Teens with Autism and Their Caregivers Should Plan Early for Adulthood

By Kojach (Mom) [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons

As the number of children with autism diagnoses are on the rise, medical professionals have emphasized the importance of early diagnosis, intervention and treatment. However, less attention has been given to children with autism once they reach their teens and adulthood. Currently, researchers are working on ways to support teens with autism and their caregivers to make the transition into adulthood easier for them.

The Study

One University of Missouri researcher is seeking to find ways to help support teens with autism and their caregivers so they can more easily adjust to adulthood, while being successful and independent.
Nancy Cheak-Zamora, an assistant professor at the Missouri University Thompson Center for Autism and Neurodevelopmental Disorders says, "We need to focus our efforts on addressing the needs of young adults with autism in a much bigger and broader way. As health care providers, we cannot only help them take care of their health care needs; we also need to assure they’re connected to resources necessary to live independently and succeed in employment and education.

She and her team conducted two focus groups with youngsters who have autism and two focus groups with teens’ caregivers to explore the teens’ experiences with transitioning into adulthood and their plans for the future. Specifically, the researchers wanted to know teens’ and caregivers’ needs, beyond health care. The researchers discovered both teens with autism and their caregivers felt fearful and anxious about the teens becoming adults; caregivers also reported lacking the social, educational and vocational resources needed to help their children prepare for their futures. The caregivers said they were struggling to fill those gaps in resources themselves.”

Cheak-Zamora also stated, “Some parents get apartments for their young adults and then maintain two households. The mom, in most cases, is taking care of her house and her young adult’s house. It’s wonderful that the adult with autism is getting independence, but it can be unbelievably burdensome for the family and the parents.”

People who are the primary caregiver for a child with autism should start talking to him or her early on about their plans for the future.

She said further, “A lot of the young adults in our study told us about their goals for their future, but few had ever communicated these goals to their caregivers. Our young adults with autism really want to be able to socialize and succeed in higher education, but sometimes they don’t know how to go about doing that. Caregivers need to start saying to their children at the age of 12 or 13, “What do you want to do?” We’ve got 5 years, so let’s make a plan.” They can do that in the doctor’s office and with a school counselor.”

Conclusion to the Study:

Dr. Cheak-Zamora said the findings of her study show it is important to facilitate independence for young adults with autism. The assistance and resources utilized by the caregiver for a child with autism need not be expensive, which is where creativity and assistance from others can be extremely valuable.
In closing, Dr. Cheak-Zamora said, “Care coordination should be in the health care setting, and this is a part of the medical home model—making sure that the family isn’t just meeting with the doctor for 15 minutes—that somebody else is following up with them to again think about what resources and unmet needs they have and how to connect them with resources. It would also be an opportunity for the family to feel supported.”

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