Effective management of Asperger’s (AS) and High Functioning Autism (HFA) should focus not only on the affected youngster, but also on the family. Although moms and dads once were viewed erroneously as the cause of a youngster's Autism Spectrum Disorder, it is now recognized that they play a major role in effective treatment.
Having a youngster on the autism spectrum has a significant effect on a family. Parents and siblings of autistic kids experience more stress and depression than those of kids who are “typically developing” – or even those who have other disabilities. Supporting the family and ensuring its emotional and physical health is an extremely important aspect of overall management of AS and HFA.
Doctors, therapists and other health care professionals can provide family support in the following ways:
- assisting parents in advocating for their AS or HFA youngster's special needs
- assisting parents in advocating for the sibling's needs
- assisting parents in obtaining access to resources
- educating them about Autism Spectrum Disorders
- providing anticipatory guidance
- providing emotional support through traditional therapeutic techniques (e.g., empathetic listening, talking through problems, etc.)
- training and involving parents as “co-therapists”
In some cases, referral of moms and dads for counseling or other appropriate mental health services may be required. The need for support is longitudinal, although the specific needs may vary throughout the family life-cycle.
One of the main techniques for assisting parents is to help them access needed ongoing supports and additional services during critical periods and/or crises. Such assistance includes natural, informal and formal supports.
Natural supports include:
- extended family members
- friends who can help with care-giving and who can provide psychological and emotional support
- neighbors
- religious institutions
- spouses
Informal supports include:
- community agencies that provide training
- recreational activities
- respite
- social events
- social networks of other parents of kids on the autism spectrum
Formal supports include:
- in-home and community-based waiver services
- Medicaid
- publicly funded, state-administrated programs (e.g., early intervention)
- residential/living services
- respite services
- special education
- Supplemental Security Income benefits
- vocational services
The breadth and depth of services vary, even within the same state or region. Few services exist in many rural areas, and public programs may have long waiting lists.
Sibling support groups offer the opportunity to learn valuable information and skills while sharing experiences and connecting with other siblings of kids on the spectrum. Although the research on support groups for siblings of AS and HFA kids is difficult to interpret (due to study-design problems and inconsistent outcome effects on sibling adjustment), these groups generally have been evaluated positively by participating siblings and parents.
Because each state has organized its services and access mechanisms differently, health care professionals and parents must learn their own state's unique rules to access supports by contacting the state or county offices of the states’ Department of Health and Human Services, local mental health facilities, or the state developmental disabilities organization. Also, school district special education coordinators, national autism and related developmental disability organizations, local parent advocacy organizations, and early intervention administrators often are knowledgeable about various programs and their respective eligibility requirements.
