Autism Isn’t A Day Or Month

I’m a big supporter of raising awareness of causes and issues, encouraging people to rally to bring about change.  Yet when it comes to autism, a day or a month simply won’t suffice.

On various media outlets over the past few days, individuals have been sharing their insights into the realities of autism.  Some were identified as “experts” which, in my opinion, is a term that needs to be affixed carefully.  There was one – a mother – who spoke about raising her child with autism, sharing the realities with an emotional overlay that was as real as it gets.  This is the true expert.

Two of the other expert perspectives in particular stood out to me, each warranting a response and further discussion.  And while there may be those who might question from where I am gleaning my insights or upon what soapbox I’m standing, I’ll say that after spending 15+ years in the trenches in this arena both professionally and personally, I’ll take my chances.

One of the experts I’m referencing stated that parents need to push for services for their children.  Absolutely true.  Could not agree more nor cannot overemphasize the importance of parents taking charge in this regard.  Yet there was, and continues to be, a critical oversight here and one that is consistently overlooked.  It’s that parents need to learn *how* to push for services for their children, particularly in school where the lion’s share of these services need to be accessed.

There is an assumption, and a misplaced one at that, that parents automatically or miraculously acquire these skills … that somehow these skills simply appear after their child receives an autism spectrum diagnosis.  And this assumption even occurs with parents themselves who, in their jobs or professions, may have skills that they “assume” will transfer to parent advocacy and school interactions, but sadly do not.

Just like the social skills/social thinking that their children need to learn through direct instruction, parents also need to be taught how to navigate through the educational arena in order to secure the services that experts continue to state (and parents know) their children need.  And need now.  I often say that special education requires a master’s level of skills that continue to evolve over time.  Telling parents that they need to work hard over the long haul to get their children what they need is one thing.  Teaching them how to do so is another thing entirely.

The other expert on a different media outlet stated that as children reach high school, they need to learn life skills.  What?  As they reach high school?  Ever hear the expression “too little, too late?”  Here’s what’s wrong with this statement.

Part 1 — we first need to acknowledge that there’s a stigma attached to the phrase “life skills” so we need to rename it.  Parents (and others) equate it with things that, for many children on the autism spectrum including those with Asperger’s Syndrome, simply do not apply.  But there’s another huge bucket of life skills that they most definitely *do* need to learn (and be taught) in order to have any hope of successfully transitioning after high school graduation into college, employment, or independent living.  Once we eliminate the barriers created by the words “life skills” and broaden what it means, we can then begin to ensure that these skills are taught starting in preschool…and for all children.

Part 2 — when the teen reaches high school, it’s far too late to start thinking about the “life skills” they will need to transition into the adult world.  Even though transition planning is now supposed to begin at age 14, most schools pay little attention to the skills our children need to live as adults in the world.  We don’t start to teach reading when the child is 12 years old, so why would we wait until the child is a teen to begin teaching these critical skills?  Skills that are considered “life skills” need to hold equal weight with academic skills in terms of their importance.  And for some children, they’re even more important.  This isn’t an either/or scenario and parents should not be forced to choose (and this happens frequently) between helping their child improve their reading level or how to complete a job application or to live with a roommate in college.

The attention to autism this month and any month helps to raise the volume of discussion about a diagnosis impacting families, businesses, and our society.  And whether you believe the recent CDC stats or not, the reality is that there are millions of children and teens today with an autism spectrum diagnosis growing up to become part of our adult world.  As future employees, tomorrow’s college students, and the next generation of parents themselves.

Examining how we’re approaching autism is not an easy topic nor task, but real change is never easy.  What it does require is for us to honestly assess whether we’re providing parents with what they need to effectively help their children succeed in school and beyond.  And it also requires us to closely examine whether we’re truly doing what we need to do to help our children reach adulthood as prepared as possible.  This requires more than a day or month.  It requires a lifetime.

 

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Required, Desired…Enough With Semantics. It’s Needed

I know…school’s out so who wants to think about it right now.  But here’s the thing – there’s a situation impacting millions of children and their ability to succeed in school.  And the implications go beyond high school graduation.  Many parents understand it, yet many are struggling to get beyond it.

Decisions are being made by schools every day about whether a child should receive “x” service or support that they clearly need based upon whether someone believes it’s “required” or “desired.”   And I’m not talking here about what special education laws or IEPs dictate.

Let’s take tutoring over the summer, for example, when a child is struggling with reading.  Many schools (but not all) would say that it’s required because they’re accountable, particularly if the child has an IEP, for helping the child read at grade level.  So many schools provide this support.  Now let’s look at social issues – e.g. the ability to have a conversation with a peer or the ability to interpret non-verbal cues.  Many would say that this is less of a necessity (i.e. it’s not required) so no need to address it over the summer…or even during the school year.

