Whose Planet Is It Anyway?

Saturday, April 26, 2008

The Autism Recovery Hoax

I've seen a number of testimonials floating around on the Web from parents who declare that after a few years of X biomedical program or Y behavioral therapy, their child has now "recovered" and has been evaluated by reputable psychologists and found to have "no trace of autism."

Many of these parents appear to be sincere, unlike the hucksters who tout their endorsements. However, their claims reflect a basic misconception of how an autism diagnosis is made. Quite simply put, it is not possible under the DSM-IV criteria to have a "trace" of autism. The diagnosis requires a showing of significant impairment in certain identified social and communicative behaviors. Therefore, if a child or adult has autistic characteristics but does not have (in a clinical psychologist's subjective judgment) any significant problems associated with those characteristics, the psychologist will conclude that he or she is not autistic.

Indeed, because many autistic adults have become familiar enough with society's narrow behavioral expectations to be able to blend in (at least superficially) with the majority population, it is often extremely difficult for a psychologist to diagnose an autistic adult. Some psychologists will not even attempt to diagnose an adult unless he or she comes to the evaluation accompanied by a parent or another older relative who can accurately describe his or her childhood development.

The flaws in this diagnostic approach are pretty obvious. It's basically the equivalent of identifying a young girl as female based on evidence of significant female behaviors such as playing with Barbie dolls, and then declaring her to be miraculously recovered from her gender when she outgrows the Barbies.

Yes, there are many parents of so-called recovered children who have in fact seen significant changes in their children's behavior over a few years. To a large extent, these changes are attributable to the natural process of maturation. Just as girls outgrow playing with Barbies, autistic children outgrow behaviors like jumping on the couch and climbing on the furniture. Children also develop better language skills over time.

Some changes also may be related to psychological factors in the family. That is, if the parents react to the autism diagnosis with shock and despair, the child is likely to become very anxious as a result of observing the parents' distress and probably will have more behavioral issues because of that anxiety. If the parents then become convinced that they have found a wonder cure and that everything will be just fine, the overall level of anxiety in the household will decrease greatly, and the child's behavior will improve just because he or she is no longer feeling as stressed.

On occasion, alternative diets do have beneficial effects. Gluten intolerance and lactose intolerance are both fairly common in the general population. If an autistic child who happens to have one of these conditions is put on the popular GFCF diet, the child's digestion will improve, and he or she probably will behave better as a result of feeling better. This doesn't mean that the child is no longer on the autistic spectrum, however; it simply means that he or she is a healthy and happy autistic child.

A biomed enthusiast or behaviorism supporter may ask, perhaps, whether it really makes any difference if a child is described as "recovered" or as an autistic child who has developed a socially accepted set of behaviors. In either case, they may say, aren't we talking about the same positive outcome? Does it really matter what language is used?

The difference is, of course, that using the word "recovery" implies that autism is a disease. This in turn implies that autistic people are damaged, that the autistic way of being is inherently flawed, that it is not possible to be both healthy and autistic, and that (as Autism Speaks would have it) the entire autistic population ought to be eradicated.

There's also a subtler set of implications. When social conformity is equated with neurological health, the objective of "recovery" then becomes conformity for its own sake; just looking normal (whatever that may mean), rather than developing truly useful life strategies, is the ultimate goal. Instead of valuing diversity and helping every child to find a niche based on individual strengths and interests, we end up crushing an ever-widening array of human differences as our society lurches toward Camazotz. Becoming socially accepted, regardless of what is lost in the process, should not be assumed to be a positive outcome.

And then, of course, there's the implication that the hucksters want to create when they speak of "recovered" children: that autism is a tragic disease, and therefore if you are a loving parent, you'll gladly go into debt to pay for the latest and greatest miracle cure. If they honestly acknowledged the simple fact that autistic children mature over time, they wouldn't be able to stampede so many parents into buying unproven and possibly dangerous products and services.

Parents—don't be fooled by this hoax!

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30 Comments:

  • you always put everything so well

    By Anonymous on1hand, at 7:25 PM  

  • The thing is, there currently exists no formal, non-pathologic definition of autism. Autism, as it is currently defined, is a disorder. Therefore it is, in fact, possible to recover from autism and cease to be autistic, as currently defined.

