Saturday, April 15, 2006


At the midway point of Autism Awareness month I wanted to post this letter written by Catherine Maurice. Her books, "Let Me Hear Your Voice" and the "ME book" were the first two tomes about Autism I read. I will be forever grateful to Dr. McCallon for such excellent advice upon diagnosing Abby. Catherine Maurice's books gave me the tangible hope I needed to get this journey underway.
I am posting this letter as a reminder to everyone that Autism is not a "culture."
It is also not a death sentence. There is hope, always hope and recovery DOES happen. It happens around here everyday.

We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, where Jesus, who went before us, has entered on our behalf.
Hebrews 6:19-20

by Catherine Maurice
A parent, author, and editor of several books on autism and its treatments, Catherine Maurice responds to the letter of invitation for this special autism issue of Leadership Perspectives in Developmental Disabilities.
I have a doctorate in literary criticism, but it does not take an advanced degree to detect a certain level of skepticism in this letter of invitation. These questions seem rather biased against early intensive behavioral intervention (1) and the possibility of recovery from autism. Far from displaying any welcome or enthusiasm for either of these concepts, this letter seems to be inviting attack, from every possible angle.

Are there ethical issues associated with recovery?
What is the economic implication of wide scale recovery attempts?

Just substitute the word “cancer” for “autism” and any “lay person” could detect a slightly subversive note:

Are there ethical issues associated with recovery from cancer?
What is the economic implication of wide scale attempts to recover people from cancer?
It seems to me that these questions amount to little more than a call for ammunition against the rising demand for science-based, effective treatment, which at this moment in time happens to be anchored in the field of applied behavior analysis. Yes, aiming for and achieving recovery from autism is expensive. So is chemotherapy. So is a lifetime of state-supported custodial care. Why would we not attempt to recover anyone from cancer, or autism? No, we cannot guarantee cure or recovery for anyone, but is that sufficient reason to lower the bar? Do we start deciding how many people should have access to science-based treatments for cancer? Do we start deciding how many children should have access to ABA?(2)

Is the concept of recovery a useful term to use?
Is there data to substantiate recovery?

The very form of the questions implies that “recovery from autism” and the data supporting recoveries from autism are issues that are up for debate. The phrasing suggests that the correct answer to both questions is “No, of course not.” Again, think of the implications if we asked: “Is the concept of recovery from cancer a useful term to use?” It is only when we already hold an assumption that autism is forever that we question whether the term “recovery” is “a useful term.”(3) Perhaps a more neutrally phrased question could have been: “How can we define recovery from autism, and how do we know that it can occur?”

But let’s step back, and look at a more serious complication. What is problematic here is not only the implicit skepticism about recovery, but also the confusion, manifest in this letter and in much of the anti-behavioral backlash literature, between the goal of recovery, and the goal of bringing children effective treatment. We need to set both goals for our children, with the understanding that under our present system of knowledge, only some children will achieve the first goal, but all children with autism can and should be offered effective treatment. Furthermore, and again under that present system of knowledge, it is behavioral intervention that has published the most documented success in enabling children to learn. Whether or not recovery happens, behavioral intervention offers more concrete evidence of effectiveness in helping children to learn than any of the dozens of treatment options currently being touted as effective for autism.(4)

This letter uses a term, "recovery treatment procedure.” What is that? EIBI is not a “recovery treatment procedure” although it may have that effect on some children. All treatment should be designed to maximize a child’s learning potential, to bring him or her as far as we can. Is this letter implying that if you want to aim for recovery, you use EIBI (otherwise called “recovery treatment procedure”), and if you want to aim for something else, you use another kind of therapy? What other therapy would that be, and what data exist to support the effectiveness of that therapy?

No one I know has ever claimed that EIBI will produce recovery in all children. But we do know that intensive behavioral intervention can improve the prognosis for people with autism, and teach them higher levels of communication, social behavior, and independence. Undermining the notion of recovery and then calling early intensive behavioral intervention a “recovery treatment procedure” is another way of dismissing behavioral intervention – “those behaviorists promise recovery to everyone, and we know that can’t happen, so don’t bother with that nonsense.”

