Autism Awareness Month
By Karen P. Carlson, PhD
Is Autism Awareness Reaching Disadvantaged Families?
April is Autism Awareness Month. In the 1970’s the Autism Society launched a nationwide effort to promote autism awareness, with the goal of ensuring access, understanding and well being (Autism-Society.org). Their campaign was adopted by Congress in 1984 and punctuated by the release of the autism ribbon in 1999. The Eighth Annual World Autism Awareness Day took place on April 2, 2015. This day is dedicated to increasing public awareness, providing celebrations for families and supporters, and fund-raising events.
Today autism affects 1 in 68 children, resulting in the Center for Disease Control identifying autism as a national health crisis. Ivar Lovaas created the first hopeful treatment for autism using Applied Behavior Analysis (ABA) in the 1970's. Until then, the disorder was poorly understood. Pioneers in the field such as Hans Asperger, Leo Kanner and Bruno Bettleheim believed that autism was caused by rejecting parents or "refrigerator parents." Children and families were marginalized and criticized for their children's disruptive behaviors (this continues today in some cases). In 1964 Dr. Bernard Rimland, parent of a child with autism, wrote Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior (East Norwalk, CT: Appleton-Century-Crofts, 1964). This landmark work brought forth the recognition of autism as a brain-based disorder, distinguished it from childhood schizophrenia, and spawned the awareness movement.
Intensive treatments for autism are expensive and can exhaust the resources of families and schools. Families with income can spend $17,000 more on their child with autism than siblings. ABA services for any one child costs approximately $40-60,000 per year (Center for Disease Control). Families can incur considerable non-reimbursable costs such as medical copays, equipment, independent evaluations, communication devices, specialized childcare, therapeutic activities, house modifications, supplements, vitamins and special diets. It is hard, if not impossible, for some families to have two incomes due to the considerable time needed to care for a child with autism. Families experience higher levels of stress, divorce and health problems than the general population.
However, advances have been made in our understanding of autism and how to treat and manage it. Millions of dollars every year are invested in building this understanding. Yet some sectors of the autism community remain underserved. Low income parents have more difficulty understanding autism and advocating for their children. These children tend to be diagnosed at a later age when early intervention is less effective (0-3 being the critical period for intensive therapy). Until recently, poor families could not access insurance-based services because it was only offered through private insurance. Additionally, low-income parents may not have access to knowledge about alternative treatments, creative funding, and social networking, or be able to afford equipment such as laptops and communication devices. Furthermore, caregivers may have significant health risks which can affect their parenting ability. There is a significant lack of programming and support for individuals who "age out" of school-based support. Many of these youth and their families fall into poverty.
Access issues are beginning to be addressed on the state and federal levels. In August 2014, Massachusetts passed the Autism Omnibus Bill (Chapter 226, malegislature.gov). This bill created the following improvements in access for individuals with autism and other intellectual disabilities:
- Mass Health (Medicaid) must now cover ABA in-home therapy for youth under the age of 21;
- DDS is now a resource for adults with autism;
- Families can start tax-free saving's accounts (ABLE) to cover autism-related expenses;
- Voluntary autism credentialing of special-education teachers;
- Coordination between DMH and DDS for individuals with dual diagnoses; and
- The establishment of the Autism Commission as a permanent government entity.
These changes have the potential to significantly improve the lives of families affected by autism. But there remains the issue of access for the most disadvantaged families. Some next steps might be to provide free educational advocacy, internet access, free case management for the most needy families, subsidized therapeutic activities (LUK’s TREK program and Hourly Respite for example). Until more resources are provided to the most at-risk individuals, autism will continue to be a national health crisis. If you are a parent struggling with these issues or know someone who is, please note the resource links shown below.