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Wednesday, April 10, 2013

Facing Autism at Home: An Expert Roundtable

From EverydayHealth.com

By Dr. Sanjay Gupta
April 8, 2013

Experts discuss the challenges of raising a child with autism, and what resources may be available to help these families.

Raising a child with autism can be overwhelming. For parents and caregivers, it means a host of stressors, from the financial burden of treatment to the challenge of finding the best school. It’s a growing reality many families are facing.

The Centers for Disease Control and Prevention puts the number of children in the U.S. with autism at 1 in 50 — a big jump from an earlier report of 1 in 88.

What exactly do the CDC numbers tell us?

Since the data was based on parents’ replies to a telephone survey, it doesn’t necessarily prove an actual rise in autism. What it does indicate is autism is more commonly diagnosed and reported. And that means the developmental disorder is clearly touching more lives than ever before.

So how do you manage the needs of your autistic child, while maintaining a positive and nurturing environment for all family members?

Health Matters reached out to several experts to discuss life on the front lines of autism and what resources may be available to these families. The participants were:

Scott Badesch, president and CEO of the Autism Society.

Dr. Geraldine Dawson, Chief Science Officer, Autism Speaks.

Dr. Ami Klin, Director of the Marcus Autism Center at Children's Healthcare of Atlanta and Professor and Chief of the Division of Autism and Related Developmental Disabilities at Emory University School of Medicine.

Dr. Max Wiznitzer, a pediatric neurologist at University Hospitals Rainbow Babies & Children's Hospital in Cleveland.

The following is an edited transcript of their responses.

How can families find the right school for a child with autism?

Dawson: Each child is entitled to an individualized education plan, required by law, that addresses his or her needs in a way that is measurable. Parents should ask themselves the following questions: Do I work well with the teacher and school team? Does the school have a way of measuring if my child progresses? Does the school value the plan? Is the school willing to adjust the plan if it’s not working? Parents should feel like they have a collaborative relationship with the teachers and other school professionals.

Wiznitzer: I always tell parents to make sure that schooling and treatment follows an individualized approach. For every child with autism, the same recipe doesn’t work. Monitor and make sure the situation is best for your child, and if he or she isn’t improving faster than you’d expect, demand a change.

In Ohio, we have an autism scholarship. If you’re unhappy with your child’s schooling, pull your child out of his or her current school, and the scholarship gives you money to put the child in another school.

Badesch: When parents call the Autism Society and ask for help finding an appropriate school, we point them to their local Autism Society affiliate. By seeking out the advice and support of other parents in their own communities, parents can get a good sense of the educational opportunities that exist and others’ experiences with them.

Is homeschooling a good option — or a last resort?

Klin: While very few parents opt for homeschooling, the vast majority end up having some homeschooling because they have not been able to identify an appropriate school program or because their child was bullied so badly that they removed the child from the school.

Because autism is primarily a social disability, and most children benefit from contact with their peers — and they need to practice newly gained skills in speech, language, communication, and social interaction — I don’t really think there is much to be gained from homeschooling.

Badesch: The decision to pursue homeschool depends on the needs of the child, the support the local school district can provide, language and the abilities of the parents. Parents interested in homeschooling can contact the Autism Society’s information and referral hotline, Autism Source [at 1-800-3-AUTISM]. Our information specialists can provide some very informative homeschool resources for parents with children on the autism spectrum.

What resources are available to help parents cover the cost of medical treatment and other services?

Klin: Unfortunately, the law on eligibilities for services varies a great deal from state-to-state. Some private insurance companies provide some coverage and Medicaid provides support.

Dawson: Autism Speaks is involved in a major healthcare initiative that would require every state to include coverage for behavioral health treatment. The hope is that every parent of a child with autism lives in a state where they have access to insurance. If your child is denied coverage through insurance, you are entitled to services through the state.

Badesch: The resources available to help with medical and other service-related costs differ from state to state. For example, every state has different regulations regarding whether or not applied behavior analysis therapy (ABA), an often-utilized autism service, is covered by insurance. The Autism Society can provide a list of grants and other financial resources to assist those who call our information and referral specialists.

How can families relieve some of the emotional pressures that autism caregiving puts on parents and their other children?

Wiznitzer: Ask the early intervention team or personnel at your child’s school about finding local resources — and ask the other parents. They always know about resources and local support groups. The Autism Science Foundation is another great resource.

Badesch: Families may want to consider respite care, as taking a break from the ongoing demands of caring for a person with a disability may help prevent the situation from becoming overwhelming. Another way to deal with stress is to connect with local support groups, such as Autism Society affiliates.

Wiznitzer: Parents need to help their other children understand what’s going on and let them be a regular part of their sibling’s care. Once those expectations are there, other kids become less resentful.

Dawson: I tell parents this is not a sprint, but a marathon. I encourage the whole family to work together and provide support to each other. This means taking time to take care of yourself — your emotional and physical needs – and giving yourself permission to take breaks. Reach out to others to develop a good social support system, particularly other parents of children with autism. Every parent needs to create a community of support, including extended family, friends, other parents, and health professionals.

Wiznitzer: You can’t let the condition control you. Your child is still a child first, with the same needs and desires as other kids.

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