Not a week goes by when a parent doesn’t ask me this question – “Can we put social skills on our child’s IEP?”   Somehow the message that academics are the only thing that matters remains pervasive even though anyone would say that living in a social world requires social skills and understanding.  It seems as though being able to read a college syllabus (certainly important) trumps being able to work on a team.  Since when?

We tend to categorize things in order to prioritize them – the basics before the flourishes.  The problem here is that the scale of priorities is painfully out of whack.  Schools are making decisions about what they believe are the “must have” vs.  “nice to have” skills with little grasp of the long-term ramifications of *not* developing skills that they see as less than critical.

Ranking academics above other skills using a “required or desired” model is failing students miserably, as it ignores the needs of many children in their quest for success in school and beyond.  And when a parent asks if social skills can be included on their child’s IEP, it conveys plenty about the information they lack or the misinformation they’re receiving.

I doubt that anyone would want a child to be unable to meet tomorrow’s expectations in college or on the job because those who weren’t looking or thinking ahead decided what was required.  Parents know, yet they are often ignored when these critical decisions are made.

Many struggling children grow into struggling adults.  And if the purpose of school is to prepare children for adulthood, we’re failing them in this regard.  Forget the semantics.  If we want our struggling children to be ready to transition out of high school and into the “real world,”  it’s time to see their needs today and plan for tomorrow.

And It Gets Harder As *They* Get Older

I’m a major Crosby, Stills, Nash & Young fan and their song “See The Changes” tops my list of favorites.  So I hope they won’t mind that I’ve changed the word “we” to “they” because I’m talking about children.  It does get harder as they get older…much harder.

Ask any parent and they’ll tell you in vivid detail the age and stage that was the hardest for and with their child.   Every parent knows well when the bags under their eyes deepened because of lack of sleep, worry, or worse.  And for parents of children with Asperger’s Syndrome, the stage can be ongoing.

During the preschool and elementary years, bullying and exclusion can often be the norm and because this is when a child develops his or her sense of self as it relates to peers, the impact can be indelible.  Move into middle school and the social learning that may have occurred earlier now seems to have little relevance because talking about frogs and admiring each other’s shiny lunchboxes has shifted to Facebook and exposure to things that were never in our purview when we were kids.

High school arrives and so does dating, texting, sexting, driving, and a host of other social pressures driven by social media and often crippling adolescents with Asperger’s … or leaving them in a state of constant struggle, trying to figure out what’s happening around them and what they’re supposed to do about it.  These school years alone and the issues that emerge are enough to weaken even the strongest parent, but it doesn’t end with high school graduation.  No…the real challenges emerge when college and life hit – often like a mack truck.

Parents of younger children with Asperger’s work hard to build a foundation of social understanding in preparation for the teen years.  Parents of teens say that their worry (and hope) is that they have solid footing in social thinking to be their compass for what comes next.  Yet for many, this simply doesn’t happen because the freedom that accompanies English 101 and on-campus parties results in difficulties beyond what many parents anticipate.  And when this happens, all bets are off.

Parents typically relish when their children start college because they believe – rightly or wrongly so – that their job is basically done.  Not true for parents who know that, despite the fact that their child may be 18 and have a 4.0 GPA, they simply aren’t prepared for the demands of young adulthood.  And hearing college administrators tout at parent orientation, “Your child is now considered an adult” just doesn’t apply…at least not concerning their child.  The word “vulnerable” describes it best.  And with it comes a host of issues that have real world consequences for which an explanation of Asperger’s Syndrome holds little weight.  Worry intensifies…and with good reason.

Just as life gets harder as *we* get older, it also gets harder as *they* get older.  Watching a toddler stumble is expected.  Watching a college-age child do so is something entirely different.   The world suddenly expects more from them.  They expect more from themselves.  And parents hold their breath because getting older is only part of it…

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.

 

 

Leveling The Playing Field

Parents of high school kids know … it’s SAT and ACT season again.  Stress is on overdrive as everyone is striving for ways to improve scores – tutoring, prep classes, working through the huge practice books at home.  All eyes are focused on the thrill of receipt – opening the mail to find those glorious oversized packages with writing on the outside that says “You’re accepted” or “Welcome.”  Believe me, I’ve been there with my own child so understand it well.

I just read an article in The New York Times entitled, “It Takes A B.A. To Find A Job As A File Clerk” which focuses on an Atlanta law firm that requires every employee – including the in-house courier making $10/hour – to have a bachelor’s degree.  The firm’s managing partner said that this requirement shows that every employee has made “a commitment” to their future and not just a paycheck.  Sounds reasonable since college is really about honing skills needed in most every line of employment – organization, planning, meeting deadlines, self-discipline, flexibility, and teamwork.

