Well-Being Mental Health

What autism researchers and advocates want for people on the spectrum

Wendy Ross, Jefferson Health's Center for Autism and Neurodiversity, autism research, autism advocacy
A patient and his mother (left) work with Wendy J. Ross, MD, (right) Director of Jefferson Health’s Center for Autism and Neurodiversity. Jefferson Health's Center for Autism and Neurodiversity

Story at a glance

  • Autism spectrum disorder is a developmental disorder that affects communication and behavior.
  • It is currently diagnosed by observing behavior, but in the future it may be diagnosed through eye tracking or brain wave measurements.
  • People on the spectrum are lacking sufficient scaffolding throughout their lives, from childhood through adulthood.

Greta Thunberg has recently drawn attention for being named Time Magazine’s Person of the Year and she has openly talked about how her Asperger’s syndrome diagnosis makes her different, and how being different is a superpower.

In politics, Democratic candidate Joshua Collins is running for Congress and would be the first openly autistic member if elected.

With more people on the autism spectrum being open about their diagnoses, we talked to a researcher and an advocate about what should be part of the discussion around autism today.

Autism spectrum disorder (ASD) is defined by the National Institute of Mental Health (NIMH) as a “developmental disorder that affects communication and behavior.” Autism encompasses a whole range of symptoms including many that overlap with anxiety and attention-deficit/hyperactivity disorder.

“People with ASD have difficulty with social communication and interaction, restricted interests, and repetitive behaviors,” according to the NIMH.

Doctors rely on parent questionnaires to screen for children who may potentially have development issues, and they diagnose autism symptoms based on behavior.

“Right now in the U.S., the average age of diagnosis of autism is typically between four and six years,” said April Levin, a pediatrician and autism researcher at Boston Children’s Hospital and Harvard Medical School.

But because behavior follows brain development, “we should be able to tell between two and three years, and often even earlier than that,” she added.

Researchers are working on developing ways to detect signs of autism earlier that don’t rely on observing behavior like tracking eye movement or scanning brain waves using an electroencephalogram (EEG).

In a study that tested infants as young as three months old, the EEG results showed differences between children who turned out to be on the autism spectrum and those who did not. According to Levin, because the techniques need to be validated and it’s not clear yet what age is best for EEG scans to be useful, researchers still have strides to make before being able to use technology like this in a clinical setting to diagnose children. But when that does happen, the hope is that there will be a better understanding of what therapies will benefit young children.

Therapies can include behavior, brain stimulation and medication-based techniques. If doctors are able to diagnose ASD earlier, it could mean better treatment and lower health care costs.

“We could start these types of therapies earlier. The upfront costs may be higher, but in the long term the lifetime cost may actually be quite a bit lower,” said Levin.

How much lower though is hard to say.

“We are in a little bit of a catch 22 right now,” Levin told Changing America. Because there isn’t a good way to know which children will go on to develop ASD, there’s no way to test which therapies would be most beneficial for them. Researchers will have to test therapies for older children and adults then hope to be able to test them on younger children.

Another reason early diagnoses could be important is that the brain changes as people age. The brain adapts and responds to interactions and experiences, and different therapies may be beneficial at different points. A lot of Levin’s work involves working with families to figure out what therapies work for the children. But having a treatment or plan for therapy is only one side of the coin.

“What I have less control over but what’s really important is how do we make communities better at accepting and integrating and recognizing the strengths that come along with this?” said Levin. “That side of the coin too is really important.”

Someone who works on those issues is Wendy Ross, a developmental pediatrician and director of The Center for Autism and Neurodiversity at Jefferson Health who was honored as a CNN Hero in 2014. The center focuses on enabling “individuals with autism and other neurodiverse conditions to participate more fully in the world.”

Neurodiversity is the range of cognitive or neurological issues. It also includes diverse ways to think or interact. There’s been a lot of progress in recent years with visibility of people on the autism spectrum and advocating for better diagnosis of people on the spectrum, Ross told Changing America.

What they are aiming to do in their hospital is create a universal design that would benefit not only people with ASD but everyone, including people with mental health issues, said Ross. They are also working to train all types of medical staff on recognizing ASD and familiarizing them with the symptoms. This is necessary, Ross said, because “we don’t have a medical system that’s prepared to serve them.”

That’s not to say that there haven’t been efforts to create spaces in public places for people with ASD. Some sports stadiums have put in sensory rooms that are sound-proofed. But “it’s still separate,” said Ross. Often, those sensory rooms are only in one area of a stadium. A better solution would be integrated seating throughout the stadium, Ross noted.

Beyond the hospital or the stadium, the vision to help people participate more fully means for them to be able to do other activities, like take a bus or get on a plane.

For example, Ross developed a program to allow families to go on mock flights and to train airline and airport crews when she found out a patient was stuck at an airport. The patient was not allowed to preboard a flight with their family and got aggressive. As a result, the whole family didn’t get on the flight. The test run allows the person with ASD and their family to go through the motions of getting on a flight before they have to do the real thing.

Training staff about ASD involves increasing awareness for how autism symptoms may affect interactions. For example, some people may seem like they understand a lot of what you may be saying but may not understand the social context around it. Or a person may not speak a lot but can understand everything clearly. All in all, the lessons are very simple: Don’t make assumptions, and treat people with patience.

Ross hopes to help more people with ASD and build infrastructure or scaffolding to help them and their communities throughout their lives from childhood through adulthood, especially when it comes to employment.

“It’s not enough to have one person who understands autism that’s around,” said Ross. “We all need to be treating each other with a little bit more patience, and understanding and less judgment.”