Importance of Autism Awareness and Acceptance Month
Q&A with Thomas Young, MD, founder and chief medical officer of nView Health
In April, we celebrate Autism Awareness Month and Autism Acceptance Month in the United States and World Autism Month worldwide. The month also includes the internationally recognized World Autism Awareness Day, which takes place every year on April 2.
In this Q&A with Dr. Thomas Young of nView Health, he discusses a range of topics concerning autism, including the importance of moving toward acceptance of the disorder, common misconceptions about autism spectrum disorder (ASD), and tools that can help with diagnosing ASD.
Q: We're seeing a shift in how some people are describing Autism Awareness Month with a movement toward "acceptance" — i.e., Autism Acceptance Month. Why do you think that's the case?
Dr. Thomas Young: The first image that comes to mind is Sesame Street. In 2017, a character appeared on Sesame Street who has autism. I think part of the impetus behind adding this character, named Julia, is to help with acceptance. We're at a point where the public is generally aware of autism, so now it's more about accepting people who have autism, just like we accept people who have any other social or physical disability.
Q: Why is this acceptance important?
TY: While autism is not a mental health disorder, it often carries the same stigmatization as some mental health disorders. By moving from awareness to acceptance, we can hopefully accelerate the destigmatizing of the disorder.
Something that's often forgotten about people with autism is that they have other behavioral health disorders, just like the rest of us. It's extremely common to see children with autism who also have anxiety-related disorders and obsessive-compulsive disorders, for example. Some of the behaviors you see in kids with autism are really related to underlying anxiety.
It's also important to remember that the definition of autism has evolved. There was a time when autism and Asperger's were treated separately. Now, children with Asperger's symptoms are diagnosed with autism spectrum disorder. There's a huge spectrum of people with autism, with a high percentage of those who are just a little on the spectrum. They're more often going to have problems with issues like depression, getting bullied, and having post-traumatic stress disorder (PTSD). All too often, the sole explanation provided for children who are autistic and experiencing these other problems is that they are an autistic kid. Instead, this is a kid who happens to have autism and may also be depressed. That's the same as a child with Down syndrome symptomatology. Those kids get depressed as well. Depression is an emotional state and is not due to intellectual status. People with cognitive or intellectual issues become depressed or anxious as well.
Autism is now uncovering itself. With the acceptance of ASD, we must be aware that if someone has autism, we need to treat them just like everybody else. Once you get used to and accepting of someone having autism, then you start to notice the rest of the potential challenges they may be facing.
Q: What are some common misconceptions about autism?
TY: To build on my previous answer, it's important that autism be recognized as a combined disorder. There may be certain cognitive issues. There may be certain neurologic issues. It's a mixed bag, and that's why we now use the term autism spectrum disorder — not autism or Asperger's.
We in the behavioral health world need to understand that a person who has hypertension can be depressed and a person who has autism can be depressed. A person who has autism can have severe PTSD. People with autism are often bullied, which leads to significant behavioral health issues. People with autism have higher suicide rates.
Q: Is autism detected and diagnosed fairly early in someone's life?
TY: It's supposed to be, but that's not always the case. You can have individuals who get great grades, excel at hobbies, and have plenty of friends, but doing all of this proves more difficult than for those not on the spectrum. That's why, for example, you see adults who get into early adulthood who were not diagnosed with autism spectrum disorder but have some of the symptomatology and traits. You can pick up that someone has ASD later in their life, often in association with an underlying mental health disorder. In other words, these individuals had all these challenges they've needed to deal with over the years, which may include isolation because they don't pick up emotional cues well or they are described as "nerdy" because of the different qualities associated with such a label. They probably are on the spectrum. Then, because of ASD, they have anxiety disorders.
In the behavioral health world, we may find people who haven't been diagnosed because they were sent for some sort of help, such as OCD. Yes, they have some OCD, but also yes, they're on the spectrum. But nobody put that together earlier in their life.
That brings us back to the earlier discussion around acceptance. Since this disorder goes from really bad to barely noticeable, there's also the underlying current of mental health disorders that can come with it. In the mental health world, we need to be aware that people who have autism can and often have, in a higher propensity than the general public, underlying behavioral health disorders. We need to pay attention to them just as if they were anybody else with that disorder. The difficulty here is that those with ASD often don't associate well with people or may not have a lot of friends. They don't have a lot of people watching their back. Maybe they only have parents or an older sibling. They are often displaced because they don't know how to do certain things in society. They may lack purpose because they may not be well educated. It's all across the board. As a result, it's difficult for them to meet the criteria for getting good care for mental health disorders. Being aware of autism is important but being accepting of a person with autism and the fact that they can have underlying disorders is critical.
Q: Are there any tools that can help with diagnosing autism spectrum disorder?
TY: In the nView electronic M.I.N.I. KID screener, we have tools that can help at least focus the providers and identify a possible piece of autism in what they're seeing. Severe autism is going to be noticed very early on. But providers and caregivers in the behavioral health space need to be aware of the things that are important in assessing autism in their regular practice because they may run into people who have not been properly diagnosed with ASD. Without that awareness and understanding, they may miss that indicator. They may see them as OCD clinic patients, for example, or they may encounter a person with undiagnosed autism in the emergency room after an attempted suicide. If we're not putting together the piece that says somebody has a bit of autism and has another condition, the other condition may not get better without recognition and focus on ASD as well.
Q: Are there treatments for autism spectrum disorder?
TY: It depends upon the severity of autism, but therapy can be effective. There are now better ways to diagnose children early on. Getting the diagnosis better for people earlier — as early as you can — improves the outcome for not only the patient with autism but also for caregivers. By this I mean the parents, the grandparents and anyone else who surrounds an autistic child can find greater success by giving them the right therapy. The challenge is that unless you're focused on providing that therapy and ensuring it's the right therapy, kids with ASD can struggle over the long term because they didn't get started in the beginning.
That's for younger children, but these are not the people that we as behavioral health professionals typically see. We're more likely to see a child who has already been diagnosed with autism who's suddenly not functioning to the level they were functioning in their world or environment or suddenly their behavior changes. We need to recognize that autism doesn't change dramatically. Autism doesn't get worse. But just like any person, the emotions of a person with autism may change. When there is a sudden change, it shouldn't just be ascribed to autism. We need to look at this as a clue for something else.
Can you mediate the symptoms of ASD with behavioral therapy? Yes, but it's important to remember that this is not going to cure autism. Just as important as therapy is that if you see an autistic child who's getting worse, such as getting more abusive to siblings or refusing to do certain things they did before, you must recognize that this could well be a behavioral disorder and take the steps to get this person the diagnosis and therapies they need.