A new approach to autism

Over the next few months, CAPHC Conversations will feature stories from BLOOM, Holland Bloorview Kids Rehabilitation Hospital’s online resource for parenting children with disabilities. For more information, please contact BLOOM editor Louise Kinross at 416 424 3866.
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Jessica Brian is a psychologist and clinician investigator at Holland Bloorview who co-leads our Autism Research Centre. She researches the earliest signs of autism in babies and develops and tests parent-led interventions for toddlers. She came to Holland Bloorview from SickKids in 2004, when the child development program moved here. When Jessica isn’t answering research questions, she does assessments with families who come to see if their child has autism.

BLOOM: What led you into the field?

Jessica Brian: I’m one of those weird people that knew I wanted to be a psychologist as a teenager. I’ve always liked helping people and supporting people who I felt didn’t necessarily have a voice. I got interested in autism because I read about a young girl with autism who was considered to be quite low-functioning and almost non-verbal, but who had amazing artistic abilities. I saw her sketches and read about her and it captured my interest.

Soon after that I lived with a family for two or three summers and worked with their son over a few years. During that time he received a diagnosis of autism. I travelled with the family through having initial concerns about autism and having those concerns confirmed, to working really hard to help him develop language and build relationships.

He was such a fun kid to work with—smart, funny, playful—but we also had to help him get through big upsets and learn to be successful in school, at camp, and in the community. I saw how hard his parents worked to give him every opportunity to enrich his development, how far they had to stretch their resources, and the advocacy battles they had to engage in. I felt excited with every little gain he made. This was a very special experience that probably shaped the rest of my career.

BLOOM: What why did you decide to work with children as opposed to adults?

Jessica Brian: Kids are much more fun than adults. They’re more creative and more playful. I really enjoy playing with kids. I also really enjoy working with families, and I think this is one of the best ways to support children.

BLOOM: Are you more passionate about your clinical or research role?

Jessica Brian: I think this is the perfect job because of the balance. The two pieces are aligned but they’re very different in terms of a typical day, and that keeps me on my toes. The two streams inform each other. The clinical gives me great questions and the research helps me to answer those questions.

BLOOM: What is a clinic day like?

Jessica Brian: There really is no typical day. In clinic I would usually see a family I’ve never met before. I get the chart with some information about the history of the child and the parents’ primary concerns and reports from school or therapists, if the child is older. Then I meet with the family. I explain to them why they’re here. Sadly, it hasn’t always been explained well why they have been referred here. We have a lengthy discussion about the child’s early development and their concerns. Then I work with the child in a semi-structured play task for about an hour.

BLOOM: Do the parents observe the play?

Jessica Brian: If the child is young they sit in.

BLOOM: What ages of kids do you see?

Jessica Brian: The youngest child I’ve seen in clinic is nine months and the oldest is 17 years.

BLOOM: I thought you would mainly see preschoolers.

Jessica Brian: That may be true as an organization. The average age of diagnosis is around four years. But I often see more complex kids who may have gone through their first 15 years with no diagnosis. Or sometimes they have an existing diagnosis—of anxiety disorder or ADHD and anxiety—but it doesn’t explain the whole picture for the family or the individual.

Some teenagers have done research on Asperger’s or high-functioning autism and approach their parents to say this captures me and I think it explains the challenges I’ve had. I also see kids who had a diagnosis of intellectual disability, and where autism hasn’t been considered.

Autism is becoming more well known. That means that more people hear about it and identify the signs that may fit with what they’re seeing in their child. I also see very young kids under the age of two. Because awareness of autism is out there, families are raising concerns with their doctors and children are being referred much earlier, and that’s a huge shift we’ve seen in the last five years.

BLOOM: You explained how you got interested in autism. What keeps you engaged?

Jessica Brian: Everything! It’s such an interesting condition because it manifests so differently in every child and the interaction between what I do clinically and in research keeps generating new ideas. It really does not get boring. I love that my research is intervention and I love that I get to do intervention with these kids and families and see gains being made. There is always a new challenge to grapple with and I see results which is super exciting.

