Tuesday, July 8, 2014

#Autism - whose table is it? Who gets a seat?




When the autism awareness movement began, it was led by parents advocating for their children.  Parents founded most of the original advocacy organizations, and parents fought for services.  Many times they worked tirelessly on behalf of children  who were ill equipped to speak for themselves. 

Many things have changed in the past decade.  We now recognize a much broader spectrum.  Many of the kids who were the original focus of parental advocacy are now autistic adults.  Technology and emergent therapies are helping them and others at all points on the spectrum communicate effectively and broadly. 

Between growing up, being recognized in adulthood, and developing more ability to communicate effectively, members of our autism community have become far more able to speak for ourselves.  Given that reality, I believe it’s time for a shift of balance in some of the organizations and groups involved with autism.

Autistic advocates are already shifting the discussion from awareness to acceptance and support, but more is needed.  

Specifically, it’s time to recognize the primacy of autistic people in the formulation of policy relating to research, education, treatment, and services for our community and our people.   We are able to express our own wishes and opinions, and we are doing so more firmly every day.  We no longer need parents or professional to speak on our behalf as a community.  Some individuals will still want such assistance and that's fine for those individuals but – just as in other communities of adults – the majority of us can and should communicate for ourselves.

Speaking for ourselves is an essential step to independent adulthood.  It's not a dismissal of parents; it's the same thing every child does as part of growing up.  Some autistics do this at the "typical" time; others are a few years later.  Some don't become independent speakers until well into adulthood and a few never speak for themselves.

Wherever a particular person falls on the independent speaking spectrum, the previous paragraph does not imply parents and professionals don’t have valuable input to offer – they do.  Rather, it’s a recognition that a happy and free adult people must determine their own destinies whenever possible. with advice - not oversight - from others.

Parents, family members, guardians, and professionals have a place at the table, but let’s recognize that it’s the autistic people’s table, and parents, friends and helpers are the guests, counselors, and advisors, not the leaders.

Anyone who reads the news knows how the recognized prevalence of autism has risen steadily this past decade.  At this point, our numbers make us a significant subgroup of the population.  In America – for example - we outnumber both Jewish and Native Americans by a substantial amount.  It’s reasonable for us to expect the same recognition, rights, and acceptance as other population groups.

It’s also time to recognize that we are also more than a group of “people with a disease.”  The evidence shows we have always been here, and we always will.  That does not discount the idea that some autism stems from environmental toxins or other preventable causes.  Rather, it reflects the emergent realization that there are multiple autism(s) and one form seems to be a stable part of humanity; unrelated to disease or injury.  As much as we may seek to prevent neurological injuries and correct those that occur, we must also respect those of us who are simply “born different.”  And of course there is the issue of perspective – to me, it may be you that’s different!  We may each see that in each other and we both deserve respect and acceptance.

That means facing the fact we have our challenges, but we have our gifts too. The balance varies from person to person, and for each of us, it may change over our lifespan. Like any community all our facets should be recognized and respected.  We say autism is a way of being . . . who should young autistic people learn this from if not autistic adults?  That’s why it’s so important for us to build community and dialogue.

Most of us are aware of the breadth of our community with respect to how autism affects us, and what mix we may have of gift and disability traits.  There are differences in our expectations too, with some of us wanting to be left alone, some wanting acceptance, some wanting assistance and some calling for a cure.

The opposite ends of that spectrum are to some extent mutually exclusive on a population level but we can hopefully accept that range of difference individually.  It all comes down to this:  Whatever we believe, it’s our community, not our parents or our teachers or anyone else’s.  It’s up to the autistic adults to take charge and shape our destiny going forward.

I believe it’s our right, responsibility and indeed obligation to speak up for ourselves.  If we believe our community contains members who cannot speak for themselves we have a duty to do our best to speak fairly for them too. 

