5 Tips from Autism Parents About Adulthood
As your child with autism reaches adulthood, there are a few things to consider before they graduate from high school. These topics include the transition to adult services, college, job, or living situation - all covered in this post!
1| Focus on daily living skills.
A surprising number of teens with autism struggle with daily living skills – hygiene, riding a bus, shopping or preparing a meal. It’s important to focus on teaching and practicing these skills as a key to independence in adulthood.
2| Schools can help with preparing your child.
Preparing for the “transition to adulthood” formally begins in most states between ages 14 and 16 for students with an IEP. Usually that means the school team starts asking the student what they want to do after high school and connects them to the state developmental disability agencies.
3| There are many decisions to make.
There are so many types of questions you and your child will face. Should they apply for U.S. Supplemental Security Income (SSI), which provides financial support to low-income people with disabilities? Should parents seek legal guardianship? Laws governing guardianship of adults with disabilities vary by state. What types of job, housing, or other programs should they pursue? How does his state determine who’s eligible for such programs?
4| Services in adulthood are a winding road.
The promises and timeline of transition are often misleading. May wait months or years for help, or depending on where they live, may find themselves ineligible for disability services. The programs may not always fit the student. Qualifications can be based on IQ (intelligence quotient) cut-offs, sometimes requiring an IQ below 70, often considered the dividing line between intellectual disability to qualify for the full range of disability services and supports, including housing. Up to a half million people with autism will reach adulthood during this decade. Systemic issues with the state developmental disability agencies. Case management can be handled by a different contractor than job training. It’s really segmented. Vocational rehabilitation services, which are designed to help people with disabilities become employed, are a hit or miss. Long waiting lists for housing. As of 2012, more than 300,000 people with intellectual and developmental disabilities were on waiting lists for residential services.
5| You can make your own plan.
Some programming in states allows for families to direct their own community-based supports and services – a “build your own program” using a budget supplied by the state. Alternatively, many parents, families, and professionals are partnering together to form organizations, communities, and residential housing programs to meet the needs of their adult children on the autism spectrum. They have found this to be individualized to their community’s needs and a more immediate action plan. Although there are a limited number of services provided by state developmental disability agencies, there are a growing number of organizations and resources online that you can seek out for support and create a plan for your child. Don’t lose hope – there’s still so much to do!
These are the five things families have said looking back on when their child reached adulthood. It paints a picture of what services are available and accessible for adults with autism spectrum disorder as well as the challenges to qualify and navigate them. However, many families have been successful in achieving services during adulthood through these routes in addition to being creative and forging their own path to ensure plans are set in place. I hope you take these in stride and find them helpful as you plan for your child and family’s transition to adulthood.