When Should I Be Concerned?

Those who have sent comments to the Interagency Autism Coordinating Committee (IACC) on its draft strategic plan will recognize the title of this post as the heading of the first section of the draft plan. (If you have not yet written a comment, they're due today. Follow this link to find a quick submission form with suggested talking points for last-minute responses.)

In the draft plan, the question "When should I be concerned?" refers to the identification of autism spectrum conditions. Although the main issue seems to be early childhood screening and when a child should be evaluated, there is also some discussion of identifying autism in older children and diverse populations.

Given the lack of clear definitions and the subjectivity of the current diagnostic criteria, this is indeed an area where more research would be useful. However, I believe that the IACC has not gone nearly far enough in questioning how our society identifies autistic people and that we need to reframe the issue from a much broader perspective.

What is actually being asked here, when we strip away all of the medical terminology, is a sociological question: At what point does our culture determine that a child (or adult) is not part of the dominant "normal" caste and should instead be classified as belonging to a subgroup (to which the autism label has been applied in recent years) of the stigmatized "abnormal" minority?

I'm reminded of the debates that took place in South Africa shortly before the apartheid system collapsed. At that time, the South African population was divided by law into whites, blacks, Asians, and people of mixed race. There was quite a lot of discussion about how to determine who belonged to what category, in the small percentage of cases where it wasn't immediately clear. As with autism in today's world, the resulting classifications affected what schools a child might attend, what sort of education (or lack thereof) he would get, and what his career prospects were likely to be.

Given the profound negative consequences of being identified as autistic (or any other neurological minority) in a society that sacrifices more of its children every year on the altar of normality, it is no wonder that so many parents are "concerned" when they notice that their children may have autistic traits. From that point of view, the IACC's question reasonably reflects the actual experience of many parents. It is also not surprising to find such a strong focus on teaching children how to pass as non-autistic, through behavioral programs or other means.

While it is only to be expected under the circumstances, this is not where our concern should be placed. Rather, we should have been concerned, a long time ago, about the social fiction of the "normal" brain and how it affects a human population that is—and always has been—extremely diverse in its cognitive and behavioral patterns. At a time when an increasingly complex economy needs large numbers of workers with highly specialized minds and abilities, our society perversely insists that there can be only one acceptable type of brain, thus forcing millions of people to hide their differences or suffer a lifetime of exclusion. It's past time to end our own apartheid system.


Edit: Here's a link to a powerful video about segregation of autistic students in American public schools.

ADA Amendments Act Signed

On Thursday, President Bush signed the ADA Amendments Act, which will take effect January 1, 2009. The legislation, which greatly broadens protection against employment discrimination for workers who have disabilities or who are regarded as having disabilities, passed the Senate unanimously and the House by voice vote. Disability rights organizations negotiated with the business community for several months on the details of the act and eventually reached an agreement that had widespread support.

The definition of disability in the ADA, which had been narrowed by a series of extremely restrictive Supreme Court decisions until it protected very few workers, now specifically provides that "mitigating measures" such as medication or assistive technology are not to be considered in determining whether a person has a disability. Anyone can now assert a claim of discrimination based on being regarded as disabled, without having to prove that he or she actually has a disability. In addition, the courts have been directed to interpret the legislation liberally in favor of workers.

Although the passage of the ADA Amendments Act received very little national media coverage, it is a very significant piece of civil rights legislation that will provide meaningful recourse for Americans confronting disability discrimination in the workplace.

That Wheelchair Analogy

You know, the one that claims autistic self-advocates exist only because the Internet enabled us to interact with others and that, without our computers, we would have very little ability to express our views. Mike Stanton used this analogy in a recent presentation about the Autism Hub, which he posted on his blog, stating as follows:


Computers have been described as “wheelchairs for autistics.” The analogy holds good. Computer technology and the internet have empowered many who would find normal face to face interactions extremely difficult. They can build web sites, write blogs and create videos.


It's a fair observation that many (although not all) autistic self-advocates are more comfortable using the Internet than communicating face to face. And the Internet certainly has made it much easier to share opinions and to build cultures and communities worldwide. However, it does not logically follow from these two broad factual premises that autistic people inevitably would have extreme difficulty advocating without computers.

The wheelchair analogy assumes that face to face communication is the "normal" way of interacting with people and that the written word is a less efficient substitute used by those who lack "normal" communication abilities. With all due respect, that hasn't been true since Gutenberg invented the printing press. The written word—whether or not it is on a computer—holds tremendous power to challenge entrenched social assumptions and to bring about far-reaching change.

