For those parents who are all too familiar with the emotional and financial stress of raising these wonderful but challenging children, I wonder how Autism Awareness month is really helping. Has awareness translated into real action? Currently, waiting lists for ABA and other treatments can sometimes stretch for years. Each passing year gradually erases hope of meaningful improvement from the early intervention we already know is so important. Parents who are fortunate enough to be able to find and afford early treatment and supportive special schools are still very much in the minority.
Even the lucky few—like my Sarah—who was accepted into a special autism support program at Pace University—will graduate into an extremely unwelcoming world. If neurotypical college graduates—like her twin brother Max—have difficulty finding a job, imagine how hard it will be for Sarah and others on the spectrum. What will happen to these young and vulnerable millennials? They can’t take refuge in graduate school—not if college has already been an expensive and protracted struggle. Will society step up to the plate and find a place for them? Or are they destined to remain a one month phenomenon for the foreseeable future?
Devoting the A-month to the A-word and calling for awareness (another a-word) is like adding one more lifeboat to the Titanic. Forget awareness. What we need is action (a more meaningful a-word), 12 months out of the year. Sadly, there are so many worthy causes crying out for help that it’s unlikely that we’ll see substantive action any time soon. If our country won’t move quickly and decisively to pass laws banning automatic assault rifles, or prohibit the sale of guns to criminals and the mentally ill, what hope do parents of autistic children and young adults have of seeing laws passed to protect them? If our government and our citizens can’t prevail over the NRA to protect healthy children from being slaughtered at Sandy Hook, Virginia Tech and Columbine, how can we expect them to take action on behalf of autistic kids?
What put autism on the “awareness” map was the attention of famous and wealthy people who began to give birth to autistic children. Since autism strikes all socio-economic groups and does not discriminate on the basis of race and religion—although 80% afflicted are boys—it was inevitable money would eventually flow to research. Memoirs and media attention rose as autism diagnoses reached epidemic proportions. The internet connected parents to support groups, offered treatment alternatives, and debated the possible causes of the autism epidemic, including the bitter controversy over the role of childhood vaccines. While all of this attention has been a welcome step forward, I think most parents would agree that the prognosis for the majority of kids on the spectrum has not improved nearly enough.
Even the lucky few—like my Sarah—who was accepted into a special autism support program at Pace University—will graduate into an extremely unwelcoming world. If neurotypical college graduates—like her twin brother Max—have difficulty finding a job, imagine how hard it will be for Sarah and others on the spectrum. What will happen to these young and vulnerable millennials? They can’t take refuge in graduate school—not if college has already been an expensive and protracted struggle. Will society step up to the plate and find a place for them? Or are they destined to remain a one month phenomenon for the foreseeable future?
Devoting the A-month to the A-word and calling for awareness (another a-word) is like adding one more lifeboat to the Titanic. Forget awareness. What we need is action (a more meaningful a-word), 12 months out of the year. Sadly, there are so many worthy causes crying out for help that it’s unlikely that we’ll see substantive action any time soon. If our country won’t move quickly and decisively to pass laws banning automatic assault rifles, or prohibit the sale of guns to criminals and the mentally ill, what hope do parents of autistic children and young adults have of seeing laws passed to protect them? If our government and our citizens can’t prevail over the NRA to protect healthy children from being slaughtered at Sandy Hook, Virginia Tech and Columbine, how can we expect them to take action on behalf of autistic kids?
What put autism on the “awareness” map was the attention of famous and wealthy people who began to give birth to autistic children. Since autism strikes all socio-economic groups and does not discriminate on the basis of race and religion—although 80% afflicted are boys—it was inevitable money would eventually flow to research. Memoirs and media attention rose as autism diagnoses reached epidemic proportions. The internet connected parents to support groups, offered treatment alternatives, and debated the possible causes of the autism epidemic, including the bitter controversy over the role of childhood vaccines. While all of this attention has been a welcome step forward, I think most parents would agree that the prognosis for the majority of kids on the spectrum has not improved nearly enough.
The best way to convert autism awareness from a one month education and sympathy rally into meaningful action is for powerful people in business, politics, media, fashion, music and film to become involved in a big way. Autism needs you, Michael Bloomberg, Oprah, Prince William, Anna Wintour, Angelina Jolie, Bill Gates and President Obama. We need the A-list in every profession to put their heads together and reach into their wallets. That only happens if enough of these people have family or friends with autistic children. If they saw first-hand the struggles of raising these children and got to know them and love them the way I love my Sarah, I guarantee there would be dramatic breakthroughs, maybe even a cure or prevention. If the A-team focused on autism all year, every child on the spectrum would have access to early intervention and optimal school environments. There would be colleges in every state offering support to students with autistic spectrum disorders instead of only a few in metropolitan areas like New York City. Innovative programs providing transitional help for independent living and vocational opportunities for young adults would be available everywhere. Laws would be passed to prevent teachers and students from bullying and abusing people on the spectrum. There would be dignified options for all citizens on the autistic spectrum from cradle to grave.
I know this is a pipe dream (at least for the moment). But indulge me. It is April, after all.
Marguerite Elisofon is a New York City writer and the author of My Picture Perfect Family, a memoir about how her family navigated life with a child on the autistic spectrum before the internet and support groups existed. She also blogs about parenting young adults and disability related issues in The Never Empty Nest. Her writing has been featured in a variety of publications, including Time and NY Metro Parents magazine, and her family’s story has been featured by the NY Post, Fox News, The Daily Mail, and on Jenny McCarthy’s Dirty Sexy Funny radio show. A Vassar graduate, Marguerite was born and raised in New York City, where she still lives with her husband, Howard, in their mostly-empty nest. She is available to speak about a wide variety of issues relating to twins, parenting, and autism. 