Deconstruction | Autism Speaks & GRASP to Exchange “Articles of Understanding”

Press Release: May 17, 2006

Autism Speaks and Grasp to Exchange “Articles of Understanding”


Summary

Autism Speaks published a press release about the conflict they created with Autistic people over the use of the word ‘cure’ in regards to Autism and mission goal.

The controversy being specifically addressed in the statement erupted between Autism Speaks and GRASP (Global Regional Asperger Syndrome Partnership) back in 2006.

Autism Speaks, a parent-led organization, and GRASP (Global Regional Asperger Syndrome Partnership), the largest organization with Autistic adults in 2006, were going to post these statements in an attempt to spark a “substantive and mutually respectful dialogue about why they differ on using the word ‘cure.’”

It would take Autism Speaks until 2016 to remove the word ‘cure’ from their mission statement and marketing messages.


Note: Asperger’s Syndrome is Autism. Asperger’s Syndrome is no longer a current term and is being phased out of use worldwide. Some Autistics still identify with the term Aspie.

While some Autistics connected with the identity of Aspie due to their diagnosis years ago, there are some issues with Aspie Supremacy in the Autistic community (a form of elitism). Also, there are some parents of Autistics that use these false functioning labels to diminish, dehumanize and belittle Autistic activists they don’t agree with.

Today there is much conflict with the use of the name Asperger’s due to Hans Asperger’s recently exposed affiliation with Aktion T4 and other NAZI horrors against disabled and autistic people.


The articles were to be published sometime later that spring by Alison Tepper Singer, Senior Vice President of Autism Speaks, and Michael John Carley, Executive Director of GRASP.

Dr. Ami Klin, director of the Autism Program at the Yale Child Study Center, wrote the introduction. (The introduction and the Articles of Understanding are posted in full below.)

GRASP is an organization that operates differently than Autism Speaks. There are stipulations that GRASP must follow in accordance with their bylaws — that the Executive Director, 100% of the Advisory Board, and 50% of the Board of Directors of GRASP must be diagnosed with either Autism, Asperger Syndrome, or Pervasive Developmental Disorder.*

This is a far different dynamic than the parent and professional-led organization, Autism Speaks, that didn’t include any openly Autistic board members, and also didn’t include any Autistics in leadership positions.

Many Autistic advocates were vocal about these Articles of Understanding between GRASP and Autism Speaks. Mel Baggs, a non-speaking Autistic and disability advocate, responded to the Articles of Understanding with a video on YouTube.

I’m going to breakdown just the text in the press release here, and follow with a comparison table of what they say to what I see. There’s a lot of Autistic History here to unpack (at a future date.) For now I’ve included the press release, the introduction and two Articles of Understanding, Mel Baggs’ response and some related links.


The Person First Language (PFL) used in the press release is a red flag that this organization is parent-led or professional-led and doesn’t include Autistics in a meaningful manner. 

The Autistic community uses Identity First Language (IFL). We identify as Autistic people. We have Autistic culture, Autistic community, and even Autistic humor. Organizations connected to the Autistic community show respect to our culture by using IFL.


The merger of Autism Speaks with National Alliance for Autism Research (NAAR) mentioned in the press release’s bios makes Autism Speaks a powerful voice and influence in the United States. With this merger they have begun the monopoly on disseminating autism information and start in earnest their silencing of Autistic people.

The press release uses the medical model deficit description of autism. The words early intervention, cure, treatment and prevention are speaking to eugenics (this is the prevention of birth for Autistics based on “autism risk”), Applied Behavioral Analysis (ABA), and other therapies.

Autistic people have fought the inclusion of ABA in therapy for us since Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. 

ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.

The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work. 

What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.

The Autism Speaks press release uses tragedy and fear narrative to describe autism with descriptions like epidemic. This type of marketing has been incredible in driving donations to “cure” autism.

It also includes dangerous influencers: Bob Wright, Suzanne Wright, and Alison Singer. With the way these Articles of Understanding are written, I’m not sure where GRASP landed with Autism Speaks after publication.


Quote:

Two Leading Autism Organizations Will Post Articles Online in an Effort to Foster a Respectful and Productive Dialogue About Their Differing Viewpoints

The Breakdown

  • Two autism organizations will post their viewpoints
  • The two organizations have different view points
  • The effort is to foster a respectful dialogue between them

(NEW YORK, NY – May 17, 2006) – Autism Speaks and GRASP (the Global Regional Asperger Syndrome Partnership) will pen articles for each other’s web sites in an effort to create a substantive and mutually respectful dialogue about why they differ on using the word “cure” in relation to autism, the two organizations announced today. The articles, which will be written by Autism Speaks Senior Vice President Alison Tepper Singer and GRASP Executive Director Michael John Carley, will appear online later this spring and present the organizations’ differing viewpoints on this specific issue. Autism Speaks, a non-profit organization dedicated to increasing awareness of autism and raising money to fund autism research, uses the term “cure” in its discussions about autism spectrum disorders while GRASP, the largest organization of adults diagnosed along the autism spectrum, does not. 

