Initial Statement: “The Problem”
The Centers for Disease Control (CDC) cite a more current estimate that 1 out of every 110 people have either Autism, AS, or Pervasive Developmental Disorder—Not Otherwise Specified (PDD-NOS). Most of these individuals have untapped talents and abilities that could truly benefit society. But because of the stigma attached to these diagnoses, many of them feel unwanted, are constantly misunderstood, and are often perceived as useless burdens. Consequently, their self-esteem can be immensely low, their frustration level immensely high, and too frequently this leads to anxiety, severe depression, and even suicide. Few people in the general public really understand what living on the autism spectrum is like, and acceptance for the harmless (and often marvelous) behavioral and intellectual differences is therefore quite low. This leads to ridicule, prejudice, and discrimination.
Since the inclusion of Asperger Syndrome as a legitimate diagnosis within the DSM-IV in 1994, the number of people diagnosed on the autism spectrum has skyrocketed—Adults especially are being diagnosed in huge numbers as society plays “catch-up.” As any educator, researcher, or clinical professional will attest: The school boards are overwhelmed, the housing authorities are swamped, and the clinical world is scrambling to keep up with the rapidly changing definitions and terminology. And yet, despite this bombardment on society, the social welfare systems simply are not responding to the massive rise in this population, and the neurotypical world still struggles to understand the relative harmlessness of the behavioral differences in thpse more able to mirror greater society. Whatever inadequate services or community lack of acceptance currently exists for children on the spectrum . . . this is a comparative heaven compared with what is available to adults.
There is therefore a strong need for advocacy and positive self-esteem. Adults on the spectrum still have little comparative say in how they are viewed, or treated. This only makes the road to self-empowerment harder.
. . . or you could call this “the guide to autistic political-correctness.” We know that sounds awful, but the truth is that words are powerful. And this community has lifetimes to shed of negative expectations and feelings of second-class citizenship. Using kinder, more appropriate language will help enormously. The following is a "beginner's guide" . . .
Disorder (We know that not liking this word is
a stretch, but anything with the prefix of “dis-“ is bound to have a negative effect
on people’s psyches)
The above two aren’t just hurtful
for those on the spectrum,
they’re medically inaccurate as well
For a much more in-depth exploration of the arguments involved,
the stigma attached to these words, or testaments from others' personal experiences (that will illustrate the importance of
words in our lives), please visit our "Articles" page
GRASP has acquired a reputation for being anti-pharmaceutical. Not true. However, we are comfortable with this misrepresentation.
What has contributed to this reputation is our adamant objection to some of the tactics employed by the companies that manufacture these drugs. Often, for example, research programs are funded by pharmaceutical companies. And our objection to this stems from the idea that research is so much about what is referred to as “the ‘no’ principle;” that being, that you test to see what doesn’t work. Also, when so much money is invested in a particular drug, inevitably the results are made more positive than they deserve because of our inability to admit that that which we invested so much in, has faults (ask anyone that pays $30,000 for a car, what they think of the car, and that result will almost always differ than if they had received the car for free). Side effects especially, get talked down in what can only be described as an inherent investigative bias.
Also, many times these programs feel forced by their backers to unnecessarily push unwanted drugs upon members of our community—People who, if they re in need of the return services provided by the research institution (usually some type of therapy), most likely have a hard time saying no (to taking the drugs) even when they want to.
We also object to the quick fix that pharmaceuticals often present themselves as. Alternative medicine is a field full of quackery, absolutely, but simple notions of diet, exercise, or a change in environment could likely eradicate the need for a high percentage of the pharmaceuticals our community takes. Because of our busy lives, folks sadly find it easier to take a pill than commit to such changes.
And lastly, our community of adults—especially those diagnosed late in life—has undergone too many horrific experiences of misprescribed pharmaceuticals throughout their lives for us to be able to believe that; just because AS is now in the DSM, that this suddenly guarantees that what is currently being prescribed is appropriate.
That said, pharmaceuticals in the right situation can iron out chemical imbalances or acquired traumas such as anxiety or stress overloads that certain individuals may be living with. We don’t want pharmaceuticals to go away by any means. They’ve cured a plethora of previously-fatal ailments. They may someday cure AIDS, or even cancer. We just want those reaping the profits to be truckloads more ethical in how they approach the testing, pricing, and marketing of their product.
A past facilitator for GRASP once said something that I found remarkable. We were in a parking lot, having finished up a meeting, when he passionately exclaimed, “I don’t care about politics. Our members don’t come to meetings because they want to be a part of a movement. They come because they want jobs and girlfriends.”
