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.

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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."

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

Motheroffour January 05, 2014 | 10:40 PM

John. John. Shame on no one. Each person is allowed the rightful feelings they experience. Do not use guilt to force anothers feelings into a mold of your choosing. You would not feel the author had such right and therefore, neither do you. Stone throwing fixes nothing. You are not in their shoes. We are all only barely able to even wear our own shoes. Autism in a child is one of the most difkficult things to live with, to work with, to love with and to learn from. Why do you feel the need to whip the parents experiencing it just be ause their experience is different from yours? None of us are gods. But we must do with what we have, and by who we are. Your response to this article showed me you are no farther allong the path than the rest of us. Lets try to be better people here, alright? Personally, i felt at first like my child had "died". The dream was not to be. As did the author, i bucked up in spite of some pretty hateful people amd more than a few busybodies and morbid religious types with a whip to flail my way. My husband had died, making the situation even more traumatic for all in the home. You need to curb your idea of what another is "allowed" to feel. You are not the approval department for feelings that others have.

John Easdale December 18, 2013 | 1:09 PM

Shame on you for printing this sentence: "I felt like I just lost a very close loved one." I'm sorry, but that's how you feel when somebody has actually died. A diagnosis of autism should be the opposite; in our case it forced us to work harder for our kids, sometimes fighting school systems and "old-school" thinking (literally) and finding solutions for our particular situation...which in turn helped future students on the spectrum in our district. But we didn't waste time feeling sorry for ourselves or our children, and think that is the worst possible message you could send to people!

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