The Breakdown

  • Autism Speaks is a autism organization.
  • GRASP (Global Regional Asperger’s Syndrome Partnership) is an autism organization.
  • Each will pen an article for the other’s website.
  • The articles will speak to the word ‘cure’ in respect to autism
  • Autism Speaks Senior Vice President, Alison Tepper Singer, will be a writer.
  • GRASP Executive Director, Michael John Carley, will be a writer.
  • Autism Speaks uses the term “cure” in their marketing and discussions.
  • GRASP, largest organization of adults diagnosed along the autism spectrum, doesn’t.

Quote:

ABOUT AUTISM SPEAKS
Autism Speaks is dedicated to increasing awareness of the growing autism epidemic and to raising money to fund scientists who are searching for a cure. It was founded in February 2005 by Suzanne and Bob Wright. Bob Wright is Vice Chairman and Executive Officer, General Electric, and Chairman and CEO, NBC Universal. Autism Speaks and the National Alliance for Autism Research (NAAR) recently combined operations, bringing together two of the leading organizations dedicated to accelerating and funding biomedical research into the causes, prevention, treatments and cure for autism spectrum disorders; to increasing awareness of autism, the nation’s fastest growing developmental disorder; and to advocating for the needs of affected families. To learn more about Autism Speaks, visit www.autismspeaks.org

The Breakdown

  • Autism Speaks is dedicated to increasing autism awareness and the growing autism epidemic.
  • Autism Speaks is dedicated to raising money to fund scientists in the hunt for an Autism cure.
  • Autism Speaks was founded by Suzanne and Bob Wright.
  • Autism Speaks and NAAR combined their organizations
  • Autism Speaks is dedicated to accelerating and funding biomedical research into autism causes, prevention, treatments and a cure.

Quote:

ABOUT GRASP 


GRASP, the Global and Regional Asperger Syndrome Partnership, is an educational and advocacy organization run by and for adult individuals on the autism spectrum. As per their bylaws, 50% of their Board of Directors, 100% of their Advisory Board, and the Executive Director must be diagnosed along the spectrum with either Asperger Syndrome, PDD, or Autism. Begun in 2003, GRASP planned on expanding nationally by its 7th year, but due to the immense need for shared experience did so by its second year. GRASP already has 12 regional networks stretching from Iowa and Virginia to CT, with many more planned; performing outreach, advocacy, and intervention through the peer-run support networks it runs. It is the largest incorporated organization in the world comprised of adults on the autism spectrum. To learn more about GRASP, visit www.grasp.org.

The Breakdown

  • GRASP is an educational and advocacy organization operated by Autistic adults.
  • As per bylaws: 50% of their Board of Directors must be Autistic
  • bylaw: 100% of their Advisory Board must be Autistic
  • bylaw: Executive Director must be Autistic.
  • GRASP began in 2003
  • GRASP expanded nationally within two years due to immense need
  • GRASP had 12 regional networks from Iowa and Virginia to Connecticut.
  • More networks planned as well as outreach, advocacy, and intervention through peer-run support networks.
  • Largest incorporated organization in the world comprised of Autistic adults.

Comparison Table

What They SayWhat I see
Legislation & Initiatives
Articles of Understanding
Autism Speaks & GRASP will write an article on their stance about the word “cure”

– The initiative is to spark respectful dialogue between the two














Articles of Understanding
– Autism Speaks makes a formal post about the conflict with Autistic people over their use of the word ‘cure’ in their mission.

– The initiative to create respectful dialogue is a big gaslight meant to appease and pay lip service to non-Autistics donors and potential partners questioning their motives/stance.

Fact: There is no such thing as a cure for autism – ever. The only cure would be prevention of birth based on ‘autism risk.’ This is the same ‘cure’ society has for Down Syndrome.

