CAFI hosts autism seminar

Community Action for Improvement held a seminar called, “What Every Community Needs to Know About Autism.” At the LaFayette Parkway location, Nathan Call, the Vice President of the Marcus Autism Center in Atlanta spoke to a crowd of around 30 people last Monday.

The two-hour talk consisted of an overview of the disorder known as Autism Spectrum Disorder, current research, and questions and comments from the audience.

Call started the talk with a statistic: One in 36 kids by the age of three will meet the criteria for a diagnosis of autism.

“One in 36 means more than all of the kids with juvenile diabetes, cancer, cerebral palsy, cystic fibrosis, Down syndrome and muscular dystrophy combined,” Call said.

The vice president attributed this increase in prevalence to multiple factors. One factor was the increased public understanding and social acceptance of the disorder.

More parents are asking for screenings, teachers are better trained to notice signs and society is becoming more accepting of neurological differences. Certain insurance companies are requiring an autism screening by pediatricians during well-child checkups. Diagnosing methods are more advanced.

Another factor has been the changes in the psychological world. What was formerly known as Asperger’s Disorder is now included in the ASD diagnosis. Other syndromes and disorders are differentiated.

“Not even that long ago, a kid might have a diagnosis and it would be something else and now we increasingly know that probably is something that we would call autism,” Call said, giving an example, “It used to be the case that people thought you couldn’t have Down Syndrome and Autism, that was previously thought [that] these two things are incompatible you can’t have both.”

It is called Autism Spectrum Disorder because it is a spectrum.

For example, some people think an Autism diagnosis means the person an an intellectual disability. However, 51 percent of those with ASD have above or average intelligence, 25 percent have a borderline range, and the smallest percentage at 24 do have an intellectual disability.

“There’s an expression with most folks who work with individuals with Autism, is that once you’ve met one kid with Autism, you’ve met one kid with Autism because they’re so different, the heterogeneity is pretty vast,” Call said.

With the rise in prevalence comes an increase in skepticism. From insurance companies to some members of the audience who have children with autism expressed doubt about the drastic rise in prevalence.

Call agreed with the audience members’ point that people are seeing more people with Autism, from one end of the spectrum to another. He attributed this to the fact that children and adults who are on the more “profound” end of the spectrum, who may be nonverbal or have developmental disabilities, are allowed in public spaces more than ever. There was a time not long ago, said Call, that people with profound autism were sent to homes or kept at home due to stigma.

On the other end of the spectrum, we see individuals who may have more developed social skills and “don’t seem” like they are autistic. Diagnosing and awareness have played their part in increasing these numbers.

He makes a point to address the view that the disorder can be caused by vaccinations or diets. Call said the research shows that these environmental factors are not contributing to the rise in numbers and have been shown to have no effect on whether a child has or will have ASD.

“Autism is about social engagement, social behavior,” Call said. “There’s differences in both the quantity and the quality of their social interactions or how they engage with other people. But this can be completely different depending on the individual.”

The doctor said that some people with ASD are very outgoing but may not be able to read certain social cues the way a neurotypical person might. While others may have a hard time engaging with people socially.

Call said a big thing he wants people to know is that ASD is not a fixed disorder. As someone develops, so too do the symptoms and signs of ASD. According to the research, intervention, especially early in life, can address some of the social and behavioral challenges. This could be an intervention that addresses anything from looking people in the eye when they talk to reducing self-harm behaviors.

The earlier the intervention, typically, the better the outcome. Unfortunately, diagnosing and treatment lag behind the number of kids and adults in need. The average age of diagnosis is 41/2 for white children, by then the child has largely developed and reinforced these behaviors, making it more difficult, but not impossible, to address them. This average age increases in minority groups; the average age of diagnosis for black children goes up to 5.

“Not because those families expressed concerns any later. It’s just that they’re not always listened to or they don’t have access to services. And so those kids are getting diagnosed later,” Call said.

While a rise in the prevalence has in some way increased the care for individuals with ASD, the services available are nowhere close to where they need to be. Call said Marcus Center is one of the biggest centers of its kind in the world. However, it is also one of the only treatment centers in the southeast. Due to the reputation it has, families will come from outside the Southeast or even the country for treatment in Atlanta. While the center has more resources than most, it can not serve everyone who needs help.

“One of the worst things in my job is to talk to a family and say first of all… We believe because a lot of families don’t get that validation,” Call said.

He continues, “Two, ‘We have a team of people who have dedicated their lives to figuring out how to help families like yours, and we got the biggest program in the world. But oh wait is a year and a half long wait to get seen.’”

One of the Zoom attendees asked Call for guidance. She said she has been trying to get pediatricians and doctors to refer her 12-year-old to services since the child was young. The speaker said she can’t get into Marcus Center without a referral and if she could there would be a wait of two years. When the parent asked the school system for help, she said she only received a link to Call’s talk.

“I don’t even know what the right choice is here. But I can’t find the support for my kid,” she said.

“I’m also not going to sugarcoat things and tell you everything’s okay…The reality is your experience is all too common. That doesn’t make things better for you. Because you’re trying to advocate for your kid and get what your kid needs,” Call said.

Call acknowledged that while this issue is, of course, most frustrating for the parents, the people in the field “lose sleep,” over not being able to treat every child.

“The fact is there is not enough support services for families…I think many of the things that you’re describing are exactly the kinds of things we tell family, which is to advocate, persist, don’t give up. You’re doing all that; that doesn’t get more services where none exist,” Call said.

This can be just as frustrating for the child or adult with ASD. Call said around 20 percent of the people who come into the Emergency Department as suicidal are on the spectrum.

Many of the fixes are unfortunately long-term, which does not help the families in the present. The Marcus Center is working to train pediatricians out of the “wait and see approach,” and instead be more proactive when parents come to them with concerns. New eye-tracking technology has been used by Children’s Healthcare of Atlanta to diagnose children at an earlier age, to hopefully get them intervention sooner.

However, diagnosing early will not solve the issue of lack of treatment, said Call. He said the Center is working on expanding that technology as well as services to other parts of the state.

He encouraged audience members to advocate for families and individuals with ASD, help fund new clinics or services and call their state and federal representatives to ensure more families can be served.

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