The face of autism: Parents want patience, understanding

Last month the Centers for Disease Control and Prevention (CDC) released the latest numbers on the rise of autism. The study identified that autism prevalence rose to 1 in 68. More specifically, the latest numbers reflect 1 in 42 boys and 1 in 189 girls as having autism spectrum disorder, also known as ASD.

To get a better perspective on the pervasiveness, in 2008 the numbers were 1 in 88; in 2006 the numbers were 1 in 110; and in 2000 the numbers were 1 in 166. This affects a lot of families. It's safe to say that someone in your family, maybe a friend or even a neighbor is touched by autism.

According to the Autism Speaks website, "Autism spectrum disorder and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors."

In other words, a person with autism may have difficulty with sensory stimulation and processing which may manifest itself with behaviors that seem quirky; they may interpret language very literally; they may be nonverbal; and they may be socially awkward for their age.

I asked parents what they wished other people knew about autism. Two themes emerged: the constant need to educate people on what autism looks like and the request for people to exercise patience when encountering or working with a person with autism.

I recently met Dana Hall of Naperville, who has two boys, 2-year-old Grady and 5-year-old Keller. Keller was diagnosed with autism when he was 2½ years old. Dana explains that she is still learning about raising a child with autism.

Dana has become acutely aware that she needs to be conscious of their surroundings every minute of the day so she can help Keller handle any sensory issues that might arise. Keller is a sensory seeker. He needs greater sensory input to focus on tasks. This is what is happening when you see a child with a weighted vest on or being held tightly in order to get his attention. He is also nonverbal, so, with the help of several therapists, she is working on learning to build communication methods with him.

When in public, Dana often finds herself explaining that her son has autism and apologizing for his behavior to strangers.

"We were in a restaurant and Keller threw something," she recalls. "After many apologies, I explained to the table next to us, who was giving us disapproving looks, that my son has autism."

She goes on to say "when a child is not acting the way people think he/she should, it looks like they are misbehaving. It's not bad discipline; it's just how Keller copes with his surroundings."

She mentions the stares and whispers. "I see and hear them. Sometimes I will say, 'This is Keller, and he has autism.' I want people to know what autism looks like so they will stop judging."

While Dana herself is learning what living with autism is like for Keller, she is always willing to explain it to others. Of course, there are some days that are better than others. It's always comforting when someone will say that they know someone with autism too.

Laura and her son Ricky, 28, of Naperville, have had a long and bumpy road. Laura remembers the early school years being extremely frustrating and difficult. When he was younger, Ricky couldn't express himself very well. According to Laura, the teachers were focused more on ways to help Ricky conform to what was going on in the classroom rather than adapting to meet his particular needs. Laura recalls one heartbreaking day when Ricky asked her, "Why can't I be me?" It was a constant struggle educating teachers on what Ricky needed.

Now an adult, Ricky is still a gentle soul who likes his volunteer job at the library putting books in order so they can be shelved, likes being around people, likes to bowl and loves music.

Laura finds that she is still educating people on what autism looks like when it comes to her son. Ricky's autism manifests through quirky behaviors depending on the day and the amount of sensory stimulation he is processing. He suffers from severe anxiety and his sequencing abilities make directions a little more difficult to understand.

Laura suggests that people be extra patient with someone with autism. "When Ricky is at his volunteer job, he just needs time to respond if answering a question, as he takes longer to process what is asked," she says. "If he is having a bad day, it's usually related to his own level of stress. He sometimes gets upset when he cannot understand something that has happened. He needs time to help himself to process things. That is what works for him."

Dana wishes "people would acknowledge that we are struggling, that Keller is struggling, and ask if there's anything they could do to help." If you make eye contact, she hopes people will smile sympathetically instead of scoffing.

"I was in the grocery store one time and Keller was really upset in the produce section and was hitting and biting Grady and me," shares Dana. A lady approached and told her that her own sons were that far apart in age too. She went on to ask Dana if there was anything she can do. "There really wasn't, but I was so grateful to have someone offer assistance instead of just stare!"

The face of autism is getting more and more familiar as the rate of diagnosis increases.

Parents of a child with autism don't want your pity or sympathy. They just want you to know what you are witnessing and ask a little understanding and patience.

Editor's note: Laura and Ricky were happy to share their story but asked that their last name not be used.

• Sherry Manschot is the marketing/public relations manager at Western DuPage Special Recreation Association. She leads a parent network of special needs families at WDSRA. Manschot can be contacted at sherrym@wdsra.com. More information about WDSRA can be found at wdsra.com.