We have a broad range of wants and needs.  Who better to articulate those needs than those of us who are affected?  We express outrage when outsiders broadly characterize autistic people as “suffering from autism,” but the fact is, every human suffers from something sometime.  When we suffer, we should speak up.  But we should also speak up for our joys, our hopes, and our dreams, because speaking up is the first step in making those things real, just as it’s a first step in making suffering go away.

By saying this I am not presuming to speak for any specific individual, nor am I suggesting autistic adults should bull their way in to try and speak for individuals who are unable to speak for themselves.  Any community will contain members whose guardians speak on their behalf, but they are in the minority.  In the autism community, that shift will represent a reversal.

Autism – by definition - presents us with communication challenges but most of us can and do communicate by the time we reach adulthood.  It’s time for us to use that great human gift, for all our sakes.

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 the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s Neurodiversity Scholar in Residence at the College of William & Mary.  The opinions expressed here are his own.


Thursday, May 22, 2014

Serial Killers, Autism, The Washington Post and Divorce in Maine . . .



Autistic adults are crying foul at a recent Washington Post article that speculates on a connection between serial killings, mass murder, autism, and head injuries. The premise of the article is that those things may be connected in more than a coincidental way, based on a study of mass killers in various databases.  Neurodiversity advocates are rightfully concerned that the story will turn the public against autistic people for no good reason.

I say, Shame on the Washington Post for running such an inflammatory headline to promote such a poorly thought through article.

The ill-considered piece is based on a newly published study – Neurodevelopmental and psychosocial risk factors in serial killers and mass murderers, by Allely, Minnis, Thompson, et al.  Three of the authors are psychologists at the University of Glasgow, one is at the University of Gothenberg, and one is at the Center for Health Science in Inverness, Scotland. 

While the original paper has some interesting findings, the conclusions they reach, and the way they are presented – in my opinion – verge on irresponsible.  There is an overwhelming body of evidence that autistic people end up victimized far more often that we victimize others.  There’s no prior association between being autistic and premeditated aggressive violence. Articles like the one in the Post lead to further exclusion and victimization from a fearful uninformed public.

We saw that in the aftermath of the Newtown killings with the talk about whether Adam Lanza was on the autism spectrum, and by implication, whether autism was a factor in his crimes.  Young people with autism were bullied and isolated by irrational readers who were stirred up by the media frenzy.

The whole idea of this latest study is flawed.  The issue is simple:  correlation does not imply causation.  Researchers forget this to their detriment as they are led to wildly wrong conclusions when two data sets seem to fit together.  I’ll give you an example.  Right now, if we compare data from the US Census and the USDA for the years 2000-2009 we find a near perfect correlation (.993) between the divorce rate in Maine and the per capita consumption of margarine. 

Who knew margarine consumption predicted divorce with such accuracy?  It (probably) doesn’t.  But an ignorant person, looking at the near-perfect fit, could easily be led to that conclusion if he lacked the common sense to see through it.

The problem with the Post article is that common sense isn’t common, the author does not explain this, and the correlations in the article are not as obviously spurious as margarine consumption and divorce.

Here’s what they claim: Of 239 killers, the authors concede that 133 showed no evidence of autism or brain injury.  But then comes the shocker:  67 (or 28%) are described as having possible, probable, or definite autism.  That makes autistic people sound pretty scary, doesn’t it?