Why is it, then, that autistic self-advocates are only just now becoming noticed in our society? I believe this can be attributed to a convergence of several changes and cultural shifts in recent years. The definition of autism has been greatly broadened, thus increasing the number of people identified as autistic. As a consequence, we have more potential advocates and more public awareness of autism than ever before. Disability rights activism has created a more receptive climate for autistic self-advocacy. And more generally, the views and concerns of minority groups are not routinely ignored to the extent they once were.

Not all that long ago, if a person did not have "normal" speech and body language, or did not belong to the "right" ethnic or religious group, or was not male and heterosexual and a property owner, it was simply taken for granted that the person had nothing worthwhile to say. These prejudices still exist, of course, but not as strongly as in the past.

Autistic people have been making coherent, intelligent, meaningful statements—both in spoken words and in writing—about our world and the value of human diversity, for many years, even before there was a separate and distinct category of "autistic people."

Society just wasn't listening.

Reminder: IACC Comments Due

Today is the last day to submit comments to the Services Subcommittee of the Inter-Agency Autism Coordinating Committee on issues relating to services for the autistic population. The official notice can be found at http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html, and comments should be sent to iaccservices@mail.nih.gov.

The fact that the committee is requesting comments on services is a direct consequence of all the pressure it has gotten from neurodiversity activists. When it was first established in 2006, the IACC was basically Curebie Central, focused entirely on cure and prevention research. It is now showing much more willingness to pay attention to the needs and concerns of autistic people. We need to take advantage of this opportunity and get as many comments submitted as we reasonably can.

The Autistic Self Advocacy Network has prepared a list of talking points to help with putting together last-minute comments on service-related issues. Responses should be limited to one page and should contain NOT-MH-08-016 in the subject line.

John McCain Has Disability Activists Arrested

On Monday afternoon, September 15th, police arrested several people from the disability advocacy organization ADAPT at the Arlington campaign office of Republican presidential candidate John McCain when they protested the campaign's refusal to look at the ADAPT platform for affordable, accessible housing. The day's events are described on the ADAPT website:


After setting up a tent city at HUD headquarters just after 4 a.m., ADAPT sent 100 activists to the Democratic National Committee (DNC) offices in Washington, D.C., and another hundred to a Sen. John McCain campaign office in Arlington, VA. All three entities were presented with the ADAPT platform for affordable, accessible housing.

"The DNC was cordial, and they accepted our housing platform, as well as our invitation to visit 'DUH City,' which is HUD spelled backwards," said octogenarian Barb Toomer, ADAPT organizer from Utah. "The career HUD staff that met with ADAPT told our people they had no authority to make decisions and had to wait for the administration or administrative appointees to make any decisions, so the meeting felt like a waste of time. Sen. John McCain's campaign staff not only refused to even look at our housing platform, they had eleven of us arrested by police who caused injuries to at least one arrestee."

ADAPT's housing platform points to America's longstanding and still growing crisis in the availability of affordable, accessible integrated housing. Many people with disabilities live on benefits that are only 18% of the median income, a full 25% below the poverty level, and an amount that is less than the national average rent for a studio/efficiency apartment.


Local Arlington reporter Bruce Leshan of WUSA Channel 9 reported on the arrests in a story entitled Disabled Activists Arrested At Arlington McCain HQ. He wrote:


Sen. McCain opposes a Senate bill designed to change a system that disabled advocates say pushes them to spend the rest of their lives in an institution...

"We don't want no houses like he has. Seven houses. We don't need anything fancy. We're asking for an apartment," said protestor Cassie James.

The activists say Medicaid WILL pay for their care in a nursing home. But WON'T pay for them to have a health aide at home. "All we want to do is level the playing field so people will have a choice," said activist Rick Knight.

Sen. McCain says government living assistance for the disabled should NOT mean "perpetual confinement to an institution." But he also says the bill supported by the activists is too expensive. "The Community Choice Act is not a piece of legislation that I support," Sen. McCain told a Denver forum.

Bobby Coward says that's not good enough. He's a Persian Gulf war vet left a quadriplegic by a car accident. "If I don't get an attendant, I can't get out of the house, so I'm laying in bed."


Shame on you, John McCain, for playing up your claim to fame as a wounded war hero, while not even bothering to look at the needs of injured veterans and others with disabilities for housing assistance and services!


Update, Sept. 20: Here's a powerful new video that illustrates the McCain/Palin ticket's attitudes toward people with disabilities.