Autism Speaks removed the word ‘cure’ from their mission statement in 2016.
Influencers/Influenced
Potential donors
– Potential sponsors
– Some Parents of Autistics
– General Public

– Alison Singer, Senior Vice President of Autism Speaks
– Parent of an Autistic







Michael John Carley, Executive Director of GRASP
Autistic
Parent of an Autistic
– GRASP is Autistic-led organization

GRASP, advocacy organization run by Autistic adults
– 50% of board must be Autistic
– 100% of advisory council must be Autistic
– Executive Director must be Autistic

– Bob Wright, co-founder of Autism Speaks
– Grandparent of an Autistic
– Vice Chairman of General Electric (GE)
– CEO NBC Universal




Suzanne Wright, co-founder of Autism Speaks
– Grandparent of an Autistic





Potential donors
– Potential sponsors
– Some Parents of Autistics
– General Public


– Alison Singer, Senior Vice President of Autism Speaks
– Non-Autistic Parent of an Autistic
– Not an Autistic Ally
– Dangerous Influencer
– Silences/and or speaks over Autistic advocates and Autistic people. 

– Michael John Carley, Executive Director of GRASP
– Autistic
Parent of an Autistic
– GRASP is Autistic-led organization

GRASP, advocacy organization run by Autistic adults
– 50% of board must be Autistic
– 100% of advisory council must be Autistic
– Executive Director must be Autistic

– Bob Wright, co-founder of Autism Speaks.
– Non-Autistic grandparent of an Autistic
– Not an Autistic Ally
– Dangerous Influencer
– Silences/and or speaks over Autistic advocates and Autistic people.

 Suzanne Wright, co-founder of Autism Speaks
– Non-Autistic Grandparent of an Autistic
– Dangerous Influencer
– Silences/and or speaks over Autistic Advocates and Autistic People
Target/Demographic
– Autistics
– Parents of Autistics
– Grandparents of an Autistic
– Loved ones of an Autistic
– Professionals
– Concerned US citizens
– Potential donors
– Autistics
– Parents of Autistics
– Grandparents of an Autistic
– Loved ones of an Autistic
– Professionals
– Concerned US citizens
– Potential donors
Marketing & Language Used
– Person First Language (PFL)

– Autism awareness, autism causes, autism prevention, autism treatment, autism cure

– epidemic, devastating disorder, big increase in population
– Autistic Culture uses Identity First Language (IFL)

– Promotes Autism myths and misinformation

– Tragedy Narrative
– Fear/Violence Narrative
– Cure/Eugenics language


Articles of Understanding: An Introduction by Dr. Ami Klin Director of the Autism Program at the Yale Child Study Center

Articles of Understanding: Introduction

By Dr. Ami Klin, Director of the Autism Program at the Yale Child Study Center in New Haven, CT.

Individuals less knowledgeable about autism are likely to be struck by how persons with autism spectrum disorders differ rather than how they are alike. The variability is immense. From individuals who are burdened by severe to profound intellectual disabilities to persons who are gifted and more competent than most in the community. From those who cannot speak to those who are loquacious. From those whose isolation is manifest by complete social withdrawal to those who cannot stop approaching others albeit at times awkwardly. From persons who are enchained by self-stimulating movements, rituals and self-injurious behaviors to those whose knowledge about circumscribed areas of knowledge or special skills are prodigious. These, at times, extreme characteristics notwithstanding, all are people with emotions who can love and can be hurt, who need to meet the demands of everyday life, and who are desirous of independence and meaningful relationships. Some are in need of intensive supports whereas others require little more than an equal opportunity community. All deserve a stab at happiness and a fulfilling life. Most can make contributions to society whereas some can in fact build on their specific strengths and reach unique achievements in science, art and technology.

This extraordinary variability defies sweeping generalizations to be tagged to the entire community of individuals with autism spectrum disorders. It is, therefore, understandable that while some crave acceptance and integration, others crave meaningful supports and treatments. This diversity also calls for the notion that persons with social vulnerabilities are individuals first, distinct community second, and never stereotypes. Active advocacy, therefore, needs to be tailored to whom the advocacy is for. For some, intensive interventions, amelioration of symptoms, increased independence and effective entitlements and respite are a must. For others, real opportunities in a world of employers that could (and must) capitalize on some of these individuals’ singular strengths (which can include a variety of talents as well as loyalty, reliability and punctuality), is what is needed.

For families whose challenges are overwhelming, the search for cures, or at least, for more effective treatments, is a clear consensus. For individuals struggling to be accepted in their communities for their strengths rather than being ostracized for their differences, respect is the natural rallying cry. In all instances, however, there is a need for greater awareness of the autism spectrum disorders; of the burdens to individuals and families in some cases, of the unique talents and capabilities in others. The whole community is enriched by this diversity. But this goal is conditioned by the collective respect for individual differences and for a realistic appraisal of what are the challenges and aspirations of each person and their families. In all of these areas, the needs are great and knowledge is still limited. Although a new age of advocacy dawned some years ago, with much greater involvement of families and the affected individuals themselves, this work is still in its early stages, and our hopes for a different future depends to a great extent upon resources, increased awareness, and the availability of a great many more opportunities.

