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Autism Spectrum Disorders: Parents' Experiences

For parents of children with ASDs, there are so many lifestyle and attitude adjustments to make. If a child has severe autism and shies away from a parent’s touch or is unable to communicate with Mom or Dad, it can be heartbreaking. Then, there’s the matter of having to adjust your expectations and desires for your child for now and the future. “For us, the diagnosis was devastating,” says David Fong,  whose two-year-old son Max was diagnosed with PDD-NOS in September 2009.  “All of our hopes and dreams for him seemed to fade away. Then we were filled with questions -- Will he ever have friends? Will he go to public school or require special needs programming? Will he ever date, ever be able to live on his own, go to college, hold a job? There are just so many unknowns. We're learning to take it one day at a time, but it's still hard. With autism, there's no crystal ball.”

On top of this, there’s the stress of never knowing what to expect from your child in terms of behavior or mood, which can make day-to-day living challenging and going to new places or attending extended-family get-togethers even more so.

  • “Jack had dark periods where he was despondent and I didn’t know why,” says Ursitti. “That’s excruciating as a mother -- to know that your child is sad and suffering and to not know why. I couldn’t begin to guess what was going on with him because he experiences the world in such a different way. That’s one of the toughest parts of having a child with autism.”
  • “No matter how hard we try to maintain routines and stability, there are days when something will set Hunter off and we will be dealing with a 24-hour meltdown -- and, yes, I do mean 24 hours,” says Polkes. “That’s when I have to be prepared to calmly and rationally deal with everything, no matter how illogical or impossible it may seem.”

Meanwhile, the personal stress and sacrifice that comes from continuously accommodating your child’s shifting needs can add up. “You are tired and emotionally drained all the time -- and sometimes it feels like you are stuck in quicksand,” says Polkes. “Because your life revolves around helping your child be able to function in the world, your life is no longer your own. It is the hardest job in the world because you never know what your boss is going to throw at you, quite literally.” Sometimes, too, marital strain can develop when partners don’t see eye-to-eye on how to treat or handle their child. 

Logistically speaking, one of the most difficult challenges in raising a child with an ASD is trying to get insurance coverage for all the different therapies that may be warranted. Depending on your state and/or insurance policy, behavioral therapies -- such as applied behavior analysis, the gold standard for ASDs -- may not be covered; the out-of-pocket expenses can run tens of thousands of dollars per year, which can lead to financial hardship. Meanwhile, in some families where both parents work, they may decide it’s best if one of them becomes a stay-at-home parent to meet the child’s needs and deal with the arrangement and transportation for multiple therapies, which can lead to financial strain, as well. On top of this, you may have to become an advocate for your child at school to make sure he gets the services he needs. 

But it’s worth the effort and perseverance because with the right therapies, children with ASDs can make a world of progress.

“I don’t think a lot of people realize that kids can recover from some of these problems but you have a narrow window for getting treatment -- it’s not enough to just try to cope,” says Summer McFarland, whose 11-year-old daughter Lauren was diagnosed with PDD-NOS at age six and has spent years getting different treatments. “We’re still catching up on some of the developmental delays but at this point, Lauren is pretty indistinguishable from many of her peers. We’ve come so far.”