Monday, January 30, 2012

Transitions




What do you do, when you reach the end of your last year of high school? 

For most Americans, these are the options:
  • You can continue your education at college;
  • You can take up a trade, either by attending trade school or by becoming an apprentice;
  • You can get a job;
  • You can join the service;
  • You can hit the road;
  • You may able to barricade yourself in your parents’ basement;
  • You can go to jail.


The rest of your life will be strongly influenced by this decision.  Contrary to what some people say, there is no universal answer.  It’s imperative that you make the choice that’s optimal for you.

In the education world, this process is called transition, and it’s the focus of several conferences where I’ll be appearing this spring and fall.

For the past decade or two, parents, teachers and counselors have pushed college as the best answer for any kid who had a shot at admission.   They cite statistics that show how much more college graduates earn, and how much better the jobs they get will be.

Persuasive as that argument sounds, college is not the best choice for everyone.  One of the most overlooked choices is the trades.  Originally, “the trades” meant becoming a skilled blue-collar worker – a carpenter, electrician, plumber, machinist or mechanic.

Today the range of trade jobs has expanded quite a bit with the proliferation of high-tech in medicine, mining, and everywhere else work takes place.  All that high-tech gear needs to be set up, operated, and kept in working order.  At the same time, there is still opportunity in traditional lower-tech trades, like forestry or landscaping.

All those trade jobs offer the possibility of good wages for the workers, and many have the added benefit that a skilled worker can become a small business owner.  Business ownership remains one of the surest paths to riches in our society; small business owners as a group are significantly more affluent than workers in jobs, no matter what level of education they have.

Even those “low paying service jobs” that pundits love to denigrate can offer opportunity.  Many chefs and restaurant owners came up from the ranks of cooks and servers.  For countless others, basic service jobs provided needed income while the worker was on a path to something different.

No matter how you feel about our government and foreign policy, the armed forces have been a lifesaver for countless young people.   The GI Bill sent a whole generation to college.  For others, the Army was hell on earth.  So it’s not for everyone.  Opinions in the autism community seem sharply polarized.

The remaining options – hitting the road, riding the rails, holing up in mom’s basement, or going to jail . . . . most would agree those are undesirable.  I’ll talk about how you can avoid those outcomes.

The principal point is – college is not the only good option.  Indeed, for many, it is not the best option at all.  Other paths can be richer, more rewarding, and worthy of respect and consideration.

I’ll be talking about transition and my own story at two important conferences this spring.

The first is next Thursday, February 9, at the Kalahari Resort in Wisconsin Dells, WI.  You can register for that conference here  

The second is Saturday, March 3rd at Grace Evangelical Church in Fayetteville, Georgia.  Fayetteville is southeast of Atlanta.  Register for that conference here  


Monday, January 23, 2012

What will the new DSM definition of autism mean to us?



There’s been a lot of talk about how the upcoming DSM V definition of autism will affect people on the spectrum.   Last week’s news stories really got people talking, especially when one doctors suggested 75% of today’s Asperger population would not qualify for a diagnosis under the new definitions.

Let me say at the outset, I think that 75% statement is inaccurate, and a substantial over-reaction to the available data.

Many in the community were already upset at the DSM V proposal to combine the various autistic conditions under the single category of autism spectrum disorder.  Any change in diagnostic terms or definitions is worrisome to those who depend on receiving diagnostic-specific supports from schools, social service agencies, or health care providers.

In the following paragraphs, I’d like to look at the proposed definition of ASD, and then consider what it may mean for those on the spectrum and their families.

This is the proposed definition of ASD.  For a person to be diagnosed, they must meet criteria A, B , C, and D.

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people
B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:
1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
D.         Symptoms together limit and impair everyday functioning.

As you can see, the ASD definition above is very similar to, and clearly derived from, the DSM IV definitions it will replace.  Given its similarity, I think it’s an over-reaction to suggest that any large portion of the current diagnosed population would “lose their diagnosis.”  People with Asperger’s or PDD NOS will have to obtain a new diagnosis if the depend on it for services, but I don’t think that will be a problem.

The primary mission of any clinician is to help others.  That belief make me think those clinicians will be looking at today’s Asperger and PDD NOS people and thinking, “What do I have to do to help this person?”  Most clinicians are on our side, after all.  

All of the criteria remain subjective.  That means clinicians still have great latitude in defining phrases like “symptoms impair everyday functioning.”  A clinician who diagnosed a person with an ASD condition under DSM IV is not at all likely to withdraw that diagnosis today.  I do think there will be upheaval, schools and others send people with Asperger or PDD NOS diagnoses are sent back to clinicians for re-evaluation under the new guidelines. 

I have no doubt that process will be troublesome, costly, and time consuming but I doubt very much it will result in people who had a disability diagnosis coming out with nothing.  

