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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Snap Out Of It…

I love this line from the film “Moonstruck,” when Cher tells Nicholas Cage to snap out of it after he says he loves her (she is planning to marry his brother).  It’s a favorite that I often use when a particular topic arises.

The topic is labels and let me first say this…no one likes to be labeled anything.  Labels are restrictive and create barriers.  They convey things to others that are often incorrect and can be discriminatory.  But…they can also open doors and create avenues that may otherwise not be available to pursue.  And they also help to bring explanations and reason to things that may truly need clarity.

All this to say, it always confounds me when I hear a parent say that they know their child is struggling yet don’t want to have them evaluated.  My initial reaction is to empathize, saying that I understand that finding out “why” can be scary and overwhelming.  It taps into fears of the unknown, of what we may *think* we know about something, and of what finding out will really mean.  But it takes less than 10 seconds to move from an empathetic reaction to a “snap out of it” response mode.

No parent wants to think or be told that their child has autism.  Or is bipolar.  Or has ADHD.  What parent would ever want their child to be “labeled” no less to face the reality that others will know about it too.  What parent would wish therapies or being pulled out of class for support on their child.  None.  But parents who resist or refuse to “face the music” need to realize a few facts:

  1. They need to separate their own preconceived notions and “what if’s” from the realities facing their child.
  2. They need to recognize that every day, week, and month of delay is precious time wasted.
  3. They need to understand that the label is essential to securing the supports and services the child may need in school…and beyond.

When I hear a parent express their concerns, I ask whether they prefer speculation or knowing.  Whether the status quo is working.  Whether their child is on a trajectory of success or failure.  Of *course* every parent wants their child to be healthy and happy.  To get good grades, make friends, and be successful in the world.  These are foundational desires all parents share.

Yet many children have been struggling for years, taking a huge toll on the child in immeasurable ways.  Repeated “F’s” on tests can be seen (and can be devastating to the child), but it’s the things out of view – the sense of failure, of not feeling smart, of always having difficulties – these are the things that can take away a child’s desire to even try anymore.  And it doesn’t matter if the child is in 3rd Grade or is 15-years-old; feelings of despair accumulate and struggling saps the drive and hope for a better tomorrow out of the youngest of children.

Do parents who resist an evaluation and “label” think that the struggling is going to stop at will?  That the child is intentionally failing math, purposely not making friends, or planning to have behavioral issues in school?  Of course not.  And this is where the “snap out of it” message needs to be said…and heard.

It is incumbent upon parents of children for whom struggling defines their existence to put their own fears aside and mobilize.  With the end of the school year upon us, summer is the time to secure an evaluation and to plan for how to make things better in September and beyond. Yes, this may mean special education services, frequent meetings with school, and involvement of private clinicians and outside experts.  But which vision do you choose…pretending the issues don’t exist, hoping they’ll just go away with time, or telling your child that you’re now “on the case” and that things are going to improve?

A label is words.  Dyslexia.  ADD.  Asperger’s Syndrome.  They only have power if parents allow them to.  These words are also doorways to answers and strategies that will move the needle from failure to success, defined differently for every child.

If you happen to be one of the parents who have allowed your own fears to override getting the information – and diagnosis – your child needs, please…snap out of it.  Your child is depending upon you to do so.

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…

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.