State system shortchanges children with autism
February 12, 2013
WE NEED TO DO BETTER in ensuring that children with Autism Spectrum Disorder (ASD) who are in the custody of our state social services system are getting access to the right level of treatment and support.
In the years I have spent working in the field of social services and child welfare, I have seen a significant increase in the number of youth who have ASD. ASD refers to a group of complex developmental brain disorders that impact social interaction and verbal and nonverbal communication.
Many of the youth involved in the child welfare or mental health systems are not properly diagnosed with ASD, or were diagnosed earlier in life and somewhere along the line their diagnosis was overlooked. A diagnosis can get overlooked because state and federal systems that work with children are not currently equipped to serve children with ASD. The one exception is the Massachusetts Department of Public Health’s early intervention system for children under three years old, which provides a specialized team of experts and services to treat children who likely have ASD, which cannot be definitively diagnosed until age three.
While both the child welfare and mental health systems have qualified clinicians that treat children with trauma and mental health disorders, such as post-traumatic stress, anxiety, or bipolar disorder, they do not possess the expertise to easily recognize or treat ASD, which requires a different specialization.
Many of the youth with ASD, who are under the care of the child welfare or mental health systems, have also been traumatized through physical or sexual abuse or neglect, or have co-occurring mental health diagnoses. In addition, the lack of resources available to child-serving agencies to recognize and handle the clinical complexities of an ASD diagnosis can create barriers to child growth and development.
As a result, youth in foster care and the mental health system who are diagnosed with ASD often experience challenges that prevent them from making a successful transition to adulthood, with many becoming far more susceptible to homelessness than many of their peers. This situation not only creates great hardship for these individuals down the road, it also creates greater expense for our Commonwealth.
Ironically, when given the proper support and services for their ASD and when taught the necessary skills in ways that they can learn and utilize them, these individuals are some of our most successful youth. They are caring, focused, loving, resourceful, and less likely to get into trouble. They are saddened and pained when they have no family to visit during the holidays. They strive to find and maintain employment and complete their schooling, despite often being misunderstood, socially awkward, and bullied.
When these youth receive appropriate support, they are highly likely to take on the challenge of securing employment and finding housing, and using their adult supports effectively. They are often the youth most likely to stay at their programs and spend time with staff and peers.
Unfortunately, there are children with ASD who are on Medicaid, which is not accepted by many ASD specialty health care providers due to its lower reimbursement rates and longer claims-payment cycle.
The process of understanding the treatment systems for even the most savvy parent or provider is at best daunting and requires hours upon hours of navigation, learning, and advocacy. The school systems offer some services, but they are limited and often provided only if the child resides long enough in a school district for that district to realize there is something different in that child’s learning style.
Children who have ASD and in the care of their parents will likely benefit from advocacy, as their parents are their biggest supporters. There is a decent chance that a parent will fight to figure out the complexities of acquiring the proper treatment for their child who has ASD.
This is not usually what happens for children who move from foster family to foster family or program to program, often not residing in any one place long enough for anyone to figure out exactly what is going on them or to advocate for appropriate services on their behalf.
For children in foster care, they exist in a system where ASD is barely understood, or noticed. They do not have advocates who understand or are familiar with ASD. They are being lost in the shuffle of a world whose expertise is solely trauma, neglect, and mental health.
Currently, some programs in the child welfare system have moments where almost 50 percent of the youth residing in their programs are turning 18 and have confirmed or questionable diagnoses of ASD. Often clinicians are unable to make a definitive diagnosis because there isn’t enough information available, and that diagnosis is considered questionable with the goal of gaining more information to make a definitive decision. One recent survey of youth residing in residential programs showed that approximately 35 to 40 percent of the youth had an ASD diagnosis.
It is time to pay attention and expand our thinking. It is time for the worlds of child welfare and mental health and the state systems and agencies who work with youth to understand the differences between trauma, mental health issues, and ASD.
Danielle Ferrier, MBA, LICSW, is executive director of Rediscovery at Justice Resource Institute.