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Posts Tagged ‘Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians’

A Surplus of Males

September 28, 2011 29 comments

This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventures of a Free-Range Aspergian.

I spent this Tuesday in Washington, reviewing autism research proposals.  I really enjoy that work, because it puts me among some of the best minds in autism science.   In the course of our discussions, an intriguing question arose.

We know autism is far more common in males, but the reason why remains elusive.  It’s one of those facts of autism that most people take for granted, and simply accept for what it is.  In earlier essays on this blog I have considered possible explanations, from Simon Baron Cohen’s theory that autism is “exaggerated maleness” to reasons why females might be undiagnosed and undetected.

All the explanations I have heard so far do not account for this interesting observation:

If the male/female ratio within a society is 50/50, any random group of families sould have a 50/50 distribution of sons and daughters. Some families would have one child, others would have three.  Some would have all sons and others two daughters and a son.  Taken together, we would expect the total of sons and daughters to be equal.

If we assemble a collection of families in which there is at least one autistic child, that distribution of sons and daughters is not 50/50.  It favors the males.  Any autism researcher who has worked with families knows that to be true, even in the absence of hard studies to quantify it.  Why?

All of us know families that have all sons or all daughters.  We don’t make anything more of that that we do tossing a coin and having it come up heads three times in a row.  Just chance, we say.  But when you identify a group of families with a trait like autism, and they all have more sons than daughters . . . suddenly it stops looking random and starts to seem the result of something else.

If this were a roll of the dice, you’d start to think the dice were loaded.

One explanation is that some parents have a son with autism and stop having children.  So the girls that might even the male/female ratio are never born.  I think that explanation may be true today, but what about the ages before modern birth control?

Critics might say that we don’t know how autism was distributed among the sexes a hundred years ago, and that’s true.  The autism diagnosis has only existed for sixty-some years.  Yet we do have strong anecdotal evidence.  Using that, some modern day people have “diagnosed” historical figures with autism based on what we know of them and their lives.  How many of those individuals are female? Almost none.

Those “post-mortem diagnoses” are certainly subject to challenge and I’m sure some are even wrong.  That said, they can’t all be wrong and the male-female ratio in the known historical record of autism remains strikingly tilted toward the male side.

Geri Dawson suggested another possible explanation for the male-female imbalance.  What if girl embryos are actually more susceptible to some factor implicated in autism, but in a different way?  The factor that produces autistic baby boys might result in unsuccessful pregnancies when the fetus is female.  The result – fewer baby girls with autism are born.

To the best of my knowledge, no one has studied pregnancies in families with autism.  All that has been studied are the resultant children.  We don’t know how many miscarriages may have preceded or followed the birth of an autistic boy.  The incidence of miscarriage in general has been studied and it would be interesting to know if families with autism deviate from the norms in that regard.

The son-daughter imbalance certainly ties in with the Baron-Cohen “maleness” theory.  If autism indeed an expression of excessively male genetic material, that imbalance might result in more males being born in those families.

I spoke to several scientists and it became clear that this is one of those obvious questions that has never really been answered.  There is the general belief that autism families contain more males, but we have no hard data to illustrate the difference.  We also don’t have any multi generational data, which could shed light on the heritability of the condition.

In my own family, I have one child, a son with Asperger’s.  My father had many Aspergian traits, but he died before anyone thought to explore that possibility.  He had a brother, and no sisters.   His father also had a brother and no sisters.  His grandfather had three brothers and a sister.  Is there a pattern there that relates to autism?  I really don’t know.

It would be very interesting to see a study that addressed this question.  Perhaps a grad student somewhere will read this, and bring a research proposal to our next review meeting . . . .

Stranger things have happened.

Autism in the Family – More Common Than We Thought

August 16, 2011 43 comments

This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventures of a Free-Range Aspergian.

