Each year, Andrea Melvin welcomes young adults with autism spectrum disorders to Manhattan Employment Services at YAI/National Institute for People with Disabilities, where she is supervisor. Having aged out of the school system, these young adults are often highly motivated to work and have excellent employability skills. “Many of the challenges that we help people on the spectrum to overcome are related to social skills, rather than work skills,” Andrea said. “A person may be highly qualified for a professional job, but if he can’t maintain eye contact, he may never make it past the interview phase.”
Andrea and her staff coach young adults with ASD and other disabilities on how to accept constructive feedback, work in teams and develop relationships with co-workers. “At YAI, we really strive for people to be integrated into their environments. People on the spectrum can have a hard time developing relationships and coworkers may have a hard time understanding their behaviors, which leaves them feeling isolated. We help them to pursue their dream careers at the same time as we help them tolerate a work environment.”
Finding and adapting to a job is just one of the many new aspects of adult life that confronts people with autism after they graduate from high school.
Good Planning is the Key to Transition
“When young adults with autism and other disabilities reach the age of 21, they are no longer entitled to the same services that they were in high school, which often leads them feeling anxious and unprepared,” said Tom Ott, a YAI social worker who helps people with disabilities and their families access services. “It’s important to work with people with ASDs and their families to devise a transition plan that will help them become as independent as possible upon graduation. Through a variety of YAI programs, including clinical services, information and referral, in-home habilitation, travel training and social groups, we help people with autism build the skills and confidence they need to function and succeed in the adult world. In addition, it’s essential to begin planning for residential support services as early as possible, while they are still in school.”
The transitional period is stressful for people with autism as they learn to find their way as adults and develop their place in the community. But it’s often just as discouraging for their families.
“There is a lack of coordinated knowledge about programs and services geared for adults and a lack of collaboration regarding services,” said Linda Walder Fiddle, Founder and Executive Director of The Daniel Jordan Fiddle Foundation. “It’s confusing and often overwhelming for families, and rightfully so—there are no more teachers or school staff to ask for advice. There’s not the same support system in the adult world.”
The Daniel Jordan Fiddle Foundation is a national organization focusing on the providing suitable and sustainable opportunities for young adults and adults with autism to participate in all aspects of community life.
“Because we develop and work with programs throughout the United States for adults on the spectrum, I know that families are in need of good information about the types of programs that are available in their community and how to access them, especially during transition,” Linda said.
Like the YAI/National Institute for People with Disabilities Network and The Daniel Jordan Fiddle Foundation, many disability service organizations provide families with help finding services, creating long-term plans and coping with transition. But for some families, the greatest antidote for isolation and lack of information comes from other families who have already been through the process.
“There is great value in having parents and people with autism who have navigated transition successfully to help support other families,” Linda said. “They can offer support, advice and perspective on potential pitfalls.”
Families Helping Families
Support networks established by families, which have existed for decades, offer many benefits in the areas of advocacy, navigating the system and coping. Further benefits are found when parents are formally trained as mentors in order to guide other families through the process of transition and other milestones. During an overwhelming time, they can offer support and perspective on finding employment or day programs; long-term residential and life planning; evidence-based health care options; social and sexuality training; and recreational programs.
The Daniel Jordan Fiddle Foundation has implemented successful peer-mentoring programs for people with ASDs. “There is great value in people on the autism spectrum mentoring one another,” said Linda Walder Fiddle. “The programs have enhanced social skills, empathy and self-esteem of the participants in our programs that embrace this model. We all need support in our lives, whether or not we have challenges, and it’s wonderful when individuals on the spectrum are empowered to share their own experience to help another person.”
Cultural and Linguistic Sensitivity
Helping underserved populations access information and services is one of the most compelling reasons for implementing parent-advisor programs. Numerous recent studies (Liptak et al., 2008; Mandell, Listerud, Levy, & Pinto-Martin, 2002; Mandell, Ittenbach, Levy, & Pinto-Martin, 2006; Mandell et al., 2009) have shown that people with autism who are members of racial and ethnic minorities are less likely to receive diagnoses, treatment and services than their white, English-speaking counterparts. According to a 2000 study conducted the United States Public Health Service, people of color are underrepresented within the field of mental health. Additionally, services may not reflect the cultural values, religion and beliefs of families. Because language and culture are intrinsic to who each of us is, providing culturally sensitive information to families in their first languages is essential for effectively accessing and utilizing services.
Being advised by informed, well-trained peers is also empowering. Studies have shown that peer-to-peer mentoring may help parents gain confidence, better cope with their circumstances, and develop leadership skills (Searcy & Lee-Lawson, 1995). Parents who have been mentored by other parents are also more likely to efficiently utilize the service-delivery system, seek out programs and resources and advocate for their loved ones (Cohen & Canan, 2006; Searcy & Lee-Lawson, 1995).
Knowledge is Power
Parent advisors can help families discern evidence-based theories and treatments from the glut of unproven programs available today. They can also help families understand their legal rights in the communities and states they live, as well as the benefits they are entitled to by the federal government. Many families with limited knowledge of English are unaware of federal and state benefits and programs for people with disabilities and their families.
A Model for Training
In order to be effective mentors, parent advisors should receive extensive training in the following areas:
- Autism spectrum disorders and autism resources available in the community and state.
- Evidence-based practices with regards to autism assessment and treatment.
- Empowerment and advocacy, in order to help families know their rights, advocate for services and become more self-sufficient.
- Legal and educational rights of adults with special needs.
- Cultural-linguistic competence, in order to advise families in a culturally appropriate way.
Service coordinators, social workers, support networks and parent advisors are all effective avenues for people with autism and their families to find their way in the adult world. More options create more opportunities for people to receive services and become active members of their communities.
“It’s really important that we honor the individuality of each person, listen to them and respect the wonderful diversity of those with autism,” Linda said. “We should focus on the strengths and talents of each other, and using this positive approach of support, we can overcome barriers and help people realize their potential.”