Source: http://web.archive.org/web/20100922054125/http://grasp.org/media/ArtUnKlin.doc


Articles of Understanding by Alison Singer Senior Vice President of Autism Speaks

Cure is not a four-letter word

Alison Singer

Senior Vice President, Autism Speaks

My daughter Lauren-a typically developing child- has a wonderful, dynamic friend named Haley who has been diagnosed with Asperger Syndrome. While Haley is the best reader in the second grade and can argue circles around the school principal, it is gut-wrenching to watch her struggle in school every day. She cannot keep friends and is often all alone on the playground during recess. She is prone to violent outbursts and is generally unable to function in her classroom without one to one support. Sometimes the kids, and quite honestly her teacher, seem afraid of her.  Her mother suffers every day along with Haley, as she wards off the pressure to administer medications that might calm the unruly, disruptive behaviors, but might also extinguish the brilliant light that has helped Haley excel academically.  Haley has a personality and a mind all her own;  if she were she my daughter I would be similarly loathe to squash it. Haley needs a lot of support and understanding, but she doesn’t need to be cured.

Lauren’s older sister, Jodie, shares the same DSM-IV diagnosis as Haley, but Jodie has classic autism, which falls on the other end of the autism spectrum from Asperger Syndrome. While I have often marveled at Haley’s rhetorical skills and quick wit, Jodie struggles to simply string two words together with any communicative intent. Many days it is hard to believe that the challenges Haley faces with regard to her Asperger Syndrome and those Jodie struggles with are related under the same DSM-IV diagnosis.  At one end of the autism spectrum we often find lower functioning persons like my daughter who cannot speak, have violent tantrums and can be self injurious, while at the other end we have persons who struggle with very significant, but very different, predominantly social issues.

Too Wide a Spectrum?

I’m sure a lot of thought went into the decision to include Asperger Syndrome as one of the autism spectrum disorders.  On a scholarly level I understand that Asperger Syndrome is an expression of the extreme social deficits that characterize all those on the spectrum.  Also, I am certainly glad that persons with Asperger Syndrome are becoming able to access support and services if they feel they need them.  But the “differing abilities” of persons with Asperger Syndrome are nothing like my daughter’s autism. When we at Autism Speaks use the word cure, we are most often focused on the people at the lower end of the spectrum.  I have not met a person with Asperger Syndrome who seemed anything like my daughter.  None of these persons, however, has ever met my daughter because it is so hard to take her out of the house.  It is hard to consider her “differently abled” because she is not “abled”.  She is sweet and loving and works harder than anyone I know, but she does not have any areas of strengths that I fear squashing through medication, intervention or cure.  Without her medication, she cries almost constantly during the day and can’t sleep at night. She has frequent seizures. She cannot tell me when she is in pain, or where it hurts. She puts everything in her mouth unless it is food.  At age 9, her favorite game is still “this little piggy”. Thankfully, recently she has learned to use words to name items she wants and needs, and this has dramatically reduced her violent tantrums.  She has benefited greatly from behavioral therapy and from risperdal and depakote but she has a long long way to go. She has a neurological disorder that responds to antipsychotic medication. Her pain is heartbreaking and I pray every day for a cure.  I do not use the word cure to insult other people on the spectrum. I use it because it accurately conveys my hope that one day, her constant struggles will end and she will know a different, pain-free life.  

Use of the word cure holds particular meaning to parents whose children suffer regressive autism. These parents I often feel suffer the most, as they had a glimpse of their children before autism. These parents seek a cure because they remember the child they had and want him back. Autism Speaks’ constituency tends to be dominated by parents of lower functioning children because many parents of children who are diagnosed as high functioning enough to be mainstreamed do not want to be associated with autism because of the stigma that is still attached to the disorder and for fear that their children will suffer from the label.  Thus, our community does tend to be dominated by the faction of parents in search of a cure.

For this reason, much of our community struggles with the portrayal of basketball star Jason McElwain as the poster child for autism. My daughter can’t carry on an impromptu conversation with the press the way Jason did. She can’t make a basket. She can’t throw the ball.  She couldn’t sit still to watch the Teen Choice Awards, and I daresay she’ll probably never receive one.  Jason is a hero for all he has accomplished, but the kids who struggle to learn to count, use a fork and say “I love you” are equally heroic. 

Asperger Spectrum Disorder?

