C'mon, Dr. Gupta!

By Dan Olmsted

Dr. Sanjay Gupta seems like a good guy to me -- CNN's handsome doctor
in residence does a fine job of explaining medical matters to the
masses. But there must be something about autism that turns even the
best mainstream experts into fuzzy thinkers.

I refer to his CNN blog, Paging Dr. Gupta, of Nov. 19. Here are the
first three paragraphs:

"Do you know an autistic adult?

"Since first meeting 27-year-old Amanda Baggs at her home in Vermont,
I've asked just about everyone I know this very question. Surprisingly
few people have met adults with autism, but an overwhelming majority
knows a child living with this disorder.

"That's no surprise, given that the latest statistics say 1 in 150
children has autism. Boys alone have a 1 out of 94 chance of
developing it. The reason may be due, at least in part, to a greater
awareness of diagnostic criteria under autism spectrum disorder. And
without a doubt, the numbers mean a whole new generation of children
will be growing up with autism."

Now, that is one big mess. He turns the fundamental question about
autism -- whether it's increasing, and therefore an environmental
illness that must be urgently  addressed -- into glib speculation that
maybe we just didn't know any autistic people 20 years ago because no
one told us they were autistic. Yet the defining characteristics of
the full-syndrome disorder are unmistakable.

In the lively responses that follow his comments, a reader named
Ettina gets right to the point: "Doesn't the fact that there are few
autistic adults and an exploding number of autistic kids indicate
something of more importance to Dr. Gupta than talking with Amanda
Baggs? The real point is that kids are being made autistic by the
environment and not by genetics."

Thank you, Ettina. What's so teeth-gnashing about Dr. Gupta's comments
is how blithe they are: Maybe there are more kids, maybe there aren't
-- WHAT-ever -- but let's move on to this really good human interest
story about an autistic adult (a YOUNG autistic adult, it's worth
pointing out -- at 27 young enough to fit with concerns about
environmental exposures that have soared in the past three decades.)

As I've said before, I'm really not interested in any more touching
stories about people coping with autism. I'm interested in people not
having to cope with it anymore. It would be nice to see people who
have powerful platforms -- and Dr. Gupta is just one of many -- try a
little harder to get to the bottom of what's going on.

Comments

[Autismville]

I finally got around to watching the Tivo'd CNN report. I have to agree with Kim on this one. As I watched Amanda, I didn't see the same sort of autism that my sweet Jack deals with. I sincerely mean no offense by this, but the report made me curious about what her actual diagnosis is/was, etc. Just didn't ring true to our particular situation or that of so many other kids I've met over the last couple of years.

[doodle]

"Even if mercury causes autism, it's still important to accept it. Mercury poisoning causes brain damage. If your child is conclusively found to have mercury poisoning that has affected their brain, removing the mercury will help them, but they will still have brain damage. And just like brain damage from any other cause or a genetic disorder, you'll have to accept what cannot be changed."

You actually wrote that? Maybe you should re-read it and then think about people in comas, soldiers with brain injuries, car crash victims, and anyone else with a head injury. All of them have brain damage. Do we try and help them recover or do we just accept it? Look, if you want some political power for people with Asperger's, the neurodiverse, it would be wise to choose your words more carefully when addressing others. How about this "Help your child achieve to the best of his or her ability, stay positive and be supportive".

[Diane]

Anne writes "Furthermore, I think that autistic people, who are the real stakeholders here, should have a say in how we use our resources to help them."
You're kidding, right? What about all the non-verbal children and teenagers who can't get the words out even if they knew what would help them?
I am not disagreeing that we have to do everything we can for the kids who are currently affected, but if we can find the cause (ha!...we know that, don't we?)and stop it, then we can save a whole lot of kids.

[Ettina]

I didn't say that. I wrote the previous comment:
"Even if mercury causes autism, it's still important to accept it. Mercury poisoning causes brain damage. If your child is conclusively found to have mercury poisoning that has affected their brain, removing the mercury will help them, but they will still have brain damage. And just like brain damage from any other cause or a genetic disorder, you'll have to accept what cannot be changed."
The author of the comment you reference is 'Anonymous'.
I suggest you see if you can find the book No Language But A Cry published in 1968 - they describe a number of 'emotionally disturbed' and 'childhood schizophrenic' kids, most of whom would actually be considered autistic. For example, one kid couldn't talk and had extremely distructive behavior, and avoided interaction - he'd developed normally at least until age 2, and then rapidly lost skills, suggesting Heller Syndrome (Childhood Disintegrative Disorder). A few are described as autistic, but this seems in most cases to be a discription of a specific symptom - social withdrawal - rather than a diagnosis.
PS: Rechecking, I've noticed someone already pointed out this case of mistaken identity.