It does not make autistic people scary to me, because I’m informed, and I know the statistic is ridiculous.  But people fear what they don’t know, and there is a lot of ignorance about autism.   The group of serial killers and mass murderers had other common traits, too, but the authors did not see fit to mention them in the same light.  For example:
  • ·      Almost all serial killers and mass murderers are male.  Should we be scared of males just because most murderers are male?  That’s actually a pretty well-known fact but males remain pretty acceptable in most societies;
  • ·      A majority of serial killers and mass murderers are Caucasian.  Caucasians are welcome most places too – at least in the United States and Canada;
  • ·      Of those who are not Caucasian a majority are the predominant race of the land where they killed.  “They eat their own,” is a common proverb, and like most proverbs, there’s an element of truth in it;
  • ·      In America, a majority of serial killers and mass murderers came from middle class or affluent backgrounds.  Few came from poor backgrounds.  That’s a surprise to many but it’s true;
  • ·      In America, the vast majority of serial killers and mass murderers employ both automobiles and firearms in the commission of their crimes.  Yet there is very little regulation over the ownership or use of either in most of the United States;
  • ·      A majority of serial killers targeted victims who were physically weaker than themselves – principally women and children.  With all the talk of bullying today that comes as no surprise, but it’s not clear how you’d use that insight to avoid a serial killer;
  • ·      Many serial killers target victims who belong to groups scorned or marginalized by the society in which the killer lives.  That too is not surprising to anyone reading the news.  It’s dangerous to work as a hooker or a drug dealer.  If that’s the career path you choose the risk of death at the hands of serial killers is just one of many hazards.

None of the associations above are worrisome, because they are easily understood and evaluated by a layperson.  Yet every one of them is a stronger match than what the study’s authors claim for autism.

That takes me to the next issue with this study . . . their notion of “possible, probable, or definite autism.”  Let’s look first at the killers who really have autism diagnoses in the studied group.  The authors only identified six diagnosed autistic people.  With a total population of 239 killers – mostly male – the latest autism prevalence statistics suggest autism is about as common in this group as it is in the general population.

Taking that a step further, we could say that the diagnosed prevalence does not suggest autism per se is a factor in whether someone becomes a serial killer or not. There are autistic serial killers, blue-eyed serial killers, and brown-haired serial killers, in similar numbers as will be found in any other human population. Such observations – while true – don’t really tell us anything meaningful about why someone becomes a serial killer. They are just unrelated data points, like the correlation between margarine consumption and divorce.

If we had a theory for why autism, brown hair, or blue eyes might make someone into a serial killer, things would be different.  But there is no such theory, and in the absence of one, it is highly inappropriate to make such a suggestion when it applies to an already-vulnerable population.

Next, let’s look at those “possible or probable” autistic killers.  The authors of the paper described in the Post called a killer “possible or probable autistic” on the basis of Internet speculation, speculation from observers in jail, or speculation based on descriptions of the individuals. 

Armchair diagnosis like that may make for fun conversation, but it has no medical or psychological validity.  It’s speculation, pure and simple.  It wouldn’t be allowed in court and it should not have been allowed here.  The essential problem with speculation in the Aggression and Violent Behavior article is that most of the observed traits the authors associated with autism can also be associated with psychopathy and sociopathy, and I suggest those are more likely explanations given the demonstrated behavior of the individuals.

This study would have had a lot more validity if they had taken their sample of 239 killers and asked, "What psychological, neurological, or psychosocial issues can we definitely attribute to each killer?"  That would have produced a much more nuanced and complex result, but it would have been a result with real meaning.  The present study - looking only at autism and head injury - and its possible-probable-definite language, is hogwash.

So, in conclusion, I will just repeat - There are no studies showing a propensity for aggressive violence on the part of autistic people.  This most recent paper – which has gathered a lot of headlines but little professional praise – does not make that case either. 


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 the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards.  He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s Neurodiversity Scholar in Residence at the College of William & Mary.  The opinions expressed here are his own.

Friday, May 16, 2014

Rethinking Education - Can Autistic People Lead the Way for Everyone?

I've been posting regular updates from the 2014 IMFAR autism science conference.  At 7:15 this morning I'll be discussing transition to adulthood, and how we might reshape our education system to improve our rate of success.



As the co-founder of a unique vocational program for teens with differences, and as Neurodiversity Scholar in Residence at William and Mary these are questions I think about a lot.  One of the realizations I've come to is that we inherited a concept of learning where the young learn their trades at the side of those who are older and wiser in a system that we eventually came to call Vocational Education.  This system served humanity for as long as we've been around, and it was the way we taught every single trade from doctoring to sheepherding; from preaching to policing.  Then we threw it away and embraced the (false) idea that anyone could be anything, by learning from books and going to college.

