Wednesday, April 24, 2013

When is something Terrorism, and when is it just crime? It's time to start dissipating the cloud of fear

When is deadly violence terrorism, and when is it murder?  In the wake of the Boston Marathon bombings there seems to be a universal outcry to catch and punish the “terrorists” who are responsible.  I put that word in quotes because I question whether that’s the right thing to call them, in light of what we know.

Over the years, Americans have seen many killings, and even more malicious injuries.  Until very recently, those events were called what they are:  violent crimes. Sometimes one person was killed or injured, other times it was many.

The chronicle of American history includes all sorts of horrific actions:
  • -       Shooting people from a rooftop;
  • -       Throwing grenades or explosives into crowds
  • -       Driving a vehicle into a crowd, crushing, maiming and killing;
  • -       Blowing up cars, trucks, and buses, occupants and all;
  • -       Deliberately wrecking a bus or train;
  • -       Burning people alive in homes and even churches;
  • -       Hunting down and killing people, one after another.

When the perpetrators were caught, all sorts of explanations were offered:
  • -       God made me do it;
  • -       The voices in my head said “kill;”
  • -       I hate (fill in the name of religion/ethnic/racial group);
  • -       They owed me money;
  • -       They did me wrong;
  • -       I’ll teach them to disrespect me!

Other times, no explanation was offered.  Some perpetrators were killed, or killed themselves.  Others simply remained silent.  People were left to wonder.  Thousands and thousands have died.

Often there was one perpetrator, acting alone.  Sometimes bad guys teamed up, for a variety of reasons.  Some were members of gangs, or clubs.  Sometimes one person was killed; other times twenty, fifty, or even more lay dead.

Judged by the standard of our violent history, the Boston Bombings are far from being our most horrific.  What the bombing was, was visible.  The world was watching the Marathon, and many television cameras caught the attack and its aftermath.  That’s not to dismiss what happened; I simply want to put the crime in perspective.

With this background, I ask you:  Why was this event called terrorism, and not murder and mayhem?

The common explanation seems to be this:  The bombers were Muslims who believed in violent jihad.  That makes them terrorists.

I think that’s wrong.  I say they are common criminals, and the fact that they killed in the imagined name of Allah is no different from the many other criminals who have killed because their God told them to do it.  Crime in the supposed name of God has a long, long history.

Terrorism is defined as the use of terror as a means of coercion.  What exactly was being coerced here?  The attackers made no statement.  They simply attacked, as most criminals do.

When a recognized terrorist group stages and attack, and then claims credit, that is terrorism.  That didn’t happen in Boston.

We have a choice, folks, in how we want to live.

If we choose to define domestic crime as terrorism, we give in to fear.  That is already a huge problem in America.  Right now, parents refuse to let their kids walk to school.   Adults in cities put three locks on their doors and use them all.  Small-town police departments wall themselves off from the public behind inch-thick bulletproof glass. And of course you can’t enter most government buildings or any airport without going through a security screening.

All those things are expressions of fear.   When we compare our life today with the life of our parents, none of those worries are founded in reality.  Yet our lives are significantly complicated and compromised by the things we do to “protect ourselves from unseen terrors.  The chances of any one of us suffering an attack are no greater than they were for our grandparents, assuming they too were here in America.

It’s only our belief that we are in danger.  It’s not real.  When we give in to that belief, we give away our freedom.  We live in fear. 

If we go back fifteen years – to before the events of September 11 – and add up all the people killed by acts of terrorism on American soil, and compare that number to the number of Americans murdered, or the number who took their own lives . . . terrorism simply is not a real threat to us.

It’s only a threat because its visible, and we give in to fear.

In that period of time, over 175,000 Americans were murdered.  Just over 3,000 of us died from terrorism; most in one attack.  In that same time frame, millions died of various natural causes.  Few people fear death by murder.  Many people fear death from cancer or heart disease. However, I’ll bet just as many fear terrorism.  Given the numbers, it doesn’t make sense.

