the fact that April is National Autism Awareness month, it seems to me that
most of the world lives in a state of profound unawareness. The Center for Disease Control recently
announced that 1 in 50 babies will now be diagnosed on the autistic
spectrum. When my daughter Sarah was
born 22 years ago, the number was 1 in 150 babies. That’s a 300% increase! And while the media speculates that these
dramatic increases are due to earlier and better diagnosis, most experts
believe that 50%of the increase is still unexplained.
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.
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?
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?
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,
Labels: autism, college, family, finance, government, parenting, politics, special education, twins