April is National Autism Awareness Month, so we asked Suzanne Potts, executive director of the Autism Society of Central Texas, to tell us more about the disorder and how it affects families.
AF: What is autism?
SP: Autism is a neurological, developmental disorder typically seen in kids as early as 2. It’s not something that you grow out of. It’s treatable. You can manage symptoms, which is why early intervention is really important.
AF: How common is it?
SP: Autism rates are growing. We’re at about 1 in 68 in the general population. Boys are four times more likely to be diagnosed with autism than girls.
AF: What are the symptoms?
SP: They always say, “If you’ve seen one child with autism, you’ve seen one child with autism.” Not all kids with autism have intellectual deficits. Not all kids with autism have speech and language issues.
Autism has some trademarks like repetitive movements, speech and language delays, communication delays, obsessive interests and focus areas and the need for “sameness.” It manifests differently in severity and depth of symptoms.
It’s easy to overlook those red flags or not be sure. For example, any time my son had a Big Wheel, he would turn it upside down and spin it. We thought, “He’s an engineer like his grandpa.”
Early intervention is so critical. If you are concerned, talk with your pediatrician and get a referral. There are developmental pediatricians and neurologists, folks in town that can do a full assessment and look a little bit deeper.
AF: What early interventions can help?
SP: The first thing you should do if your kid is not talking is get to speech therapy. There’s occupational therapy and physical therapy, if you have fine motor or gross motor delays. Balance and coordination is sometimes an issue.
But the biggest is applied behavioral analysis, or ABA, therapy; it’s evidence-based treatment that restricts negative behaviors and encourages positive behaviors. So, for example, my son doesn’t make good eye contact. He’s working with an ABA therapist to look at her and respond the first time, instead of ignoring and looking away.
We don’t prescribe any single treatment. We understand that families want to have a choice. We encourage families to work with their medical professional and choose the best option for their family member.
AF: What are the challenges for an adult with autism?
SP: There are hundreds of thousands of kids transitioning out of the school system, and there’s not a strong system in place. They may be able to function in a university or community college.
Trying to help with social skills is ongoing. Individuals with autism don’t read social cues well. Our kids are four times more likely to be the victim of a crime. Housing is a whole other issue. If you can’t get a job or can’t go to school, where do you live?
Employment is a huge issue. We talk a lot with employers about providing accommodations. Most accommodations don’t cost anything: adjusting the work schedule, allowing the use of a different computer monitor, letting them communicate electronically or letting them work independently.
Depending on their level of skill and communication, people with autism can do anything. We’ve seen some kids do really well. There are so many great examples of young adults who are thriving and doing quite well.
AF: What’s it like to have a child with autism in the family?
SP: It’s hard, as a parent. We see a lot of fatigue and exhaustion in our families. Some of our kids don’t sleep well. They’ve got food issues. Every experience, you have to be ready for and explain and plan. Sometimes you just want to stay home and not worry about it. We see a lot of isolation. We want our families to go out and experience the world like anybody else.
We love sensory-friendly movies, for example. We have a partnership with AMC Theaters. Once a month, they dim the lights, but don’t completely darken the room. They lower the volume. You can bring in your own food if you have dietary restrictions. Kids can walk up and down the aisles and it’s no big deal. It’s so nice.
The challenge for loved ones and siblings is often great. We have a lot of hurt feelings with families that get excluded and left out. We don’t get invited to birthday parties, and that’s heartbreaking.
Things like kids going to a dance or getting their driver’s license or graduating can be painful for some families, because that may not be something that they can experience in the same way or at the same time.
AF: How about advice for the rest of us?
SP: If you know children with autism, engage them and welcome them. Include them in birthday parties. Include them in events, even if they have challenging behaviors or don’t communicate well. They still have feelings.
Always remember that they are a person first, even if they’re non-verbal. They’re still a person who has thoughts and feelings and emotions. So if you’re not sure how to talk with someone with a disability or with autism, ask their family or loved one or ask them directly. “How’s he doing? How is therapy going?” Just be as inclusive and welcoming as possible.
Have play dates and invite him to birthday parties. And if a child does melt down at a birthday party, it’s nice to have someone say, “Can I do anything? Can I help you?” Just be there with him. Don’t give him the stink eye.
“Different, not less” is our national slogan.
Sherida Mock is editor of Austin Family magazine.