When Dain Gabrielson was six months old, his parents, Martyna and Randy, noticed something was wrong. Their baby, who once giggled and kicked his legs when they tickled his tummy, now rarely responded to touch or sound.
Over the next couple of years came more puzzling symptoms. At times the toddler slept nearly round the clock; barely moved from the couch when awake; was severely constipated; and would double over, screaming in pain from stomach cramps. He walked with an unsteady gait and couldn’t speak.
A battery of tests beginning at 18 months didn’t explain the gut problems and fatigue, but Dain was diagnosed with autism at two years old.
A plan came together—applied behavioural analysis (ABA) to motivate him to engage with people; speech and language therapy to teach him how to use communication tools (like picture boards). And occupational therapy and physical therapy to improve his walking and strength.
Even as he underwent therapies, Dain grew weaker and became paper-thin, so Martyna began diligently researching what else was out there to help her son. She learned that his physiological problems, such as stomach pains and severe fatigue, could be connected to autism, and she is continuing to explore different treatment options.
There’s no known cure for autism—and, in fact, many people argue that a cure shouldn’t even be the goal. “The rationale is that you would be rewiring the brain in order to change the autistic mind, and this is wrong because you would be changing the whole person. Autism is one of many elements of an autistic person's individuality," says Marie Matte, community manager at Autism Canada.
Still, no one would argue that a child with autism shouldn’t live to their full potential, be physically and mentally well, and be happy. There’s a plethora of research going on, with some people looking at a more holistic approach to treatment that deals with the classic behavioural symptoms as well as the common medical problems that people with autism sometimes face. Other researchers say the answer to successful intervention is to tailor the treatment to the individual. Here’s an overview of autism treatment and where scientists think the research should focus next.
Applied behavioural analysis (ABA) is considered among the most effective autism treatments, particularly for the way it helps kids adapt to their environment.
In ABA, practitioners use rewards and consequences to teach behaviors, while also modifying the child’s environment. For instance, if a child normally runs from a loud noise, the practitioner will turn the sound down and encourage him to stay where he is. The reward comes in when, next time, he himself asks for the sound to be turned down, or requests noise-cancelling headphones.
“Parents are involved through treatment,” says Evelyn Romero, a board-certified behaviour analyst at Geneva Centre for Autism in Toronto. “And we set individual goals looking at what is important to each family. It may be teaching a non-verbal child how to sign or use a picture board to ask for her iPad rather than pointing—or to ask for more time instead of crying when the iPad is taken away,” says Romero.
Cognitive behavioural therapy (CBT) does two things: it helps kids modify the behaviour that is problematic and also helps them change their way of thinking—that’s the “cognitive” part. It's a common therapy tool for many mental health struggles. In terms of autism treatment, it’s generally used to help treat symptoms, like high anxiety, that can accompany the condition.
CBT, like ABA, is also adapted for each child. Things like how they think (concretely or in more abstract ways, for example) are taken into consideration, explains Jonathan Weiss, a psychologist and professor at York University in Toronto.
Take a child who is highly anxious when the school bell goes off: “For kids who think concretely, you may have them ask, ‘What are three things I can do to feel better when the bell rings? (‘Tell the teacher I’m anxious; take relaxed breaths; or draw in my book’). The cognitive exercise is coming up with these options. The behavioral part is practising them,” says Weiss.
Those who think in more abstract ways may not necessarily have a concrete plan; the focus may be on changing distressing thoughts to healthy ones.
“The child may articulate negative thoughts triggered by the bell and then reflect on the situation (‘It won’t last long, and I will get through it’). They may then take a few breaths, using this behavioural strategy, with the cognitive one of reframing their thoughts,” explains Weiss.
There are no medications for the core autism traits of impaired social and communication skills. But there are medications for the commonly accompanying conditions of depression, anxiety and aggression.
SSRIs (e.g., Prozac, Zoloft and Celexa) work well for anxiety and depression. But no studies have determined their long-term effectiveness or safety, says Lila Amirali, head of the psychiatry department at Sainte-Justine Hospital of the University of Montreal.