I say its time to call this crime what it is – ugly murder and violence.  Try the accused for murder, put them in prison, and put it behind us.  Stop the talk of terror, and go on with our lives.

We need to dissipate this ugly climate of fear.  It’s like an invisible corrosive gas, eating away at our liberty and happiness.

If al-Qaida stages and attack on our soil and claims public credit, call it terrorism, and fight back.  If North Korea or some other government launches a missile at America, call it an act of war and respond.   Otherwise, call criminal violence in our country what it is:  Crime.

Stop giving in to terror.  Stop living in fear.  

Sunday, April 21, 2013

The Boston Bombers are caught, but a troubling legacy remains . . .

April 24 NOTE:  I have a follow on essay that builds on this one.  Read it here

The Boston Marathon bombers have been caught or killed.  That’s the story that has dominated all the news networks since the shootout with police a few nights ago.

While I applaud the efforts of the police, and I’m glad the presumed criminals are off the streets, I am troubled by a few of the things that happened, and I wonder why so few people are talking about some of these issues I observed as the drama unfolded . . .

First – the effective imposition of martial law in Watertown.

For the first time in my memory, the police essentially imposed martial law and closed a city as they searched for a criminal.  While I appreciate that this made their job easier, it cost innocent residents their liberty for the day and millions of collective dollars. If I were a small business owner in Watertown, I’d be pretty upset that the state summarily ordered me to close with no recompense.

“Get off the streets or you will be arrested!”  That’s what the police said to pedestrians in Watertown, according to numerous online sources.  What’s next?  Are we at risk for being shot or arrested in our own towns, simply to facilitate a criminal manhunt?

In the end, the massive manhunt did not catch the criminal. A homeowner found him, as he lay bleeding in a boat behind his house.  The manhunt – with all the thousands of troops and police, and all the millions spent – did not catch the crook.  From the accounts I read, he was seriously injured and probably would have died, had he not been found.

This raises two questions:  Was this level of response justifiable?  And under what circumstances might it happen again?

Most residents of Watertown lost a day's freedom; some lost more.  Many lost wages or self employment revenue. For what greater gain did we make these sacrifices?  Remember, throughout our history, Americans have faced many horrific crimes and disasters, without need for such draconian measures.  

Second – the erosion of defendant’s rights

There’s talk in the media about how the suspect was not read his Miranda rights, or provided an attorney.  An exception to Miranda was noted, to protect the officers from clear and present danger.

While I understand the need to protect from immediate danger, I also see this as a slippery slope.  Police say they don’t need to read him his rights, and the let that soak into the public consciousness.  Next time, the public isn’t so surprised.   One day, perhaps you’ll get arrested, and you won’t have any rights at all.  That’s where this thinking leads, if we are not careful.

Most of our police are decent men and women.  But as my son and I learned – and as I describe in my book, Raising Cubby – there are bad apples in any otherwise good legal system.  We have checks and balances for a good reason, and we discard them at our great peril.

It sounds easy to justify abrogation of Miranda for this guy.  That makes it easier next time.  After a few dozen incidents we may find that right casually thrown away.  That's how it happens.

Third – Treat him as an enemy combatant!

Several senators have already made this request of the FBI.  What are they thinking?  However terrible this person’s crimes; however horrible he may be . . . he is still an American citizen, on American soil.

If I – a native born American citizen – had committed these crimes, would I be an enemy combatant too?   If so, why?  Does setting a bomb off in a crowd somehow differ from climbing atop a roof and shooting people?  Because rooftop shooters have not traditionally been described as either terrorists or enemy combatants here in America.  They have been called murders, and criminals.

They have been caught by the police, and prosecuted in our courts.  The military has not been involved, and their right to a fair trial in our criminal court system was never questioned.

