Coping with the mysteries of autism
Sunday, May 04, 2003 (15:20:56)

Posted by Sylvia

By Elizabeth Martin The Press-Tribune

When a child has autism, simple things tend to be forgotten. Endless rounds of therapy, fear and the social stigma attached to autism can isolate a family – it can even isolate the people within the family, as most of the attention is focused on the autistic child. Even getting out to the park is a major task. But Anne Marie Arrow and Joey’s Friends are out to change that. With her 4-year-old son Joey diagnosed with autism, Arrow knows firsthand the fear and confusion surrounding the condition. Joey Arrow was a fussy baby, Arrow said. As he got older, he would repeat words but rarely initiated them. He wasn’t pointing and didn’t respond to others. “At 13 or 14 months, he never called out to us,” she said. “You could not hold him – he resisted.” Autism is a developmental disability that shows itself during the first three years of life. Its diagnosis is problematic, but early diagnosis is critical, Arrow said, to getting the child treatment. Diagnosis is complicated because the condition itself is complicated; the range of behaviors associated with autism and the degree to which the child is disabled vary, according to the Autism Society of America. There are common characteristics: resistance to change, difficulty in expressing needs, repeating words rather than responding, inappropriate displays of emotion, aloofness, limited eye contact, hyper-sensitivity to pain or other stimuli and uneven motor skills. “There’s a big range of what’s typical,” Susan Connolly, who teaches autistic children, said. “Some children begin developing normally, but then lose skills at about 15 months.” “They’re highly sensitive to sounds or have low sensitivity,” said Arrow, a Rocklin resident. “They don’t feel pain like we do.” Parents with autistic children learn coping behaviors early. “As a mother, you know really quickly what a child wants or doesn’t want,” Arrow said. Because Joey was her fourth child, Arrow knew there was something not quite right with him, and she was lucky enough to have a pediatrician who not only took her concerns seriously, but was able to make an early diagnosis. According to Arrow, parental concerns are often brushed aside, and when a diagnosis is made, a lot of time has elapsed. “That time that they lose while waiting is so valuable,” she said. “The brain has such an ability to compensate for what they’ve lost.” But the key is getting them into therapy early. The other key is balance, Connolly said. “An incredible sadness and a little bit of hopelessness descends on the family,” she said. The focus is on the autistic child, knowing the early years are critical, but this leaves the siblings out, and can burn out a parent. “Because we don’t get positive feedback from (the autistic child), we stop giving it,” Arrow said. “But you have to laugh and be goofy. It’s OK to take care of yourself and important to have fun with the other siblings.” And there’s a different point of view that can be valuable. Arrow’s 19-year-old son has been a great help with Joey, Arrow said, and she pointed out that always letting Joey have his way is having negative results. “Now we’re teaching Joey how not to be a tyrant,” she laughed. Arrow started Joey’s Friends specifically to create a support group for parents that didn’t seem to be available in the area. It’s important to know what services are available, where they are and how to pay for them, since medical insurance isn’t usually very helpful in this area, she said. And there’s the empathy factor, the “been there, done that” support that helps parents of newly diagnosed autistic children cope with the sudden onslaught of emotion. “The best knowledge comes from other parents,” Arrow said. “And there’s such a relief on their faces when they can relate a story most people would be horrified by. (We) can laugh and do them one better.” The other benefit is in social outings. Because autistic behaviors tend to draw negative attention, most families would just as soon forgo picnics and other family activities. But there’s safety in numbers. “The kids are who they are,” Arrow said. “And if the child doesn’t get out, he or she doesn’t learn social skills.” Autism is a condition few people know much about, but there are many myths and misconceptions, Connolly said. As for cause, there are theories, but no sureties. “It is commonly thought that there’s a genetic component that reacts to the environment,” she said. “There have been studies into mercury and vaccines (as causes). Science is not there yet. It’s really an unknown as far as cause,” Arrow said. What is known is that incidences of autism are increasing, at about 10 percent to 17 percent each year, according to U.S. Department of Education statistics. It affects an estimated two to six individuals per 1,000 population. Boys are four times more likely to be autistic than girls. And it’s not just a Western affliction – the incidence of autism is consistent around the globe. There is no predictive factor in terms of racial, ethnic, social boundaries, income, lifestyle or educational levels of the family, according to the Autism Society of America. Because so little is known about the condition, the Placer County Health and Human Services Department, Autism Spectrum Kids and Joey’s Friends are conducting an Autism Awareness Fair on Saturday at the Garden Hilton Inn in Roseville from 11 a.m. to 2 p.m. There will be more than 25 organizations and resources available for families. The fair is funded through a grant from the county’s Children and Families Commission. Contact Cindy Watson, autism resource coordinator, at (530) 886-3618 or Anne Marie Arrow at 435-3690. “We’ve coped by holding on to the hope,” Arrow said. “We haven’t dwelled on the negative. We work on having fun and doing things as a family.”