But it's not college that's the problem.  It's the way we teach it.

Here's a TEDx talk that lays out my views in 18 minutes.  Take a look, and let me know what you think.  If you prefer to read the talk in stead, I've posted a transcript here.

Let's get a discussion going . . .

https://www.youtube.com/watch?v=RFkQifd-D1U


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 the forthcoming 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 school and Neurodiversity Scholar in Residence at the College of William & Mary.  The opinions expressed here are his own.

Thursday, May 15, 2014

What happens to autistic people when we get old?

What happens to autistic people when we get old?



This morning I had the privilege of listening to several perspectives on aging at IMFAR 2014.  Three presentations covered distinctly different groups of autistic adults.  The findings were very different, and I found myself leaving the presentations with more questions than when I arrived.  Some say that’s a hallmark of good research, while others ask for their money back.  I just nodded, because they let me in free. 

Here's a bit of what I heard . . .

Dr. Joe Piven from the University of North Carolina looked at the quality of life for twenty autistic individuals over 50.  The guys in his study had traditional DSM III autism, meaning their issues are rather more debilitating many who are diagnosed today.  Most had verbal, functional, and intellectual challenges.  11 had no school; 9 had a high school education. Some lived independently; others were in some supported living environment.  They had a mean age of 56.

The first point he made is that we have no tools to survey this population.  The individuals themselves had limited ability to respond to surveys.  Most were in environments where their caregivers had not known them more than a few years.   Gathering detailed information was very difficult, and the study size was limited because finding the people was an even greater challenge.

The intellectually disabled have always been an invisible part of our society, and when you add autism and aging the situation only gets worse.  I should give all of us pause for thought.

17 of the 20 individuals studied appeared to be aged well beyond their years.  55-year olds looked 75.  Was that a result of autism, intellectual disability, or living situation?  The scientists don’t know, but several researchers who have worked with older adults with intellectual challenges say premature aging is common.

It was not possible to get good medical histories for all participants, but observations were made about their present state of health for everyone.  One of the things that struck the researchers was how common Parkinson-like tremors were.

Parkinson’s affects 1 in 1000 of the general population at age 60.  More than 30% of this group showed mild symptoms that might be attributable to Parkinson’s, and several were actually referred for medical examination.

Why would that be?  They don’t know.  It didn’t seem to be an artifact of serious intellectual disability, because the Parkinson’s-like rigidity and gait issues mostly showed up in the folks whose IQs were over 50.

Those troubling findings certainly merit further study.  I hope we hear more at our next meeting.

Hilde Geurts came from Amsterdam to describe a self-report exploration of quality of life in autistic adults on her side of the Atlantic.

Her sample included 486 autistic people, 19-79 years of age, whose average IQ was 114 – a very different group of autistic adults from those in the first study.  She asked respondents to rate various quality of life factors in their own words, and in some cases she asked friends or partners to rate the same things.

One of the first things she explored was the idea of “growing out of autism.”  That didn’t happen.  Her respondents said that autism symptoms decreased but did not disappear, as the respondents got older.  Almost all respondents said the challenges they faced as kids remained even when diminished.

When asked about satisfaction with relationships, living situation, work, and other things, autistics reported a consistently lower quality of life than the non-autistic controls.  Interestingly, when friends or partners observed and rate quality of life, those reports were consistently lower than the quality of life the autistic people themselves described.

I guess you could say we’re happier that observers judge us to be.  Maybe ignorance is bliss after all.

I’ve always thought my life got better as I got older, but she didn’t find an increase in reported happiness with age.  I was surprised at that.

Here’s an interesting finding:  autistic people reported more “cognitive fails” – like forgetting why you walked into the kitchen – that neurotypicals, but that didn’t get worse with age.  It's sure gotten worse for me!