This past facilitator was right, and yet he was dead wrong. Most people that attend GRASP meetings do so because they want work-related purpose and greater intimacy in their lives. But in order to pave the way for more behaviorally-permissive workplaces, and in order to change how unattractive or attractive the characteristics of AS are perceived to be by greater society, engaging in the politics of the autism world are a grim necessity. Our failure to see the subtle, yet real connection between these intimidating, heated arguments; and the low self-esteem suffered by many people on the spectrum—will have negative long-term ramifications.
Now . . . when we think of “the politics of the autism world,” are we then thinking about:
• Bills to increase government funding of autism research?
• Legislation that will deny insurance companies the ability to refuse coverage to someone because of their diagnosis?
• Advocating that additional schools be built?
• Advocating for services to be increased?
No. These issues are probably the most important that exist, but they’re causes that get universal approval from the entire autism community. They amount to a simple, though difficult fight with government over money.
The problems—the issues that threaten the autism community’s sense of certainty and unity—lie in four debates that are raging within:
1. The word “cure.” There is no clearer dividing line that measures a person’s place in the politics of the autism world than through their reaction to this word. Adults on the spectrum universally seem to dislike the word “cure.” But many researchers, parents and clinicians find it appropriate, and use it.
2. The vaccine debate—whether or not a generation (or generations) of children have become autistic because of tainted childhood immunizations.
3. The use of “aversives”, i.e. to what degree are institutions and schools allowed to potentially hurt people on the spectrum in order to successfully restrain them.
4. What existing, available money should be spent on.
Many of these debates revolve around:
• whether the autism spectrum is one vastly complex diagnosis (as GRASP believes)
• whether it is several different diagnoses, and
• whether or not the condition is genetic (as GRASP believes)
These debates also tend to overlap. For instance, if one believes that autism is genetic, then it couldn’t have been caused by vaccines (though it could have been exacerbated by them) because you can’t acquire something that is genetic—You’re born with it and you will die with it. But if autism wasn’t genetic, and if it was something you “picked up,” than it could conceivably be “cured.” Furthermore, if you believe that autism is a horrible diagnosis, and that AS is a separate diagnosis that presents challenges, though not like autism, than you could conceivably wish for autistics to be cured and AS folk to simply be provided with better supports. Yet to believe that you’d have to first find a proven line in the sand that separates AS and autism . . .
1. The “Cure” Debate
The basic premise is this: Should people on the autism spectrum want to be cured, or should they want to be better accommodated and accepted for who they are? And, is it even medically possible to cure someone of their autism?
In 2006, GRASP and an organization called Autism Speaks* made a unique exchange. Autism Speaks wrote an article that was distributed to GRASP’s audience outlining why they use the word “cure.” And GRASP simultaneously wrote an article to the audience of Autism Speaks as to why GRASP objects to the word. The exchange of articles was not meant to be a debate, with a declared winner and loser. Instead, it was intended to cross the bridge, start dialogue, have each side hear the other, and put a human face on the rhetoric. The aim was to soften hearts rather than change minds.
*Autism Speaks was started in 2005 by NBC Chairman Bob Wright and his wife, Suzanne. In its first year alone it raised more money than all the other autism organizations put together and multiplied times five. They quickly merged the National Association of Autism Research (NAAR) and Cure Autism Now (CAN) into Autism Speaks, Inc. within two years.
The articles can be downloaded by going to GRASP’s Articles page.
2. The Vaccine Debate
Citing the increase in the number of diagnoses from 1 in 1,000 (before 1994) to the current prevalence numbers of 1 in 150, many people believe that excessive mercury, used in a vaccine preservative called Thimerasol, caused autism in multitudes of children. Furthermore, these (mostly parent) activists accuse the government of covering these crimes up in an effort to shield the pharmaceutical industry from lawsuits that would threaten to bankrupt them. In books like David Kirby’s Evidence of Harm, proponents of these vaccine-causes-autism theories cite secret meeting of “Big Pharm” executives*, and strange provisions inserted into the Homeland Security Act as proof of wrongdoing.
* representatives of various pharmaceutical companies.
However, many others, GRASP included, see the rise in numbers as indicative of the changing definitions that started in 1994 when AS was first included in the DSM-IV. They believe that this new edition opened up the possibility for diagnosis to hundreds of thousands more Americans (myself included) that never would have been thought prior to be on the autism spectrum. The increase in numbers, we feel, is also a natural cause of more public awareness. When people are more educated at knowing what to look for, they can identify it better. As word spreads about AS, “aging, bachelor Uncle Fred” (to cite just one stereotype) is suddenly seen in a new light.
That’s the gist of it. And obviously, if the vaccine theories prove true, the legal shockwaves will dramatically change the healthcare world, for better or for worse, into an industry beyond our power of recognition. But what has dwarfed these doomsday scenarios is the vitriolic nature in which the argument has descended. The shameful tactics, hurtful statements and outright mismanagement conducted by both sides has made the “cure” debate look like a friendly disagreement by comparison.
