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The Challenges of Being a Parent of a Child With Autism

by Jaime Budzienski

It's widely acknowledged that parenting is the hardest job of all -- and this is especially true for parents of children with autism, who face a different set of challenges. Autism is a developmental disorder that appears in early childhood, usually before age 3. While cases range from mild to severe, all autism spectrum disorders affect a child's ability to communicate and interact with others, notes the Mayo Clinic website. "It was one of the worse days of my life... I was absolutely devastated and so was my husband," said mom Cori Ayala to WebMD about how she felt when her son Evan was diagnosed. Even though the struggles facing parents of children with autism can seem insurmountable, the good news is that for every challenge, experts say there are solutions to ease the stress and worry that can accompany this very difficult role.

Coping With a Diagnosis

The first challenge parents of children with ASD face is the diagnosis itself, which can bring heartbreak, anxiety, anger and a feeling that life has been unfair, according to WebMD. "You don't have to kid yourself about how hard it is," said Robert A. Naseef, Ph.D., a clinical psychologist in Philadelphia, the author of the book "Special Children, Challenged Parents," and the father of a grown son with autism. As he told WebMD, "The good thing about getting a diagnosis is that then you get a direction in what will help your child. Usually, when kids get the right help and start making progress, their parent's mood brightens and you have some hope again."

Stress on the Family

Another hurdle for parents is the strain having a child with such extensive needs places on the family unit. Naseef noted to WebMD that tension can enter marriages because dealing with autism is so consuming, and he urges couples to try to make time for their marriage. One suggestion he has is having an "in-home" date night, so that parents don't have to worry about getting a babysitter, and enjoying a quiet dinner and movie after the kids have gone to bed. Another difficulty for families can be the way siblings feel overshadowed by the needs of the child with autism, and while some are able to form a close relationship, others may grieve the loss of a typical playmate. But there is certainly hope in this realm -- says the Autism Society, "It is important to remember that while having a sibling with autism or any other disability is a challenge to a child, it is not an insurmountable obstacle. Most children handle the challenge effectively, and many of them respond with love, grace, and humor far beyond their years."

Lack of Support

Many parents of autistic children also report feeling a lack of support. A 2008 study published in the journal Qualitative Health Research, following the experiences of 14 parents of children with autism, found that a common feeling was extreme social isolation and a lack of understanding from others. "Group support can offer parents knowledge, understanding and acceptance they seek," notes Mary Banach, a professor of social work at the University of New Hampshire. Parents can find comfort, friendship and support in networks like the Autism Support Network, Autism Speaks and the Autism Society, whose websites provide access to message boards, information about local chapters and meet-ups, and events.

Dealing with Behavior Issues

As the Autism Speaks website notes, "Sometimes the difficulties of autism can lead to behaviors that are quite challenging for us to understand and address. Most individuals with autism will display challenging behaviors of some sort at some point in their lives." Since behavior can be a form of communication, the site states, autistic kids will often "voice" their wants and needs through behaviors rather than words, which can include non-compliance, compulsions, physical aggression, and tantrums or meltdowns, among others. Autism Speaks recommends that parents consult with their child's team -- usually consisting of special education teachers, the occupational therapist, the speech-language pathologist, the behavioral therapist and other professionals who may provide direct services -- to help them create a consistent plan for dealing with challenging behaviors in and out of school. The plan should meet the four "essential elements," Autism Speaks notes: clarity, consistency, simplicity and continuation.

Financial Concerns

Lastly, a hurdle for parents can be meeting the financial demands of having a child with autism. Therapies for children are only partially covered by insurance companies, if at all, and many parents end up paying significant sums out of pocket -- in rare cases, up to $100,000 a year if it's eight hours a day of intense behavioral analysis therapy, says WebMD. A 2007 study in the Journal of Family and Economic Issues found that some families pay as much as $30,000 per year for behavior therapy. Some states have signed bills requiring insurance providers to cover costs of treatment, but in others, parents have emptied savings accounts and 401(k) plans, taken out second mortgages or filed for bankruptcy. Deanna Sharpe, Ph.D., a certified financial planner and associate professor of personal financial planning at the University of Missouri, told WebMD parents should consider hiring a CFP who specializes in special needs planning. Low- and middle-income families should try to be proactive about explaining their situation and asking about reduced rates or pro bono work, Sharpe said.

About the Author

Jaime Budzienski has contributed essays and articles to the "Boston Globe Sunday Magazine," "Pregnancy and Newborn Magazine" and the "Boston Parents Paper." She holds a B.F.A. in writing, literature and publishing from Emerson College and a master's degree in education from UMASS Boston.

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