Finally, we heard more from Dr. Lisa Croen of Kaiser Permanente in California.  She told us more about her adult study, which looked at 2,100 autistic adults age 18-60 who were enrolled in the Kaiser network between 2008-2012.  I wrote about her study in an earlier blog, but in this presentation she added some key data:
  • Almost 40% of the autistic population was treated for anxiety versus 17% in the general population.
  • The numbers for depression were a close second – just a couple percentage points less.
  • Almost 10% of the autistic population was also treated for schizophrenia or bipolar versus less than 2% for control population.
  • Suicide attempts were the most troubling – near 2%.  Can you believe almost one in 50 autistic adults attempted suicide at least once in that five year period?  That is shocking.
Epilepsy was much more common among autistic adults – affecting near 10% of the group.   Hearing impairment was twice as common.  Vision problems were three times more common.  Cardiovascular and metabolic issues were more common, but the differences were less dramatic.

Autoimmune disorders are a big deal with children on the spectrum.  Interestingly, they were not a big issue for adult males on the spectrum, but they remained a problem for women.

Surprisingly, the risk of cancer was about the same for autistic and neurotypicals – 3%

For every finding that I report, you can ask I, why?  In every case the answer is the same – we don’t know.  We can speculate that autistic people are less aware, or take less care of ourselves.  Maybe that’s some of it.  It's no surprise that a condition that leads to social isolation would also lead to anxiety and depression. We can offer up any number of other reasons.  But the fact is, it’s all speculation for now.


More study is needed.  If these studies show one thing clearly it is that adult autism needs to be studied in much greater depth, right now.  All of us are getting older, and we deserve some answers.


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 the forthcoming Switched On.  He's co-founder of the TCS Auto Program school and Neurodiversity Scholar in Residence at the College of William & Mary.

Watch my TEDx talk on Organic Education for more thoughts . . . 

Wednesday, May 14, 2014

Early Intervention Or Not. How Do We Decide?



Jason Wolff from the University of North Carolina at Chapel Hill reported on a study of at-risk infants at the IMFAR 2014 press conference today, and it got me thinking.  At-risk studies follow tykes whose family history suggests they have an elevated risk of being diagnosed on the spectrum.  Researchers hope to learn what sets the at-risk kids who develop autism apart from those who don’t. 

What are we learning, and how are we acting on that?  Are we making the right choices?

He says repetitive behaviors may be one area of difference.  Dr. Wolff found distinctly different repetitive behaviors in the children who were ultimately diagnosed with autism.  These differences showed themselves as early as 12 months.

The excessive repetitive behavior set them apart from other same-age tykes who did not go on to receive autism diagnoses.  The behaviors varied from tyke to tyke, but across the board there was more hand or wing flapping, more spinning, more insistence on sameness, and even more head banging and other self-injurious acts.

Dr. Wolff's work is a major achievement and I applaud both his efforts and his success.  The question is, what next?  In his talk, he said, “the earlier we can pick this up, the earlier we can start intervention.” 

That’s when I perked up my ears.  Picking up distinctive behaviors at 12 months is a great achievement, but is quick suppression the correct answer in every case?  As an autistic adult, I had to wonder.  Ten hours later, I’m still wondering.

If I had a baby banging his head on the floor, I would be looking for intervention tomorrow.  I would be terrified that he’d do himself permanent damage.  But what if he flapped his wings and flew?  I did that, and it never harmed me.  How might I be today, if that behavior were “corrected” through early invention 50-some years ago?

Where do you draw the line between stopping something unhealthy and tolerating or even encouraging natural difference?

Might an early intervention have squashed my creativity before it even sprang into view?  No one can know.  And that is the problem with some of today’s intervention, well meaning as it is, and as vitally important as it is for some kids.  We cannot know how many less-impaired kids are being harmed or stunted though our well-intentioned “corrective” efforts.

