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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.

"I felt like I just lost a very close loved one. I didn't know what to do or how to deal with it."

That's how Crystal Shepard described her reaction to learning that her son, Jesse, had autism. She, like many parents of children with autism, grieved the loss of the "typical" child she imagined -- and wondered what was in store for her family.

Autism awareness: Quinn in the snow

An estimated one out of every 150 American children (right now, that means approximately 560,000 in all) are thought to have an autistic spectrum disorder.

What does this mean? Kids with autism experience the world differently than do other children -- they may have a hard time dealing with or making sense of the sights, sounds, smells and other sensations that surround us all.

Autism may also make it difficult for that child to talk, play, go to school or socialize -- at least in any way that makes sense to the rest of us. (Editor's note: Many people who are now adults are also "on the spectrum," but as the numbers of children with ASD keep rising with each new year, our focus in this article is on parenting young children with autism.)

There is no known true "cure" for autism, no quick fix from a doctor or a medication -- but there are many ways in which to help a child with autism learn and expand his or her understanding... and, ultimately, be able to connect with the world around him in one way or another.

What is autism like?

If you think you understand what autism is, but don't actually know anybody on the spectrum (or know only one person), you probably have only a fractional understanding of the autistic community as a whole. That's because the range of autism spectrum disorder is extremely broad -- some children are only mildly affected, while others have a severe disability.

Autism - experience, advice, awareness

"I usually explain it like this: Imagine a 50-gallon drum of mixed gumballs -- each gumball representing a different type of autistic behavior at any one of a hundred different degrees," says Nancy Price, mom to a 6-year-old on the spectrum (shown above with his big sister) and SheKnows' co-founder/editor. "Then tell people to each choose anwhere between 5 to 10 of the gumballs at random -- and what they pick becomes their kind of autism," she laughs. "It's that varied. Saying someone 'has autism' is almost like saying someone 'has food': are we taking oatmeal cookies or beluga caviar or grandma's green bean casserole?"

Multiple hallmarks of autism, from the difficult to the just plain quirky, may appear within the same child. For example:

Child A: Adores/obsesses about trains; can't stand the feel of most clothing against his skin; severe speech delay; refuses eye contact; benefits from firm pressure (weighted vests and blankets, being held tightly by someone he trusts) and loves to jump up and down.

Child B:
Talks all the time, but mainly just parroting everything he hears; scared of loud noises; exceptional recall and artistic abilities; limited eye contact; flaps hands; fascinated by numbers; runs off every chance he gets and has no concept of danger.
Child C: No speech skills; spends much of his time rocking back and forth; minimal eye contact; obsessively arranges and rearranges his toys while ignoring the remainder of the world; still not fully potty-trained at age 11; can complete a puzzle of the USA in two minutes flat.
Child D: Advanced verbal skills, and talks non-stop about every facet of dinosaurs; good eye contact; many obsessive-compulsive traits (will only eat white food or one very specific brand and variety of juice); prone to tantrums and head-banging; will happily wander off from his parents whether at the museum or shopping mall.

Autism in the family way

Accordingly, how family members respond to the diagnosis varies as well. Parents may react with shock, sorrow, disbelief, denial, fear, anger, confusion or even shame. Hamza boys on the slide - AutismWhere parents are similar, however, is in their desire to move past their own emotions toward solutions for helping their child.

Riffat Rehman was expecting the diagnosis of her son Hamza's autism. "It was hard," she says, "but in a way it was a relief to know what the problem was so that we could figure it out." Now the oldest of three boys, Hamza (shown in this photo at the top of the slide) participates in many aspects of family life.

Cathy Pratt, The Director of the Indiana Resource Center of Autism at Indiana University and Chair of the Board of Directors of the National Autism Society of America, says that when parents learn their child has autism, they are dealing not only with the emotions that come with the diagnosis, but also with the confusion over how to proceed in order to support their child and family.

When Lisa Moriarty found out that her twins, Jack and Stephen, were autistic, she was doubtful at first, then sad -- but, she says, they didn't spend a lot of time with that emotion. Instead, she and her husband thought about what they could do now to best help the boys. "Raising a child with autism is like flying blind," she says. "There is no guide to follow, no outline. It's hard to know what is right. The spectrum is so vast, and the kids all so different."

See the next page for more! Finding support, finding yourself, and finding the upside of autism


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