Vaccine-theorists were investing most of their last hopes on the new autism prevalence numbers, which the CDC finally released in February, 2007. The expectation was that since Thimerasol had largely been removed, that the prevalence rates would drop. However, the frequency rates —from 1 in 166 to 1 in 150—did not decline. They instead rose (and rose again in 2010 to 1 in 110). At the time of writing this, the hope is that these new figures were the beginning of the end to this tragic and wasteful debate.
3. The Debate Over the Use of Aversives
The definition of “Aversives” gets a little complicated. The word primarily refers to undefined yet plural “punishments.” It does not point to one particular form of punishment, or even a set of punishments. Instead, Aversives encompass any consequence or method that is meant to communicate disapproval. By populist definition, jail time is an aversive, as is a spanking, extra homework, or being denied dessert. But individuals diagnosed with more severe forms of psychological as well as neurological conditions are vulnerable to aversives such as forcibly being tied down to a bed, or being shut away in an empty room for a determined period of time, and worse. This isn’t Kafka. This is legal. Any person living in a residential treatment center, and anyone attending a public school special education program are usually susceptible to court-permitted aversives. But what aversives are permitted are determined by each state. And the arguments about aversives don’t just center on whether “Kicking” should be allowed or not in Iowa, or whether “withholding sleep” should be allowed or not in California. There are also arguments regarding:
• Whether more than one aversive be applied at the same time
• Whether an aversive be applied immediately, or whether certain permissions have to be obtained first—and how many people must sign off on the aversive before it can be implemented
• What level of supervision, if any, is required before an aversive may be applied?
• What training or education must be held by the person applying (or mandating) the aversive?
At one extreme end of the aversives debate is The Judge Rothenberg Center in Massachusetts, a residential school for severely self-injurious or aggressive young people. The Judge Rothenberg Center’s head, Dr. Mathew Israel, has long made himself somewhat of a name as the king of aversives, for Israel uses aversives—especially electric shocks—seemingly more than anyone, and defends their use rigorously. Students under his care, for instance, must always wear a device that allows a staff member to shock them if they exhibit a behavior that Rothenberg Center supervisors want the student to stop. *
* “School of Shock: Inside a school where mentally disturbed students are jolted into good behavior”, by Jarrett Murphy. Village Voice. October 10th, 2006
To someone new to the subject of aversives, this sounds horrible, and one wonders why the instigators aren’t subject to the same laws as everyone else. After all, were we to intentionally commit bodily harm to someone without the recipient’s consent, we’d probably end up in jail. But The Rothenberg Center has many parents that swear by their program, stating that it stopped many children from banging their heads until they’d killed themselves. Furthermore, many states (such as GRASP’s home state of New York) ship lots of their behaviorally-challenged students to the Rothenberg Center at an expensive cost to taxpayers of something like $50,000 per child. Many lawsuits have been filed to shut the school down, actions brought by other parents of former students, who liken the school’s methods to torture. The lawsuits have had little impact due to the testimony and loyalty of supportive parents that swear by the Rothenberg Center, but also because the institution has very strong lawyers at their disposal.
Every state has stories to tell. In the spring and summer of 2006, New York State’s Regents, the governing body on aversive policies for minors under VESID (Vocational and Educational Services for Individuals with Disabilities) took a vote that at face value was intended to reduce the aversives that could legally be applied to NY State residents living both in NY and elsewhere (including at the Rothenberg Center). Many parent advocates had expressed dismay that New York was still outsourcing kids to places like the Rothenberg Center, and so they appreciated that the Regents seemed to be listening. However, when the proposed changes in the legislature came out, these parent advocates were further outraged after one particular passage was caught, a passage that the Regents would have likely preferred to remain unnoticed. The offending paragraph in the literature came from Section 1, Subsection (b) Paragraph 2 of http://www.regents.nysed.gov/.
As used in this section, aversive behavioral intervention means:
(i) application of noxious, painful, intrusive stimuli or activities intended to induce pain such as electric skin shock, ice applications, hitting, slapping, pinching, kicking, hurling, strangling, shoving, deep muscle squeezes or other similar stimuli;
(ii) any form of noxious, painful or intrusive spray or inhalant;
(iii) withholding sleep, shelter, bedding, bathroom facilities or clothing;
(iv) contingent food programs that include withholding or limiting food or drink or essential nutrition or hydration as part of meal times or intentionally altering staple food or drink in order to make it distasteful;
(v) movement limitation used as a punishment, including but not limited to helmets and mechanical restraint devices;
(vi) the placement of a child unsupervised or unobserved in a room from which the student cannot exit without assistance; or
(vii) other stimuli or actions similar to the interventions described in subparagraphs (i) through (vi) of this paragraph."
