When our children fall, we mend the cuts and bruises.For childrenwith special needs, “fixing”their conditions is morecomplicated. Some kids’ disabilitiescan’t be cured—not yet, at least.
Other people just don’t want a cure.
In a 2017 New York Times article titled“‘Cure’ Me? No Thanks,” Ben Matlin, who hasspinal muscular atrophy and uses a wheelchair,explains why he’s choosing not to chase after acure promised by a new drug—besides the riskand the financial investment, his condition ispart of his identity. It’s something he takes pridein. “You don’t try to cure something you likeabout yourself,” he writes.
“We think people might want to be fixed, butmany of them are happy the way they are,” saysJessi French, a board certified behavior analystwith Crosspoint Autism Therapy in Plano. Manyof the children and young adults she works withdon’t feel they need to be cured at all.
“We are pushing society standards on themthat they don’t care to follow,” she says.
Treat or Cure?
French believes treating symptomsis essential for teachingself-regulation and copingskills, especially when a childhas self-injurious behaviors.
But searching for a curefor your child could imply that
something is wrong with them.
In 2016, national advocacyorganization Autism Speaks
removed the controversialword “cure” from its mission
statement due to pushback from people in theautism community.
“I think you have to think about where on thespectrum your child is,” says Euless mom TrinaHoover, who has two sons with autism. “If there isan upper end, you want to treat that but you don’twant to take away the things that make him unique.”
Her oldest, 12-year-old Jonathan, has autismand neurofibromatosis (NF), a painful disorderthat also causes cognitive and motor delays.Though Hoover actively fundraises for a cure forthe painful symptoms of NF, she feels that herson can function in society with
autism. Instead of seeking a cure,she focuses on improving hislife skills so that he can becomean independent adult.
Jonathan’s 9-year-oldbrother, Daniel, also hasautism, but understandinghis surroundings is more of agray area than it is for Jonathan.The third-grader needs consistent
implementation of behavioralsupports; otherwise, he becomesdefensive, and he’s tried to runfrom his school campus.
But even though his behaviorsare more involved, “a life is a life isa life, no matter what they have,”she says, adding that rejecting herson’s autism outright would be “toomuch social engineering.”
In today’s society, “the pushis for a neurodiverse world,”
French explains. “Everybody canbe included and live in an allinclusiveworld.”
Still, not every parent rejectsthe idea of a cure.
McKinney dad Chad Kleis hasan 11-year-old son, Hunter, withmoderate autism. Though Kleisdoes not making finding a curefor Hunter’s condition a priority,he’s not opposed to the idea. “Iam never looking for a cure,” hesays, “but if I find one along theway—great!”
The Way It Is
For parents who welcome a cure,how can they find a balance betweencelebrating who their childis and working to eliminate theirchild’s condition?
Dallas-area marriage andfamily therapist Marsha Ring
advises parents to stay calm andnot show anxiety about theirchild’s condition. “Anxiety iscontagious,” she says.
Instead, she counsels parents to “accept theway it is”—even if you hope for a cure.
“Some things are out of our control,” shesays, “but we can make the person comfortable.”
Kleis supports his son by doing everythingpossible to enhance Hunter’s future throughtherapies and interventions.
“I have always tried to eliminate anythingthat would stand in the way of his quality oflife,” he explains. “Then, at least I can say I’vetried everything.”