Alexis Wilson suddenly awoke one night three years ago to her four-year-old son Emmett in her room, screaming, scratching his face and hitting his head against the wall.
He did not speak much aside from one sentence, the last words he would say before plunging into a deep — and so far irreversible — regression: “Mommy will help me.”
Now seven years old, Emmett has fewer developmental skills than he did when he was two and his mom is still searching for help.
Wilson has explored nearly every possible path, spending upwards of $300,000, seeing close to 100 doctors, therapists and other professionals, and taking on the role of full-time Emmett advocate. She even found herself searching “regression” on TikTok in the hopes of connecting with another family who has a similar experience.
Emmett has been diagnosed with autism, but it is an unusual presentation.
“You don’t get autism overnight,” one nurse told Wilson.
Emmett, who lives with his family in Thornhill, Ont., is now one of the more than 60,000 children in the province seeking services through the Ontario Autism Program. As of the end of 2023, there were about 14,000 children with access to core therapy through the program, but so many more are waiting along with Emmett.
Government support often lacking
The families of those children are vocal about their concerns with the program. They say it is slow—Emmett has been on the waitlist for more than 2 1/2 years—that it is not truly needs-based, that a lack of service providers means that even with money in hand, some families can’t find help and that there is almost no transparency.
Families are not told where they are on the waitlist and how long they might be waiting for access to funding for core therapy. Do they need to hang on just one more month and dig themselves a bit deeper in debt to privately pay for therapy, or should they be taking out a second mortgage because the wait will be years long, they wonder.
“I don’t understand how we can’t know,” Wilson says. “It’s like going to the butcher and pulling a number, and it’s blank.”
It has been difficult for Wilson — a teacher who has additional qualifications to work in special education and with children with autism — to navigate the system, let alone for parents who are not as familiar with what services might be available or whose first language is not English.
The Ontario Autism Program also offers workshops for parents, an entry to school program, early years programs and urgent response services, the government notes.
“In addition to the various programs available to children and youth on the autism spectrum, the government also funds services and supports for those with multiple and/or complex special needs,” reads a statement from the Ministry of Children, Community and Social Services.
But for many kids, including Emmett, that picture of support does not match their experience.
Emmett’s entry into the school program was supposed to be half-days, five days a week. He ended up receiving one hour of skill-building support here and there due to a lack of staff, Wilson said.
He has twice used urgent response services — meant to help with new or worsening high-risk behaviours such as violence or self-harm — but each response came about two months after Wilson reached out, she said.
Additional assistance is being sought out
Early-year programs for kids between one and four were not available to Emmett because he was too old when he was diagnosed.
Wilson has paid out of pocket for Emmett to do applied behaviour analysis, or ABA, a core therapy for children on the autism spectrum, but she cannot afford to keep it up at the moment. She and her husband are in debt and they have spent much of her parents’ and her in-laws’ savings helping Emmett.
He currently attends a private school for children with disabilities. It’s a wonderful place, Wilson says, with music therapy, a sensory gym, an accessible pool and a dark room with fibre optic lights and calming water sounds.
They use ABA principles in the classroom setting but also offer ABA therapy, occupational therapy and speech language therapy at an additional cost. Wilson is just waiting for Ontario Autism Program funding to come through so she can re-enrol him in those services.
In the meantime, Wilson is considering other avenues for help, including possible participation in a deep brain stimulation trial at SickKids Hospital.
“It’s ridiculous that we are at a point where we’re considering invasive brain surgery when we’re not even doing the amount of therapy that’s recommended,” she said.
Emmett had been more or less following a typical developmental path up until shortly before that one night. He had a few speech challenges and some sensory needs in his younger years, but an assessment at age 3 1/2 concluded he did not have autism.
Then, in the months leading up to the major episode, he was losing some speech skills and having more temper tantrums, and another assessment conducted just two weeks before that night concluded he did have autism.
After that episode, Emmett seemed tremendously different and another autism assessment found he had higher needs than before.
“I didn’t recognize my child,” Wilson says.
Mother turns to Yale School of Medicine
Previously he had been spelling his name and telling increasingly elaborate stories. Wilson has a video from the onset of the COVID-19 pandemic, in which Emmett confidently says he is going to invent a button that can turn off the virus.
Now at seven, he does not have toileting skills, hurts himself, runs away and has few words, which he uses unreliably. On a recent spring morning at their home — a good day, Wilson says — Emmett said little but played quietly with kinetic sand, bounced happily on a trampoline and climbed onto the couch to wrap his arms around his mom’s neck and plant a series of kisses on her cheek.
Wilson pauses her retelling of his language loss to return the affection and say, “I love you.”
“I’m not trying to make you less autistic,” she says a minute later.
“If you want to run around and if you need to have sensory breaks and movement breaks, if you want to communicate through an AAC (augmentative and alternative communication device) or through talking, that’s up to you. I just want you to be happy and safe.”
Emmett has seen many medical professionals and had tests such as genome sequencing and MRIs to look for a tumour or evidence of a stroke — something, anything to explain the relatively sudden onset — but his family has no definitive answers.
The most compelling explanation Wilson has found so far is childhood disintegrative disorder, a late-onset loss of language, motor and social skills that often follows a period of psychiatric disturbances. It used to be a separate diagnosis but in 2013 was incorporated into autism spectrum disorder in the standard psychiatric diagnostic manual.
Wilson found a team of researchers at the Yale School of Medicine who are studying it and Emmett is now participating. A paper by the lead researcher says that while the prevalence of autism spectrum disorder is reported to be one in 68 people, the prevalence of childhood disintegrative disorder is more like one or two in 100,000.
“While approximately a third of children with ASD experience a regression in skills, again usually by age 2 years, CDD is defined by regression, which is characteristically of later onset, more global in extent, and more severe in degree,” concluded a 2017 study led by Dr. Abha Gupta at Yale.
A mother at a loss
The latest path Wilson is exploring is a publicly funded extensive needs program through the Children’s Treatment Network. But the yearlong program runs for a maximum of two hours at a time, two or three days a week and with both of Emmett’s parents working, Wilson is unsure how they would get him there and back.
It’s a dilemma faced by many families in the autism community — their child’s needs are so great that one parent is unable to work, but the cost of paying out of pocket for therapy is so great that families can just barely scrape by with two incomes.
Wilson is currently on leave from her teaching job because she herself has been unable to cope.
“I call it current traumatic stress,” she says. “Why does it only count as a mental health disorder if it happened in the past? What if you’re living with it?”
But that leave ends in a matter of weeks, so if no one is able to take Emmett to and from the extensive needs program, it’s possible Wilson has hit the end of yet another path.
She feels at a loss for how to give Emmett the help she believes he was asking for on that night three years ago. But she also feels as though she is straddling two realities.
“I’m happy with who you are,” she says to Emmett, her voice breaking. “And I want you to be who you were.”