Words like “strangling” clearly struck a chord, and the outcry was significant—People assumed that the Regents were really voting to legalize such a variety of unthinkable methods, and the mere possibility that these techniques should even be discussed was understandably a source of outrage.
However, upon further investigation, the only advancements being proposed to the existing legislature were that no one could impose more than one of these aversives at a given time. So while you could still kick someone, you couldn’t strangle them at the same time.
The legislature passed, and so the Regents were able to say that they had reduced the use of aversives. But that begged an even more troubling question: Did this mean that methods like “strangling” were already legal? For how else could we be discussing their singular or simultaneous implementation? Sadly, the answer was yes. The litany of possible punishments listed in that subsection were, and always had been, available for use.
And yet, no matter how awful this sounds, when you take someone out of that school, you have to put them somewhere. And the options are tragically few for those frustrated and confused individuals that lash out. It is they who are always left out; partly because of the cost of their care, and partly because of how easy it is to demonize them for their behavior and consider them lost causes. We can criticize the Rothenberg Center all we like, but critics have little to offer by way of alternatives—to the degree in which they are needed, they haven’t been built yet.
4. Where Existing Money Should Be Spent
The government, let’s say, has “X” amount of dollars to spend on the autism world. Well, for starters, given the prevalence rates of autism vs. other conditions (that our government funds research and services for), autism is woefully underfunded by comparison. So “X” will be small. But there is some money out there. And it could theoretically be spent in four different areas:
At the time of this writing, no reliable statistics were available as to how many dollars are given to research, how many to schools…etc. The Combating Autism Act of 2006 had just been passed, and the Appropriations Committee was allocating where to spend this Federal money (slightly over 100 million dollars, down from the originally approved 168-172 million thanks to President Bush’s cuts just two months after the legislation passed). But in general, schools, and services are subject to state education and disability budgets, not “X;” outreach and advocacy organizations are privately funded, and so this leaves research as perhaps the only federally-funded item.
Research is wonderful, and by that I mean all autism research. But there are different types of autism research. And currently there is a highly disproportionate amount of money going towards bio-medical research; research; done in labs, using brain scans, serotonin levels…etc. as opposed to data-based research that might track how many people in this country are out of work, or need housing and services.
Most peer activists are wary of bio-medical research. Often it reeks of trying to find that arguably-possible “cure.” But also, much like how we test for Down Syndrome in pregnancies, this type of research sometimes feels geared towards pre-natally being able to test to see if a newborn will have autism or not—The supposed benefit being that the parents then have the option of terminating the pregnancy. This carries huge ethical implications.
Where people fall in the “cure” debate will greatly influence their feelings as to what kind of research they would like to see done. Non-profit research groups like OAR, the Organization for Autism Research, in contrast to the bio-med research organizations, focus strictly on helping the living. And if 3 million Americans have an autism spectrum diagnosis, then we need to know who they are, and what their needs are. And OAR currently receives comparatively little federal funding.
So too will an autistic or AS child’s place on the spectrum dictate to their parents what types of schools they would like to see built. Some children can operate well in mainstream schools (or in inclusion programs within), some can operate in schools that enroll kids of varying neurological differences, and some kids need schools populated only by other children on the spectrum who are close to their same level of abilities.
And while in some cases it might generate a conflict of interest, it still seems sad that educational and outreach organizations, including GRASP, receive no federal funding. So long as the ability to criticize government wasn’t compromised, these are the groups that should be charged with spreading educational information, not national health agencies. Non-profits are better at mixing the messages with personal appeal (as most organizations are run by people with personal connections to autism) and unless of dubious origin, are generally more trusted by the general public.
Who Speaks for Whom?
Many arguments center around the non-verbal individual. If they can’t speak, who gets to speak for them? Is it autistic bloggers such as “Autism Diva,” or Michelle Dawson? Is it GRASP? Is it the Autism Society of America? Is it the families of challenged autistic children who run Autism Speaks? Because frankly, despite some of the polar opposite viewpoints held by these examples, all of us are doing exactly that.
When my son and I were diagnosed with AS in late 2000, 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. And the big picture is that we still know relatively very little about AS and/or autism, Discussing these issues even when they carry the potential to divide us all is really the correct, Darwinian road to be on. The problem has only been where the debates have become so divisive that they prevent people from banding together on the issues that they do agree on in order to advocate for them more effectively.
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 whatever the 2025 definitions will be, 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 all autism organizations), we often get the idea that we’re close to finding out all that we are meant to know. But we have far to go. Against our primal wishes, we are all going to have to be very flexible given the suffering that so many endure all over the spectrum; suffering that should not be described or presented as a sick, stupid, and useless competition about who is suffering more.