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When autism is family: What's it like living with a child with autism?

Mary Fetzer is a freelance writer and marketing consultant with a marketing degree from Penn State University and 15 years of international business experience. Mary specializes in writing about parenting, children, pregnancy, college, h...

When autism is family

Come meet some meet some parents for whom autism isn't just a statistic reported in the news, but actually part of the family.

Finding support

Many parents feel alone in their search for help, but Pratt says you don't need to go it alone. "Talk to other people who have experience with what you are going through. Other parents who have children with autism will be some of your best resources to finding out what types of supports have been most helpful and what doesn't work."

Autism awareness

Shepard agrees, and explains that there is a lot of support and knowledge out there now for parents. "Take a deep breath. Don't try to find a cure. For now, just look for resources to help you and your child. Find a good support group or another parent that lives in your area. The best resource is someone who has gone through it, too."

It gives comfort to know that you are not the only ones experiencing a particularly stressful situation. In addition, one can get the most useful advice from others facing similar challenges and using similar services and supports. Support groups for parents, siblings, and grandparents are available through educational programs, parent resource centers, infomation hubs like SheKnows.com's Autism Spectrum channel and other online sites.

A support system might consist of understanding doctors, teachers, therapists, caregivers and friends. Dealing with autism is a life-long commitment and support can make living with it less difficult. Moriarty advises parents to get educated, figure out what works for your child, find a support network --  and don't be scared.

Finding yourself

A good support system benefits not just the child with autism, but also the parents or caregivers of that child. A mother or father will likely be their son or daughter's biggest advocate on life's journey, but they needn't be the only advocate.

Parents must make time for themselves in order to avoid burnout. Even a few minutes a day can make a big difference. Moms and dads -- just like their autistic children -- need rewards in order to be motivated. Parents who have kids on the autism spectrum have even more of a need to reward themselves, because parenting their child can be frustrating,  stressful and sometimes discouraging.

"You need to be sure to take care of yourself along the way, taking breaks and making time for yourself," Pratt advises. "Don't be shy about asking for help when you need it."

Moriarty sums it up: "Something that has been a saving grace for our whole family is that I know I can't do it all on my own. I never want to be the only one who can care for them... the only one who can put them to bed, the only one who can comfort them," she says.

Autism awareness - Quinn

"I went through a short period of doing it all and not letting anyone else do anything. I began to figure out that I was doing it all at the expense of myself and the family." Moriarty ultimately realized she needed help -- but didn't quite know how to get it. "Finally, I just began letting others do more. It is freeing!"

Looking for the good

Most important of all, says Price, is that you find a way to make sure the negatives don't overwhelm the positives. "I know I have it easy compared to a lot of parents, because my son generally has a very sweet disposition. But there are tough days when I need to remind myself to focus on the good stuff and not the difficult," she says.

"I think about how he is so delighted by even the littlest things, like when we read back to him something he's written. How he notices so many amazing little details in the world around us. How happy he can be because he doesn't care one bit what other people think of him. "

Really tuning into the things that bring her son joy benefits the whole family, says Price. "It not only gives us a better perspective on Quinn as a person, but helps to put life as a whole into a better context," she says. "And that's always a good thing."



For more on autism, see:

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