A good deal of the furor over the word cure may be the result of confusing “autism” with “autism spectrum disorder.”  There are five diseases that fall under the autism spectrum disorder umbrella, one of which is autism.  One of the five, Rett’s Syndrome, has its own advocacy community. The gene that triggers Rett’s has been identified and yet the Retts community does not protest when we say we do not yet know the genes that trigger autism, because they are aware we are speaking of autism and not all of the autism spectrum disorders.   When Asperger Syndrome groups use the term “Asperger” it is clear what they are talking about. When autism organizations use the word autism it is often unclear whether we are talking about autism or the entire spectrum, including Asperger Syndrome.  Most of the time, we are talking about autism.

But for whatever reason, all five disorders are placed together under one diagnosis because the similarities between them are greater than the differences. Perhaps we could take a lesson from other disease advocacy organizations.  There are many different diseases that fall under the umbrella “cancer”, but no one argues that the intervention for leukemia should be the same as for brain cancer.  No one says that bone marrow research is insulting because it doesn’t serve the needs of persons with brain tumors.  

Hope is not a four-letter word

At Autism Speaks, we are committed to bringing a voice to all who struggle with any type of autism spectrum disorder. Our goal is to do this by funding science that will find new treatments, and yes, ultimately, we hope, a cure for autism.  In fact, in our last round of grants, we funded several projects focused on Asperger Syndrome and high functioning autism. We appreciate that persons with Asperger Syndrome have different needs than persons with lower functioning autism but we all need more options and new opportunities. Our hope is not to alienate but to unite in order to bring greater awareness of autism spectrum disorders to the public at large and thereby greatly increase public funding and private donations for treatment and research, increase access to services and reduce the stigma that is still associated with autism spectrum disorders. By shining a strong spotlight on autism spectrum disorders we can create a brighter future for all those who are affected.

http://web.archive.org/web/20080414094450/http://www.grasp.org/media/ArtUnTSinger.doc


Articles of Understanding by Michael John Carley, Executive Director of GRASP

Articles of Understanding:

GRASP, and the word “Cure.”

Contribution by Michael John Carley, Executive Director, GRASP.

When my son and I were diagnosed with Asperger Syndrome (AS) one week apart in late 2000, I had no idea what kinds of debates were ongoing in the autism world. I thought initially that the autism world would all think the same: “How can they not, given that there’s so much at stake?” 

But they don’t. There are hot debates about methods, ethics, and theories—many more so than those Alison and I will touch on with this exchange. And these conflicts are probably a good thing, not a bad thing, even if it complicates matters. For in the grand scheme of things, we still know relatively very little about “all this autism stuff” and these discussions are really the correct, Darwinian road that we should all be on. The problem has only been where the debates have become so divisive; where one side’s opinion has so invalidated the experiences of the other. How the disputes are played out can be vastly improved upon. And this exchange with AutismSpeaks is a welcome opportunity to rectify some of the hurt that folks on both sides of this debate have experienced.

What I’m going to try to do is outline where we see the divisions existing, and then tell you why GRASP, and maybe other peer-run autism organizations (in other words, organizations run by adults on the spectrum) believe the way we do.

Where the disagreement lies

Yale’s Fred Volkmar once used the words “lumpers” and “splitters” to define the two camps. I like these terms.

On one side are the splitters who think Autism and AS can be clinically separated. On the other, the lumpers, who feel the autism spectrum is all one and the same only with extreme ends, and a vast gradient in between.

Both lumpers and splitters would agree that if Albert Einstein (among many others) really did have AS, as people now say he did, then that’s certainly not what people normally associate towards someone severely autistic who may be completely non-verbal. But while no one would want to have “cured” Albert Einstein of anything; if the lumpers are right, then that is exactly what we are saying—and this is where the two disagreements become one. 

Splitters use the word “cure” believing that autism is a terrible thing to happen to a person, whereas AS, while presenting difficulties, is believed to be not so terrible, and maybe doesn’t warrant use of the word. Lumpers (like us) do not believe in the opposite, i.e. that AS is somewhat terrible and/or that autism is not. Rather, they/we believe that the answers are far more complex.

The word “Cure,” like the word “disease,” has historically reflected conditions, syndromes, and diagnoses that are acquired, meaning that you got it from somewhere after you were born. Now granted, genetic alteration—as proven by a Welsh lamb a few years ago—is not the impossibility we once thought it to be. And depending on what dictionary you’re consulting, the descriptions of these words may not match the populist manner in which they are used. But in general, most people who believe that autism and AS are genetic do not use the words “cure” or “disease” because they feel primarily that what you were born with—i.e. your genes—you will die with. However, if you do believe that autism is acquired, then the word would seem to be medically appropriate.