    You argument should be with the definition of autism, and not with people who describe situations within the existing definition.

    By Blogger VAB, at 7:59 PM  

  • dude we have an issue with someone we want to respond to, who believes that autism is in fact a disease...........he thinks that all this different language (autistic versus person with autism, etc) is just a game of semantics........I wish you had included in your post links to material that proved that autism is not a true disease.........I need some of that for our response to this man's comment........if you can help us find some, it would be much appreciated

    post very well written of course........

    Athena and The Integral of athenivanidx

    By OpenID athenivanidx, at 9:09 PM  

  • on1hand: Thank you!

    VAB: I don't see the two arguments as mutually exclusive. One can criticize a flawed definition while also pointing out the harm resulting from its use and misuse. I'll give you a historical example: In medieval times, scientists who believed that the earth revolved around the sun were formally defined by the Catholic Church as heretics. Therefore, church leaders concluded that it was possible for them to recover from their heresy and cease to be heretics, either by recanting their views or by being put to death. When people argued that the church shouldn't be burning scientists at the stake, the inquisitors responded that as long as the church defined the scientists' beliefs as heresy, it was proper to try to recover the heretics. However, the definition in itself didn't necessarily imply that those who held such beliefs ought to be tortured and killed; rather, it was just a convenient excuse.

    athenivanidx: I don't think it is possible to prove that autism either is, or is not, a true disease. After all, how does one define what a true disease is? Every culture answers that question differently. Here's a quote from cultural anthropologist Roy Richard Grinker's book Unstrange Minds (page 11):

    "...autism, like all disorders, does not exist outside of culture. It is culture that sees something as abnormal or wrong, names it, and does something about it..."

    By Blogger abfh, at 10:34 PM  

  • Aside from the implication of fewer obvious autistic behaviors equally recovery from a disease, it is especially dangerous to say that someone is no longer autistic and even more so to get rid of the diagnosis, especially if the improvements in language or whatever happened as a child or teenager.

    The fact is, people aren't static, and the losing of a label doesn't mean that person will never exhibit those behaviors that qualify them for the label in the first place. You can gain or lose skills at any age. And if your parents had your diagnosis removed especially, then if later on you need some assistance/ accommodations, whether because you just naturally lost skills you previously had or because your environment has become more stressful, then it would be really hard to get access to needed services. Also, if you are taught (especially when younger) that "oh, you used to be autistic but not anymore" or "you're only mildly autistic now", then you are set up for a guilt trip when you start behaving more visibly autistic. Even though my parents were very positive with me, because the school had identified me as "very high-functioning" (which is mainly a statement of test scores than practical things), I felt like when I did things generally associated with "lower-functioning" people that I was somehow doing something bad, or being childish and doing things on purpose as opposed to having genuine differences/difficulties.

    By Blogger geosaru, at 11:37 PM  

  • Well what you come up against here are the basic epistemological concerns of a diagnosis that is only given by recognising behavioural signs and does not have any biological or neurological markers that are recognised as yet.

    (It's actually no different from dyslexia or depression in that respect)

    This is not something of concern for clinicians, but it is of concern to researchers.

    DSMIV (or was it DSMIV TR) introduced a lot of "clinically significant" riders into the diagnostic categories, this is out of step with physical medicine where one can have a condition, (because it's biological markers can be seen in X Rays, blood tests etc) but which does not inconvenience the individual who has the condition. It is a diagnosis of a well controlled condition for instance.

    Autism however isn't yet (and it may be in future revisions) seen that way yet.

    The problem is simply one arising from the nature of a developmental "disorder" in that when all the symptoms are gone, it is quite permissible to say that it should not any longer be diagnosed as it no longer makes a "clinically significant" impact on ones life.

    What really worries me with some of these biomedical and pharmaceutical interventions is that they are actually reversing what is a natural trajectory, and the kids would "recover" even quicker if these dangerous drugs were not interfering with neurological development precisely at the time when such interventions are at the most dangerous.