This morning I read a striking a new study which addressed the question of autism in siblings – how common is it?  The findings will be of vital interest to many; most especially young families with an autistic infant.
Earlier studies and “conventional wisdom” suggested the incidence of autism in siblings was in the 3-10% range.  This new study shows those numbers to be very far from the mark.
Scientists in this new study found autism in 19 percent of the younger siblings.  High as that seems the incidence is even higher in families with two or more autistic kids.  In that case, a new sibling’s chances of being autistic rose to more than 32 percent.
Being a boy makes a difference too.  “Only” 9% of girl siblings were autistic, as compared to 26% of boys.  I found this difference quite interesting because I often wonder if autism is under-diagnosed in females.  In this study, all the kids were screened with the gold-standard ADOS or ADIR tests prior to age three.  So even with top-notch screening, we still have more autistic boys.
Those are some strikingly high percentages.  As high as they are, and knowing autism is a spectrum condition, I have to wonder how many non-diagnosed siblings will eventually turn out to have less severe but still noticeable “differences.”
There were a few more points I found interesting.  First of all, the IQ of the child did not predict anything.  Neither did severity of autism, as defined by the ADOS diagnostic scales.  So your odds of having a second autistic kid are higher, but those odds and knowledge of the first kid don’t combine to give any insight into how a second kid might end up.
The conclusion is inescapable:  autism does run in families.  According to these findings, the more autistic kids you have, the more you are likely to keep having.
We talk about autism having both genetic and environmental components.  This study, with 664 infants distributed all over the country, shows a very powerful genetic component.  That certainly does not diminish the role of environment, but it’s sobering.
I predict the results of this study will have a profound impact on family planning, because it casts parents’ chances of having a second or third child with autism in a strikingly different light that any previous study.
We already know (from other studies) that many parents stop having children when their first child receives an ASD diagnosis.  This new finding may significantly reinforce that tendency.
Read the study yourself at this link.
The study involved 664 infants from 12 U.S. and Canadian sites, evaluated as early as 6 months of age and followed until age 36 months.  Kids with previously identified autism-related genetic factors such as Fragile X were excluded from the study group.
“It’s important to recognize that these are estimates that are averaged across all of the families. So, for some families, the risk will be greater than 18.7 percent, and for other families it would be less than 18.7 percent,” said Sally Ozonoff, Ph.D., professor of psychiatry and behavioral sciences at the MIND Institute and the study’s lead author. “At the present time, unfortunately, we do not know how to estimate an individual family’s actual risk.”
This study was based on data from the Autism Speaks High Risk Baby Siblings Research Consortium (BSRC) and led by investigators from the UC Davis MIND Institute.
Your correspondent (John Elder Robison) is a member of the Science Board of Autism Speaks, one of the organizations who funded the work.

Autism Talk TV Ep. 14 – Be Different by John Elder Robison

July 19, 2011 7 comments

This post is by Alex Plank

In the latest installment of Autism Talk TV, Alex, Jack, and Kirsten talk about John Robison’s new book, Be Different: Adventures of a Free Range Aspergian. Be Different is must-read and I highly recomend ordering it on Amazon. John’s first book, an autobiography entitled Look Me in the Eye: My life with Asperger’s was an overnight success, landing itself on the New York Times bestseller list.

Unlike Look Me in the EyeBe Different is a how-to guide aimed at teachers, parents, professionals, and individuals on the spectrum. However, you won’t be disapointed if you are hoping to read more of John’s firsthand accounts that made up the entirety of Look Me in the Eye as John uses his famous stories to illustrate points in Be Different.

Teacher’s Guide for Look Me In the Eye

Look Me In the Eye Study Guide

John Robison Discusses IMFAR Technology Demonstration with Alex Plank at IMFAR

Autism Speaks Science Board member John Elder Robison is the author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian. You find out more about his IMFAR experience, here, here, and here.

Alex Plank, an autistic adult who founded the online community Wrong Planet. Alex is a graduate of George Mason University. You can see more of Alex on his Wrong Planet YouTube channel.

To find out more about ‘Innovative Technology for Autism’ visit here.

You say Tomato, I say TomAHto

May 13, 2011 8 comments

This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian.

Yesterday I listened to a very interesting talk from Catherine Lord, Ph.D., one of the creators of the ADOS test. ADOS is the “gold standard” in the world of autism diagnosis, and she’s a leading figure in the world of autism testing and evaluation, so I jumped at the chance to hear her thoughts on where we’re headed in that regard.

People who receive an autism diagnosis are told they have one of three conditions: Autism, Asperger’s, or PDD-NOS. The big question is: who should be diagnosed with what?  Is there a coherent sense of classification, or is it merely arbitrary or random? She reviewed the diagnostic data for several thousand spectrumites in an effort to determine what caused a person to end up in one of those three categories.