We need to put aside our revulsion toward the person, and consider where this path leads us.   Are we moving toward a society where criminals lose all rights, if their presumed offense is horrible enough?  What purpose is a legal system, if it deserts certain people?  

Fourth – the invasion of privacy, welcomed

Residents of Watertown were subjected to a regimen of house to house searching by armed troops.  As I said in the beginning, this did not uncover the man they were seeking.  What other activity did it uncover?  And will there be consequences for those people in weeks or months to come?  

American citizens have long had a presumption that their home is their castle.   There is a presumption that what is in your home is private, whether it’s legal or not.  If it’s illegal, law enforcement must follow established rules to go after you. 

The thing that surprised me most about this was hearing some residents complain that their homes were not searched.  They were awaiting the opportunity to give up their privacy; to open their homes to armed inspectors.  Come on, people!

Do those long-standing precepts simply go out the window, the next time there’s a similar emergency?

Fifth – the evolution of gladiator culture

In our local grocery store during the manhunt, apropos of nothing, the cashier asked about the manhunt, and then said, “I hope they kill him!”
Is that what we’ve come to?  Millions of Americans, tuned in to television, in hopes they’ll get to see the cops catch and kill some lowlife criminal? 

I have as much desire as the next guy to see criminals caught.  And if a crook engages a cop in a gunfight, I agree the cop has the right to shoot back.   I think citizens have the right to defend themselves, too.  But I don’t think any of it is a proper subject for entertainment TV.

Roman Gladiator combat came to an end 1,600 years ago.   Is the hunting of modern criminals and presumed terrorists going to take its place as popular entertainment?  Some say gladiator combat presaged the impending end of the Roman Empire.  Does this presage an impending end to the American Empire?

Like I said in the beginning, I’m a supporter of law and order, and I am glad to see the perpetrators of the Boston bombing off the street.  I want to live in a safe society, but I also want to feel secure in my own liberty, freedom of expression, and freedom of thought. 

These recent events make me feel a little uneasy.  We’re on a slippery slope, and no one is speaking up.

John Elder Robison is the author of three books – Look Me in the Eye, Be Different, and Raising Cubby.  He lives in Western Massachusetts.  The opinions expressed here are his own.

Friday, April 19, 2013

The state of science and treatment in the world of autism

In 2006, President Bush signed the Combating Autism Act, and our government officially declared war on autism.  However, like many modern wars this one turned out to have murky goals and elusive combatants.

Where most wars are fought with soldiers and guns, this one is fought with doctors, scientists, and dollars.  The “armies” come from three federal agencies – CDC, NIH, and HRSA.  The “enemy” is said to be inside us, or possibly in our food, or maybe in the vaccine or even the paint.

So far, a billion dollars has been spent.  What do we have to show for it?
Last night I posed the question on my Facebook page, and 200 people responded.  I asked:

Have Autism Services gotten better for you in the past five years?
If you have a family member on the spectrum, and they have had a diagnosis for at least five years I wonder what has happened with services in that time. Are you getting more services, or less? Are they better, or worse? Is your family members quality of life better, or worse? Finally, how old are they?

A majority of parents whose children were under 16 said things are better.  More services, better services.  However, the improvement seems limited to younger people.  Many parents whose kids turned 18 found services came to an abrupt halt.  Most adults report no services before, and few or no services now.

This does not sound like a victory to me.  It sounds like we’ve made some headway with kids, and ignored the rest of the population.
What should we do going forward?  We have a finite amount of money to allocate toward this autism thing . . . the war; a struggle; whatever you want to call it.  How should that money be spent?

To answer that, we must begin with some background.  We’ve spent hundreds of millions chasing genetic, biological, and environmental foundations of autism.  That work will probably prove beneficial to humanity in 10-20 years, but it does nothing for us today.  It’s not a waste – basic science is often the best science over the long haul – but the benefits will mostly accrue to the next generation.