Is there evidence to imply that data suggesting recovery is an artifact of subject selection or other variables?

When I showed this question to my husband, he laughed and parodied the classic model of prejudicial questions: “When did you stop beating your wife?” Those of us who are veterans of the autism wars know that this question will not go away, no matter what data are presented, re-presented, or analyzed. It’s an easy attack, and one that is constantly repeated. If a child recovers from autism, the old guard is sure to offer one of three possible explanations.

1. He was very high functioning, and therefore “selected” for intensive treatment, apparently by people who have so little concern for ethics that they skew data any which way they can in order to claim success.
2. He was never autistic at all. (Sorry! We didn’t mean it!)
3. He was autistic, and still is autistic. Although he looks and acts recovered, he is actually a trained robot, conditioned to respond to certain stimuli - but, deep inside, still autistic.

If my own tone sounds impatient, I apologize. I used to be a lot nicer before I entered autism politics. But, after a dozen years, I no longer know what it will take to convince the people in power that the data are there, have been there for a while, and their job isto pay attention to the data. Moreover, the data do not “suggest” that early intensive ABA is effective in remediating many symptoms of autism, the data demonstrate that gains achieved through such intervention are real, and enduring.(5) There is data not only “suggesting” the possibility of recovery, but also validating it over time.(6) Why is this topic of early intensive behavioral intervention, its value, and its ability to produce recovery in at least some children still “hotly debated” at all? How many more decades will it take for the establishment to accept the evidence that already exists? It is astonishing to me that various special educators and psychologists keep calling for more data to substantiate the value of intensive behavioral intervention, and yet they themselves have produced no data to speak of that validate approaches such as play therapy, therapeutic nurseries, special education and psychotherapy.

When my children were diagnosed, it did not take long to discern that the data supporting early behavioral intervention far surpassed any empirical support for generic, “eclectic,” intervention, special education classrooms, therapeutic nurseries or the myriad fads and miracle cures that succeed each other. That data has only increased today. Do we really want to consign autistic children to a lifetime of sorting bottle caps, when we know now that many can learn more than we ever expected them to learn, if we intervene early enough, and care deeply enough to bring them science- based treatment models? With the field of applied behavior analysis producing study after study showing the value of behaviorally based teaching methods for people with autism, how much more debate do we have to engage in, as generations of autistic children founder?

Many parents (7) have become all too aware that special education programs, therapeutic nurseries, play therapy and each successive media-hyped new “breakthrough” for autism have for decades promised appropriate care for our children, and have delivered virtually nothing. Our children do not need parent substitutes. They don’t need special education that does not educate. Pseudoscientific “evidence,” notwithstanding, they do not need huge doses of vitamins forced into them. They need data driven, research-backed programs specifically tailored to their needs, their learning pace, their strengths and weaknesses. Behavioral intervention does not promise universal recovery. It does promise, if delivered by qualified providers, a better chance that some real learning will take place, and maybe, just maybe, some children will recover.

How do I know some children will recover? Because in addition to the published data referenced in this paper, professionals and parents keep reporting and documenting more and more cases of children recovering, every year since I have been involved in this field. Because I live with two such children. My two youngest - a girl and a boy - were diagnosed with autism when they were about 2 years old. They were diagnosed by psychiatrists, psychologists, pediatric neurologists and speech language pathologists, four out of five of whom used the word “autistic” to describe them. (The fifth used the term “pervasive developmental disorder,” one of several useless euphemisms spawned by the ever-more inventive DSM IV-R). Both children received intensive ABA treatment for 2-3 years. By the age of five, both children were documented as normally functioning. (8) As other parents I know are doing today, I held onto every piece of paper documenting my children’s symptoms, their deterioration, treatment, re-evaluations, and eventually, their recovery. These pieces of paper were written by people who had no interest in creating sensational miracle stories, no interest in selling “their treatment,” their method, or their belief, to anyone.