That’s the medical side to the terminology. But there’s an ethical side too: Who gets to determine what words are used?

This answer too may reflect one’s identity as a lumper or splitter. In other words, if our ideas of autism strictly revolve around those who are primarily non-verbal, then in an age when we have not yet learned to communicate with the non-verbal autistic, we do not know what terms they would like us to use. Therefore, under these ideas, they have to be spoken for by others.

But confusing things further, what if, through therapies and treatments, they become verbal? Has their diagnosis then changed?

The authors of the DSM-IV*, for instance, will readily admit that the definitions described for AS and autism do not accurately reflect the world of adults being diagnosed late in life. These adults, coming from pasts of misdiagnosis, or being thought of previously as quirky, schizophrenic, eccentric, things far worse…these adults can be identified for the symptoms they have, and, for the symptoms they don’t have as described in the book; much the same way children are diagnosed. But the book fails the adult diagnosee in that a 3rd category of behaviors—the symptoms they once had, but that either through peer pressure, labor…etc. they somehow altered or ironed out of their system—can’t be taken into consideration with 100% accuracy. 

*The Fourth edition of the Diagnostic and Statistical Manual, the clinical reference book used to diagnose us all by psychologists, psychiatrists and the like.

If that individual doesn’t have the symptoms anymore, the question then becomes: are they to be thought of as cured?

Is your head spinning yet? After three years in this job, I promise you: My head never stopped.

I won’t profess to you, as someone with AS, that I clearly know what’s going on inside the head of what might be your non-verbal daughter or son sitting there in their own world. But I do feel there’s more going on inside that head than we, myself included, usually give their credit for being. We just don’t see it, so it’s hard to believe. Furthermore it’s not on a level we understand (yet), and because we love them, this hurts. Obviously, we want to bond with those we love, not think of them as, at best, awe-inspiring mysteries.

As is our nature, organizations of people on the spectrum will focus in on the suffering of people on the spectrum, just as parents organizations will hone in on the suffering of other parents. Both sides learn a lot from one another (which is why GRASP proudly partners with many parents organizations) but what helps parents is often mistakenly spun as helping the autistic or “aspergian” individual (and, to be fair, vice versa). No one can know for sure but many people from our community believe that many non-verbal individuals are quite content in their world, especially if they have good supports and are encouraged to think positively about themselves. The burdens of the families, however, revolve around a myriad of potentially traumatizing circumstances: Financial concerns, deteriorating marriages, addressing neglected siblings, one parent having to quit a job to stay at home to take care of the affected individual; and this is all exceedingly hard, traumatic, life-altering stuff. But the tragedy is so often due to our expectations. There is no fault in this—I face it too as a parent—but you could frankly argue that our problems might have more to do with the playing field autism found itself on, and not with autism itself. 

Lastly, are all these diagnoses terrible things to have, or not so terrible things to have? We’re certainly getting mixed messages these days. For examples, there’s:

– the movie about the autistic boy making the track team

– email groups that heavily criticize verbal adults on the spectrum who call themselves “autistic”

– stories describing autism as an epidemic

– books describing Thomas Edison, Thomas Jefferson, Emily Dickinson, Andy Warhol…etc. as being on the autism spectrum

– an educational internet campaign describing the various contraptions a very affected person with autism wears inside the white-walled room where she is pictured

– ESPN showing footage of an autistic kid hoisting 20 in a basketball game. 

I could go on…

But instead of answering the question is it terrible or is it not so terrible, maybe the mixed messages are exactly what should exist? Or, would it be better if autism and aspergers were vastly different so that these issues wouldn’t be so confusing? 

It’s probably very traumatic for the parent of the severely-affected child to be lectured on the immense potential inherent in the brain and ability of a person on the spectrum. If, when they ask for help, they were to be told no, because their child might have a noble prize in him, I can imagine fewer injustices that would be larger than that. Wouldn’t that seem to insultingly invalidate all the hardship they were going through?

Wouldn’t it also be equally scary for someone on the spectrum who is desperately seeking positive self-images to be lectured by the world that his life will be, or is, awful? 

Why

All sides, not just GRASP and AutismSpeaks, have well-educated clinicians to turn to for quotes or studies to cite. GRASP can quote the work of Dr. Tony Attwood, others might cite passages from Catherine Maurice’s “Let Me Hear Your Voice.” The Yale Child Study Center never uses the word cure, but they do believe in a split between the diagnosis  . . . Dr. Simon Baron-Cohen, also, has views of his own too unique to compartmentalize . . . so one can’t even ask “which side are you on?” because the number of sides is too numerous to count. GRASP’s own Board of Directors even, is capable of a spirited internal dialogue on these matters, albeit in the spirit of mutual support and respect.

