Autism and Race
Autism is a devastating diagnosis for families. For many families of color, the battle may be just getting the right diagnosis.
In the autism community a little researched but widely recognized phenomena has been taking place. Minority children are being diagnosed much later with autism than their white counterparts. A 2002 study of children receiving Medicaid found that a white child with autism was diagnosed at 6.3 years, while for African American children the average age was 7.9 years. Another study found that minority children were underrepresented among children referred to agencies and organizations for diagnosis and treatment of autism. This underrepresentation has been linked to biases in professional perceptions of children within the medical community.
It is known that early intervention is one of the key components to treating autism. With minority children being misdiagnosed or going undiagnosed for years, their parents may face much more difficulty in combating the symptoms of this disorder.
Researchers also believe that the socio-economic position and lack of understanding regarding autism among some minority groups, negatively impact their ability to get or ask for help.
In response, some organizations have launched initiatives to aid minority families with autistic family members. TASH (formerly The Association for Severely Handicapped) in conjunction with the Autism Society of America (ASA) is offering access to human rights organizations to assist families in getting the resources they need. Through a grant from JK Kellogg, TASH is also providing scholarships to national conferences for people of color and their families.
Resources Available for Children with Autism
There are no federal or nationwide resources that specifically target minority children with autism. However for families with limited income or resources, there is help available. With many children of color impacted greatly by poverty in the United States, their families may be eligible for free or low cost assistance from their state or the federal government.
What resources are available for children with autism? Below is a list of services for which some families with autistic children may be eligible.
- Supplemental Security Income which is administered through the Social Security Administration offers financial assistance to low income families with disabled children under 18. Families must provide proof of a mental or physical condition which is severe enough to impair a child's activities throughout his or her lifetime. The financial amount provided varies from state to state.
Portions of the application can be completed online or through an in-person appointment at the local Social Security office.
- Medicaid provides free or low cost medical insurance to poor families. It is administered through most states' social services programs. Medicaid can cover the costs of speech, occupational therapy and Applied Behavioral Services (ABA) that are critical to treating children with autism spectrum disorders.
- Respite Care gives families with disabled children free or low cost babysitting or adult care through specialized agencies. This allows the other family members time away while their disabled child or adult family member is under the care of a highly trained caregiver. Contact the agency in your state which oversees disabled programs and resources for more information.
- Early Intervention Programs were established for families with children under the age of two who've been diagnosed with autism. Some states or local school districts offer early intervention programs. These programs are free and usually include onsite occupational therapy and speech therapy. Many school districts also begin preschool at age 3 for special needs children and have extended school year services (summer school).
- Support Groups can be invaluable to families with a new autism diagnosis. In many communities there are support groups for single parents, siblings, grandparents, and disabled parents. Information can be accessed online, through the school district, and in the local phone book.
Funding For Autism Resources
Due to the current financial crisis, many agencies and organizations that assist autistic individuals have had to scale back on their services and outreach. Unfortunately, at the same time those needing resources have increased dramatically, especially within the minority community.
For families wondering what resources are available for children with autism other than the ones listed, they should contact their local social services agency for additional information. Organizations like Autism Speaks, Autism Society of America, and Defeat Autism Now (DAN) also offer a wealth of resources.
Beeger, Sander et al, "Under-diagnosis & Referral Bias of Autism in Ethnic Minorities", July 2008 SpringerLink.com
Megan, Kathleen and Cloe Poisson, "Autism and Race: Parents, Advocates Seek more Prompt Diagnosis of Minority Children", May 2007 Hartford Courant