Autism in Wisconsin: Rising numbers call for increased resources
When Christine and Eric Prigge's son, Gus, was 18 months old, they suspected something was amiss. Gus, who has a twin brother, did not respond to his name, made very little eye contact, didn't play with age-appropriate toys and seemed distant.
At the time, Christine expressed her concerns to Gus' pediatrician, but was told developmental disabilities in young children could not be diagnosed until 3 years old. At Gus' next appointment, Christine voiced her observations again and was again told that she would have to wait for a diagnosis. This time, Christine didn't settle for the doctor's response, and started talking to friends about her son's behavior.
"Six months later, I spoke with a friend who has a neighbor with an autistic child. She got names and numbers for us to call to get things checked out and the journey began," says Christine.
Today, Gus is 3 ½ years old and considered in the mild-to-moderate autistic range. The recommended treatment is 35 hours a week of intensive in-home behavior therapy, but because Wisconsin currently does not mandate insurance coverage for kids diagnosed with autism, the Prigges were forced to pay for Gus' therapy out-of-pocket.
Although both Eric and Christine are college graduates with professional jobs -- Eric is a fleet manager for Milwaukee Electric Tool Corporate and Christine is a middle school teacher -- the two professional parents could not afford the annual treatment costs that range between $30,000 and $70,000, depending on the number of therapy hours.
"Some Wisconsin parents are waiting years to receive help in the cost of treatment through the Wisconsin Medicaid Waiver, and out-of-pocket autism treatment is so expensive it is cost prohibitive for many Wisconsin families," says Kathryn Luttkus, grants manager of Easter Seals Kindcare Southeastern Wisconsin.
The Prigges turned to non-profit organizations for additional help, including early intervention with Easter Seals.
"Easter Seals has helped not only Gus but our family," says Christine. "Our friends at Easter Seals not only helped my son, but held my hand, listened to my concerns, felt my pain and helped dry my tears. I can't thank them enough for all they have done for us."
A few months after Gus' diagnosis, his twin brother Max was diagnosed with a milder form of autism called Pervasive Developmental Disorder Not Otherwise Specified.
"In many ways, Max was a much harder diagnosis to take. We had hoped that Max would help Gus through some of his challenges rather than having so many of his own," says Christine.
According to Easter Seals' statistics, there was a 200 percent increase in the number of children diagnosed with autism in the last 10 years, making autism more prevalent in kids than Downs syndrome, childhood diabetes and cancer combined.
"In Wisconsin, a child is diagnosed with autism every day," says Luttkus.
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My son is 6 now and it took us 2+ yrs (we started before he was 2) to just to get him DIAGNOSED. After diagnosis (age 4) I thought we were set to get him help. The WI waiver system for autism services makes me cry. My son just NOW is at the top of the list for intensive home services after 2 years on the list. We applied April 18, 2006, 2 weeks after his diagnosis. Our insurance excludes services for autism (developmental delay), and he was over 3 so wasn't eligible for birth-3 services. My goal now is that no other parent should feel alone in this. We live in central WI and it just shouldn't be this hard. My son isn't the first or last with Asperger's in this area, but my constant mission is AWARENESS. Earlier is better, knowledge is everything. Yes it difficult being a parent of an autistic child, but it's even harder BEING the autistic child. Accept, learn and encourage more, judge less! Easter Seals has helped our older son with sibling camps, and our younger one will go to Asperger's camp starting next year.
Yes, thank you for a great story. I am going through a similar phase with our son. We have a lot of questions, but no one to direct them to. Also, this story was more informative than this one (see link below), which was on the front page of CNN.com today. http://www.cnn.com/2008/HEALTH/conditions/03/31/autism.main/index.html
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