To Steve Silberman: "Please Stop Whitewashing Autism" in Psychology Today
Note: We excerpted this piece by Amy Lutz from Psychology today. The push to normalize the serious diagnosis of autism could mean less funding, fewer programs and opportunities for our loved ones on the spectrum. It certainly disrespects the plight of many of our families.
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Few things are more surreal to the parent of a severely autistic child than the neurodiversity rhetoric that recently culminated in Steve Silberman’s book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. To call the disorder that has left our children with profound impairments in cognition, communication and behavior a “strange gift,” as Silberman does, is truly mind-boggling.
No one is contesting the achievements of the “scruffy geniuses” Silberman profiles in his book, or denying that they should be celebrated. The question is whether a comprehensive, 480-page account of “The Legacy of Autism” should have devoted more space to those with low-functioning autism than the nine pages listed under this topic in the index.
Here’s what we know about the autistic population in the United States: According to the CDC, 40% are also intellectually disabled. Autism Speaks reports that 30% are nonverbal, and a 2013 study published in the journal Research in Autism Spectrum Disorders found that over half of autistic children suffer from aggressive and/or self-injurious behavior. So this is not a small fraction, although readers might be forgiven for assuming as much after finishing NeuroTribes. As Jennifer Senior noted in her review for The New York Times, “We don’t see autism in some of its more devastating forms.”
But it’s exactly those forms that need to be confronted before concluding “that much of the suffering associated with autism is the result of the ways that autistic people and their families are habitually denied the services they need,” as Silberman does, rather than the result of brutal neurological symptoms that often necessitate a lifetime of care. Read the full article at Psychology Today.
It's hard to reconcile the picture of autism in a person like me with the kind autism that leaves a young man unable to speak, unable to care for himself, and self injurious and prone to wander. It's a scary comparison and I know for some of you it's real.
There are certainly some less impaired autistic people who have experience with more severely impacted and less verbal people, while others have little or no experience and have a hard time accepting how truly crushing a disability autism can be.
But it's not 30 or 40 percent of the autistic population. When autism was more narrowly defined that may have been so, but that is not the case today. That said, there are a significant number of autistic people with major challenges and many families in critical need of support.
This is such an emotion-charged subject that it's hard to have a rational discussion. Yet the points you bring up regarding the severely impacted end of the spectrum need to be heard too. It's all too easy to lose track of those who cannot advocate for themselves.
In my own work on government autism committees I try and keep a focus on developing therapies that will help people living with autism today, and that includes the most severely impacted portion of our population. At the same time I recognize that the spectrum is very broad and we need to develop a very disparate array of services to help all or most in some way.
Our lack of meaningful help with issues like seizures and intestinal distress is very troubling to me. I think we could do a lot more to help our non speaking population to communicate, and that could be a powerful thing to reduce the frustrations that underlie some injuries behaviors.
No one person has all the answers, but we will accomplish more together than at odds.
Posted by: John Elder Robison | October 11, 2015 at 08:21 PM
What a comment Maude.
So sorry non verbal, self-injurious, prone to violence autistic people are an inconvient uncomfortable thought for you. Since your son is none of those things surely those people can't possibly exist. And even if they do, don't talk about them because it's too negative. Could you even imagine having a child like that -that you care for daily and worry every single day what is going to happen to them when you die?
Obviously you can't.
You're damn lucky lady.
Posted by: Andrea | October 01, 2015 at 07:11 AM
Hi Maude ,
Have you ever read the DSM 5 ( which is the criteria which is used to diagnose all autism in the United States?)
Here it is https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria
Even on the most mild level, level 1, it states 'attempts to make friends are odd and typically unsuccessful"
Just interested; do you believe your son meets the diagnostic criteria for autism? Which ones?
And yes, there are many kids out there whose autism is much more severe than your sons.
Its a bit like someone with a kid who wears glasses (and is on the sight impaired spectrum) telling someone whose child is blind that they should just "focus on the good".
Posted by: Hera | October 01, 2015 at 02:03 AM
I don't believe those figures are correct. My son went to college He was verbal. He was not self injurorious. Not all children are like that. 30% are intellectually able. Talk about the good. Not all are violent or self injurious. My son is verbal, very smart, very empathetic and loves to make friends.
Posted by: Maude | September 30, 2015 at 09:28 PM
Steve Silberman can pretend everything is fine all he wants. Teachers are aware of the carnage that is our childrens' development and health and they are leaving the field. Many simply cannot cope with all the strange gifts in the classroom.
Posted by: Educator | September 30, 2015 at 06:39 PM
@ cmo
"Quite the “five hour debate” on Planned Parenthood yesterday with the House Oversight Committee.'