We say “every autistic person is unique,” but then we talk about our population as if we are all the same.  “Once we detect the behavior, we apply early intervention.”  There’s not much acceptance and encouragement in that phrase.  Yet those are the emerging bywords for the autism community.  Autism Awareness is becoming Autism Acceptance all over the world.  We're recognizing autism as a disability for many and a gift for some; we're also seeing it as an essential variant of the human genome.  It comes with problems, but it also carries gifts.  We've realized the "disease model" doctors embraced 10 years ago does not really apply.

Today we know that some autistic behavior should not be suppressed.  When we exhibit a behavior, it is for a reason.  People – like other animals – do not do things for no reason at all.  We do what we do because it makes us feel good, stops a hurt, satisfies our hunger, or meets some other need.  It may not be obvious to an outside observer what need is being met, but rest assured, there is one.

Rather than ask “how early can we correct the behavior,” I think we would be better advised to ask, “why does an infant bang his head on the floor?”  I was a head banger, long ago.  Try as I might, I cannot recall for you now what I hoped to achieve by denting the wall in our apartment.  But I know it was a very deliberate action on my part.  Bang.  Reflect.  Bang. At some level, I liked it.  I did it a long time.

If you want to truly stop that kind of behavior, you need to figure out what need it fulfills, and fill that need another way.  Saying, “don’t do that” isn’t an answer.  Interventions for head banging rarely work because people seldom get to the root of the issue – why do we do it?  It’s hard to answer that kind of question because it requires getting into the heads of autistic kids and neurotypical psychologists are ill-equipped for that task by their design.

Then there are the repetitive behaviors that are not obviously harmful.  It’s my belief that autistic behaviors that don’t harm us, and don’t harm others, are best left alone.  Why not let them go?  I agree we should teach kids not to do injurious things.  And we should teach kids not to do things that will get them teased or bullied.  But the rest . . . ?

We are beginning to recognize and embrace neurodiversity, especially among adults.  We see how “different” people bring fire to the world, and we need that fire to bring ideas to a boil and pop them out into the world.  Our goal should not be to stamp it out in infancy.  Rather, the goal should be to tend and nurture the fire-bringer, and keep her from getting burned in the process.

At the same time, we might recognize that some people in the fire-bringer’s family won’t have the gifts of fire, but they will have disability.  How can we relieve such burdens as they may have, while encouraging the unique and special among us?

I want to be absolutely clear on one thing - I am not coming out as an opponent of early intervention. I have seen and heard too many stories of positive transformation of major disability to do that.  I'm just suggesting that early intervention - powerful as it can be for some - is not the answer for every child who shows non-injurious autistic mannerisms.

We have no idea how to predict which infant will develop into a star, and which will be crippled as an adult.  And this isn’t just an autism problem.  We can’t tell that for typical kids either.  We can identify certain serious genetic problems – SHANK 3 mutations for example – that are associated with profound intellectual and physical disability.  But beyond that – when we diagnose by watching things like hand flapping – we have no idea of the future development of those kids.  We’ve no clue how they will turn out.

Deciding when and where to intervene, and how, is getting much harder as the detection tools evolve faster than we can understand their meaning.  Intervention is also complicated when the ethical landscape is shifting.

We can’t lose sight of the fact that some infants growing up with autism will suffer greatly unless we intervene successfully.  But others will be the different quirky people who make the world run.  We can’t wipe out one as we ease the pain of the other.  But we have no idea how to tell them apart, especially at 12 months of age.

I don’t pretend to have the answer to that question.  As I wrote above, there are some genetic markers for very serious disability, but when we move beyond those . . . it’s not much different from predicting the future in any other area.  We can’t do it.

It concerns me that this is not really being discussed as we expand our efforts to detect autism and difference earlier and earlier.  Some of today’s autistic infants are surely the Beethovens and Einsteins of tomorrow.  Where will we be, if we “correct” their trajectories before they even read or write?  We’ll never know what we lost.


How might we start this discussion?


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 the forthcoming Switched On.  He's co-founder of the TCS Auto Program school and Neurodiversity Scholar in Residence at the College of William & Mary.