    This is where anecdotal evidence is at it's most useless, because you can't control the individual case and run an experiment in an alternative universe to see what would happen if the diet had not been followed or whatever.

    Sadly most individuals do not have there neorological configurations optimised for framing research questions and dealing with the complexities of proof. That is left to "us" academics.

    By Blogger laurentius rex, at 5:25 AM  

  • Oh and before anyone picks up on it.

    My dyslexia seems not to have reached the stage in it's trajectory where it is no longer noticable in my spelling inconsistencies.

    That is not a reflection on my academic ability I might add.

    The concerns I am talking about have been discussed over the entire concept of "mental disorders" in the literature to be digested for those who are currently rewriting the manual I just forgot the citations

    http://appi.org/book.cfm?id=2292

    By Blogger laurentius rex, at 5:33 AM  

  • geosaru and Laurentius Rex: You've both raised very good points. Thanks much!

    By Blogger abfh, at 9:44 AM  

  • The Catholic church definition of heresy would, however, include the requirement for recantation. So a person who used to believe that Mary was impregnated by Joseph, and then changed their mind, either all on their own, or after a nice chat with their priest over a glass of wine, could properly be said to have recovered from heresy. We would not then feel obliged to identify an "heresy recovery hoax," because the recovery would not be a hoax. Just as, in this case, it is not the recovery from autism that is a hoax, even if the interventions are inappropriate and may themselves be hoaxes.

    As you know, I don't see autism as something from which people can or should recover. For me, that means that the way ion which it is defined need to be change. As Larry points out, we don't have biomarkers to facilitate that now, but then we don't have biomarkers for homosexuality either. The definition can still be changed. It could, for example, be defined as an innate predisposition for certain patterns of neurological behavior over other patterns of neurological behavior.

    By Blogger VAB, at 2:12 PM  

  • VAB, by using the word "hoax," I meant that the changes in the children's behavior are being attributed to various interventions and that this misattribution is a hoax. To clarify, I did not mean to suggest that the psychiatrists who wrote the diagnostic criteria are conspiring with the quack cure peddlers. To the contrary, I'm sure that the psychiatrists would prefer to have autism seen as a permanent disorder requiring a lifetime of medication, etc., as that's where they make their money.

    By Blogger abfh, at 7:06 PM  

  • "The flaws in this diagnostic approach are pretty obvious. It's basically the equivalent of identifying a young girl as female based on evidence of significant female behaviors such as playing with Barbie dolls, and then declaring her to be miraculously recovered from her gender when she outgrows the Barbies."

    You make your point with brilliant simplicity.

    Vab wrote:
    "The thing is, there currently exists no formal, non-pathologic definition of autism."

    Vab, have you read the monotropism hypothesis by Murray, Lesser and Lawson?
    http://www.autismandcomputing.org.uk/hypothesis.en.html

    The need for finding rock-solid definitions of a condition disappears when the condition only has major significance in society because of prejudice. This is why respectable scientists are not pleading for funding to find genes or biological markers for gayness.

    By Blogger Lili Marlene, at 10:51 PM  

  • Great post. The whole "recovery" thing aggravates me (partly since I still see traits in every so-called "recovered" child I see PLUS I agree 100% that promoting this idea of recovering you kids is only harmful). As a parent, it sickens me when other parents accuse me of harming my child--because we're NOT chelating or injecting or whatever--and I hate all the organizations that echo that thinking. I'm constantly having to explain to others why we're not doing this or that. It's odd to many that we are loving and accepting our daughter, helping her of course (accommodations, schedules & routines, changing how we parent, etc.), but not spending every hour trying "cures" (and also searching for "causes").

    So many people wrongly think that autistic kids don't progress, don't change at all. I've yet to meet an autistic child (regardless of where they fall on the spectrum) that at 10 is exactly how they were at 4.

    What angers me most about those who go on TV and brag about their "recovered" child and/or about how sad and desperate their life is since their kid has autism, is how that affects MY child's future. If people see autism as something to be cured, something that people can 100% recover from, then why bother to create or offer adult programs? Promoting the idea that autism and autistic children have been "kidnapped" by it, are soulless, out of control, etc. further stigmatizes. And again, people will think, "wow, we need a cure ASAP" or "I don't want those kids near mine," etc.