BLOOM: What is most challenging about the work, perhaps in a not positive way?

Jessica Brian: I think balance is a problem. The truth is that it’s hard to manage both the clinical and research expectations.

The work can be emotionally draining. Families often have a very emotional reaction to the diagnosis. There are lots of families for whom this is hard news to hear, and you have to spend a lot of time helping them get through a very difficult time. That’s not always the case. Some families come in well prepared and they want the diagnosis to get services for their child.

People often say ‘Isn’t it depressing to always tell families that their child has developmental challenges?’ That is the reality for the child and family. The role I play is to help them interpret the news in a way that gives them hope and plans for the future. It’s potentially draining but I believe it’s really valuable.

BLOOM: Of course the way you deliver the news can empower families. But do you ever leave work feeling terrible after supporting a very distraught family?

Jessica Brian: I do. Absolutely.

BLOOM: Is there anything you do to help cope?

Jessica Brian: I try hard to remind other people to take care of themselves, but I don’t do a very good job of it myself. The borders between my work day and home day include a one hour plus commute where I listen to CBC radio. Half the time I’m not listening. I zone out and relive what happened during the day. Having that hour to do that really helps.

BLOOM: To decompress.

Jessica Brian: Yes, to decompress. I also use my husband as a sounding board if I think the system has been unfair to a family, because that happens a lot. He’s a behaviour analyst.

BLOOM: So he works with children with autism?

Jessica Brian: Yes, that’s how we met. I did an internship in Princeton, New Jersey, and he was working at the school where I did my internship.

BLOOM: Oh, that’s so interesting.

Jessica Brian: We have lots to talk about.

BLOOM: Are there other things you do to help you cope on days that are emotionally difficult?

Jessica Brian: Yes. I talk to my ‘people.’ My team here is really supportive. So I’ll burst into Evdokia’s office and use her as a sounding board, or speak to one of the nurses or research staff who knows the system and families well. I think it’s important to model for trainees that you shouldn’t have to ‘have it all together.’ And if you think you have it all together, you’re missing something.

With the kids who come to us, it’s not usually a clear-cut story in terms of ‘this is the answer.’ You need to think carefully about all of these pieces of evidence that contribute to the diagnosis and there’s often some level of uncertainty, and you need to share that too. Things aren’t always black or white, and if you think you’re right all the time, that’s ridiculous.

Particularly in working with my research families over time, I find most families are very open to hearing my own uncertainty. If I see a really young kid at 18 months and the picture isn’t totally clear, I don’t pretend I’m more confident than I am. I’ve learned over the years that you can collaborate with families. When there’s uncertainty, it becomes a partnership where families, who see their kid every day, can go away thinking about what else to watch for.

BLOOM: So they can be your eyes.

Jessica Brian: Yes.

BLOOM: Can you describe your research a bit more?

Jessica Brian: The two arms go nicely together—what are the earliest signs that predict autism and how do you intervene? The intervention I focus on is called behavioural and developmental. I co-developed it with a colleague in Halifax. It’s a parent-mediated intervention where we teach parents to interact with their toddlers in ways that will enhance the toddler’s social communication and connectedness. I have amazing research staff who are trained to go into the family’s homes for 12 weeks.

BLOOM: Is this once a week?

Jessica Brian: It’s three times a week the first week, two times the second week and then once a week. They teach the parents ways to enhance their child’s directed or functional communication and to share positive emotion.

BLOOM: What's an example of how they may encourage a child to communicate more directly with them?

Jessica Brian: We ask them to observe their child and think very carefully about every activity they engage in and figure out what is it about the activity that the child likes. One child might like a pop-up toy because of the sound, whereas another child may like it because of the feeling of the buttons. Once a family has identified what the child really likes and the details, they’re coached to place a bit of a language demand to keep an interaction like that with a toy going.

So, if the child really likes the sound the pop-up makes, the parent might block the door from opening and say “pop,” and if the child is looking at the toy or the parent and makes a vocal attempt, the moment they make the attempt they open the door. They learn creative ways to be part of a game and to be really fun and playful.

