(This is the fourth story in a series on special needs in early education.)
Could autism overwhelm federal programs that support children with disabilities?
Autism appears to be nearly everywhere these days - 1 in 110 children are now diagnosed with the disorder, according to the Centers for Disease Control. It is on “Oprah,” national magazine covers and the minds of parents.
Now there are signs not every child that could have autism is getting diagnosed. Researchers found lower rates of diagnosis among African American and Hispanic families and suggestions that parents’ education may play a role in getting a diagnosis, according to a commentary.
What would happen if every family had access to high-quality autism screening and intensive services, which can total more than 20 hours a week? Would the system fall apart? These are among the questions raised by the commentary “Is Autism the Disability that Breaks Part C?”
We worry, however, that as professionals continue to make recommendations for intensive early intervention for children with ASD (autism spectrum disorders), the programs are going to crumble under the additional burden. – “Is Autism the Disability That Breaks Part C?” Journal of Early Intervention, 3/10.
The fact is the recent spike in autism diagnoses is already straining the system. Parents of autistic children run into waitlists, a shortage of therapists and health insurance that often fails to cover tens of thousands of dollars in therapy a year. This occurs even in cities such as Seattle, which are home to cutting edge research and support.
The commentary wonders whether this increase could strain or break federal support for disabled infants and toddlers, known as Part C.
One of the most important issues it raises is a divide between haves and have nots within the autism community.
We worry, however, that establishing an early and accurate diagnosis may be related more to where a family lives, whether the parents went to college, and what medical insurance they have than to the young children's behavioral profiles. To the extent that our perceptions are valid, something in "the system" is not working. – “Is Autism the Disability That Breaks Part C?”
Schwartz also suggests there is a gap between families who get a diagnosis of autism for their child and those whose children have another type of developmental delay.
“There is also a divide between families who have ASD (autism spectrum disorder) and those who do not,” Schwartz wrote in an email. “…But we need to provide services for all children that are high quality. Unfortunately… the way schools are funded that is becoming increasingly difficult.”
The co-authors write in their commentary they are far from opposed to intense early intervention for children on the autism spectrum. In fact, they point out they developed one of the models. Instead, they write the system needs to be changed to ensure all families raising a child with a disability get support.
Co-author Ilene Schwartz, who adds in the story she is hopeful the system will not collapse, has ideas to ensure the system doesn’t break.
One of her most interesting proposals is that high quality child care could help manage the burden.
“If all children had access to high quality child care, then we may be able to provide fewer hours of specialized instruction. High quality child care where children are engaged and have high quality and consistent interactions with caring adults, supported by some specialized intervention and some training for parents and other caregivers may be sufficient and it would certainly be more sustainable and more child friendly,” Schwartz, director of the University of Washington’s Haring Center for Applied Research and Training in Education, wrote in an email.
Schwartz raises more questions than answers – not surprising given we don’t know what causes autism or how to cure it.
It sounds like we need to start answering some of these questions before the system breaks down even more.
Article: “Is Autism the Disability That Breaks Part C? A Commentary on "Infants and Toddlers With Autism Spectrum Disorder: Early Identification and Early Intervention, “by Boyd, Odom; Humphreys, and Sam.” By Ilene S. Schwartz and Susan R. Sandall, University of Washington, Seattle. Journal on Early Intervention, 3/10.