April is National Autism Month, and with 1 in 68 children affected by autism, chances are you or someone you know is affected by this disorder.
When I was growing up, autism was not talked about in our schools, playgroups, or churches . . . until the blockbuster movie, Rain Man, was released. This film, starring Dustin Hoffman and Tom Cruise (pre-couch jumping, Katie Holmes, and Scientology) tells the story of Charlie Babbitt (Cruise), a self-absorbed L.A. car dealer/hustler who finds out his father died and left $3 million dollars to a brother he never knew existed. Not only that but this brother, Raymond (Hoffman), is autistic.
Rain Man moved audiences across the nation and triumphantly raised awareness for autism. It revealed:
- a day-in-the-life of autism (“Four minutes till Wapner”)
- the strengths and weaknesses of a person with autism (remember the toothpicks?)
- the enormous amount of energy caretakers expend on their autistic loved ones
- and much more . . .
So what exactly is autism? According to Autism Speaks, a national organization promoting understanding, research, and solutions for those with autism and their families, autism is a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. There are many types of autism, and they are caused by different combinations of genetic and environmental influences.
Erin* is a wife, mother, friend, and businesswoman whose life took an unexpected turn when autism entered her life twelve years ago. Her oldest son, Finn, was about two-and-a-half-years-old and she noticed one of the biggest warning signs: loss of language.
“He’s my firstborn so with your first you write down everything they say,” Erin recalls. “I realized around age two-and-a-half . . .we were [serving as missionaries] in Turkey so the fact that he wasn’t saying a lot wasn’t super concerning because he was hearing two languages. But he said thirty words and then it dropped to six words. The loss of language is what tipped me off.”
According to Autism Speaks, early detection and treatment can improve your child’s long-term outcome. Aside from loss of language, some red flags to watch for include:
- No big smiles or other warm, joyful expressions by six months or thereafter
- No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
- No babbling by 12 months
- No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
- No words by 16 months
- No meaningful, two-word phrases (not including imitating or repeating) by 24 months
- Any loss of speech, babbling, or social skills at any age
Erin traveled from Turkey to Waco and attended a conference with Antioch Community Church. It was there that she met someone who suggested she reach out to Janice Stewart, who worked in the Communication Sciences and Disorders Department at Baylor University. Today Stewart is a full time supervisor for the Baylor University Clinic and the Director of the Language Articulation Preschool, as well as a Senior Lecturer.
“It really is a God story,” Erin says. “I went back to Turkey and we made a film of Finn and sent it to Baylor. We got their professional opinion—not an official diagnosis but enough for us to pray and come [back to Waco] so we could send Finn to Baylor.
“At first, it was just so overwhelming,” Erin recalls. “[Autism] meant that we had to leave Turkey, the land we loved. It was the loss of all that. And then we realized that [autism] was an all-encompassing disorder. It wasn’t just language, it was medical, behavioral, and more. We thought we would just do speech pathology and it would all be over. ‘God heal our baby’ was the cry of our hearts.”
Erin and her husband, Chris, pursued doctors, therapists, specialists, various treatments, and continuous prayer over the next few years as they learned more about autism. For Finn, there was no quick fix, only small, slow changes that were a result of consistent, hard work and answered prayers.
“It was a long, slow process,” Erin remembers. “We used Applied Behavioral Analysis (ABA), which was super helpful for him getting more language. He then started in the preschool program in the Baylor speech pathology program, but he had more behavioral issues that they weren’t qualified to work on. So he went through PPCD (Preschool Programs for Children with Disabilities) [in public school] for two years. During the second year they mainstreamed him; in the morning he went to special ed and in afternoon they mainstreamed him. Then in kindergarten they mainstreamed him entirely, which is what we wanted,” Erin explains.
“By the time Finn was five he no longer qualified for the autism diagnosis. By the time he was in kindergarten he had no evidence of autism at all. He’s still a quirky kid. Social things are not his best suit; but most of his teachers and friends don’t notice. He’s just kind of nerdy,” Erin jokes with a lighthearted laugh.
As for Finn’s future with autism? “We really feel like he’s healed,” Erin says. “We did all the right therapies that we needed to do. We saw progress. We felt like, ‘God, you’re the only one that can really heal him.’”
In hindsight, Erin sees how autism took its toll on her marriage and herself. “It was super hard on our marriage because I think men and women just deal with [autism] differently. I threw my world into Finn and his therapy and into getting him better. I read books, I followed diets, I found specialists. Men are just able to separate themselves. Chris was able to go to work. It’s not that he didn’t care. He did. He just dealt with it differently. It was super hard on us maritally.”
Erin also sees the affect autism has had on her as a mom. “When Finn was younger, I was a stressed, anxious mom. Every time he got sick it was a bigger deal. With my second baby I was hyper careful. I’m so much more laid back now,” Erin laughs with relief.
“I’m also super thankful now,” she says reflecting. “Every word with Finn was a huge milestone. Everything was worth celebrating. He was also a huge sensory avoider and I remember him being able to go down a slide and I was jumping up and down because one day he slid down the slide. God has blessed us with every milestone. I don’t take things for granted like I probably would have before Finn was born.”
“[This experience] has marked us forever. It’s forever going to be the testimony of our lives. As much as I didn’t like going through the fire, it’s never going to be the same,” Erin says. “Some days when I think, ‘God, there is nothing to be thankful for,’ I remember we have everything to be thankful for. We got our baby back! In life, we never want the trials; but the other side is really sweet.”
Erin also has some really great advice and encouragement for other moms: “If anyone has a newly diagnosed child, jump in there and be your child’s advocate. You can’t farm them out to therapists and schools. Learn how to do the therapies. Trust your gut. We know our child the best.”
For more information on autism, visit:
*Names have been changed to protect privacy