When our reality doesn’t meet our expectations

Heather Kuzmich, Susan Boyle and now Clay Marzo.

What do these three individuals have in common? They all captured international attention in their respected fields (modeling, singing and surfing) and all three have Aspergers syndrome. Oh, and one more thing, all three have seen the initial “promise” in their careers derailed.

So many people have seen or heard of these people. They are credited as “inspiring” and “motivating.” Especially by parents of children with autism spectrum disorders. Parents of ASD children look to these “inspiring, motivating” people as proof that their child will accomplish great things. Their children will accomplish great things but believing they will be super models, platinum recording artists and world-class surfers is, sadly, as delusional as parents of typical children believing they will be NBA stars or Academy Award winning actors.

Moreover, parents are upset when, under the pressures of success, these “high functioning” individuals begin to crack. Kuzmich’s photogenic talent did not win her the contest and has cost her contracts because her difficulty with social interactions made interviews with potential employers (designers etc) and spokesmodel jobs almost impossible. Boyle’s sudden thrust into fame after singing “I Dreamed a Dream” from Les Miserables on Britains Got Talent proved to almost be her undoing when she was inundated with publicity press and performances that taxed her with over-stimulation and excessive social interactions. She ended up in the hospital as a result. Clay Marzo disliked travel and began to turn down multiple oppurtunities, that and his frequent injuries resulted in his being dropped by Quiksilver. Marzo also disliked the demands of his Quiksilver contract and, as is common with many with Aspergers, had no filter about it when asked.

To say any of these individuals were not successful in their chosen field would be disingenuous. They made it further than many without their social challenges. But to say they reached the pinnacle of success would be equally disingenuous.

Parents of children with autism, and those not on the spectrum need to stop searching for the “Rain Men” among us. Many friends kindly, but unhelpfully, will send links to articles about famous people on the spectrum to parents. While intended to create a glimmer of hope for some who were given devastating news, they often create feelings of resentment when a child does not turn out to be a savant or unrealistic expectations leading to a huge fall.

While I whole-heartedly believe there is no limit to what Shelby can accomplish, to believe she will one day sing like Susan Boyle or surf like Clay Marzo is to deny her the right to be who she was created to be. Maybe her talents won’t bring her world renown, guess what, that’s true for most of us without an autism diagnosis too. The reality is that our expectations may be dashed thousands of times, but that never means an individual, on the autism spectrum or not, is worthless.

And, as a word of warning, please be careful about the truthfulness of what you pass on not only as a parent of a child with autism or a friend wanting to send encouragement. A certain youtube video made by a sixteen-year-old with autism about “famous people on the spectrum” is being shared widely and and wildly inaccurate. Keep in mind that autism cannot be diagnosed posthumously and facts such as a person not marrying are not suitable for diagnosis. Many parents have enough difficulty that their child has a diagnosis without comparisons that are not even accurate.