After I published my book, chronicling all of this, I was hit not only by dismissal from the professional community, but in certain quarters, by outright mockery. OK. Fair enough. I understand that such dramatic improvement is a novel concept, especially for people whose entire careers are built around the notion that they know how to treat autism, and that autism is forever. I understand that if you have built a reputation around your expertise in autism, you are not going to be very receptive to the idea that maybe, just maybe, you may not know what the most effective treatments are, or how to deliver them. I decided, with some weariness, that I probably owed the public some further evidence that my children’s recovery was indeed lasting, and real. I asked three of the original diagnosticians (none of them behavior analysts, by the way), to write a follow up paper on my children. (9) To these clinicians and researchers, I provided videotapes, school reports, standardized test reports, and whatever else I could think of that was not just “mommy’s opinion.”

Still not good enough. From the University of California (10), to Chapel Hill, to the halls of Yale, various “experts” in autism continue to make public statements about my children, whom they have never met. Well, what would it take, I ask myself? Another video? Dinner at my home? Opening our family life more and more to a parade of skeptics whose interests are vested – meaning truly vested both economically and personally – in seeing “residual autism” wherever they want to see it?

I don’t think so. I think I have run out of patience with the fact that the merits of EIBI and the reality of recovery are still “hotly debated,” and that nothing I say, no evidence that I present or that other families or professionals can present, will ever, can ever convince those who do not want to be convinced.

It’s easy to attack ABA by attacking the notion of recovery. So let’s just clear that one up, and move on. Recovery exists, and it is real. Last year, my oldest son finished tenth grade, my daughter completed ninth grade, and my son completed seventh grade. All finished the year on the honor roll or high honor roll. (The need to state some facts supersedes the need to be discreet about one’s children’s academic performance). I’m sorry, but there is no way that I or my husband could possibly “program” these children to succeed in biology, chemistry, advanced placement history, English and American literature, French, physics, algebra, geometry, etc. We couldn’t possibly keep up with the homework, for one thing.

None of the children received special assistance or tutoring since they enrolled in regular school in kindergarten. If they had, would that have proved anything? Think about the number of kids labeled ADD, or “learning impaired,” who receive extra academic attention or tutoring for one reason or another. It’s getting a little tough to define “normal” these days.

So how can we define recovery from autism, if grades and school placement and academic success or failure is not a consistently reliable criterion? Perhaps one helpful concept in thinking about recovery would be the absence of the defining symptomology for autism, especially with respect to communicative abilities and social functioning.

Ah, but what about our children’s social functioning? Do they have friends? Yes, they have friends. But how many friends do they have? Well, let’s see. How many friends do you have? After a while, the questions become almost absurd. But do they relate to their friends? Can they “put themselves in others’ shoes?” Can they think and speak with any abstraction, or originality? My youngest was just elected class representative, my daughter wept with me on September 11th. I would invite some of the most arrogant authorities to my home, so that they could observe the conversations that my kids can have with their friends, except for one tiny problem. I suspect that if those psychologists and psychiatrists and special educators observed the normal teenage behavior that goes on in our house, from self-conscious embarrassment, to joking banter, to arguments about chores, to abstract musings on politics, the response would be the predictable “they were misdiagnosed.” Other parents of recovered children report, almost universally, the same reaction.

To me, this is not just a matter of defending my story. If it were, I would have thrown in the towel long ago. It’s a matter of watching my friends, mothers and fathers, weeping for their children, knowing that a powerful teaching technology exists, but unable to access it for their child, blocked at every turn by an entrenched and stonewalling establishment. It’s hearing yet another mother on the phone, telling me that her three year old is learning more and more, but she cannot get anyone in authority to help her find and pay for an adequate number of treatment hours to ensure that his learning continues. It’s knowing that only a handful of good behaviorally-based programs exist in this country, and that, if this academic and professional resistance continues, we will not see any more any time soon.