A doctor who thinks you or your son is on the spectrum is not likely to revise that opinion, just because the wording of the definition changes.  My experience of human nature reassures me on that point, even though I know insurers and school districts are pushing in the other direction.

In my opinion, the biggest change in the new definition is the addition of a severity grade.  Here is how they define level 1, the least severe affect:

A - Without supports in place, deficits in social communication cause noticeable impairments.  Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others.  May appear to have decreased interest in social interactions.

B - Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts.  Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.

Once again, the definition is very open-ended and subjective.  For example, the word “supports” could be taken to mean many different things.  Once again, I think clinicians will retain wide diagnostic latitude.  To me, that suggests that most people who have a diagnosis, will have an ASD diagnosis under the new definition.  And a kid who is diagnosed on the spectrum today, will still be ASD next year when this change takes effect.

I do understand why people express concern, when they say words like that might be interpreted very narrowly for the purpose of reducing the number of individuals diagnosed.  However, I do not think that was or is the intent of the framers of the ASD definition.

All that aside, I do think people who receive services face a real threat of interruption or disruption when this change takes place.  Not because they “won’t have a diagnosis,” or for any clinical reason.  Rather, I think people with autism are at risk to lose services because ignorant, ethically challenged, or financially pressured bureaucrats will use the diagnostic evolution as justification for changes that may benefit some other group at our expense.  Obviously, not every government official or service provider will think this way, but some surely will, and we need to both be on guard and continue to raise awareness about this risk.

For this is the real threat to the autistic population, from the DSM changes.  "Losing a diagnosis" is a red herring.

Many school are already using any loophole they can find to escape IEPs and their obligations under the spirit of the law.  State social service agencies can be even worse.  A big change like this could make that kind of treatment easier for them to justify and perpetrate, and that is bad.

For that reason, I urge all of you to speak up before your government officials, school boards, and elsewhere to make sure they know that a change in diagnostic wording does not in any way change our need for support.  Even if the diagnostic codes numbers change, their obligation to provide educational, social, medical and therapeutic services should remain unchanged.  If the government chooses to require people to obtain a new diagnosis to suit the new DSM, I absolutely feel it is their agencies' responsibility to pay for same, and continue services until obtained.  That is a point we must make very clear - lest this become a barefaced resource grab when the change takes effect.

I look forward to the day we have solid tests for autism, but even then, I am sure the fight with social services and schools will continue.  Because it all comes down to money, in the end.  Our various government departments  - both State and Federal - have not yet made the funding choices to fully support the population we have identified today, let alone the folks who are yet to be diagnosed.


Tuesday, January 3, 2012

Snakes Attack When You Least Expect It




You know, I have had a lot of strange experiences during my lifetime.  Some are shared with other people.  Others are not.  Until today, I never thought I'd meet someone else who was attacked by a Flying Snake.  But folks, here he is:

