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Respite Care Has Big Impact For Autism Parents

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Parents of children with autism often report high levels of stress, but new research suggests that getting a caregiving break for as little as one hour a week can really make a difference.

In a new study looking at moms and dads of those with autism, researchers found that parents were less stressed and had improved marital quality with each hour of respite care received.

Researchers polled 101 sets of parents from across the country, each of whom were married and had at least one child diagnosed with autism ranging in age from 1 to 33. Moms and dads were asked to individually answer questions about their marriage, their feelings about daily responsibilities like money and work as well as how much respite care they received during a typical week or weekend.

Overall, parents indicated that about 64 percent of their kids with autism spent time with a respite care provider. Grandparents were most often the ones cited in giving parents a break, but moms and dads also reported getting help from babysitters, community agencies and extended family members.

Such support had a significant impact, with parents experiencing less stress and more so-called “uplifts” — qualities that led to better relationships — researchers reported in the Journal of Autism and Developmental Disorders last month.

“Just one additional hour of respite care per week was related to an increase of six to seven points in marital quality, which is approximately one half of a standard deviation,” wrote researchers from Brigham Young University and Wasatch Mental Health. “This finding offers hope to couples parenting a child with ASD.”

The study is just the latest to attest to the benefits of respite care for families affected by autism. Last year, researchers said they found a decreased risk for psychiatric hospitalization in kids and young adults with autism whose caregivers used respite services.

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Comments (12 Responses)

  1. VMGillen says:

    A 33-year old is NOT a child… indeed, experience shows that securing services from the teen years on, for people with classically-defined autism (or the high, or low, end of the spectrum), is close to impossible.

    I urge everyone to pull up these studies, do not rely on the “Scoop” report (or Science Daily et al.)

    This study covers only 101 families, with (predominately) high incomes and advanced degrees. This slice of society should not be construed as representative of very much of anything, except that, hey, ALL parents need a break, duh. Another waste of research dollars.

  2. ASD Vacations says:

    This research confirms what lots of us already knew. (1) Caring for a child or adult with autism is stressful. (2) Respite breaks help to alleviate some of the stress. There are 2 other things that the research doesn’t seem to cover.
    (a) Good respite actually increases the ability of parents to care for their child because of the reduced stress.
    (b) Typically developing siblings have stress issues too and respite breaks help them also.

  3. Patricia Wright says:

    Thank you for addressing the issue of respite for families living with autism and other disabilities. This article provides additional data about the positive outcomes of respite and will hopefully increase awareness about the need for respite for families.

  4. David Snow says:

    This would also hold true for any type of disability, such as Cerebral Palsy. I was hoping that this article would have had more meat in it such as how care givers are getting such respite assistance.

  5. Jill Kagan says:

    The fact is, we need more research — not less. Funding for quailty, meaningful, affordable and accessible respite is in short supply for all families caring for an individual with a disability or chronic condition. The Lifespan Respite Program is funded at only $2.5 million to enhance and improve respite services nationwide andeven this small amount was cut through the recent sequester. To educate policymakers and the public about the benefits of respite so that funding and resources are secured, we need good, high quality evidence that cannot be disputed and we don’t have enough of that either. Thank you to the researchers for focusing on the benefits of respite.

  6. A. Father says:

    Grandparents are a help for as long as they are fit and your AS child is little. An upset, large teenager (or older) is no match for a small, elderly Grandma.
    How do you respite when you have no family or sitters in town and your child has ‘issues?’

  7. Joyce says:

    A.Father, I strongly suspect the lack of respite is what drives people to kill their disabled children.

  8. Alana says:

    I was a volunteer coordinator at a local church and we held respites 4x a year for special needs children and all of their siblings. The evenings were always awesome and the parents and caregivers really enjoyed the night out. The volunteers were all touched by the experience and could not wait for the next event either. Caring and interacting with anyone who has special needs can be intimidating but at these events everyone had a buddy and we all felt like kids.

  9. Nick Cultrara says:

    Joyce- Seriously? That is ridiculous. Respite or not the stress is high. I have two sons with autism who are teen/ adult age. It was great when they did go to respite one weekend a month but that had little bearing on the other 27/28 days. Stress was just as high. To suggest a lack of respite might lead to one killing their disabled child is not only unfounded but agreigously erroneous.

  10. I. Oliva says:

    Respite is definitely crucial and can make a different. However, when the child has “issues, of more challenging behaviors, the quality and experience of the respite worker/reshab worker is crucial. I always end up ” training ” these often times inexperienced, most of them non-committed workers who often their hours with my son is a “part time” job for supplemental income. Most of them come and see my son and show up tired and unmotivated.

  11. LBlum says:

    This article is so encouraging. I have the privilege of working at a great place that is providing respite to more than 350 families in the DC area! It’s called Jill’s House and it provides respite for kids (6-17) with intellectual disabilities. We find that the families face endless stress. They are exhausted. They struggle with failing marriages, battle depression, feel overwhelmed and desperate. I see this every day.

    It’s such a joy to get to come alongside the families to give them hope and renewal. I have to tell you a couple of the stories about our work!

    One father we serve shared with us that his marriage would not have made it without the respite we provide. A single mother used her respite time to work on a nursing degree. A single dad shared that his son, who insisted on sleeping with him, learned independence during his overnight stays here and now sleeps alone, giving his dad the rest he so desperately needs. Another family took their typical children camping for the first time, since the outdoors is not accessible for their child with special needs.

    Can you see why I love Jill’s House? The impact respite is making on these courageous families is indeed priceless! Thank you for sharing this with us!

  12. Nancy says:

    Hi, I’m a single mother of a 9 year old autistic girl and I also suffer from stress. I live alone with her and don’t have family near me to help me. As far as I know you have to be register in DDD in order to receive Respite services. The process takes as long as 6 months and then you are on a waiting list for the service.

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