How has the dialogue around research and treatment with respect to autism changed in recent years?
I think the way that autism is defined, understood, approached and supported – or not supported – has been changing quite rapidly through the neurodiversity movement.
We're still in a kind of acceleration phase – the neurodiversity movement is a really big paradigm shift from the way that we traditionally understood autism in the past. The Diagnostic Statistical Manual of Mental Disorders’ Fifth Edition (DSM-5), published as a tool for taxonomy and diagnosis by the American Psychiatry Association, still grounds autism in a deficit-focused model – that there's something disordered in autistic individuals that needs to be treated or cured.
The neurodiversity movement is really pushing against that and saying, "Actually, autism is just a difference in the way that a brain is wired, a developmental variant that is normal and expected." And with that kind of inclusive perspective, autism isn't a disorder, but a difference, a difference that we expect to find in human populations. Autistic individuals should be given the same dignity, respect and value as any other member of our society would be.
It's really shifting toward a more balanced perspective that's acknowledging differences in abilities and also strengths – a balanced perspective on an individual instead of just a focus on some challenges that they may experience.
For example, when the DSM-5 changed ‘autism disorder’ to ‘autism spectrum disorder,’ many people thought of that spectrum as a linear path from ‘mildly autistic’ to ‘very autistic’. Sometimes people would say ‘low functioning’ and ‘high functioning.’ But what we know about autism is that every autistic individual has a constellation of strengths and challenges that make them very unique. Classifying someone in this way can be really hurtful to the individual and not actually represent who they are and the differences in the ways that they perceive, understand and experience the world.
This seems to be part of the broader positive psychology movement, yes?
Absolutely. And in my work, I work in many low-resource contexts with adolescents. Often when I talk about adolescents, people think of the stereotype of an angsty or difficult-to-control, hormonal, impulsive, risk-taking adolescent.
In my work and on my teams, we don't perceive adolescents in that view. Instead, we say, ‘Wow, adolescents have so many strengths. They can adapt to situations faster than adults. They can approach novel experiences. They're often motivated by issues of social justice and equity. And so thinking about how to take the strengths of an individual and amplify those, to me, is a more balanced approach to considering how to support autistic populations as well.
If an individual is a visual learner, are there opportunities to incorporate visual schedules in the classroom? If an individual is a ‘sensory seeker’, sensitive to sensory input, or both, are there opportunities to support their learning by providing sensory breaks or tools to reduce sensory information? If a child has preferred interests, can those interests be incorporated into assignments to amplify intrinsic motivation for learning? I believe building communities that value positive subjective experiences and individual differences will contribute to human flourishing and well-being.
What are some of the other mental health challenges common with autism spectrum condition?
Some of the common comorbid disorders are attention-deficit/hyperactivity disorder, obsessive compulsive disorder, mood disorders like depression and anxiety, and sensory processing disorders. We also see that many adults are now getting diagnosed with autism later in life, and may have been misdiagnosed as having ADHD or anxiety when autism actually better characterizes their experience and their needs.
But for me, what I'm more concerned about is the exceptionally high risk of autistic populations for depression, suicide, and victimization of sexual assault.
It's really quite frightening to read those statistics, especially having a 3-year-old daughter who's autistic. I think that we can try to counter those risk factors by supporting autistic individuals in different ways – allowing them to be their authentic self, to have bodily autonomy and self-determination and respecting and supporting differences rather than encouraging masking or extinguishing those characteristics that might be viewed as different.
Untangling these comorbidities is related to understanding the stigma associated with receiving a diagnosis. Often stigma drives people to avoid diagnosis or can encourage ‘masking’ – trying to appear as you expect people to want you to appear – instead of receiving resources and support that allow an individual to be their authentic, true self.
Would you talk a little bit more about, as you've seen in your research, the effective intervention approaches and accommodations and why those are so important during adolescence?
The reason why one of my articles focuses on intervention during adolescence is because the majority of autism interventions target early childhood, so ages 0 to 5. In the U.S., for example, it's free to receive therapeutic services through early intervention, which is ages 0 to 3, at which point the public school system takes over.
But we also know that the average age that children receive an autism diagnosis is 5. So if we put all of our investment in early childhood intervention, many of these children are not yet evaluated, so we're missing an opportunity to get resources to those that need them at different periods of development. Adolescence is another sensitive period for learning that deserves greater investment of supportive resources. Accommodations for autistic individuals in homes, schools and communities can help children learn and will be different for each child. While caregivers often advocate for autistic children in early and middle childhood, I believe that self-advocacy, especially during adolescence, can empower individuals to best represent their unique constellation of strengths and differences in abilities.