January's Guest Blog, You Can Choose Your Own Adventureby David Finch

When I resigned from engineering to write full-time, my first order of business was to convert the spare bedroom in my parents’ house into my own, personal office space.  I’m married, I have two kids, and I have my own house, but my parents still work -- my dad is a farmer and my mom a teacher -- so their house is quieter than mine, and thus more conducive to thinking. 
            Their food is also free, and their neighborhood is prettier.  So why wouldn’t I sponge off of them?  When I need to clear my head at home, I might go for a walk and see, at best, a dog peeing on one of the scrawny saplings our developer planted along the sidewalk, or half a dozen kids zipping around on motorized scooters.  Images that don’t inspire my best thinking.
            But my parents’ house is situated in a sleepy rural neighborhood in which sizable new homes are surrounded by impeccably landscaped yards and massive old trees.  Down the road a little way is a pond, and beyond that, some woods.  At the pond, I’m guaranteed to spot a handful of turtles mingling on a log, a nervous muskrat trolling along the shoreline, or half a dozen hawks riding air currents overhead.  It’s peaceful, and my mind can wander as needed, which is usually -- usually -- a good thing.
            I was out for my afternoon walk one day last September when I spotted a dead snake lying belly-up on the side of the road.  He wasn’t big, this snake, maybe eight or ten inches long if you stretched him out.  I gasped, leaping sideways into the road to avoid stepping over it -- leaping without looking into the road where cars drive, to avoid stepping over a tiny, dead snake.
            Here’s the thing: I hate snakes.  Or rather, I fear them.  I always have.  In the second grade, my class watched a film strip showing the gruesome manner in which a snake kills and consumes its prey: you’re either bitten to near-death and swallowed, or squeezed to near-death and swallowed.  That was it.  Those were your options when it came to being attacked by a snake.
             From that day forward, I understood that the only thing a snake is supposed to do in life is to kill -- to strike its victim, savagely and horribly, with precision, then detach its jaw, and subsequently devour the twitching body of whatever animal or second grader it just attacked.  I diligently limited my experience with snakes to the pages they occupied in my parents’ Encyclopedia Brittanica.  Even there, confined to the page as two-dimensional images, I was terrified by them.  Their horrible bodies, their vicious fangs, those cold, lifeless eyeballs.  I could look at a picture of a rattle snake for maybe ten seconds before I got spooked and had to turn the page, fearful that it might come to life and chase me around the house. 
            If I had to guess, I would say that the snake I encountered lying dead in the road last September was a garter snake.  Totally harmless, not a creature to fear.  There was nothing particularly remarkable about him, either, except for the fact that his body, despite having expired at some point, was still perfectly in tact, and, curiously, was resting upside-down.  I took a moment to consider how this might have happened, and drew a blank.  Was he showing off to his friends when he realized he couldn’t get himself right-side-up again?  Had he died while they went for help? 
            I tossed a small rock at him to make sure he was actually dead and not just trying to deceive me, and when he didn’t react I moved in for a closer look.  I felt as though I was walking on a tight rope between two skyscrapers; my hands were sweaty, my mouth dry and cottony.  All this, in response to a lifeless snake no longer than my flip-flop.
            I expected I might find some guts or gook or something, but there was none.  He hadn’t been flattened by a car or bicycle, and there was no trauma on his flesh to indicate he’d been attacked by a predator or pawed to death by a playful neighborhood dog.  His body just lay there, his lime green underbelly glistening in the sun.
            I continued on my walk, but couldn’t stop thinking about the snake.  How did he end up like that? I wondered.  And suddenly it hit me: Had he been dropped?
            I was halfway to the pond when my theory began to take shape: A hawk must have nabbed the snake and taken him for a little ride before losing his grip and dropping him a few hundred feet to the pavement below.  Or perhaps the snake wriggled free in an instinctual and ironic attempt to escape the clutches of his captor, only to realize how screwed he was as he plummeted to his death. 
            My thinking continued: As light as the snake must have been, a fall from a substantial height wouldn’t necessarily splatter him, but it would certainly be enough to kill him.  Wouldn’t it?  Yes, he must have escaped the clutches of a hawk, fallen from a great distance, and landed right there where he died.  That’s the only way it makes sense.
            I was quite satisfied with my sleuthing and had all but moved on when I realized the terrible implications of my theory.  If the snake had been dropped by a bird as I suspected, this would mean that at any given point in time, a fucking snake could just fall unexpectedly from the sky and land right on my head.  I had never in my life considered this to be a real possibility until that moment, and just like that, I had a new fear.
            Suddenly, the road, the ditch, the neighbors’ driveways, the trees—the entire landscape—was just crawling with imaginary snakes—which are, without a doubt, the worst kind of snake.  In fact, the only thing more terrifying than a real snake is an imaginary snake, because unlike a real snake, the imaginary kind always appear out of nowhere without any warning.  Imaginary snakes never slither off into the grass to avoid getting stepped on.  Instead, they chase you at high speeds knowing that, at some point in your panicked sprint, you’ll stumble and fall.  And that’s when they’ll drop from the sky to wage their brutal assault. 
            I knew at that moment that I would have to find a new place to write.
            This is what happens when obsessive thinking is married, as it is in my neurological construction, with a vivid imagination.  I tend to get pulled into these absurd and terrifying rabbit holes, unable to snap out of it and think about anything else, for hours or even days at a time:  What is my hotel room going to look like when I go to New York next week?  Kristen said she’d be home at 4:00, and it’s 4:02, where is she?  Why was that store clerk so rude to me?  And it’s not exactly my brain’s fault when I get stuck on these thoughts, but mine.    
            I may not be able to control which thoughts pop up at any given moment, but I can decide, consciously, whether or not to indulge them.  I can’t choose to never again think about a snake, but I can choose to create a ridiculous storyline involving snakes being launched at me by hawks, and apparently I can even choose to accept that storyline as a likely reality.  Even if it means scaring the crap out of myself, despite the fact that I don’t really enjoy feeling scared. 
            So, why wouldn’t I use my powers of creativity and self-persuasion to imagine a scenario in which snakes don’t fall from the sky?  A scenario in which snakes do slither off into the grass for fear of being trampled?  In other words, why do I sometimes choose to believe silly, illusory thoughts, rather than reality -- which is, by definition, real?
            I don’t have an answer to these questions.  Fortunately, though, it doesn’t really matter why I choose to believe one thing and not another; all that matters is that I can choose -- that much I can control. 
            So I’m working on it.  I’m practicing interrupting the cycle of terrible, worrisome thoughts with an act as simple as taking a breath, and I’m also practicing not getting pulled into the rabbit hole to begin with.  Two very different endeavors that are equally worthwhile, both of which are totally within my control.
            And I must say, it’s going fabulously.  I still obsess over hotel rooms for some reason, but no longer am I convinced that snakes can rain down on me from the heavens; I now carry an umbrella only when it’s raining.

