CHOC’s leaders, physicians and staff, along with our design team and experts from across the country, came together to create a space where children with all levels of ASD feel comfortable while receiving elite care. To better understand this process and the center, which was completed in January, we sat down with two of CHOC’s leaders to talk about how autism is becoming more prevalent, the design research process and what matters most to families of children with autism.
Dr. Tom Megerian, Medical Director of the Thompson Autism Center and CHOC neurologist
What is the prevalence of autism nationally and in the Orange County area?
Nationally the prevalence has been reported as 1 in 59 children who have symptoms or are on the spectrum. In our Orange County community, there seems to be a higher awareness of autism. Some of our studies in the state have shown 20 percent of kids in special education classes in Orange County have autism; that’s actually the highest of all the counties in California.
There’s a great need to address this issue, especially since not all children have access to a regional center after the age of three due to the sheer numbers and cutoff requirements. We need to step up and be another resource for those kids and their families.
What kinds of unique services are being provided for kids of all ages with ASD?
While our core focus is on early diagnosis between the ages of 1 and 6, we are also focusing on children with co-occurring conditions associated with their autism. An example would be anxiety disorders, which have high rates of co-occurrence with autism. Other medical problems such as GI problems, sleep problems, epilepsy, also occur at a much higher frequency with this population.
Here at CHOC, we provide services for these children really through young adulthood. In addition to that we want to provide transition services—resource specialists who can help families work on plans for transition into adulthood, who either really need help or are looking into mainstreaming into college and need the right type of advice or counseling, even legal consultation so that families can obtain either guardianship or career planning for their children who are going to become adults.
What role will the center play in future autism research?
We’re looking to provide a space for groundbreaking research and clinical trials. We’d like to be able to bring clinical trials to the community so they have safe options for trying novel therapies.
Right now what happens is families are desperate, understandably, to try a new therapy for their child and they’ll do it outside of the auspices, controls and regulations of a clinical trial where safety is paramount. We want to provide an environment for them to do those trials whether they be interventional trials, drug trials or diagnostic trials.
Dr. Heather Huszti, CHOC Children’s Chief Psychologist
How does the center help parents of children with autism?
You don’t have to have a child with autism to understand that if your child needs to see two or three doctors, it would be nice to see them all together. That way, you don’t have to run from office to office and can bundle the appointments.
That’s even more paramount for parents with children on the spectrum. Transitions are hard for these patients. It’s harder for them to get their child in the car. They might not be able to get them out when they arrive. That’s just Step One, then comes acclimation to the building, ensuring staff knows what best helps your child–there’s so much more pressure on the experience.
If you think about the overwhelmingness of each time I go somewhere new–will my child get out of the car? Once we go inside will he throw a fit and everyone will look at me?–the child is upset; it will be a bad day for the rest of the day. To be able to go to one place, everyone is there, they all know how to deal with my child, it looks familiar to them and they might see the same people and have an idea of what’s going to happen. Our hope is that it will be such a blessing for families to be able to bundle everything together and make things a little easier and more convenient.
How did you work with autism researchers to come up with some of the building’s features?
If you don’t work with children with autism, it’s easy to overlook some things that might actually be pretty noxious to a child with autism. When you think about paintings, one of the things we learned from our experts is paintings with just one person tend to be disturbing. They like to see two people together, they like animals.
Things like shadows that make a picture dramatic to us might not appear that way to a child with autism. With colors, you might think of bright primary colors that often appear in pediatric clinics, but those can be harmfully activating for children with ASD. A child with autism often has difficulty processing all the stimuli that are coming in, so if there’s too much color and brightness, it can be overwhelming. We sought to understand what colors, images, sounds and more make them feel at peace. We wanted the environment to work with us to serve our families and children.
How did the idea of making a standalone autism center come to fruition?
The growing awareness around autism is pushing health systems and other institutions to design buildings that are more autism-friendly. We met a couple of times with a researcher from Boston Children’s who was trying to design an autism-friendly hospital.
It can be simple things. For example, we know children with autism have even more trouble understanding they can’t eat before certain surgeries. So, why not ensure they’re scheduled first? We started making simple changes at CHOC and when the opportunity came through this generous gift from the Thompson Family Foundation, we realized we could create a destination where our best practices, the environment and so much more came together to help autistic children.