And that’s due to neuroplasticity during those ages, correct?
Yes. One of the reasons for investing in early childhood is because during this time, your brain has a high level of neuroplasticity, which is basically the ability to learn new things and form new neural connections that were not previously there.
We know that a second window of heightened neuroplasticity opens with the onset of puberty and associated changes in hormones, physical, cognitive, emotional and behavioral patterns. The capacity for specific types of learning – social, emotional, motivational learning – is amplified during that period of time. So for autistic populations, I would advocate for greater investment, especially during early adolescence – a period of heightened neuroplasticity. For autistic populations, leveraging strengths in peer and social learning environments may be particularly effective during early adolescence to promote social, emotional and motivational learning.
Can you discuss how non-specialists can help address gaps in supportive interventions for autism spectrum condition globally?
Most of my work is internationally focused – almost always in very low-resource contexts. A challenge for supporting autistic children in those contexts is that there can often be a lack of services and specialists. Speech language pathologists, occupational therapists and developmental pediatricians can be unavailable or difficult to access. Diagnostic or evaluative tools may not be validated in these contexts. There’s also the consideration that different parts of the world view autism differently.
For example, we’re doing work in Darjeeling, India, to develop neurodiversity-affirming resources for caregivers and teachers. There have been a lot of requests from teachers in the community wanting to better support autistic individuals; they actually prefer the term neurodiversity. Supportive interventions within that context mean that the diagnostic label of autism has less practical importance, in comparison to neurodiversity-affirming interventions that recognize differences and seek to create inclusive learning environments where all children thrive.
Therefore, the costs and resources required for many of the types of interventions in high-income countries just simply aren't practical, scalable, or sustainable in low- and middle-income countries. To address those gaps, more and more, we are turning to task-shifting specialist care to non-specialists. That might be caregivers, siblings, peers, teachers, community members – people who haven't received specialized training and empowering them to support individuals through easily usable and digestible tools.
I'm especially interested in considering how teachers, peers and community members can step in to support autistic children, instead of only focusing on interventions targeting caregivers. Support from these other important people in autistic children’s lives also simultaneously allows children opportunities for experiential learning in different contexts, not just at home, but in a social context, in a school context, in a work-related context, in the community. The more opportunities there are for practicing learning in different environments, the faster that people develop those skills and knowledge.
How has your daughter benefited from a supportive classroom?
Indra is in a wonderful, inclusive preschool. The culture that the teachers create in the classroom has allowed her to thrive. Her peers help her to learn. Our daughter’s friends continuously show her kindness – they get her water bottle, or find a comfort item for her, or put her shoe back on because she was crying because it came off. It’s so sweet and genuine to see how young children embrace differences.
A lot of her experience comes from her incredible teachers. They are deeply invested and committed to supporting our daughter to learn. They think of creative solutions for challenges she’s having and scaffold her learning with kindness. When Indra comes into the classroom the teacher tells the class, ‘Hey, everybody say hi to Indra.’ And everyone says, ‘Hi, Indra. Hi Indra.’ I mean, Indra doesn't say hi back necessarily, but over time, those acts of kindness build her trust that, ‘Oh, these are friends’ and that she’s included, valued, loved. Little by little she is feeling more and more comfortable engaging with those friends.
An example that comes to mind that made me very proud and grateful happened the other day at her school. There were four little girls who are very good friends, sitting in a circle at recess. My daughter often prefers to play independently. That day, she saw the circle, marched on over and sat down right in the middle circle. Then, the other girls and Indra started playing and interacting with Indra in the middle of the circle.
I’m not sure what motivated Indra to initiate that social interaction, but it’s something I can't recreate at home. I don't have all those different peers for her to interact with. It’s why I think inclusive classrooms are so important because there are all those opportunities for learning that can come about naturalistically in such a setting. And I believe inclusive classrooms are good for all kids – teaching children to be welcoming, kind and understanding of our differences. In resource-poor contexts, helping communities to build inclusive learning environments is particularly important because alternatives aren’t often available. Children with differences, if excluded, won’t receive the education they deserve.
We all want that kindness and compassion extended to us. One of my favorite quotes by Maya Angelou is, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” I want to see all individuals with different brains celebrated, to feel worthy and loved for who they are. That's my hope for the future.
April 23, 2024