Open Letter to a Publisher

Dear Unnamed Publisher:

One of your marketing people sent me an e-mail recently, offering to give me an advance copy of a "true story of autism" for my review.

I ought to have known better than to click on the "more info" link. After all, insanity as defined by Albert Einstein consists of doing the same thing over and over again, while expecting different results. And I've seen enough of the publishing industry's exploitation of autism so that the results of clicking on that link were all too predictable. Still, I had a tiny speck of hope that perhaps there might be something different this time—something other than the usual melodramatic litany of an agonizing disease with hellish symptoms, a puzzling and ever-worsening medical mystery, et cetera. That hope was, of course, promptly dashed.

No doubt stories like that are quite profitable for your company. You wouldn't be printing them otherwise. And of course, your readers would have no interest in a true story of an autistic person who was just as happy with his or her life as anyone else. They'd die of boredom reading about the very ordinary day I had yesterday: After work, I watered my ordinary suburban lawn for a few hours, pulled some weeds, bought a new pair of oven mitts, cooked dinner, and watched the first half of Monday Night Football.

Your shareholders probably would toss you out on your ear if you ever jeopardized their profits by considering the social implications of what you print. Like any other company, you're in business to make money, regardless of who gets trampled in the process. Why should you care if an autistic child gets excluded from school because the administrators, caught up in mass hysteria, are afraid to have him in their classrooms? It's none of your concern, is it, when an autistic job applicant is rejected because the hiring manager assumes that she is a tragic sufferer with hellish symptoms and would surely cost too much to accommodate? What does it matter to you if a landlord evicts an autistic tenant because of unfounded prejudices?

I'm sure that in a few more years, when the market for autism horror stories has been saturated, you'll cheerfully move on to whatever the next fad may be. You won't even give a moment's thought to the millions of people worldwide who will have to spend the rest of their lives struggling against the prejudices that you took part in creating. In fact, you probably stopped reading this letter several paragraphs ago because you decided that your time could be spent more profitably. There's always someone else to exploit, after all.

Abortion, Disability Rights, John McCain, and the Supreme Court

Since John McCain's recent pick of a running mate, Sarah Palin, who holds very strong pro-life views and has an infant son with Down Syndrome, I've seen a few people in the autistic community arguing that the Republican ticket would be the best choice for us. A prenatal test for autism could be only a few years away, this argument goes, and the only way to save our people from eugenic extermination is to vote Republican so that McCain can appoint more conservatives to the Supreme Court and put the abortionists out of business before they start killing off autistic babies.

Although this argument packs a strong emotional punch, it doesn't reflect what would actually happen under a Republican administration with a conservative Supreme Court. First of all, even if the court were to decide that there was no constitutional right to abortion, that in itself would not outlaw abortion. It would simply allow the states to legislate on abortion as they saw fit. In liberal states such as California and New York, abortion would remain legal. In the most conservative states, abortion would be promptly banned; but these states have very few abortion clinics anyway, so the only difference would be that their residents, most of whom already have to go out of town to get an abortion, would have to drive a few more hours to get to a clinic in another state or in Canada. The overall number of abortions in the United States would not be significantly reduced.

What's more, even the strictest anti-abortion laws would not ban prenatal tests, most of which have legitimate medical purposes. A prenatal diagnosis of Down Syndrome, for instance, can result in better medical care for the fetus because the doctor can consult with specialists during the pregnancy. If a specialist determines that the baby will need heart surgery immediately after birth, which sometimes happens, there will be a surgical team standing by. Although autistic infants do not have similar medical issues, parent groups reasonably could argue that a prenatal autism diagnosis would help families to get on waiting lists for early childhood enrichment and therapy programs. I think it's highly unlikely that any state legislators would risk their wrath by proposing to outlaw prenatal testing for autism.

That leaves us with the question: If we can't put a stop to selective abortion by legislating it out of existence, how can we protect the next generation of autistic children from being routinely aborted? To find the answer, I believe we need to look at parents' reasons for choosing abortion when they are told their child will have a disability. Most parents who opt to abort are not selfish monsters who just don't want to be bothered with the child; rather, they agonize over the decision and then conclude that abortion is for the best because the child likely would never have an independent and fulfilling life.

And they're not just relying on outdated prejudices and stereotypes in thinking so. It is a fact that people with disabilities face many barriers to independent living in today's society—lack of community services and housing options, in particular, and widespread employment discrimination. These are issues that can be addressed effectively through the political process. When we remove the barriers and build a society in which all people are empowered to live as equal participants in the community, regardless of disability, the rationale for selective abortion disappears.