· What are the barriers to providing recovery intervention?

Money, for one thing, A scarcity of trained providers in behavioral treatment, for another. But professional skepticism and a refusal to accept hard evidence play into which programs get funded and which do not. If a majority those in power dismiss EIBI, of course parents will be hard pressed to find quality intervention programs, and universities will not set up training programs to meet the need. The Federal government looks to academic and professional authorities to inform its decisions. If such authorities pooh-pooh the notion of recovery, and downplay the role of early intensive behavioral intervention, only the wealthy or lucky will access this intervention for their children.

· Are recovery treatment procedures varied or similar in nature?
· What are the critical elements of any recovery treatment attempt?

These are, in fact, good questions, provided we substitute the phrase “Effective, data-based treatments” for “recovery treatment procedures.” The Association for Science in Autism Treatment, (11), a group of autism professionals and parents whose children have been diagnosed with autism, is working on compiling and disseminating information on these and similar questions. We believe that there is still much work to be done in defining the critical components of effective behavioral treatment models, and in defining the critical skills and knowledge demanded of a trained and qualified provider. We support the work of the Behavior Analyst Certification Board, and we are currently exploring ways of funding, researching and developing a professional training model for graduate students who wish to specialize in ABA and autism treatment. It would be very helpful if the professional community could leave the debate stage behind, and help us in our attempts to bring accurate information to families, and increased access to effective treatment for their children. We face an uphill battle, and we need all the help we can get.

I work with women and men whose children have not recovered, and I count them as my friends and colleagues. Listening to the struggles of my friends, knowing the longing of their hearts, I do pray that one day science will produce an easier, faster, quicker and more effective treatment than that promised through ABA. I hope that current research on neurobiology, immunology and genetics will lead us there. But meanwhile, those parents know, and I know, that there is a difference between being “open-minded” to promising new directions in autism treatment research, and continuing to buy into those myriad treatment options that have had decades to produce substantiating evidence, and have failed to do so. ABA can offer our children a lot. Let’s pull together to support it, while at the same time supporting quality research into the complicated causes of and potential cures for autism.

(1) When I refer to behavioral intervention, applied behavior analysis (ABA), or early intensive behavioral intervention (EIBI), I mean intervention that employs the principles and methods of behavior analysis, not generic early intervention programs that purport to be “behavioral” but actually employ only a few superficial behavioral techniques.

(2) Jacobson, J.W., Mulick, J.A., & Green, G. (1998). Cost-benefit estimates for early intensive behavioral intervention for young children with autism: General model and single state case. Behavioral Interventions, 13, 201-226. [Offers a well-reasoned analysis of this topic]

(3) The question is illogical as well because the word concept is being used to mean the word term.

(4) Clinical Practive Guidelines: Report of the Recommendations. Autism/Pervasive Developmental Disorders, assessment and Intervention for Young Children, 1999 Publication No. 4215. New York State Department of Health, PO Box 2000, Albany, New York 12220.

(5) For an overview of research on this subject, see:
Green, G. (1996). Early Behavioral Intervention for Autism. What Does Research Tell Us? In C. Maurice, G.Green, and S.C. Luce, (Eds.), Behavioral Intervention for Young Children with Autism: A Manual for Parents and Professionals, Austin, TX. Pro-Ed.
Clinical Practive Guidelines: Report of the Recommendations. Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children, 1999 Publication No. 4215. New York State Department of Health, PO Box 2000, Albany, New York 12220.

(6) Lovaas, O.I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.
McEachin, J.J., Smith, T., & Lovaas, O.I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 4, 359-372.
Perry, R. Cohen, I., & DeCarlo, R (1995). Case Study: Deterioration, autism, and recovery in two siblings. Journal of the American Academy of Child and Adolescent Psychiatry, 34, 232-237.