But here’s the problem with requiring all employees to have a degree – there’s a big difference between equal and fair.  Equal means the same but fair means, well, fair.  Respecting and supporting individual differences and recognizing that not everyone fits into the same box.  It means understanding that a 5th Grade child with dyslexia reading from a 3rd Grade book and receiving an “A” on an assignment is fair even if others are reading from the 5th Grade text.  That a college student who requires extra time and a quiet room to complete an exam is fair even if others are taking the same in a lecture hall with 150 other students.  It’s about evaluating each person as an individual and on their own merits vs. expecting the same for all.  This “life lesson” begins in school and since school is about preparing children for life, shouldn’t the same principle apply to the workplace as well?

Expecting every employee to hold a B.A. in order to secure employment means that many bright, capable, and talented young people will be overlooked.   Believe me, I’m a huge proponent of college and helping all students receive their degree, yet not everyone can reach this milestone.  For some it’s financial.  For others it’s access.  No matter the reason, it’s unfair and unreasonable to assume that the reason a young person does not hold an undergraduate degree is because they don’t aspire for success or don’t want to invest in themselves.

There are many students with learning differences, Asperger’s Syndrome, or ADD – with amazing skills and who would be top performers in the workplace – who are unable to navigate the complexities of college.  Maybe they tried but it didn’t work.  Maybe they were told to not even consider college as an option.  Regardless of the reason, concluding that a young person without a B.A. is only focused on a paycheck is an arbitrary measure and one that places barriers where, in all likelihood, enormous barriers already exist.  And this includes even when, according to a recruiter referenced in the same article, 800 resumes are received for one job.

We all know people sans a college degree who have made contributions to every area of life – business, the arts, philanthropy, many achieving far more success (recognizing that success is subjective) than those with B.A.’s.  And this certainly includes many with learning or similar differences for whom their commitment to themselves is defined by the struggles they have endured and their “never give up” attitude to forge ahead.  College is wonderful, no doubt, yet self-respect and self-worth trumps it every time.  There’s a reason it’s called a playing field and not a playing box.  Fields are larger and allow for many to play.  Whether school, employment, or life, the larger the field the better.

Struggling Kids Become Adults … Then What?

Did you know that the costs to incarcerate someone is more than it is to educate them?  I’m sure this is the case in most states as would be the statistics that show that a fairly hefty percentage of the young adults and adults in prison have undiagnosed disabilities – learning, developmental, behavioral, emotional, mental.

This isn’t about scaring parents into thinking that their struggling children are heading to jail.  Rather, it’s about asking parents to look toward the horizon, where high school graduation, driving, college, employment, and independent living comes into play.  It’s about acknowledging that if your child is struggling today, they may well grow into a struggling adult.

No parent wants to know that their 4th Grader has dyslexia or their 9th Grader is bipolar.  No parent wants to think about how their 6th Grader is going to manage through the social challenges of middle school when their child has Asperger’s Syndrome or how their gifted 12th Grader with ADHD is going to handle the demands of college.  But here’s the reality – acknowledge and work to support it today, or know that the gaps grow wider and the consequences far more serious with each passing year.

Over the past few months, I’ve read actual posts from college students asking to pay others to write their college papers or take their online classes for them.  Nothing new as we’ve heard about this for some time.  And while I’ll readily admit that some may be lazy or just not interested in doing the work, others may have been struggling with reading, writing, or math for years.   This creates enormous pressure for the child which morphs into serious challenges for them as adults, and while they learn ways to “smoke and mirror” their deficits, eventually the smoke clears and the mirror cracks.

Ask any college administrator about the increasing numbers of freshman who are taking remedial classes – and more than one or two and often for multiple semesters – because they are woefully deficient in basic academic skills and this tells us plenty.  Ask any college health services department about the exploding numbers of students seeking mental health counseling and this tells us plenty.  And ask any manager about the numbers of Gen Y employees who cannot write a well-developed report or develop a budget and this tells us plenty.   These issues didn’t just appear…many have been hidden in plain sight for many for years.

Parents are stretched thin, often struggling to balance work and family with a host of other responsibilities.  And having just one more thing to do is often enough to tip the scale beyond being able to manage.  Yet I would bet that there isn’t a parent who doesn’t want their child to be able to live and function as a competent, self-sufficient adult.  For many, however, this is a goal that comes with additional requirements in order to achieve it.

Maybe your child won’t be posting on Craigslist or a college Facebook page for someone to write their Sociology paper, and maybe your child won’t find him/herself struggling with emotional issues that makes keeping a full-time job impossible.  But maybe they will.  Wouldn’t it be better to look the needs in the face now, while they’re young, instead of hoping they’ll go away when they become young adults?  We give our children roots as well as wings to fly, but for many, they need far more.