Therefore, when choosing the presidential candidate whose policies are most likely to bring about an America in which autistic children and others with disabilities are not routinely aborted, we need to consider the candidates' views on disability rights issues and vote for the one who will act to remove barriers to independent living.

That candidate definitely is not John McCain. As I mentioned in a recent post, McCain opposes the Community Choice Act, which would provide funding for community services and housing for Medicaid recipients who would otherwise be forced to live in nursing homes or other institutional facilities. On the employment discrimination issue, let's talk about the Supreme Court again for a moment. The House of Representatives recently passed, and the Senate is now considering, amendments to the Americans with Disabilities Act. These amendments became necessary to restore the act's original protections after they were significantly eroded by a series of Supreme Court decisions—authored by those conservative justices Senator McCain so often praises.

When Senator Tom Harkin, a longtime supporter of disability rights, challenged McCain on this point at a community forum in July, McCain asserted that the decisions had nothing to do with the conservatism of their authors, but that Congress was to blame for not being specific enough in drafting the ADA. Uh-huh. Apparently, McCain would have us believe that his pals on the Supreme Court just didn't notice that the ADA was supposed to be an anti-discrimination law. Well, I'm not buying it—and I'm not voting to give McCain a chance to appoint even more conservatives to the Supreme Court so that they can take another whack at our disability rights laws, either.

Maxine Aston's Cassandra Disorder Scam

Have you ever thought about how much fun it would be to invent a bogus disorder and to rake in the money from persuading gullible people that they were in dire need of your expertise and therapy? No, me neither. Most of us are ethical enough so that we would never consider such a thing. But Maxine Aston, notorious inventor of "Cassandra Affective Deprivation Disorder," evidently has no such qualms.

She was working as a marriage and relationship counselor in the late 1990s when she became aware of the new autism spectrum diagnostic categories and started thinking about how she could exploit that opportunity. There was just one little obstacle in the way of her scheming, which was her lack of autism-related experience. So she cooked up a clever strategy: Provide services to couples in which one partner had an Asperger diagnosis, and then leverage that experience into book contracts and a skillfully crafted public image as an Asperger expert.

Unfortunately, she didn't stop there. She also identified another potentially lucrative market: Women who recently had divorced or were divorcing Aspie husbands, and who would lap up a sympathetic counselor's assurances that they were not to blame for the divorce because autistic men were neurologically defective and unfit for marriage. To cover this blatantly unethical prejudice with a veneer of respectability, Aston proceeded to create "Cassandra Affective Deprivation Disorder," which she defined as a depressive condition caused by being in a relationship with an autistic person.

This so-called "disorder" has no medical or scientific legitimacy whatsoever. No professional association has recognized it, and there are no peer-reviewed studies of it. Aston lifted the "symptoms" straight out of the diagnostic criteria for Seasonal Affective Disorder. Although she maintains what she calls a research page on her website (maxineaston.co.uk/research), it contains only simple questionnaires that show no indication of compliance with institutional review procedures. Aston clearly lacks experience conducting formal research studies in an academic setting and is grossly unqualified to hold herself out as a psychological scientist.

Her shameless peddling of pseudoscientific rubbish and fleecing of emotionally vulnerable divorcees by purporting to diagnose them with a nonexistent disorder would be bad enough in itself, but that's not all. Aston has descended even farther into the depths of the ethical abyss through her long-term association with the Massachusetts hate group FAAAS, which repeatedly has urged social workers and family court judges to discriminate against autistic parents in child custody proceedings. Aston had full knowledge of this despicable agenda from the start, and she proudly touts her association with FAAAS on her website.

Although she asserts that as a member of the British Association of Counselling and Psychotherapy, she abides by its code of ethics and professional conduct, a quick look at BACP's ethical code suggests otherwise. Knowingly inciting disability prejudice and discrimination clearly violates BACP's prohibition against bias:


"Practitioners should not allow their professional relationships with clients to be prejudiced by any personal views they may hold about lifestyle, gender, age, disability, race, sexual orientation, beliefs or culture."


Tossing together a few half-baked questionnaires, which was apparently done with complete disregard for the institutional review process and the rights of the study subjects, can hardly be said to meet BACP's requirement of conducting sound research:


"All research should be undertaken with rigorous attentiveness to the quality and integrity both of the research itself and of the dissemination of the results of the research."


And I won't even bother to list all the ethical rules violated by concocting and profiting from a phony disorder, as that might take all day. Frankly, I find it quite astounding that Maxine Aston hasn't yet been brought up on unprofessional conduct charges.