Why Support Groups Are Not Always the Answer     for Parents of Autistic Kids

"You've GOT to join a support group!" was the unanimous advice I received from family and friends when my 4-three-old son got diagnosed with autism. Looking back now with the wisdom of hindsight, I realize their suggestion was more of an easy out for them than a compassionate way to help me. It was code for: “I'm busy with my own life. Don't burden me with your problems. Go talk to someone else.”

Their indifference caught me off-guard. I had always been the loyal one with a ready ear – listening to my mom go on and on about her boyfriend who didn't want to commit, hearing my sister whine when her son didn't get accepted to an exclusive preschool, and sitting for hours while girlfriends detailed their travails with potty training, breastfeeding, and sleep schedules. Now, during my time of heartbreak and desperation, the group of people I thought were my support group were telling me to go to a support group. I was screwed...and alone.

I arrived at the nondescript portable on the campus of the Early Intervention Center. A group of moms and dads sat around a conference table, their heads down as they skimmed through the hand-outs. None of them looked up when I entered. None of them appeared like they wanted to be there.

The facilitator asked us to introduce ourselves and tell about our kids. A distressed mother told about her teenage son who was acting violently at home – kicking, screaming, and hitting. She had younger children so she needed to find somewhere else for him to live. A worried-looking father talked about his 7-year-old twins who were getting an expensive but unproven treatment for autism. He said his wife and him were going in debt to pay for it.

Story after story was grim and left me feeling depressed, hopeless, and wanting to leave. I started to feel guilty about my own story because it wasn't nearly as horrible as theirs. I didn't feel any magical bond with these people like I expected. Instead, it seemed like a heavier burden was getting placed on my already weighted down shoulders as I listened to their heartache.

I attended a few more meetings, always going away feeling more anxious and alone than when entering. I learned in the years to come that my reaction was not atypical. That's because autism is a spectrum disorder, meaning it affects each person differently – ranging from the extremely mild to the extremely severe. I found no comfort at the support group because no one was telling a story that related in the slightest way to my experiences with a high-functioning kid. In fact, those meetings made me question whether my son even had autism!

So if not a support group, what should parents do to find comfort and help? All I can recommend is what worked for me:
  • seeing a therapist. I needed to talk with someone who would listen even if that meant paying. I needed someone who was looking out for me while I was busy looking out for my son. My therapist got me to start investing in myself by getting enough sleep, eating healthier, exercising more, and making time for myself. Seeing her once a week was worth every penny.
  • depending on my son's speech and occupational therapists for advice and support. They worked with my son on a weekly basis and knew him well. While they didn't own a crystal ball, they could tell me encouraging things about his progress and future.
  • being okay with having just one or two close friends. I stopped attending the two play-groups that we had joined when my son was born. It was too hard to hear the other moms bragging about their children's superiority in gymnastics, dance, and Spanish classes when my son was just working on making eye contact.
  • journaling. I just started writing down all my feelings, fears, and frustrations. It all came pouring out on paper. Sometimes it was too painful to read, and I'd rip the pages from the notebook and tear them into little pieces.
  • gradually minimizing contact with certain people. I no longer had patience for those who weren't there for me in my time of need. Some of them wanted to re-enter my life when my son started to improve, but I was no longer interested.

Many autistic children have Sensory Processing Disorder, which affects their daily lives and the lives of their families. These children don't perceive sensory input -- sounds, touch, tastes, movement -- like the rest of us do. This book is the Bible for dealing with SPD and helping your child enjoy all the sensory input life has to offer.

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