To her surprise, after analyzing the data, she found the principal predictive factor had nothing to do with the individual. Looking at records from a number of good university hospitals, she found places who called almost everyone Asperger, and other places where everyone was PDD-NOS. There was no discernible pattern of variation between individuals; they seemed to simply get different diagnoses in different places.

Was there more to the story?

To answer that, she looked at other factors, like IQ. For example, many people call Asperger’s “autism lite” or “high IQ autism.” Her review of Asperger diagnoses at one Ivy League school bore that out, with their Asperger kids having average IQ of 123. However, other doctors must see Asperger’s differently, because a Midwest clinic in the study has an average Asperger IQ of 85.

She looked at quality of language in older kids and found similar ambiguity. In the final analysis she did not find any consistent measures of the individuals themselves that led to one label or the other being applied.

In my opinion, those findings support the argument that there is no consistent standard that sets the three descriptive terms for autisms apart. A difference at one point becomes invisible at another. For example, you could say four-year-old Mike does not talk so he’s autistic and Jimmy talks up a storm so he’s Aspergers. But what happens when both kids are 10 and they look and sound the same? Were the differences justified? What purpose might they serve by their difference?

Her findings made one more strong argument for combining all autism diagnoses under the heading of autism spectrum disorder, with a described range of disability or affect.

That’s the way things seem to be headed for the next DSM.

At the same time, Dr. Lord expressed concern that many people have a strong personal investment in one diagnostic name or the other, and they should be able to keep using the different terms.

Stay tuned for more tomorrow from IMFAR 2011.

Teacher’s Guide to John Robison’s ‘Be Different’

With advice and suggestions from the author, John Elder Robison, this Be Different guide was developed and written by students and faculty of The Monarch School, which is part of the Monarch Institute for Neurological Differences, dedicated to empowering vulnerable individuals with neurological differences to move from dependence to interdependence and make more meaningful contributions in life. In constructing the guide, the class met regularly, read each chapter, and then developed and piloted discussion questions and exercises to explore the themes of the book.

A Conversation with Peter Bell, Executive Vice President of Autism Speaks, and John Robison, Author of Be Different

April 11, 2011 2 comments

This is a conversation with Peter Bell, Executive Vice President of Autism Speaks, and John Robison, Author of Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers
(Crown Archetype, March 22, 2011)
_______________________________________________________________________________

Peter Bell: Be Different has a lot of wonderful advice and insights for young people who struggle to fit in. But for those with more severe forms of autism, “being different” may not be their greatest challenge. Does your advice change at all for kids and families who are living with challenges of classic autism?

John Robison: Be Different is written for people with Asperger’s and what I call “other geeks and misfits.” The principal difference between those folks and others with traditional autism is that they do not have the severe language challenges.  The “verbal but socially impaired” population this book speaks to represents the largest group of young people in special needs education today.

There are millions of young people who we might say, “look and sound normal,” yet they struggle to fit in. Until now, no book has spoken to that huge audience. I hope to change that with Be Different. Individuals with severe language impairment may well share the challenges described in this book, but the language and communication issues will be of overriding concern.

PB: If you had been diagnosed with Asperger’s syndrome earlier in life, how do you think your childhood and adolescence would have been different? Do you think your parents or teachers would have treated you differently?

JR: I hope so! Certainly one of the basic tenants of special education is that we recognize the differences in our kids and develop individualized education plans to bring them along. In my day, my differences were dismissed as defiance or laziness. That led to failure in school and low self-esteem that haunts me to this day.

If my teachers had known about Asperger’s, I might have been assigned a guide to keep me focused and moving through school. I might have been given study materials that were actually appropriate for my skill level. With changes like that, I’m sure I could have graduated high school and gone on to complete college. Who knows where life would have led me then?

PB: You’ve met my teenage son, Tyler, a few times, and you two seem to have a strong connection. He was immediately drawn to you, and you showed a wonderful desire to connect with him. In fact, you were decidedly social with him. Do you find yourself drawn to other autistics in a different way than “nypicals?”

JR: Yes, I do. I don’t know how to explain that except to say some of us autistic people recognize our own kind at a very elemental level. When you think of sorting out people by similarity you probably imagine grouping people by height, or race, or even hair or eye color. What people like Tyler and I see in each other is immeasurably more subtle than those superficial traits, and we seem to match each other up instinctively.

