When Advocates for Autism Massachusetts (AFAM) organized its “Annual Autism and Acceptance Day” this past April at Boston’s State House, they wanted to achieve two things: a deeper acceptance of people with autism spectrum disorders (ASDs) and a push for legislation that assists those affected.
The event – which drew nearly 200 state representatives, families and advocates – came just weeks after the Center for Disease Control released a new study, “Changes in Prevalence of Parent-Reported Autism Spectrum Disorder in School-aged Children: 2007 to 2011-2012.” The report, co-authored by the Health Resources and Services Administration, cited an increase of diagnosed ASDs in the past year for children ages six to 17. Both AFAM’s gathering and the national report reinforce the need for increased services for children with ASDs.
The new study – based on parent-reports – estimates that one in 50 children were diagnosed with ASD, a higher number than 2007, one in 86. The rate also grew for boys and adolescents aged 14-17 years and children who were diagnosed in 2008 seemed more likely to have a milder form than those in 2007. The report linked the increase to ASD diagnoses that had before gone undetected.
“It’s not an epidemic but researchers are picking up a lot more mild cases,” says Suzanne Phillips, Ph.D., psychologist and professor at Gordon College in Wenham, Mass. “It is certainly the case that autism diagnoses aren’t as stigmatizing as they used to be, which is true for Asperger’s syndrome.”
Michele Casoli-Reardon, M.D. a child psychiatrist in Salem, Mass., agrees. She believes there is not necessarily an increase in autism but that more physicians are diagnosing kids on the mild end of the spectrum.
“I don’t see this (study) as bad news, but good news,” Casoli-Reardon says. “It means children are getting diagnosed earlier, which means they’re getting intervention and treatment earlier that can make them more likely to succeed in school and social settings. In fact, this increase simply means more children can stay in the mainstream whereas before they were marginalized or bullied.”
Both Casoli-Reardon and Phillips pointed to the American Psychiatric Association elimination of the Asperger’s label from its new diagnostic manual – released in May 2013 – because it is difficult to distinguish between high functioning autism and Asperger’s. Both include symptoms such as speech delays and social anxiety, but don’t reflect a child’s intellectual capabilities. Because the ASA is concerned about diagnostic reliability and many see Asperger’s as a mild form of ASD, the group deleted it.
“Parents may be at a place now where they hear the Asperger’s label and don’t freak out as much,” Phillips says. “I think the ASD label will still be harder to swallow.”
As parents and professionals continue to identify ASD symptoms, they also are more likely to seek treatment, as Casoli-Reardon suggests. That’s because of awareness efforts from groups like AFAM and others working to increase access and reduce stigma.
Still, more work remains in Massachusetts. In the March 2013 report from the Governor’s Commission on Autism, it’s clear resources must coincide with increasing statistics.
“Given that autism prevalence is increasing at an alarming rate, the Commonwealth must move forward with a plan to better manage services and supports for people on the autism spectrum so that they can realize their potential and participate fully in the community,” writes Barbara A. L’Italien, chairperson for the Massachusetts Autism Commission, in the “Report from the Governor’s Special Commission Relative to Autism.”
L’Italien concludes that far-reaching gaps in support services still exist, requiring a comprehensive state-wide approach. Individuals with autism of all ages, L’Italien says, need a single entity to provide comprehensive information and referral support. Mental health services should be tailored and widely available, while eligibility for adult services should be based on functional ability rather than IQ. Housing, job coaching and case management are all crucial to “realizing their potential.”
Addressing the needs of children remains essential. Phillips says another gap is the availability of child psychiatry services as well as assistance in managing medications.
“There aren’t any medications for autism per se. Those on the mild and severe end of the spectrum are on medications for different reasons, such as managing social anxiety or depression,” she says. “Prescribing meds to kids whose bodies are changing is really complicated and primary care physicians usually feel out of their league. It’s (still) difficult to find child psychiatry care in Massachusetts.”
By Jo Kadlecek