In the grand scheme of things, when there is so much still to be learned about autism, we know very little. This doesn’t, and shouldn’t curtail our firm beliefs, as that’s how progress is made, but it is something quite healthy to keep in the back of one’s mind.

GRASP primarily believes that Autism, Aspergers, PDD-NOS (Pervasive Developmental Disorder—Not Otherwise Specified)…etc. will eventually be found to be variants of one and the same diagnosis.  The main three reasons why we believe this are as follows: 

1. Quite simply, it hasn’t been conclusively proven otherwise.
2. If the autism spectrum runs from A to Z; and if Albert Einstein is “A,” and that non-verbal individual is “Z” (using the ability to succeed in the world as our spectrum), then where is the Autism/Asperger cut-off? Is the line in the sand drawn at “M” or at “N”? 

Although GRASP does not have non-verbal folks participating in our support groups, the problem for us is that, in addition to the “M”s and the “N”s, we see plenty of “G”s and “T”s along the functionality spectrum. And we see no dividing mark. We see a gradient. We see a gradual progression of abilities and challenges that flow into each other quite naturally. Also, if there was a dividing line between “M” and “N,” what if “N” was able to improve enough to cross over into “M”? Again, the diagnosis can’t change, but the affected individuals almost always do, and often quite dramatically.
3. Prior attempts at clinically marking the separation have failed under the microscope of experience. If, for instance, we go by the adage that if one was talking at 36 months, it’s AS; and if not, its autism…then my son has autism. But my son plays little league, guitar, and now has sleepovers with his friends . . . 

In GRASP’s networks there are teachers, Ph.D.s and city workers diagnosed with autism; and there are contradictorily severely-challenged folks diagnosed with AS living in institutionalized settings. The influence of good vrs. inadequate supports in one’s life (family life, and education, as well as clinical support) will go a long way towards determining that person’s abilities, where they fall on the spectrum, and how happy they will be. 

That educated diagnosis will always help as well. But even if AutismSpeaks and GRASP were to agree on the words that should be used, the psychiatric community may fail us both. Currently, there is too much inconsistency amongst the diagnostic world for us to become too married to the diagnoses we are often given. Despite their degrees, there are a lot of inadequately informed clinicians out there.

GRASP also believes in the genetic nature of autism. Environmental, man-made factors may exacerbate existing autism (that simply hadn’t shown itself prior), or trigger it, just like a sensory integration issue‡ would. But it’s when people use the word causes instead of exacerbates that we have to say we disagree. 

‡ i.e. a strong sensitivity to certain smells, a reaction to fluorescent lighting, a highly individualized response to unique sounds…etc. Almost everyone on the autism spectrum is believed to have at least one sensory integration issue.

Following in this path, if GRASP is correct and autism is genetic, we then conclude that to use the word “cure” is medically inaccurate. 

In truth, the context of the word “cure” could be infinitely more complex than even GRASP would like. The rare but frightening regressive features that can surface are the outcome of unknown causes that may include genetic and environmental combinations.  Also, autism was an outcome of a separate condition called “PKU” (Phenylketonuria)  which actually has been either “cured” or treated effectively. These admittedly complicate our arguments, even if these more specialized issues are not part of the mainstream language. But leaving the medical world for a moment, let’s move to the other portion of the “cure” debate: the ethical component, because that’s where we feel our arguments are the strongest. 

The DSM-IV came out in 1994, and under the new definitions of the autism spectrum, perhaps over a million more Americans might qualify for an autism spectrum diagnosis than did prior. The generations of people once thought of as strange, strangely charming, as geniuses, or failures…etc. who otherwise never would have qualified, myself included, have greatly influenced the alarming statistics we hear nearly every day (such as the 1 in 166 figure cited from the U.S. Government Center for Disease Control) as has far greater public awareness. 

But this expansion of who qualifies means that autism has found its way into the world of the verbal, of people who are able to read what’s being said about them, and able to give feedback about their feelings towards how they are being described. And GRASP feels that it is these individuals who should be dictating what words are used to describe them—not the doctors and researchers. Even if we at GRASP are completely wrong as to the medical accuracy of such words, do Caucasian people get to tell African-Americans what words should and should not offend them? Should Latino women get to tell Asian men what they have a right to get upset about? Words hurt. And almost every one of our folks admits feeling unwanted to some degree when a well-meaning person tells them they hope there’s eventually a cure for what they have. Many of our folks, frankly, feel that anything with a prefix of “dis” is bound to have a psychologically-negative effect—all in good time—but the point here for us is that our population is having a hard enough time finding positive self-imagery. They want to be respected for who they are, and these words, in addition to our population’s already-obvious obstacles, make things far worse. 

