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Posts Tagged ‘Look Me in the Eye: My Life with Asperger’s’

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.

LIVE Facebook Chat with “Amazing Race” Finalists Zev Glassenberg and Justin Kanew

Join us on May 12 from 2-3pm EST to have a LIVE Facebook Chat with Amazing Race” finalists and best friends Zev Glassenberg and Justin Kanew! The finale for “Amazing Race” is on May 8th, so you’ll be able to chat with them about their experiences on the show, as well as all of the triumphs and challenges they faced with Zev having Aspergers. 

If you missed the LIVE Facebook chat, you can watch it here.


Sneak Preview of Robison’s New Book, “Be Different: Adventures of a Free-Range Aspergian”

January 31, 2011 11 comments

Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s, has a new book, Be Different: Adventured of a Free-Range Aspergian, that will be released in March. In this video, created by Alex Plank, John reads the introduction of Be Different, set to photos from his life.

For more information about Wrong Planet visit their site here.

 

 

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