It's one of those life-changing moments that can cause a range of emotions and reactions when parents initially learn their child has been diagnosed with autism. While each parent can take the path toward acceptance through different stages and paces, the diagnosis can begin a journey that abounds with many joyous times and achievements.
Here are the experiences of three parents who learned of their child's diagnosis of autism and how they moved forward.
For William Reid and his wife, Milagros, the journey started when a speech therapist came to their home to work with their older son William, who was 3 at the time, and when their younger son Ethan was 2. While working with William, the therapist happened to notice Ethan exhibiting behaviors (such as consistent rocking on chair, seat, couch) that aligned with autism. That is what initiated the therapist to provide them with the pamphlet.
"It completely caught us off guard," said William, who is Head of Digital Sales for TD Auto Finance (TDAF) and resides in Mount Laurel, New Jersey. We had rarely heard of autism. Our first reaction was more fear, anger, shock and being upset. Looking back, it (the therapist raising the possibility) turns out it was one of the best things anyone could have done for us. But we were just shocked at that time."
The Reids began the testing process for Ethan three months later, and after some time, their son was officially diagnosed with autism. Even before the official diagnosis, they started to seek out the right school for him and made sure he had therapy. They had one goal: to make sure that Ethan had everything possible to allow him to fulfill his potential in life.
The red binder
After two years of tests, meeting, appointments and ruling out other causes, Jennifer Popkey received the information that she and her family had been seeking about her then three-old-year old son, "T."
"The developmental pediatrician handed me this big red binder and gave me a diagnosis," said Jennifer, a Talent Partner for TD Bank's Diversity Sourcing team in Toronto. "I appreciated the label because it could give us direction. I wanted to know, what is the next step? T is still this awesome kid. He approaches the world differently. What could we do to help him shine?"
The diagnosis meant a lot of adjustments for both T and his family. They quickly started to look for different ways to help him succeed. In those early years, T went to speech and occupational therapies and developed social and stress management strategies at school to complement his strong academic skills.
"I often wondered how T's life would be growing up," Jennifer said. " A few months after his diagnosis, while still adjusting to my new daily life, I joined a local 5K run. I met a wonderful mom who introduced me to her 15-yr-old chatty son who had the exact same autism spectrum diagnosis as my 3 ½ year old. Her ease, his animated conversation, and their openness meant the world to me. It was an incredible peek into what was possible- a clear and wonderful image to look forward to instead of the disconcerting fog of not knowing."
Advocacy is critical
Keivan Stassun is a professor for Astrophysics at Vanderbilt University in Nashville and runs The First Center for Autism and Innovation, an academic research center at the university. The center's mission is to engineer assistive technologies and work with businesses, companies, and business leaders to develop pipelines to employment for autistic adults.
So, you may be wondering: how does an astrophysicist end up running an Autism and Innovation center? It started 13 years ago when Keivan's son was first diagnosed with autism.
"Very honestly for my wife and me, there was a combination of worry and relief as we now had a name to put on the behaviors that we had been observing," Keivan said. "But it also opened the floodgates in terms of emotion. Frankly, we wondered if we had done something wrong, because we didn’t know any better at the time about the unique abilities that accompany the struggles in autism. So, we shifted into what you may call ‘positive solutions’ mode. We love our son. We're going support him in every way that we can. I have to say, our experience was very good in the sense that there's now so much known and there's so many good supports in place for autistic kids, and we are working on building real pathways to meaningful employment for them as they become adults. "
Major advances in education and therapeutic supports for autistic students, along with education, advocacy, and celebration by autistic adults around neurodiversity, have greatly improved the personal and societal outlook for people with autism in recent years. However, even with supports and leaders to look up to, parents need to be strong advocates to help make sure their child can take full advantage of the opportunities that are available.
"These systems of support don't activate themselves," Keivan said. "My wife and I found that we had to beat the drum consistently. You have to advocate, and you have to insist even if it may be uncomfortable. We want to be friendly; we want to respect teachers in the school and give them their space to do their job. But you really do have to insist that the system works the way that it is supposed to work."
The struggles and successes
William notes his family continues to see his now 14-year-old son, who is non-verbal, make progress towards fully developing his potential with a combination of education, therapeutics, and other supports. The family focuses on Ethan's many strengths.
"Ethan taught himself to swim at six years old," William said. "He's the strongest kid I've ever seen. His balance is amazing. So, our advice would just be to really focus on the positives. We want him to be the happiest he possibly can be and to develop as an adult to the highest extent."
Since Ethan's diagnosis, Reid has spoken several times at events both within TD and in the greater community, sharing the story of the family's journey with Ethan and how they've learned and grown together.
"There's nothing better than folks telling you that they were inspired by your story and your journey," William said.
Jennifer's 17-year-old son, T, has exceled in his studies and has developed a particular strength with computers that his mother hopes will turn into a career.
"My role is to help him shine," she said. "We don't have to follow a traditional model. We have different ways that we can assess and support people so that they can reveal their potential and blow our expectations out of the water."
Keivan's son who is in 10th grade is performing "very well academically" and believes he will be able to go to college.
All three parents agree it is a journey that requires extraordinary efforts, but the rewards are something that can't be measured.
"I would say to any parent who is at all reticent about seeking a diagnosis, get that diagnosis," Keivan said. "It is the first key to unlocking resources and opportunities throughout your child's future."