What Happens When Children with Autism Grow Up?

CC BY-NC-ND by cepascal

Autism has been around for many years, but the past few decades have seen the numbers of diagnosed cases rise exponentially. We still don’t know what causes the disorder, and there is considerable debate regarding the best way to treat it, but we do know this – there is a huge influx of adults with autism who will be entering the system in the coming years. Peter Bell, executive vice president of programs and services at Autism Speaks says,

“We estimate there are going to be a half a million children with autism in the next 10 years who will become adults.”

Unfortunately, the system is far from ready for them. Services for adults with autism exit, but they are not mandated, and the coming influx of autistic adults, combined with shrinking government budgets, is a recipe for disaster.

There are residential group homes and institutions that allow adults with autism around-the-clock support, along with a degree of independence, but waiting lists are long, and will be getting even longer in the coming years. It’s estimated that 59% of autistic adults still live with their parents, but this can become problematic as parents age and eventually pass away. Many of these adults require constant supervision and one-on-one care, which is time-consuming and expensive to provide.

Luckily, many states in the US are rising to the challenge, and making an effort to ease the burden on these families. The current trend is moving away from the group-home model, and into offering support for families who are caring for their adult children at home. Connecticut and Arizona pay for care provided by family members. Pennsylvania has a program in which contracts are issued for people with autism to live with other families. Vermont and New Hampshire provide funds directly to families. Some families have taken matters into their own hands, and entered into cooperatives with other families, pooling their resources to find appropriate housing and care for their loved ones with autism.

As reported earlier this month by Autism Daily Newscast, some companies are also starting to see the value in hiring adults with autism. German software company SAP is actively recruiting individuals with autism, and others are noticing their many strengths. Services designed to help people with autism adapt to the workplace, while educating employers about their needs and ways to help them succeed, could ease the burden substantially.

Autism Speaks offers a free transition kit to families of teenagers that includes important information about housing, employment, and developing self-advocacy skills. It can be customized by state for those who register online at http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit. Experts recommend that parents start planning for their child’s transition into adulthood early, as demands for services and placements will certainly grow in the coming years.

Siblings are often the greatest advocates for adults with autism, and much of the care giving will fall to them as their parents age. Don Meyer, founder and director of The Sibling Support Project and the creator of Sibshops, urges parents to include their neurotypical children in the planning process.