Autism afflicts thousands of children. Most, by a ratio of four to one, are boys. It is a complex and confounding disorder. Diagnosis is not always easy and the course of treatments can vary as widely as the needs.
Emotional and educational therapies have been reported to have helped some children. So too have changes in diet.
But as challenging as the disorder may be to the child, the demands of coordinating all the needs of the afflicted are as daunting to the family.
Six-year-old Jack McTaggart loves the water. His parents, Sean and Linda, fear if Jack were to wander away from them, his attraction to water could lead to danger.
That normal fear is made greater because Jack is autistic and has few spoken words. If he were to stray, he would not respond if called. They hope swimming lessons at their local Ankeny YMCA will help.
Jack’s older brother Max is also autistic. Max, who is nine, is only mildly affected. Jack is more severely challenged. Jack has a twin sister Josie, who is not autistic. As babies the twins were both developmentally on track.
Linda McTaggart, parent: "I can't even tell you when he really went downhill because I was so busy with the two and Max had been diagnosed so I was kind of worried about him at the time and then all of a sudden it just seemed like Jack just was miserable. That's what's hard, your child is you know developing right along and all of a sudden they just kind of go down. The earlier you can start doing intervention the better. That has been huge for Jack."
By the time Jack was two-and-a-half the McTaggarts were fairly certain he was autistic. They began to seek out help and that's when Iowa Public Television first met Jack in May of 2005.
It was a music therapy project at the Ankeny Academy of Music. The goal was to encourage vocal skills in children with language delays. Jack did make progress, becoming more attentive and responsive. Still when he started pre-school at age three, another early intervention, from the Area Education Agency formally diagnosed him as autistic.
Jack is now a kindergartener. IPTV added another chapter to his video diary recently when we recorded footage of Jack at Northeast Elementary School in Ankeny. Linda Pawson, his special education teacher, says language development is still a challenge for Jack who is now six.
Linda Pawson, teacher: "Jack right now is non-verbal. That’s how I would classify him. He does have some words but he's not using them to communicate so much as he's using them just to identify certain things around the room. Jack's strengths right now in the classroom are his letters and numbers."
Linda McTaggart, parent: "Where he's at now is, he is, he loves school. For him to take the numbers one through ten and they can be mixed up and he can line them up, a year ago I wouldn't have thought he could do that."
Linda Pawson, teacher: "It seems to be characteristic of children with autism that they do like numbers because it's always the same, it is something that Jack really likes. I think because it does bring him order."
Jack’s time in the special education classroom is well organized. He is prompted to check his schedule which guides him to his next task. He is given breaks as a reward. The breaks are timed and when Jack is directed back to work he does so willingly. We should note, normally there are four other students in the room. To avoid disrupting the class we videotaped Jack before the other students arrived.
Jack is in the special education classroom about 20 percent of the day. The rest of the time he is in mainstream classes and an associate teacher, paid for by the school district, is with him full-time. Jack still cannot count to 50, write basic sentences or read simple books as his peers can. But improving Jack’s academic skills is not the only goal.
Linda Pawson, teacher: "Social interaction is pretty much key right now and communication I would say."
Recently Jack began to use an assistive communication device called a Bluebird. These devices can cost from $1,000 to $10,000 dollars. And that highlights another challenge facing all parents of autistic children, and society; the cost of meeting these children's needs - now and when they are adults.
Linda McTaggart, parent: "Probably down the road when he's eighteen, nineteen, twenty if he's still where he needs fulltime care what do you do? Are there places that he can live that he can have help or he can go out and get a job and come back and live somewhat independently? That's probably, well, the biggest goal would be to have him live independently and the biggest fear is the same. Its your goal, but its your . . . "