(7) I speak with many parents, and have received hundred of letters and phone calls from parents over the years. But I do not speak for all parents; No parent speaks for all parents, just as no professional speaks for all professionals.

(8) Maurice, C. (1993) Let Me Hear Your Voice, A family’s triumph over autism. Knopf, New York.

(9) Perry, R., Cohen, I., & DeCarlo, R. (1995) op.cit.

(10) Last year, I sent Dr. Bryna Siegel, of the Langley Porter Psychiatric Institute at the University of California, a letter, asking her to comment on repeated parental reports that she has made disparaging comments about my children. My letter was offered to her as a private communication, an opportunity to address her concerns, and mine. Dr. Siegel did not respond to that letter. But personal attacks against my children or me are only part of what I see as a wider problem. What concerns me as well is the sustained attempt on the part of many such “experts” to discredit early intensive behavioral intervention for children with autism, even to the point of serving as expert witnesses for school districts who are fighting parental requests for such intervention. For years, I have been growing increasingly alarmed by the articles and books of such authorities as Shirley Cohen, Gary Mesibov, Ph.D, Stanley Greenspan, Ph.D., B.J. Freeman, Ph.D., Catherine Johnson, and many others. For years, I have been tracking such books and articles, and I have seen dismissive and inaccurate descriptions of early intensive behavioral intervention as well as insistent denials that recovery is possible. In many of these publications, ABA is still painted as child abuse, or little more than some superficial training in skills. Parents who choose ABA for their children are portrayed as delusional, blindly following the hope of recovery and willing to do anything to force children into compliant robotic behavior. Obviously such caricature can only render parental access to effective treatment ever more difficult.

(11) The Association for Science in Autism Treatment. 175 Great Neck Road, Suite 406, Great Neck, N.Y. 11021. Tel: 516 627-8943. Fax: 516 466-4484.

Catherine Maurice, Ph.D. is the author of Let Me Hear Your Voice, a family’s triumph over autism (Knopf, 1993); the principal editor of Behavioral Intervention for autism, a manual for parents and professionals (PRO-ED, 1996); and principal editor of Making a Difference, Behavioral Intervention for Autism. (PRO-ED, 2001).

Friday, April 07, 2006

not exactly more of the same, but definately some of the same....