Adding to that negative iconography is that when adults on the spectrum voice their objection to these words, and people respond by either not hearing, or by pretending not to hear, these objections; then their feelings become invalidated too. The use of the word “cure” has been a universally-denounced term amongst our folks. The researchers may argue truthfully that it’s not intended to hurt the feelings of people on the spectrum, but is it their call?

Autism, whether we like it or not, does not mean just the severely-affected, non-verbal person anymore. That person is a component to be taken into BIG consideration, most assuredly, but the spectrum got more confusing in 1994, and we believe this also is a good thing, not a bad thing; a “thing” that puts us on the road to knowing more about this thoroughly confusing and complex condition(s?).

We all have to adapt every time there’s new knowledge. And this means that whether one is more comfortable with pre-1994 definitions of autism, or with the 2006 definitions, the terminology will change further—many times over. Whatever words we’re using now will change. And because we are experiencing such an outpouring of knowledge and public education (thanks in part to both our organizations), we often get the idea that we’re close to finding out all that we are meant to know. Again, I’m no clinician, but my gut tells me that we’ve made a quantum leap from knowing, say, 13% of what we’re destined to discover about the autism spectrum, to 17%. Now, pretending that my uneducated and figurative “gut” numbers are true; that truly is a huge jump to be done in so short a time span. But the end result is still 17% out of 100%. We have far to go. We are all going to have to be very flexible even if—given the suffering that everyone on all ends of the spectrum is enduring—we don’t want to be. 

Parallel stories of coping, meanwhile, will help.

Thank you all for listening.

For more information on GRASP, please go to www.grasp.org. Michael John Carley can be reached at mjcarley@grasp.org

Source: http://web.archive.org/web/20080414094449/http://www.grasp.org/media/ArtUnCarley.doc


Response to Articles of Understanding by Mel Bags

Disability activist, Mel Baggs, posted a video response to the “Articles of Understanding” on their YouTube channel on October 28, 2006.


silentmiaow

This is a reply to the “articles of understanding” exchanged between Autism Speaks and GRASP, in which both sides pretty much ignored the existence of autistic self-advocates who do not speak and do not want to be cured, reducing us to old cliches.

It primarily addresses the assumptions made by Alison Tepper Singer in her article and some of her other work.


Autism Movement Seeks Acceptance, Not Cures

Michael John Carley is trying to change your image of autism. He has autism and he’s happy just the way he is. He thinks that might surprise you.

Carley didn’t know he was autistic until he was 36 years old. The diagnosis changed everything he’d ever understood about himself.

“It was biblical,” Carley says, with a laugh, of getting the diagnosis. “Of course, you say to yourself, ‘Nah that can’t be. It’s garbage.’ “


Circle Wars: Reshaping the Typical Autism Essay

Abstract

This piece investigates “typical autism essays” and their rhetorical commonplaces, their largely neurotypical discourse conventions. In the field of rhetoric and composition, circular metaphors in discourse community theory resemble popular representations of autism as a low-functioning/high-functioning binary. Each field-specific conversation attempts to define groups of people (student writers, autistics) as though there are hard and fast boundaries to one’s identity. I posit that typical autism essays obscure issues of power as well as their neurotypically-defined genre conventions, effectively denying autistic self-advocates a place in the conversations that concern them.

Michael John Carley of GRASP forcibly disagreed with previous talk about a health crisis, averring that we are in a “services crisis.” He talked about the need to focus on “where our greatest need lies … in the present” rather than research, which focuses on the future. He said that most autism families do not have the proper “…services, interventions, and educations available to their children,” and described autistic adults as “starved for housing, therapies, and employment opportunities.” He emphasized the need to understand “the fiscal cost of notproviding services.” He also pleaded with those listening to remember that most autistic people can “read what’s being written about them, and hear what’s being said about them.” As he said this, many audience members shook their heads in disagreement. We recommend they read TPGA’s essay on The Least Dangerous Assumption.



Note/Warning:

Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. 

ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.

The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t workIn study after repeated study: ABA (conversion therapy) doesn’t work. 

What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.


The ‘cure’ for Autistics not born yet is the prevention of birth. 

The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome. 

This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.


Fact: You can’t cure Autistics from being Autistic.

Fact: You can’t recover an Autistic from being Autistic.

Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.



Explore Autistic History

Explore Autistic History

3 Replies to “Deconstruction | Autism Speaks & GRASP to Exchange “Articles of Understanding””

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