Trust Me…It’s A Crisis

I’ve always struggled with numbers but not this one…

From the CDC comes this statistic – 1 in 50 children under the age of 17 holds an autism diagnosis.  Even for me, someone who has worked with parents of children with autism for years and suspected for quite some time that even the most recent statistic of 1 in 88 children was low, seeing this in print was simply startling.

Ask anyone whose life has been touched by autism and they’ll tell you that it changes everything.  It strains marriages and finances.  Overwhelms resources and time.  Shifts priorities and plans.  Every day, in every possible way, autism overtakes life and the expression …”let me count the ways” doesn’t even scratch the surface in terms of the impact an autism spectrum disorder has on parents, families and well beyond.  Trust me, I know.

At a time when school budgets are being slashed and families are truly hurting by an aching economy, these numbers equate to a huge wake-up call for those who may have been napping.  The need for early intervention services is critical as the earlier supports and services are secured, the greater likelihood that the child can make and sustain progress.  The need for broader and more complex supports for teens has never been greater with social deficits and bullying defining a huge part of life for high school students.  And the need for college-level support is enormous, as the expectations and freedom that accompany the foray into young adult independence brings with it enormous risks.  Trust me, I know.

Working parents have the greatest challenges and if both parents are employed full-time outside of the home or if it’s a single parent household, all bets are off.  Therapies, evaluations, research, school meetings, crisis situations…the strain on working parents and their time, finances, and health are beyond what employers and colleagues understand or even recognize. And as I say ad nauseum…behind every child with an autism spectrum disorder is a parent (or two parents) of a child with an autism spectrum disorder.  Trust me, I know.

Autism is complex and multi-faceted, leaving even the most “on” parents buckling under the strain.   Parents find themselves leaving jobs because any hope of work/life balance is greatly compromised if not impossible.  Parents find themselves on Google at 3 a.m. or spending weekends sifting through books and journals.  Parents find themselves remortgaging their homes, borrowing from family members, and altering their way of life beyond what those on the outside could fathom.   Trust me, I know.

Autism is a crisis.  Plain and simple.  It was a crisis five years ago and is even moreso today.  And while many are researching causes and developing new therapies, the reality is that exploding numbers of children and teens are struggling on this very day from wake-up in the morning to sleep (if sleep even happens) at night, in 2nd Grade and 11th Grade, in public schools and private schools.  And standing behind and beside each of these children is a worn, overwhelmed, frustrated, and confused parent – or two parents – trying in herculean ways to find answers and make things better.  Trust me, I know.

When a crisis hits, people mobilize.  Only in this case, it isn’t a natural disaster but rather a national crisis impacting not only families in their own homes, but employers as well.  Employers must offer assistance, whether through flexible work options, funds allocated for an employee to use for therapies, private school, or legal counsel, or employee resource groups so working parents can share information and offer support.  Because even with internet research in the middle of the night, what working parent with an 8 or 14-year-old with Asperger’s Syndrome has the time or energy to shoulder more than they already are?  Employers also need to recognize that today’s children with an autism spectrum disorder will likely be tomorrow’s employees programming their computer system or writing their corporate manual.  And in terms of society, everyone needs to begin to understand autism differently, for many pre-conceived notions from years ago are as outdated as go-go boots and wall telephones.

One in 50 children has autism.  It impacts everyone and is a genuine crisis.  Trust me, I know.

 

 

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Sticks And Stones Got It All Wrong

Years ago, I vividly recall telling my son that words hurt as much as, if not more than, a physical action.  This was when he was experiencing daily torment by classmates in school because he was “different” – a book reader, creative, and not into sports.  Even the word different bothered me because it came with baggage that I wanted him to shed.

On last night’s news, there was a story about a man who ended his life after what appeared to be a lifetime of struggle.  The reporter said that the man “was mentally ill” and all kinds of images came to mind, even for me who has spent years advocating for children/young adults with a range of diagnoses and labels.  I then wondered how people without any frame of reference reacted to this statement vs. how they may have responded if the reporter said… the man “suffered for years with mental illness” or the man “struggled for years with depression.”  Perhaps it would have softened – and brought a level of humanity and understanding – to an otherwise tragic situation.

Much attention is being paid these days to three topics – issues of mental health/illness, bullying, and struggles of our youth in the LGBT community – and all for good reasons.  Our mental health system is in shambles and many children, teens, and adults cannot access the services and supports they so desperately need.  Not a day passes when we don’t hear about another child who has been and continues to be bullied in school.  And several days ago, I read words written by a student on a college blog about feelings of desperation – and wanting to die – because of being gay and excluded.

Many of our children and young adults are struggling and suffering, the results of which are often devastating for them and others.   Diagnoses and labels are often affixed with little regard for the weight of the words themselves and without the cushion of support needed after these words/terms are affixed.  Autism.  Bipolar.  Gay.  One single word can change everything for a person … whether they’re accepted, included, supported, loved, hired.   Imagine having your life defined by a single word or phrase.

No question … short snippets of information and catchy terms often help us hook on and remember something.  But many times the thing that helps us remember is also the thing that makes us forget … that behind the label or term is a person.  A person who may be struggling, trying desperately to overcome obstacles that sometimes even they don’t fully understand.

One of the statements I make frequently to parents, educators, and to groups is this … a diagnosis or label does not “define” but rather it “describes.”  A definition is fixed, but a description is fluid and provides more room for explanation and information.  Words can and often do change everything, particularly when the words are facing outward toward another person.  Words also can and do hurt, but they can also explain, empathize, embrace…and heal.  And we need as much healing today as we can get.