I connect with many autistic people, and they with me. It happens enough that there’s no denying the reality of the phenomena, but I can’t explain exactly what we sense in each other or why we find it comforting.

PB: My wife, Liz, has commented that your gaits (how you walk) are pretty similar, but your “autisms” are very different. Why do you think that is the case?

JR: Scientists believe there are many biological and environmental paths into autism. In the next few years we may end up identifying over a thousand genetic variations that are implicated in autistic disability. All those variations lead to a similar set of differences within the brain and the communication and behavioral challenges we observe.

Those brain differences may have innumerable external manifestations. Our distinctive walk may be one of them. Some scientific studies have shown autistic people have uniquely different patterns of speech and characteristic “nonstandard” facial expressions or eye movements. More and more of those characteristics are discovered every day, and the “gait of autism” may one day be a diagnostic feature.

That deep-rooted commonality is one reason I think this book’s appeal is so universal to people with neurological differences. The only caveat to that is that profound speech challenges will always take precedence over the social behavior that is Be Different’s focus.

PB: You mentioned at one point in your book that “language came to me naturally, . . .  wisdom was really tough to obtain.” Interestingly, I think the opposite is true of my son with autism—at times he seems to have wisdom beyond his years but his language is severely impaired. What do you make of this difference?

JR: That is the great puzzle of autism. It’s a mystery why many people with Asperger’s share my gift of exceptional clarity of speech combined with profound social disability, and others with traditional autism may have no speech at all. It almost seems opposite, and I can’t explain it except to say autism touches each of us differently.

Tyler’s inability to hold a normal conversation means he has a lot of time to reflect inwardly, to think about the world around him. I have written about how my own social isolation helped me develop the reasoning power that got me where I am today. Given that situation it’s no surprise he seems wise; he has a lot of time to watch and ponder, freed from the constraints of speaking whatever comes to mind from moment to moment. He’s a thoughtful person; it’s just that his language challenges prevent us from hearing and sharing those thoughts much of the time. My situation is opposite. My childhood command of language was so good that people expected matching wisdom, far beyond my years, and it just wasn’t there.

PB: You mention that “Autism in its many forms is not a disease.” However, we know from historical experience that autism can be caused by infections (for example, maternal rubella or influenza during pregnancy) or other environmental factors (for example, thalidomide or valproic acid use). Research also shows that about one-third of the current population of children with autism have a regressive form. Although the terms “disease” and “disorder” are fairly synonymous and generally mean deviations from accepted or “normal” physiological or psychological functioning, is it possible that some forms of autism could be “abnormal” rather than just different?

JR: Sure. I use “difference” rather than “disease” because the latter word suggests a temporary condition, which autism is not. Some diseases can be cured; others kill you.  Autism is neither curable nor lethal.

The other consideration is that autism—being a brain disorder—becomes woven into our very being. Our autistic differences shape the way our brain wires itself as we develop and live in response to life’s events. Even if one could magically remove the underlying autistic difference, the “different brain wiring” would necessarily remain. That’s why I don’t think talk of a cure is realistic, while at the same time I work very hard to promote the development of tools, treatments, and therapies to remediate the specific components of autistic disability.

As promising as the future may be, at this moment, those of us with autism must make our best life the way we are today. That is the essential message of Be Different.

PB: Thank you for your description of how predictability is a critical condition for many on the autism spectrum. We think that this may explain why Tyler is fearful of dogs and other domestic pets while at the same time being fascinated by them. He is much calmer with animals on a leash than those that are running free, a distinguishing feature that he figured out himself. Do you think the predictability issue explains his behavior?

JR: I know routine and predictability are really important to lots of autistic people, me included. I believe anxiety is one of our dominant emotions, and in the case of an animal, that anxiety is going to be markedly reduced if the animal in question is under control in some fashion.

Several stories in Be Different show how I addressed those issues in my own life.

PB: Have you started thinking about book number three yet? If so, what do you plan to cover?

JR: My third book is tentatively titled Raising Cubby. It’s a tale of fatherhood, Asperger’s, chemistry, and the Bureau of Alcohol, Tobacco and Firearms. I hope it proves to be an entertaining and enlightening book.


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