I think it's best we leave the conversations from other blogs out of Age of Autism. For that reason I've deleted a comment by Anne. John, I apologize if the comment appeared to target you. Moderation is an art, not a science. I'm still learning. KS

[Stagmom]

And one from Jossey-Bass, right? ;)

[Dan Olmsted]

For Anne: Hi, this is Dan Olmsted. Thanks for pointing out my flub on the author of the comment I quoted. It is not quite right to say that I am "not interested in how they (autistic children and their families) cope." What I am tired of is STORIES, articles about families "coping," rather than deeper inquiry into what's going on. These big media outlets have LOTS of money, compared to our humble operation. They should spend it on INDEPENDENT investigation into the cause/s of autism, which is what we are doing as best we can day in and day out. This situation is not that complicated -- ongoing environmental exposure is causing more and more cases even as we speak. I hate to see time and money and focus diverted into yet one more story about how a family is dealing with this nearly impossible situation. I want these kids to recover and I want the age of autism to END. One of the saddest things I've come across is that Case 2, Frederick W., came from a family of distinguished professionals -- his father was a widely known plant pathologist. Yet Frederick spent many years in a state school and according to the officials there he was "in charge of the loudspeaker at the annual carnival." This is what passes for "coping" with autism. Frederick W. should have had the chance to go to college and follow in his family's footsteps. Instead he is doing a "good job" with the loudspeaker. This is not good enough. I don't want to read any more STORIES about kids and families coping. I want kids to recover, autism to end, and families not to have to cope at all. This is the purpose of Age of Autism. Read "Mercury Link to Case 2" on our home page and tell me why we are dealing with this nightmare 75 years after the first case was born. It could have been stopped. It can be stopped. Let's stop it.

[Kristina Chew]

Thanks so much, Kim. Representation of autistic individuals and of autism is a fascinating and important topic; a book on Autism and Representation from Routledge Press is due out any day.

Kristina Chew, AutismVox.com

[Stagmom]

Dan has the best interests of children and adults with autism in mind. You'd be hard pressed to find a gentler, more gracious man. He has made it his life's work to follow up on the ORIGINAL cases of autism from the 1930's to see how the elderly adults are now doing. If he were callous he'd have long since moved on to another topic for his journalism. I met Dan for the first time in September, by the way. We did not know eachother before launching this venture.

Amanda Baggs is an unusual representation of "autism" in anyone's book. To run a special on her as representing autism is to me as one-sided and misleading as everyone assuming my kids can count the number of toothpicks on the floor when they spill a la Rainman.

[Anne]

Dan, the comment you discuss was an anonymous comment, not a comment from Ettina. Ettina is the author of the blog Abnormal Diversity and posted a comment on Dr. Gupta's blog about acceptance.

I hope CNN will air more of their footage from the trip to Autcom and include more autistic adults. Dan, even though the incidence of ASD's is rare at less than 1% of the population, there are still millions of autistic people in the world. Your statement that you are not interested in how they can cope makes me sad.

[Managing Editor]

Note to readers. We'd prefer if you do not bring other people's children into the conversation in an effort to make your points. It's not fair play to discuss a child who is not your own. That's across the board for all readers and comments. You're welcome to discuss adults of age who can respond for themselves. Not kids.

This is to protect the children and their parents, from being drawn into discussions without their knowledge.

Thank you.

KIM

[Kristina Chew]

Other autistic persons---including a teenager, DJ Savarese, who is very much like my 10 year old son, Charlie----were also featured on Dr. Gupta's special. From my conversations and interactions with many autistic adults, no one presumes to speak for "everyone who is autistic"; their perspectives can teach us all much about the experience of autism.

Mr. Olmsted, I wish to underscore the importance of programs such as the latest by Dr. Gupta, as far as presenting more about the _experience_ of autism. My family (my extended family, who lives far away from us) much appreciated learning more about life with autism, in the words of autistic persons who, truly, live "autism every day." Life with autism has many challenges but it need not be "awful," as I am afraid it is too often represented.

Sincerely,
Kristina Chew
AutismVox.com

[Wade Rankin]

Amanda Baggs undeniably is a fascinating individual. But to hold her up as a typical story is absurd. And to imply that her story may stand as an example of how we might have missed so many autistic kids before goes beyond mere absurdity. Amanda relies on a communicative device to "speak," she stims constantly, and she relies on an aide to get through the day. Could someone like her have been missed?

Neither does Ms. Baggs stand as an example that everything will be okay for our kids as adults. I am in awe of what Ms. Baggs has accomplished, and I truly respect her. I have no problem holding her up as an example to my kids, autistic and neurotypical alike. Yet I would be derilict in my duty as a parent if I did not try to remove from my autistic son the obstacles to everyday life that Ms. Baggs faces.

Amanda Baggs is a great human interest story, but it says nothing about the emerging science of autism. Dr. Gupta is supposed to be a science-and-medicine reporter. It speaks volumes about Gupta and ABC that he has devoted time on more than one occasion to this human interest story rather than discuss causes or treatment.

[John Best]

Too bad Gupta deleted all the comments that discuss Baggs being a normal child until she abused LSD at the age of 13. She was taking LSD 4 or 5 times a day. She was suicidal, wound up in a posh psychiatric hospital for a short time, got diagnosed with schizophrenia, decided she was an elf and then decided to go doctor shopping to get an autism diagnosis at age 19. She's a complete fraud and Gupta won't address any of that evidence.

Some schools of psychoanalysis may attribute her problems to being sexually abused by family members. Others may blame the LSD. Nobody in their right mind could call this woman autistic. She was a normal and intellectually gifted child who went away to college at age 13. At the time, she could talk, make eye contact and toilet herself. She is giving a false impression of autism by trying to make people think that severely autistic children will be able to communicate the way she does just by age progression.

[Ugh!]

You mean Dr. "NoWay Guptard?" That Amanda Baggs interview was such a poor representation of autism. Like Daniel Tammett. Interesting. Worth studying, but not what teachers see everyday in the classrooms.