BLOOM: What kind of changes are you seeing?

Jessica Brian: We did a pilot study with 20 families in Halifax and Toronto. The children were about 12 to 32 months. The kids of the families who had the 12 weeks of coaching had gains in how much they respond when parents give them a verbal prompt, and in how much they made their own verbal initiations. This is a big deal in autism because kids are often very delayed in making social initiations.

BLOOM: Would this be a request?

Jessica Brian: It's usually in the form of a request. The reason we work on requesting so much in autism is we know how often motivation is a challenge. We want to capitalize on the moment the kid is most motivated to get something. That's when we make them work the hardest. The other thing we saw in the pilot study was that parents were smiling more and kids were looking at their parents more. It's hard to smile when you're stressed out and your kid is not responding.

BLOOM: So these gains were compared to how the kids tested before the program?

Jessica Brian: Yes, at baseline. We've also done a randomized control trial of 62 kids in Toronto and Halifax, and that paper is under review. The results look consistent with what we found in the pilot, except the gains are seen only in the treatment group.

However, even in the control group we gave families the option, after the intervention, of getting the Social ABCs, because we didn't feel comfortable not offering a family the intervention.

BLOOM: To what do you attribute the changes?

Jessica Brian: We're talking about a very short period of time, three months. We don't see change in some of the big standardized measures, like a change in IQ, but that can be a funny concept in two year olds.

We do see the kids achieve small communication and relationship goals that we feel are very important to build the foundation of social communication. If we can get those small changes over a small period of time, and have empowered the families to have a way to interact with their kids, we hope it will lead to larger gains over time.

BLOOM: We spoke last year about a similar study that was done in the U.K., and some unfortunate media coverage where the parents were referred to as 'super parents.'

Jessica Brian: Yes, I did about six interviews that day and every single interviewer used that term 'super parents.' I don't love that term. I think it puts undue pressure on those parents, and it's also not fair to families who can't take it on. There are families who can't do the training, for multiple reasons. Perhaps they have other kids with autism who need attention, or they have limited financial resources and can't take the time off work to learn the skills.

BLOOM: But isn't it also true that not every child will make significant gains, even when parents can do the training?

Jessica Brian: That's right. They were group-based changes. The amount of change varies from one child to another. That's really important to remember. We did evaluate parents' delivery of the intervention. We videotaped them and coded their behaviour. We were able to see that almost every family attained a level of fidelity where they were delivering the program the way we wanted them to.

BLOOM: So it wasn't because of parent performance, or something a parent did or didn't do, that some kids didn't progress as much?

Jessica Brian: No. There are kids who will make minimal gains despite how hard a parent works. That is especially hard for families who work very hard and feel a tremendous investment. We have to be upfront and cautious in what we say this intervention can deliver, and assure parents that they're doing all they can.

Every kid made some gains that parents could celebrate, and we helped parents look at those gains and not overlook them. Our research staff are amazing. They will have that conversation with a family where they tell them there's nothing more you could or should be doing. What you're doing is a perfect fit for what your child needs.

Sometimes during the intervention a child who was initially showing some signs of autism is diagnosed with autism. Families may have hoped that the intervention will prevent their child from receiving the diagnosis, and those parents can feel deflated.

BLOOM: We've talked before about how some adults with autism feel there should be more focus on acceptance, and some oppose traditional behaviour therapy. How do you balance the idea of acceptance and the idea of cure?

Jessica Brian: One thing that's really helpful is I have worked with kids of all ages, as well as young adults. So I have a nice broad perspective of that developmental pathway to share with families. I'm aware of the advocacy efforts by adults, and and they're extremely important. With programs like the Social ABCs, we're not trying to fix or cure or change the autism.

One of the reviewers of our randomized trial asked how many children came in with autism and how many went out? We're not trying to reduce how many kids have autism. We're trying to boost the skill set they have. We're trying to help parents create an environment where the kid will be most successful and be able to thrive.

Using our knowledge about autism in babies, we want to help parents interact in ways that our research would suggest will optimize the learning environment. So it's about supporting the parents to create a good fit between the child and their environment.

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