ADHD and what it tells us about society

Roughly 11% of kids age 4-17 have been diagnosed with ADHD according to 2012 statistics from CDC.  More than 1.1% has been diagnosed with autism.  Both conditions are much more commonly diagnosed in boys, which means one in 5 school-age boys has an ADHD diagnosis, and one in 20 has an autism diagnosis. Expressed that way, it's a lot of kids!

There is substantial overlap between autism and ADHD.  Almost half the autistic population also qualifies for an ADHD diagnosis and they share genetic and neurobiological commonalities.  Some people think of ADHD as a subset of autism.  It's common for a child to first get an ADHD diagnosis, and later be re-diagnosed or additionally diagnosed autistic.

So-called social disability plays a large part in both ADHD and autism diagnoses. To paraphrase the current DSM5 these are some of the traits of social disability that a person with ADHD will exhibit:

• ·      Has difficulty sustaining attention in tasks or play activities (e.g., has difficulty remaining focused during lectures, conversations, or lengthy reading).
• ·      Does not seem to listen when spoken to directly (e.g., mind seems elsewhere, even in the absence of any obvious distraction).
• ·      Often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace
• ·      Is often easily distracted by extraneous stimuli (for older adolescents and adults, may include unrelated thoughts).
• ·      Fidgets with or taps hands or feet or squirms in seat.
• ·      Often leaves seat in situations when remaining seated is expected
• ·      Often talks excessively.
• ·      Often blurts out an answer before a question has been completed (e.g., completes people’s sentences; cannot wait for turn in conversation).
• ·      Often has difficulty waiting his or her turn (e.g., while waiting in line).
• ·      Often interrupts or intrudes on others 

If you are anything like me, it’s hard not to see yourself in the list above.  I presented these traits to my students at William & Mary and everyone in class agreed they’d done each of those things at one time or another.  The diagnostic behaviors are so common that I find it hard to pathologize them at all.  

One of my psychologist colleagues pointed out that diagnosis is a matter of degree, and a trained psychologist is supposed to be able to discern the difference between “ordinary excessive talk,” and “pathological excessive talk.”  I have no doubt that is exactly what the framers of DSM intend; indeed, they make that point in the supporting text.  However, I have my doubts it works that way in real life.

Psychologists seldom wade into schools, looking for students to diagnose.  Instead they respond to the entreaties of parents and teachers.  “This kid is bouncing off the walls,” and “that one will never shut his mouth.”  Some of those kids surely do have ADHD, but others may have nothing more than a case of impatient parents or sick-and-tired teachers.  How many of today's kids would still get ADHD diagnoses, without the "supporting complaints" of adults?

I've described autism as a way of being; a mix of disability and exceptionality.  Others may take issue, but I see ADHD the same.  For those of us who grow up this way, it's how we are; not a broken state that needs repair even if medications do help some of us function better.

Another way to look at this would be to ask how many people would ask for help for ADHD on their own, as opposed to "getting helped" by adults who watch them.  In my family we go both ways as regards embracing or declining ADHD meds, and I am sure lots of others feel the same.  

Most cases of ADHD are diagnosed around age 7.  Half those kids end up on Adderall, Ritalin, or some other potent drugs.  Most times the kids have no say about receiving medication.  In some cases, they benefit from the prescriptions, but in other cases the adults are the beneficiaries. The kids are tranquilized and robbed of spark and creativity. That feeling of drug induced flatness is a major reason adults refuse psychiatric meds.  Even when the medications are beneficial there is a cost, and I believe we deserve the right to choose.  How that is reconciled with parents rights over children is a question I don't have an answer for.

Medical professionals don’t like to see their diagnoses questioned, nor do they appreciate the suggestion that their evaluation and medication of a child may be strongly influenced by the representations of the responsible or referring adult.  I think we’re right to ask questions.  When we have a set of diagnostic definitions that are sloppy and imprecise, and so much is left to interpretation it seems inevitable mistakes will be made. 

That is one reason researchers push for biomarker tests, but at this time none is available. If and when a test appears, I wonder what it will reveal.  I think the sheer numbers of ADHD kids raise important questions.  First, might ADHD be a set of behaviors that can come out in anyone, given the right circumstances?

Second, can any behavior set that is observed in 20% of boys rightly be called a pathology?  Is it moral to make the preferred response medication for something that common, or is the ethical action learning how to deal with it non medically, which was our response in generations past?

The #neurodiversity movement got its start in the autism community, where people argue that certain traits of autism are part of the natural range of human diversity.  Accepting that autistic traits occur naturally does not deny the very real disability of autism; rather it places it in a historical perspective.  If autism is part of human diversity, and it’s always been part of us, what can history teach us about how we approach autism in this time of supposedly greater awareness?

If ADHD is 7-8 times more common, the neurodiversity arguments for it are even stronger.  In this writer’s opinion, the reason we do not hear more from the adult ADHD community is that fewer adults feel disabled by ADHD, or they are diagnosed with both autism and ADHD but primarily engaged in autism advocacy. Few adults speak out for the rights of people with ADHD once they have the right to choose meds or not.  They have their rights.  

Another likely issue is that there is considerable shame in being diagnosed with a disability in our society.  Most kids outgrow their ADHD diagnoses to the extent that they do not need support services as adults.  Many ADHD kids are happy to leave that part of their childhood behind; feeling no need to engage in advocacy for the community as adults.  Autism, as a lifelong disability for many, encourages adult advocacy.

By virtue of its ubiquity, ADHD is the leading example of neurodiversity in action.  The current response of society to medicate it into submission, when contrasted with its commonality, should give all of us serious pause for thought.  

In comparison, fifty years ago depression was a serious problem.  Sadness and depression remain concerns today.  ADHD was not an issue then, or at any previous time in human history.  Why is it such a big deal now?  Is this an example of how society has lost tolerance for a common set of behaviors and substituted medication for acceptance and patience?

(c) 2018 John Elder Robison

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar at the College of William and Mary in Williamsburg, Virginia. He's also a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts and advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay will give you food for thought, actually printing and eating it may make you sick.