At the same time, we have developed some promising therapies that could help many of us in one way or another, but for a variety of reasons, they are not generally available.  In fact, there is not even a recognized catalog of what we’ve developed.  It’s as if our research has vanished, into the void.

Researchers might object to that statement, saying they published their work in this journal or that.  However, if you ask a practicing clinician to name ten therapies developed in the past five years most would be unable to do so.  Why does this happen?  There are a few reasons:

- There is no central index of therapies to match symptoms with treatments, as there are for most diseases.  There’s no “one therapy for all” in the autism world, and no way for any one person to know the whole range of what’s out there today.
- The therapies that have been developed are not generally available because – for the most part – there are very few centers training clinicians in new treatments. 
- The final barrier is that most emerging therapies are not covered by insurance (for a variety of reasons) and so are essentially unavailable to most families.

That sounds pretty bad . . . . but wait!  There’s more!

There are the many things we do not know. We have no idea if autistic people are more at risk for depression, stroke, or a thousand other problems as we get older.  We have no idea how to raise our chronic rate of unemployment.  For most questions you ask about adults, we don’t know anything at all.  That is the hard truth.  After all the money we have spent, we know next to nothing about autism in adults and over the lifespan, and we have delivered very little of value to that part of our community. 

That, in a nutshell, is where we stand with the science and treatment of autism. 
What should we do, to move forward constructively?

First of all, we need to shift the conversation from autism in children to autism in people.  The fact is, the years 1-18 are but a fourth of our lifespan.  For every kid with a diagnosis, three adults are out there, waiting to be found.  That’s a lot of people in need, folks!

In my opinion, its time for a fundamental shift in our priorities.  We need to learn more about how autism affects us at all ages, and move away from the current child-centric model of study.  We know intuitively that adults have a very different set of challenges than children.  We have looked long at hard about childhood issues in autism.  Adult problems are largely unexplored.  That’s got to change. 

We need to place much more emphasis on research that can be translated to therapy quickly, and we must focus on making that translation happen. To that end, we must develop a comprehensive range of therapies and treatments that will help with ALL our issues, not just one.  Some therapies will help kids, others will help adults.  A few will help people of all ages.  Some therapies will be talk based.  Others will be founded on medication, medication and talk, or new tools like TMS.

This pool of tools must be broad enough and deep enough to cover all our diverse needs.

But that is just the beginning.  Research alone won’t fix our problems.   New therapies – and the almost-new therapies we’ve developed in the past five years - need to be validated to ensure they really work.  Those that do must be “profiled” to learn who they will help, and under what circumstances. We need prescriptive guidelines, so we can use them like antibiotics and other medicines.  Then we must press Federal and state insurers, and private insurance carriers to get these therapies under the umbrella of coverage.   

The best treatment in the world is worthless, if you can’t get it.

Finally there is the question of autism therapy delivered through schools.  A large part of today’s autism therapy is actually delivered in schools as opposed to through the medical system. I’m all for delivering help in school, but there are issues and limitations.  The biggest is that schools only help schoolchildren and services usually halt when kids graduate or drop out.  
Then there is the matter of money - autism therapy costs are overwhelming many school districts.  I don’t have answers for those problems today, but they are big issues that cannot be ignored.

In my opinion, the proposal above should be job #1 in the world of autism science and treatment.  I believe in basic research, and feel it must be continued, but we need to help our people now and the people living with autism today must come first.

What do you think?  Is this where you feel we should be headed, or do you see a different path?  I await your comments . . .

John Elder Robison is an adult with autism.  He’s the author of Look Me in the Eye, Be Different, and Raising Cubby.  He serves on the Science Board of Autism Speaks, and he’s a member of the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services.   The opinions expressed here are his own, and do not reflect those of any other organization or agency.

Tuesday, April 9, 2013

Autism - is it really 1 in 50?