Unfortunately .. unlike Planned Parenthood .. there was no one present in that room when high level individuals decided to destroy any evidence that showed a significant risk of autism to black American children if they received the MMR vaccine prior to 36 months. Indeed, I suspect .. had there been "hidden cameras" in that room to show the "evidence" being stuffed into garbage bags .. the House Oversight Committee would have had no choice but to hold immediate public hearings.
Which is why I fervently hope the same individuals responsible for filming Planned Parenthood representatives casually discussing the procurement and brutal dismemberment protocols of aborted infants .. conduct the very same hidden camera surveillance investigation of individuals at the highest levels of our public health agencies engaged in discussions regarding the deceptions they resorted to .. in order to continue denying any link between vaccines and the numerous chronic autoimmune disorders now common in this generation of children .. coincidently .. the generation that has received the highest numbers of vaccines in our nation's history.
In other words ... the ONLY reason the House Committee held a public hearing on Planned Parenthood .. is the videos.
For instance ... the NFL did not adequately punish Ray Rice .. until the "video" of him assaulting his wife inside that elevator surfaced .. embarrassing BOTH the NFL and Ray Rice.
As the old philosophic saying goes .. "If no one sees a tree fall in the woods .. the question becomes .. did the tree make a sound when it fell?"
Ah yes .. who can say for certain?
Posted by: Bob Moffitt | September 30, 2015 at 02:45 PM
Quite the “five hour debate” on Planned Parenthood yesterday with the House Oversight Committee.
This same Committee IS ALSO supposed to hear CONCERNS from Dr. Thompson of the CDC who says the… CDC IS LYING TO THE PUBLIC … in regards to a number of …Vaccine / Autism… issues.
This would involve 1.5 million "live children" & counting.
I would suggest a similar hearing with the CDC, Insel, Offit where perhaps Mr. JB Handley could be present to help the Committee ask the proper questions.
Posted by: cmo | September 30, 2015 at 01:04 PM
There are some frightening comments following the article. Instead of saying that we should listen to autistic people about autism, it would be more accurate to say that narcissistic people who may have mild Asperger's demand that only their viewpoints be respected because they're God's gift to the universe. The idea that some of these people want to run organizations for autism is truly disturbing. I always want to ask people who view autism as their gift if they're getting disability for it. So yes, it can be viewed as a gift because it means they don't need a job.
Posted by: Margaret | September 30, 2015 at 11:51 AM
Reading the comments posted on Psychology Today brought back a flood of difficult memories of my grandson .. god bless him .. now and then .. a lovable .. non-verbal boy .. one of tens of thousands diagnosed autistic so many years ago .. when the rate was 1 in 168.
That was a time when no one ... neither doctors or parents .. had ever heard of autism .. let alone knew what caused it or how to best treat it.
Indeed .. some estimate between 400,000 and 500,000 under the age of 21 .. including my now 16 year old grandson ..who are routinely ignored and cruelly dismissed by the "neurodiversity movement" as mere "inconvenient statistics" .. preferring instead to dwell on the obviously smaller numbers of "gifted people" with autism.
Eileen describes the "neurodiversity movement" as EVIL .. and .. I wholeheartedly agree with Eileen.
When my grandson was first diagnosed .. Autism Speaks produced a 13 minute video .. "Autism Every Day" .. which can still be viewed at:
https://www.youtube.com/watch?v=O0vCz2KWMM0
It was this shocking "reality" video of the daily lives of autism parents that created the "neurodiversity movement" .. which launched a vicious counter-attack proclaiming the video was a misrepresentation of autism ... which THEY claim to be a GIFT ..
In my opinion .. the "Autism Everyday" video .. was the FIRST and LAST time .. that Autism Speaks did anything to make our country AWARE of the difficulties in the daily raising and coping with an autistic child on the lower end of the spectrum.
Instead .. Autism Speaks has been all about MONEY .. under the pretense of creating AWARENESS of autism .. making absolutely no effort to distinguish the difficulties between various levels of the entire spectrum .. which allows the neurodiversity movement opportunity to claim ALL autism should be considered a GIFT.
Shame on Autism Speaks .. because .. as evidenced by the video .. they at one time .. had gotten it right.
Posted by: Bob Moffitt | September 30, 2015 at 10:05 AM
The Neurodiversity movement is evil. Thank you for the link to this article.
Language is the defining characteristic of the human species. Loss of language in adulthood (aphasia) is a tragic disability. Failure for language to fully develop is even more tragic.
Any "professional expert" on autism deserves only shame for promoting Neurotribes. Trying to pin autism on eccentric scientists of the past is bad history and bad science.
Posted by: Patience (Eileen Nicole) Simon | September 30, 2015 at 06:30 AM