speech-related but he was too young to receive a formal diagnosis so we had to ‘wait and see’.
4. What are some of the more challenging times you have faced while caring for Alex?
When Alex was 4, life was pretty challenging. His needs were ‘evolving’, meaning he knew what he wanted, but couldn’t express them. To this day, Alex is completely non-verbal and communicates in a very rudimentary way. He started screaming a lot, crying a lot, throwing tantrums that could last several hours, and being overall pretty impatient and unhappy. I had just given birth to his sister at the time and caring for him with a newborn was rather difficult. He started pre-kindergarten at that time but he couldn’t go all day since he was very disruptive to the class. He would go for 1 hour and I would have to go pick him up. We would try to increase his attendance bit by bit but it was very difficult. He had a favorite video he would watch on the TV at home and once we realized that he could have that with him when he went to school (on an iPod), life changed for him. He was much calmer and tolerated a lot of things that were almost impossible before (going to the doctor, the dentist, shopping, etc.)
5. What do you find most difficult about having a child with autism?
At first, it was a lack of connection. He wouldn’t make eye contact and since he was my first child, I was really looking forward to this loving relationship with my son, but things weren’t what I expected. That was really difficult. I had to mourn the child I thought I would have and learn to accept the child I had. I cried a lot… Now, I would say the most challenging part is dealing with change. He was recently diagnosed with epilepsy (1 person in 4 with autism suffers from epilepsy) and puberty brought on a whole different set of issues. The lack of understanding of social conventions can be challenging.
6. What were some of the factors that lead you to the decision to put Alex in the care of a group home?
When Alex was 7, my mental health was extremely poor and our social worker suggested that we use the service of our local respite home on a part-time basis to give me a break. At first, I said categorically no. There was no way I would do that. Then I really gave it consideration and accepted to send him there 1 night a week. I was a basket case while he was there and constantly calling to check on him but I got used to it. It gave me the break I desperately needed. I was lucky enough to have a spot in the shared-parenting program where your child stays at the group home one week and then comes home for one week. Our lives changed. It allowed me to sleep, to take care of my daughter, and to be a better parent to Alex when he was home. I was rested, patient, and happy to see him. We lived in Cornwall at the time and I had to move to Ottawa for work in 2016, so Alex now lives at the group home full-time until we’ll be able to move him to Ottawa. It is still difficult to think that my child lives in a group home. I still cry about it but he is happy there and that’s all that matters. They love him, they understand his needs and they give him the care that he needs.
7. How do you navigate the health care system for a child with autism? What are some of the challenges you have faced while dealing with the health care system?
When Alex was born, we lived in Quebec, and getting a diagnosis of autism there takes a very long time. It can take up to two years because of the waitlists. That’s why we went the private route to get Alex’s diagnosis and paid out of pocket. We moved to Ontario when Alex was four years old and services were much better. It can be quite challenging, no matter where you are, to get any kind of service for a child with disabilities. We were lucky to have the support of great parents from Autism Ontario to guide us in getting the services we needed (occupational therapy, speech therapy, social work for support, etc.). You really have to be an advocate for your child and fight for what you think is best. There are a lot of therapies out there that are not science-based and because parents are so determined/desperate to help their child, to improve their lives, it can be easy to get pulled into those traps. You have to do your research and make sure these therapies are based on science.
8. What kinds of stigmas have you encountered about having a child with autism?
I have to say we have been pretty lucky when it comes to being stigmatized. I think it was harder when Alex was a toddler because we felt people were judgmental. Now, I think we get more empathy from people due to greater awareness and understanding.
9. There is a great deal of misinformation about autism, both in what “causes” autism and potential “treatments” for autism. How does that make you feel?
That’s a topic that can get me riled up :P
I am a medical editor and everything I believe in has to be science-based. I try to educate people and parents on what scientific research has discovered about autism and all the myths related to autism and vaccination.
10. What are some of the resources you have found helpful over the years?
For us, CHEO and our local Autism Ontario have been lifesaving. We met great people who are passionate about helping and some of the parents have been in our lives for several years. It’s a great support network.
11. If you could offer guidance, or advice to someone who recently had a loved one diagnosed with autism, what would you say?
I would advise them to surround themselves with a great support network. Isolation is very common, and depression and despair are real issues. Relationships rarely survive having a child with autism and families often keep their distance. We were lucky to have my parents who helped then and still help today and Alex just adores them. Service providers come and go but real friends and supportive family members are the keys to navigating the system and finding the help that you and your child need.
12. What do you wish more people knew about Autism Spectrum Disorder and caring for a loved one with Autism Spectrum Disorder?
Every person with autism is different. They all have different abilities and all they want is the support of their parents/family members. It can be exhausting to care for someone with autism and compassion can go a long way.
It is remarkable what having a sense of community, and being surrounded by people who truly understand and care about you can do for your mental health when facing life’s challenges, or when life doesn’t live up to our expectations, especially when it comes to being a parent of a child with unique abilities. Having people around you who “get it” can make all the difference.
It is so true, the “cure” for autism, and its effects on loved ones, is awareness.
I have said it before, and I’ll say it again, compassion is the result of education and understanding.
An Interview by jcArt
First Published 1/11/2020