We did a bunch of tests a month ago and we went in Wednesday to learn the results. First of all, when I say we did a bunch of tests, I mean that literally, WE do them. I have to collect all these samples in take home kits and then send them off via FedEx, or UPS, etc. for analyzing. It is a PIA. I have to restrict certain foods for some of them, fast Abby for others, only follow an abbreviated vitamin protocol for others still. Some are 24 hour collections, others are timed. Ugh. It is nervewracking to keep it all straight and to collect them accurately. I always worry that I am doing something wrong.
First the good news:
Her yeast looks good. YAY! PTL! This means the modifications that we have made using the SCD and digestive enzymes are working and we can continue to allow limited dietary infractions. I am soooo glad. I was really nervous the test would indicate a need to return to the hard core Gluten-Free/Casein-Free, sugar and all its derivatives-free, yeast-free diet that we followed without a break for a full year. Now we still do follow this for the most part, but the occasional (very occasional) french fries or birthday cake and even Pizza Hut thin crust pizza is okay. This means a lot more freedom for us as a family to go out and eat, etc. So this is really good news.
The not so good news:
One of the tests we ran was on Abby's neurotransmitters. Her incresed inability to attend has worried me for more than a year. The ABA people say that we can improve it by modifying her behavior, but I don't know. Maybe that is true, but I can't ask her teachers to take all this special time out to keep her on task and I am not sure I even agree with them because even highly preferred activities are very hard for her to stay focused on anymore. Her SLP has mentioned her inattentiveness more than once. Anyway, this test was to see how her brain was working to produce dopemine and seretonin, etc. The results were unusual (the docotor's words). The tests indicate that she is producing everything, all 8 chemicals that our brains require to function properly, and in very high amounts. He said that this indicates that the connection is faulty, rather than the equipment. Now we are adding some new stuff to her regime to hopefully facilitate connection: TravaCor, EndoTrex (theanine) and Calm-PRT. To be honest I don't really know what to make of this information or how the new protocol is supposed to work on the problem. I have emailed a neuro friend of ours to see what he thinks. I know I should be relieved that we aren't going to have to medicate this ADD issue, but after all our hard work, I guess since starting Emma Jean on Paxil made such a huge impact on hers (and ours) quality of life I halfway hoped that there would be somethng to help Abby like that.
The bad news:
We did another toxic metals screen and her lead level is OFF THE CHARTS!!!!
We have to begin chelating again. I hate this. We are using a different chelating agent this time and it will be oral instead of transdermal, but her behavior was terrible the entire year that we did this before. She started doing all kinds of weird stimming (finger flicking, hand-flapping) and it scared the bejeebus out of me. Regression is a very real and looming fear at all times when dealing with ASD's. When I see a bunch of problematic and frankly "autistic-y" looking behaviors suddenly emerge it is terrifying. I told the doctor that we are doing everything we can to get her socially and mentally ready for school next year and I am loathe to get her weirdness all riled up and then send her into the classroom when we've made our case for inclusion already, KWIM? He says he has never seen the kind of things we experienced with DMPS with the DMSA chelating agent we will be using this time and we are only doing it on the weekends. I am still nervous. I am also just flummoxed about the source of this stinkin' lead. What the heck?
Anyway, that's our mixed bag. I have to schedule a big ol' blood draw to test her organ function too. Joy.
Time to break out the diazipam.
Yours, O LORD, is the greatness and the power and the glory and the majesty and the splendor, for everything in heaven and earth is yours. Yours, O LORD, is the kingdom; you are exalted as head over all.
1 Chronicles 29:11

Saturday, April 01, 2006

we're here! we're weird! get used to it!

April is Autism Awareness month. Unlike cancer or diabetes which can kill, autism does not shorten the affected person's life span (mercifully). Because my beautiful and awesome little girls have this disorder and because I think they are wonderful and dazzlingly unique creatures perfectly designed by God, I have always struggled with the language around the disorder. "Cure Autsim Now!" etc. When I see my girls or their affected peers, I find myself thinking, "Cure them of what? What needs to be cured?" At times I have thought that the world needs to be cured for how negatively and dispassionately they view autism and the people who have the disorder. At any rate, I understand that rallying behind acceptance would not generate nearly the interest or funds for research that looking for a cure does so I have no beef with the use of the term, nor am I offended by it. But there are adults with the disorder who are very, very offended and I can see their point. What if being brunette was an anomaly and the world was always rallying to "cure brown-headedness." If you were a brunette, and managed to live a satisfying life as such, that would sting and probably ruffle your beautiful russet tresses. Do ya'll see where I am going with this?
I want to share this essay. It was a speech given by Estee Klar at a NAAR rally recently. I think she sums it up beautifully.

The Economy of Pity

My background is unique in discussing the economy of pity. I began my circuitous career as a curator of art, later a director of a large event, then a corporate fundraiser and marketer for two major health charities. I also summized that art made me an effective beggar of money (not many love to fund art, to my chagrin). After Adam was diagnosed with autism and NAAR came to Toronto, and coming from Jewish family entrenched in the Hebrew ideal of tzedakah (helping those in need), it seemed natural for me to raise money for the cause that was dear to my heart: autism. At the NAAR Kick-Off Luncheon, I was asked to speak about autism. I sat and waited for my turn as Corporate Chair, becoming agitated already with what I was hearing. I was listening to leaders talk about how they “lost” their child, how devastating it was for them, poems elicting a tremendous amount of pathos from the audience. In my speech I instead spoke about research to help us understand our children with autism better. I did not talk about cures – I spoke about awareness. It was my hope that others would share the same optimism. I quoted Paul Collins:

“Autists are described by others – and by themselves – as aliens among humans. But there’s an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin what it means to be human. Think of it: a disability is usually defined in terms of what is missing. A child tugs at his or her parents and whispers, “Where’s that man’s arm?” But autism is an ability and a disability; it is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the result.” -- Paul Collins, Not Even Wrong.

