Happy to Help
Research shows how caregiver happiness is critical as more children affected by autism
This article originally appeared on the Huffington Post on Feb. 16, 2016.
By Drs. Sarah Bauer, Aparna A. Labroo and Megan Y. Roberts
"You are doing a wonderful job...From a mother who knows."
According to media reports, this was a note recently handed to a mother in Washington state at a local diner. The written kindness arrived instead of the bill, after she had finished breakfast with her son who has autism. He had been experiencing a difficult time.
This moment -- countered with stares and expressions of disapproval from others -- underlines a growing awareness of the shared experiences of parents and individuals with autism. It also highlights how we can support parents and individuals with autism as they grow.
New research from Northwestern and Vanderbilt Universities points to the involvement of caregivers as crucial and also that the happiness level of those involved is a contributing factor in therapy effectiveness.
If as many as 29 percent of children diagnosed with autism at 2 years of age do not talk by 9 years, how we as a society provide appropriate supports to children and families is critical. Challenges with communication and social skills start at an early age, and more children are diagnosed and dealing with symptoms of autism than ever before. Involving parents early with proven strategies may make all the difference.
What Can Help Best?
While specialized treatments such as speech, occupational, behavior- and relationship-based therapies help, there may never be enough resources for everyone. That is because not only are there more children, there is a corresponding growing and aging population of individuals with autism.
Autism affects not only the person with autism, but the parents and caregivers too. They are looking to support their child's development in any way possible. Involving parents even more in the care of their children may empower parents and provide the most cost-effective therapy and support.
Megan Roberts' research with colleagues at Vanderbilt University supports caregiver involvement in therapy. As with any treatment -- medicinal or therapeutic -- dosage matters. Even for those who have access to a professional, relying only on the therapist alone can limit treatment to a few hours maybe once a week or less often.
With increased numbers of children with autism, the cost of therapies, the number of providers required to implement services and the availability of services and providers become major factors. But if a therapist works with a parent for 1-2 hours of therapy each week, the child may receive on average 17 more hours of intervention from the parent.
Some therapists and parents are already working together, but this is not always possible. In the clinics where we work, parents often tell us they are unable to attend therapy because they are at work or the therapist works with the child at day care. But it is when parents know the strategies and can replicate them at home, that the child is most successful, our research shows.
Drs. Roberts and Bauer recently began a randomized clinical trial examining how best to include caregivers in early intervention for toddlers with autism. Outcomes are not only better for the child with autism, but involving parents in therapies empowers them, making the parent feel more in control of their child's treatment and future.
Research shows that feeling in control can build optimism, and positive feelings foster better connections.
That finding is supported in other fields. Aparna Labroo's research at the Kellogg School of Management shows that people who are feeling happy think more abstractly. They see connections between different things better, so they may learn better. Happy people connect better with others, and happiness improves a person's wellbeing, Labroo found.
In this context, parents can create meaningful bonds with their children and nurture these priceless relationships.
Time and Money
Certainly in the best of all possible worlds, a parent can spend unlimited time with a child, but it is not always a reality. But any parental efforts to spend more time with a child performing therapies can yield better results.
One of the most heartbreaking things for a single parent, for example, can be that the young child with autism is repeatedly sent home from daycare for outbursts. Usually this problem cannot be resolved with just an hour of therapy a week from a professional. The chances of finding a resolution sooner are much higher if the parent or caregiver work with the child every day. The problem is even more acute for those who may not have access to enough or any insurance to cover therapies. The only realistic way forward may be to more proactive.
To be sure, parenting a child with autism delivers many challenges. But if specialists design easy to deliver daily parent interventions that support their therapy, outcomes can improve.
For any challenging goal where progress is not immediately evident, relying on structure and routine and focusing narrowly on the task may help. Patience and persistence are essential. Having a schedule and maintaining it with a child helps. Providing information to schools and daycares on how to address children with special needs will help.
An act of kindness connects each of us to our humanity. And empowering parents and supporting the learning of individuals with autism is a path to understanding that can help us all.
- Dr. Sarah C. Bauer is a developmental pediatrician at Ann & Robert H. Lurie Children's Hospital of Chicago and Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine. Dr. Aparna A. Labroo is a consumer psychologist and Professor of Marketing at the Kellogg School of Management, Northwestern University. Dr. Megan Y. Roberts, CCC-SLP is speech-language pathologist and the Jane Steiner Hoffman and Michael Hoffman Assistant Professor of The Roxelyn and Richard Pepper Department of Communication Sciences and Disorders at Northwestern University.