Parents may face challenges as children with ASD transition to adulthood.
John sat in my office, obviously ill at ease. His head was down, and his arms crossed. He was 17 years old and had a diagnosis of autism spectrum disorder (ASD). His parents had brought him in for “social skills training.” He was clearly unhappy about being there.
“I don’t want any treatment. I want to be left alone!”
I must say the vehemence of his assertion took me aback. I knew from my longstanding relationship with John that he was usually a very gentle person, but he clearly had strong feelings about this.
One of the wonderful things about being a child and youth psychiatrist is that I get to work with kids with ASD over a long time period. I had diagnosed John when he was around 5 years of age, and here he was now, a transition-aged youth on the brink of going to university. I took pride in his accomplishments and felt a real affection for him and his family.
In many ways, his was a true success story, but not without periods of true challenge. He had a lot of difficulties in his early primary school years and had many hours of intensive behavioral intervention (IBI) over that time period. Luckily, he had good cognitive and language skills, and so he was able to keep up academically.
Over time, his autistic symptoms slowly receded, though he was often caught in public self-stimming (rocking back and forth or flicking his fingers) and talking to himself. He was easily recognized as someone on the “spectrum,” but he managed to function reasonably well both at home and at school. He always had an intense interest in subway lines and spent a great deal of time on the internet on various chat rooms with other ASD people from different large cities discussing the routes that the subways took in different places.
He was now in his last year of high school and was starting to think about going to university. His parents were worried about him going to a school away from home and were hoping I could do something to improve his social skills so he could interact with his peers in the university dorm.
‘Don’t you want to have more friends?” I asked, anticipating what his parents might say about his refusal to accept treatment.
“No. I already have enough friends. They are online. I don’t need more.”
“Don’t you long for in-person relationships?”
“No. Do you?” he asked, rather defiantly.
“Are you really happy with your social situation?” I asked, changing the subject.
“Yes, why wouldn’t I be? As long as I can chat with my friends online, I don’t need anybody else!” he said.
I sat back in my chair, thought for a moment, and admitted to myself that he was right.
ASD is a lifelong disorder with persisting impairments in social communication and a preference for very restricted interests and stereotyped behaviors. Even given these common traits, there is enormous variation in the clinical presentation, particularly in cognition and language skills. Although there are evidence-based treatments for the disorder (such as IBI) that can lead to improvements in some autistic symptoms and in some cognitive abilities, there is generally considered to be no “cure.” These treatments seem to be more effective the earlier they are provided, such as prior to school entry, though some treatments, such as social skills training, can be effective even if delivered during adolescence.
As well as a focused interest in reducing autistic behaviors and improving functioning, experts in the ASD field have more recently focused on dealing with the other health conditions that are commonly seen in ASD. It has been known for a while that youth with ASD are at greater risk than the general population for having mental health challenges, such as attention deficit disorder, anxiety, and depression, as well as general health problems, such as sleep disturbances, gastrointestinal problems, and other medical problems. Sometimes these conditions respond to the same interventions directed to these health problems in typical people; sometimes, ASD-specific adaptations have to be made to the interventions (such as cognitive behavioral therapy for anxiety) to be effective.
An important controversy has arisen in recent years about the need for the treatment of ASD in general. Some ASD adults have protested against the idea of being treated or of trying to achieve a state considered “normal” by neurotypicals (that is, people without conditions like ASD). They have found the experience of treatment as “intrusive” and unnecessary. This puts them in conflict philosophically with the parents of many young children with ASD, who have spent a great deal of time and money on early IBI in the hopes of curing their child’s ASD.
Instead, advocates with ASD have asked us neurotypicals to not rush to treat ASD and try and “cure” it, but rather to accommodate the person with ASD. In other words, it’s not the child with ASD who should change, but the rest of us who should work to create an environment that accommodates the person with ASD.
It is true that many people with ASD are quite happy in their own way. The associated health conditions mentioned above do reduce the quality of life of adults with ASD, and they are keen to accept treatment for those challenges. We neurotypicals may not think of it as being possible that a person with ASD is happy in the presence of autistic symptoms. But ASD advocates have articulated that they can be quite happy with one or two friends who share the same interests, with an online community, or with limited social interaction that allows them to spend a lot of time by themselves, “inside their own heads.”
An interesting recent study asked a group of adults with ASD what they considered to be their strengths (Russell et al. 2019). They mentioned the ability to hyperfocus, their attention to detail, having a good memory, and their creativity, as well as honesty, loyalty, and empathy for animals or for other autistic people. It is also true that people with ASD rarely lie, are manipulative, have anti-social tendencies, or are cruel and take advantage of others. They rarely smoke or have substance use disorders.
These strengths are all presumably the result of the same social communication brain circuits that underly ASD and may lead to all sorts of difficulties in early childhood. What can be seen as an “impairment” in one context is a “strength” in another. Hence the need for all of us to create a context that allows these traits to become strengths.
This neurodiversity perspective (Baron-Cohen 2017) makes it imperative that we “neurotypicals” always reflect upon what outcome we are hoping for and who gets to decide the desired outcome. The perspective of those with ASD can no longer be silenced. Of course, to support that voice, we have to improve the social communication skills of those with ASD to make sure we can hear their voice in adolescence and adulthood.
Ultimately, I do not see a conflict between the perspectives of parents who want to treat ASD and youth like John, who want us to accommodate their world. Rather, it may be a matter of timing. In the early years (up to puberty, say), parents, clinicians, and decision-makers need to provide evidence-based services that can reduce autistic symptoms that cause distress and create impairments (especially in social communication) and improve functioning so that all children with ASD can be included in all environments and can raise their voice to be heard.
Then we have to listen and accommodate their needs, not what we consider to be best for them. I do not know when that transition from treatment to accommodation occurs, and it will occur at different times for each child with ASD, but parents, health professionals, and policymakers all have to listen to the person with autism and make that transition at some point.
I brought John’s parents into the session with him and encouraged him to express his feelings about there being no need for further “treatment.” I remember the look on his parents’ faces; it was as if they were hearing him for the first time, even though he had been a verbal child since a young age. Perhaps this was the time when they really heard John as a young adult. Eventually, they agreed to his wishes and seemed to have come to terms with the “new” John.
As they got up to leave the appointment, John’s mom asked him, “Shall we go home now, John?”
“You go home, Mom. I will meet you there in a while. I am going to take the subway home by a new route,” he said with a slight smile.
I chuckled to myself as I wished them well on this next stage of their life, knowing that we had all learned an important lesson that day.
Pier Bryden, MD, is a psychiatrist and clinical teacher at The Hospital for Sick Children and an associate professor at the University of Toronto. Peter Szatmari, MD, is the Chief of the Child and Youth Mental Health Collaborative between CAMH, The Hospital for Sick Children, and the University of Toronto.