I was approached afterward by educators and parents, who said they thought my speech was the best. While I am a very good speaker, I considered that my words about acceptance was the source inspiration as opposed to those mothers weeping at the “loss” of their children. It didn’t take long – a meeting with Glenn Tringali, a phone call with Alycia Halladay, appealed for my continued support to sit as Chair of NAAR. I remember sitting at The Four Season’s Hotel with Mr. Tringali, saying that if I joined, my mandate would be to raise awarness – the brand that I was selling. I addressed a consideration when Dr. Buxbaum made a quote about being able to prenatally test for autism, and to what end. A snarky email later, addressed to me by Joseph Buxbaum, and no return call from NAAR agreeing to my wish, I quickly realized that NAAR’s marketing appeals are not acceptable, if in fact inflexible. This is not to say I haven’t met scientific researchers funded by NAAR who are themselves questioning the marketing and the research, and in order to protect them I will not reveal their names. Believe it or not, there are scientists out there who have come to the same conclusion that I am revealing here. Similar to the difficulty of pulling away from ABA to try other methods of teaching Adam, leaving the gods of research initially made me uneasy. Afterall, what might the research tell us? Who was I, not scientific in the least, to question the gods? Once looking carefully at the bulk of research, I realized that it will go on with or without my support. It doesn’t need me. There are people who will find the genes, who will sell the pills, who will abort the fetus. The only thing I can keep doing, we can keep doing, is to keep talking. Give speeches, make exhibitions, run media campaigns. Did you know that eighty per cent of fetus’ with Down Syndrome are aborted? Isn’t that number shocking? I think of little B running down the hall of Adam’s integrated nursery school, a huge smile on her face, living life to its fullest and wondering what is wrong with my wiring that I’ve missed out her type of joy. Having children who are “different” is an unexpected experience, a positive one, and I keep trying to figure out how to impart a message of experience to others who have never had the challenge, and ergo, the ultimate benefit of one.

NAAR recently posted a book about accepting autism on their website. While it’s an attempt, I still appeal to them to change their fundamental error – to suggest that autism requires a cure at the utter dismay and disagreement of those with autism. I’ve asked NAAR to consider giving me an opportunity to voice these concerns, to change their semantics, and to conduct research only directed by autistic persons and to keep one ultimate goal in mind – the acceptance of and quality of life for families with autism as they are. Change, if it happens at all, will be slow. Now partnered with Autism Speaks, NAAR has an annual budget in excess of $30 million, with CIBC World Markets in the US trying to raise more “miracles,” and Home Depot is doing their part donating $25 million to the cause.

I certainly can’t offer a matching grant of that amount to get NAAR to listen to me, but I am a parent who “can speak up for my child,” and do so by listening to others with autism as well. I can’t compete on the same playing field with cause-marketing thrusts to make companies appeal, with their good intentions, to customers. What I suggest companies are missing is a due-diligence. Do they know what brand of pity they’re paying for? In War Against the Weak, Edwin Black writes about the first three decades of the 20th century when American corporate philanthropy “combined with prestigious academic fraud” created the pseudeoscience of eugenics that “institutionalized race politics as national policy. The goal: create a superior, white, Nordic race and obliterate the viability of everyone else….How? By identifying so-called `defective’ family trees and subjecting them to legislated segregation and sterilization programs. The victims: poor people, brown-haired white people, African Americans, immigrants, Indians, Eastern European Jews, the infirm and really anyone classified outside the superior genetic lines drawn up by American raceologists.” We always have to ask ourselves what is the end to this means of genetic research. Must we simply accept the good with the bad in the name of progress?
War Against the Weak By Edwin Black discusses how American corporate philanthropies launched a national campaign of ethnic cleansing in the US.