About the author: David Finch’s essays have been published in The New York Times, Slate, and Psychology Today.  His debut memoir, The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband, was published by Scribner on January 3, 2012.  David lives in northern Illinois with his wife, Kristen, and their two children.  Please join David on facebook.

Monday, January 2, 2012

Looking forward at the autism spectrum




Where is this autism spectrum of ours headed?

It’s the time for New Year resolution, and mine is that we autistic individuals rethink how we present autism to the public.

By now you’ve likely read that the latest version of the DSM guide proposes to merge Asperger’s, PDD-NOS, and all other autistic conditions into one diagnostic category, to be called Autism Spectrum Disorder.  

A number of parents and advocates for people with very severe autistic impairment have criticized that move, saying it will render people with both severe autism and intellectual disability almost invisible.

Some even feel the traditional autism diagnosis has been “taken away from them,” to be replaced by a broader, more Asperger-like diagnosis. 

I agree with those sentiments.

Thirty years ago, the largest percentage of kids diagnosed with autism also had some degree of intellectual disability and were by any standard, near 100% disabled.  Today, the majority of kids diagnosed with autism do not have intellectual disability and most will grow up to live and work independently.   That’s not because the number of kids with intellectual disability has dropped; it’s because the autism diagnosis is applied to a much broader swath of population. 

To understand how this has happened one need only look at how the phrases used in the definition are interpreted.  For example, “Substantial communication impairment,” was at one time a euphemism for, “unable to have a conversation.”  Today it can mean that, or it can mean, “has difficulty reading body language and interpreting unspoken messages.”  The range of meaning of those three simple words has expanded tremendously.

To a lay person, an autistic person who cannot hold a normal conversation presents totally differently from one who is highly articulate, but misses subtle social cues and facial expressions.

Yet that is the reality of the autism spectrum as we know it today.  We have a large and growing population of very different individuals, under one very broad diagnostic umbrella.

As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves.  By doing so, they are altering the public’s perception of what or who an autistic person is or may become.

This reshaping of perception has moved the public’s concept of autism higher on the IQ range, with more and more people seeing “autism” as a euphemism for “eccentric geek,” or, “genius,” which is most assuredly is not.  Popular television shows like Parenthood and Big Bang Theory reinforce that trend.

At the same time, the population of people with intellectual disability and severe autistic impairment remains fairly constant.  Those individuals are not generally able to speak for themselves.  They are most often out of the public eye, and they may rightly feel they are rendered nearly invisible by this change in perception. 

What might we do about this?

For starters, all of us who occupy the more verbal and articulate end of the autism spectrum can keep in mind that it is a spectrum, and some of our fellow spectrumites are much more verbally challenged than we. 

Every time a person with milder autism speaks of his own challenges, those words add to the body of information the public uses to define autism.  The more we move that balance from disability toward eccentricity, the more we harm our cause, albeit unwittingly and with the best of intentions.

When self-advocates’ autism talk shifts primarily to rights and entitlement, the need for new therapies, treatments, and services is forgotten.  When we focus on entitlement, we create the impression that our problems can be solved by legislative action, much like the civil rights laws did in the sixties.

Entitlement and equality are great ideals, but they do not remediate disability.   We must not lose sight of that fact, when building autism awareness.  We are not equal people fighting for equal treatment.  We are disadvantaged people fighting for remediation of our disability, and the opportunity to be treated fairly by society.  That is a very different proposition.

Autistic brain differences may indeed be a component of creative genius, but they are more often a contributor to significant disability.  We need to balance our own desire to “think positive about our potential” with the need to keep the public more in touch with current reality and the services we so desperately need.

The autism spectrum still includes a large population – several hundred thousand in the US alone – who currently have no realistic hope of substantial employment.  That is a tragedy.  And it’s not because they are discriminated against.  It’s because they are disabled.  Not only that, they are disabled for reasons we don’t understand and in ways we don’t know how to fix.

I suggest that is the thing we need to fight for the most, as we build autism awareness.  We need help remediating the many, varied, and often profound disabilities that touch those of us with autism.  Only then can many of us fully integrate with society in the way we all desire.

For this New Year, I wish for all of us to keep our more challenged brothers and sisters in mind whenever we discuss autism with the public.  It’s great to be upbeat, but for many, autism remains a crippling disability.  The fact that some of us emerge from disability as an adult does not make the challenges faced by others who do not any less real or meaningful.

If we are to be a truly great society, we must aspire to a great quality of life for all, and that means those of us who cannot speak for themselves must not be forgotten in that quest.