by Tom Wailgum
One of the most challenging aspects of raising children on the autism spectrum is conquering the feelings of negativity that pervade everyday life. It can come from friends or family members. From co-workers. From the media. From strangers in the grocery store. From yourself. I know I’ve struggled with overcoming my own negativity while raising our twin sons, who are on the spectrum.
Does any of this sound familiar?
- “He can’t do that.”
- “She doesn’t have the skills.”
- “He’ll never eat that type of food.”
- “That trip to the mall with him was just awful.”
- “Why doesn’t she get along well with others? What’s her problem?”
- “We can’t possibly go there because it’s not safe for us.”
- “Why can’t you guys be like everyone else?!”
By its very nature, the “Autism Spectrum Disorder” label can be a severe limiter to the children, teens and adults who are assigned and often stigmatized by the branding—and it affects the parents of ASD kiddos as well. Think about it: When someone says you or your child has a “disorder,” it’s clearly not the same connotation as saying they have a “gift” or “special talent.” (It reminds me of the “incompetent cervix” label the doctors affixed to my wife when she was in the hospital with pre-term labor with our sons. Hey, docs, thanks for making her feel a lot better!)
Looking back, the negativism that I have allowed to envelope our boys’ diagnoses even colors how I remember the momentous and positive steps that have occurred in their development. Instead of thinking, I always knew they’d get rid of those diapers, I’d think: I never thought they’d stop relying on diapers. (They have.) I never thought they’d have as many friends as they do. (They’ve got some good buddies.) I never thought I’d see either of my kids willingly board a school bus in the morning. (I see it every weekday morning.) I never thought I’d see them up on stage, standing side by side with their classmates, singing in the annual spring concert. (They kicked ass.)
Never Never Never Never Never.
It’s so hard sometimes to exorcise the “nevers” and embrace the “positives” and “possibilities.” Perhaps that’s due to what stage you’re at, as a parent, in dealing with your child. Perhaps it’s due to the fact that you are relentlessly focused on identifying and addressing those deficiencies in their skillsets—and then attempting to overcome them. Or perhaps it’s because autism can feel like a blessing and curse at the same time.
The question, then, is: How do you change your outlook when you feel like you’re mired in so much uncertainty and angst because no one appears to have the answers to the many questions you have, when you’re wrapped up in so much guilt or anxiety, and when your unconditional love is continually rejected by your child?
Naturally, you’ve got to find your own way out of this nexus of negativity. It starts small, as things often do when the challenge is great. For example, after each outing with our sons, my wife and I will review how it went. For the longest time, it was easy for me point out all of the examples of where the boys had done something wrong (there’s that negativity again!).
My wife and I have made the move to first talk up all the great and positive aspects of their social interactions, play dates or serendipitous Target shopping trips, and then focus on just one thing that could have been done better the next time. For more than a year, we have followed the Superflex “Superhero Social Thinking” curriculum, created by Stephanie Madrigal and Michelle Garcia Winner, to help the boys become aware of more appropriate social behaviors that we want them to understand and apply. We have done this in conjunction with the boys’ teachers, specialists and administrators at their school, and it has been a critical factor in making the Superflex program even more effective.
As you might expect, sharing a common language with our boys, via the Superflex methodology, has allowed us to fill in those critical communication gaps that have always existed between my wife and I and our boys. It’s been an effective way to decrease negative thoughts and alter the tenor of our conversations, from repetitive, frustrating incidents to enriching, positive experiences. The change has delivered significant results—for them and me.