It seems to me, after having made hundreds of solicitations to corporations myself over the years, that no one thinks twice about the brand of pity they disperse. Pity is one and the same and it just makes us plain good. There is little discrimination going on the world about who is soliciting for what. So long as the message is filled with a little bit of logos and a whole barrel of pathos, the cause is whitewashed under the guise of “doing good.” It is a problem with altruism, actually. This is how Nietzsche felt about so-called `benevolence’:

Is it virtuous when a cell transforms into the function of a stronger cell? It must do so. And is it wicked when the stronger one assimilates the other? It must do so likewise: it is necessary, for it has to have abundant indemnity and seeks to regenerate itself. One has therefore to distinguish the instinct of submission in benevolence, according as the stronger or the weaker feels benevolent. Gladness and covetousness are united in the stronger person, who wants to transform something to his function: gladness and desire-to-be-coveted in the weaker person, who would like to become a function. The former case is essentially pity, a pleasant excitation of the instinct of appropriation at the sight of the weak: it is to be remembered, however, that “strong” and “weak” are relative conceptions.”

Therefore, the whole idea of charity segregates people into strong and weak and forever keeps the “weaker” members of society at a disadvantage, serving only to marginalize them. On the other hand, where would the Stephen Hawkings of the world be without the help, the selfless behaviour, of others? Love from his caregivers was what kept him alive, and archeological digs have revealed the remains of people who evidently lived for long periods of time being crippled.

I will posit here, in this initial draft, that Autism is the one “disability” that may change the course of philanthropic history, that may be able to jolt citizens into giving with knowledge as well as with heart. Autism is neither a race nor a disability, it is a way of being. It may even be viewed as a course of human evolution, and most illustrative of all human difference. On the surface, it appears alien, and from within people with autism maintain huge capability and intellect, often able to communicate themselves through alternative means, if presumed competent, if given the chance, much like Stephen Hawking. Organizations that seek to fund this “difficult and mysterious disorder,” to "cure it," as a war waged against the autistic population, instead of listening to them, may become baffled at the ability of autism, despite its superficial dysfunctions. It is finding itself at an intellectual and philosophical divide with those they are seeking to cure. Parents are baffled, or angry. Afterall, aren’t they just good people trying to help others? Shouldn't parents who struggle day in and day out, whose expectations have been taken from them, have pity bestowed upon them?

I say no. I say that as difficult as it is for many families, who experience a "spectrum" of challenges, this is life's test. "The best thing about the future," said Abraham Lincoln, "is that it comes one day at a time." We have time to reframe our expectations and to find joy in autism.

Corporations, innocent and unknowing of this divide and the abilities of those with autism are giving money – perhaps one day to find themselves confronted with violations against human rights. I don’t think they are prepared. People with influence (those in control of the media), appear shiny and credible in the eyes of fellow CEO’s. Logos – the rational appeal of statistics and numbers manipulated for Pathos is the thrust of this economy. The most “underfunded disorder,” “1:166 children affected,” mixed with a little “epidemic” lingo is enough these days to convince a CEO to give. On top of that some media profile, signage and press releases for being a “responsible corporation” -- another rational and economically sound reason to give.

Autism requires donors to do their research. It requires others to talk to people with autism as the experts of it. It requires philanthropists to fully understand the motives of charities asking for money for the sake of a cure.

"Autism is finally speaking," says Suzanne Wright. "Now the world will listen...Be loud, be brash, be emotional, be angry," added Bob Wright.

"Don't accept it," Ms. Wright continues.

Yes, Mr. And Mrs. Wright. Autism is speaking. But not through you. "

The Joy of Autism: The Economy of Pity
  • International Day of Prayer for Autism & Asperger's Syndrome