Photo:  The Interagency Autism Coordinating Committee (IACC)  in session at NIH in Bethesda, MD April 9, 2013.  IACC meetings are streamed like and archived at

One of the first presentations at today’s IACC meeting explained the recent NCHS survey that found a 1 in 50 prevalence of autism in American school children.  Stephen Blumberg from CDC and Michael Kogan from HRSA presented their findings and answered questions.

There has been a lot of talk about this study in the media these past few weeks. I was happy to have a chance to ask the project leaders some questions about their work.

One of the most significant points the researchers made was this:  Their research methodology differed quite a bit from the CDC methodology that led to last year’s 1 in 88 report.  That makes it impossible to compare the studies – and their results – directly.  However, we can compare this study to itself, since it was done before, in 2007.  The methodology between 2007 and last year did not change, yet the observed prevalence rose dramatically  (1 in 90 rose to 1 in 50).  Both researchers felt this change from one survey cycle to another was significant.

But does it signal growing awareness, or something else?

The researchers found that roughly a third of the autistic kids identified were diagnosed after the 2007.   Yet those kids were old enough to have been included in the original 2007 survey.   Why weren’t they counted last time?  Presumably, they were unrecognized. 

In response to my question, the scientists agreed that the National Survey of Children’s Health picked up “educational autism” whereas the ADDM survey looked at medical records and only uncovered “medical autism.”  It’s no surprise that identified prevalence would vary when two different definitions are used.

Both studies returned valuable, valid findings. The actual number of people with autism may lie somewhere between the two study figures. 

Some parents see issues with their children, and talk to their pediatrician.  That conversation may lead to formal autism screening and diagnosis.  Armed with that information, parents request services from their schools and their health care provider.

Other times, parents don’t notice, or don’t take action.  School staff notices abnormalities.   Tests are done, and kids are diagnosed with autism in the school.  The result:  those kids are provided with educational supports yet their diagnosis remains informal; outside the medical system.   

How many of those kids would also receive a “medical” diagnosis of autism; one that would be validated by a gold-standard tool like the ADOS?  Unfortunately, we do not know.  I’m not aware of a study that has made that comparison.

There is a second issue with the NSCH study – that it is based on telephone survey.  Workers made thousands of phone calls in their attempt to interview parents, but 75% of the calls were unanswered.  When an adult did pick up the phone, the interview completion rate was approximately 54% for landlines, and 42% on cell phones.   The comparable rate for 2007 was 66%

When so many people opt out of a study on disabilities in kids, it stands to reason that many simply felt their kids had no issues so there’s no reason to take part.  That may well result in a bias toward parents whose kids have issues, and a higher identified prevalence.

So what can you take away from this latest news?

This study, and many others in recent years, highlights the huge and growing number of kids who need special services in school.  As the numbers of special needs diagnoses have skyrocketed, school budgets have stagnated.  How will we – as a society – address this growing gap between identified need and voter-funded support to address it?

The differences in methodology between this study and the earlier CDC work preclude direct comparison.  To me, this latest study confirms what many of us have suspected – there is an explosion of autism awareness, especially among parents – since 2008.  That’s a good thing, when it leads to more successful kids.  Are there circumstances where it’s not so good?

This latest study provides autism advocates with another piece of ammunition to argue for greater funding for services and support.  At the same time, we must recognize that opponents of funding increases will use studies like this, and the recent news of ADHD prevalence (mentioned in the NY Times and other media) as justification for another claim: that there is an epidemic of over-diagnosis that should not be matched with increased funding.  So the study will be used both for and against our community.

The final point I’ll offer is that this recent study is once again limited to a description of autism in kids.   Just as we distinguish mildly affected kids with educational autism diagnoses, we might distinguish geeky undiagnosed adults from their more significantly affected adult peers.  If this study is a guide, that geeky population who might benefit from some support may be much bigger than previously imagined. 

I’ll be interested in your thoughts . . . .

John Elder Robison is an adult with autism.  He’s the author of three books on autism and difference – Raising Cubby (2013), Be Different (2011) and Look Me in the Eye (2007)