So in her practice, if a child has clear depression, she may keep them on medication for at least six months after they are back to baseline. which may be a total of eight months to a year, or longer depending on the child. But she wouldn’t keep a child on medication for several years.
Antipsychotics (e.g., Abilify and Risperdal) help control aggression, but they can lead to increases in blood sugar, cholesterol and blood pressure.
“We use these medications with caution. And we use the time kids are on medication to help them learn adaptive behaviours. Often as they adapt, we may be able to reduce or stop the medication,” says Amirali, explaining that when kids are less irritable or aggressive it may be easier for them to learn, and it’s easier for their parents to teach them.
Some medical experts now think of autism as a whole-body condition that can affect the gut, the immune system and metabolism, for instance. These researchers believe autism treatment should have a full-body approach. Suzanne Lewis, a paediatrician and professor of genetic medicine at the University of British Columbia, is among those believers.
She advocates for therapies to improve behaviours, speech and language, as well as therapy to teach kids self-help skills like dressing themselves or brushing their teeth, if those are skills it’s deemed the child can acquire.
Lewis also recommends working with a nutritionist to improve gut health, and specifically limiting sugar and starch. Research suggests bacteria in the gut feed on these high-glycemic foods, then release byproducts that aggravate autism traits, such as impaired language and concentration.
One diet that has helped some kids with autism is Gut and Psychology Syndrome (GAPS), which typically begins with meat and fish broths, soups and stews. Gradually more foods are added such as eggs, vegetables, plain nuts and fermented foods. GAPS excludes grains, refined carbohydrates, refined sugars, prepackaged foods and oftentimes dairy from cow’s milk.
Another less restrictive diet would eliminate gluten and liquid cow’s milk.
Researchers continue to study autism in an effort to better understand it and how people who have it can be supported. Lewis, for one, believes the most successful autism interventions will be ones that address causes, not symptoms.
“We can better predict how to treat when we know what we are dealing with from a causative point. And there will likely be a strong genetic component as the cause, so the key is to identify genetic traits known to impact autism,” she says.
Among a growing list of autism-associated genetic variations is the Shank 3 gene. For example, kids with these variations often don’t ever develop speech, due to motor or cognitive impairments.
“If you know a child has Shank 3, you begin early to develop nonverbal language with signing and communication devices rather than try and develop verbal skills,” says Lewis. She adds that many genetic variances can be identified early usually through blood tests, possibly leading to interventions as early as six months old.
For now, while some tests exist, they are not performed often due to cost and because few physicians know how to look for autism-associated gene variants.
Grace Iarocci, director of the Autism and Developmental Disorders Lab at Simon Fraser University in British Columbia, also believes the next autism treatments should be tailored to the individual person.
In their work, she and her team are gathering patient information in specific areas where kids often struggle, such as interpreting social cues, social motivation, and verbal and nonverbal communication in order to learn more about the child that can be used to develop the best treatment.
“We believe there are underlying causes for kids’ challenges within each of these areas. By grouping kids with similar challenges, we can look for patterns that may lead to identifying the causes—maybe genetic or brain patterns in kids who do not appear to be socially motivated. Then we can tailor behavioural and other interventions to specific groups,” says Iarocci.
Dain, now six, is showing some turnaround, ever since he started a diet that limited sugar and starch and cut out dairy and gluten.
“He gained weight and the stomach cramps disappeared; then he plateaued. But we learned that focusing on his gut issues was going down the right path,” says Martyna.
They then eliminated dairy and meat, added beans, fruit and vegetables, and started Dain on probiotics and prebiotics. He takes supplements for mitochondrial function, responsible for providing energy to cells. And he takes folinic acid to support brain development and function.
It’s been small steps. But his energy is rising; he runs around the house picking up toys and can go on longer walks. His gait is steadier, and the severe constipation has passed.
Moving forward, Dain will see a geneticist who will tailor a treatment for his issues that were identified as having a genetic aspect, like his impaired energy. Another specialist will assess for autoimmune disorders, which are common in kids with autism.
“We think our son’s medical health and autism are intertwined, and that doing everything we can to improve his health will result in him having a higher quality of life and less severe autism,” says Randy.