    Again, great job, you laid it out splendidly.

    By Blogger S.L., at 1:36 AM  

  • Harold, I deleted your comment because I have a rule against posting full links to pro-cure articles and sites. I have copied your comment in full below, with a truncated URL:


    Autism Reality NB wrote:

    So you disagree with Dr. Doreen Granpeesheh? Of course, what are her credentials compared to yours?

    ...........................

    "Ruffin, Janna, Nick and Brett participate in mainstreamed high school settings, and are exceptional students. They are involved with friends, hobbies and sports. By anyone’s standard, they are typical teenagers. All four children had a formal removal of their diagnosis, exhibiting scores in the normal range in intelligence, language and adaptive skills after treatment.

    Their story is told by Dr. Doreen Granpeesheh, founder of the Center for Autism and Related Disorders, Inc. (CARD), the organization responsible for their treatment. She and her staff developed and administered treatment programs for each of the children using Applied Behavior Analysis techniques and documented the children’s’ stories and progress.

    Recovered: Journeys Through the Autism Spectrum and Back is a true and inspiring story of four families who were given no hope, one organization which refused to give up, and four brave children who overcame the odds to achieve success. The documentary includes pre and post treatment interviews and therapy sessions.

    “Many people don’t believe it is possible to recover from Autism. Our purpose in developing this film is to show that there is reason for hope. These children can learn to communicate, socialize, and play. I wanted to make sure families hear and see that,” Granpeesheh said."

    pr.com/press-release/82432


    I hate to burst your bubble, Harold, but I was also in a mainstreamed high school setting, had friends and hobbies, and participated in sports. All without benefit of ABA or any other "recovery" efforts, unless you want to count a few sessions with a nice old-fashioned counselor when I was in fifth grade, who advised me to take up gardening and needlework because they were calming. I know several other autistic spectrum folks who had similar experiences.

    It is an unfortunate fact that academic credentials, no matter how good they may be, do not ensure that a person will be free of prejudiced and unreasonable opinions. The psychiatrists who labeled gays as disordered and tried to recover them from their homosexuality had impeccable credentials, too. So did the scientists who supported eugenics a century ago, when they presented academic papers claiming to prove that non-whites were genetically inferior.

    By Blogger abfh, at 9:06 AM  

  • The book The Short Bus: A Journey Beyond Normal by Jonathan Mooney addreses the issue of seemming "cures". Mr Mooney was diagnosed in school as dyslexic and ADHD. He graduated college and appears to be normal/cured, but in the book he talks about how his ADHD is still apart of him and how trying to become normal cost forced him to deny an important piece of himself. Different disability, same issue.

    By Anonymous Naomi, at 1:51 PM  

  • Not only are asd's diagnosed on the basis of observed behavior (presuming deviance from some "normal" behavior), but the diagnostic criteria tacitly presume childhood behavior. Given that implicit bias, it's not surprising to hear claims of recovery as children grow older. It's not that children recover from autism -- they simply outgrow the types of behavior associated with autism in toddlers and preschoolers.

    For the same reasons, it is no surprise that the denial of the existence of autistic adults is so widespread: the mindset of the diagnostic criteria will simply not allow for mature manifestations of autism.

    It may take the passage of this generation of autistic children into adulthood for research and public perception to come to grips with the idea that autistics mature yet remain autistic.

    Or have I strayed to far from the farm here?

    By Anonymous Morgan, at 4:47 PM  

  • This is truly an inspiring and lively conversation. My stepson, age 26, moved in with us at age 22 after I married his dad. Within 2 weeks I could tell that he had a learning difference. After doing some reading on Asperger's syndrome I easily recognized him in the picture. With this recognition of the issue, it has been so much easier to help him progress. Yes, he has social difficulties. Yes, he is very literal and gets easily overwhelmed. And while it has been a huge relief for his parents (all 4 of us), he has been reluctant to fully embrace his differences. He wants to be "like everyone else" even though everyone else doesn't have many of the amazing skills he has either.

    I like to think that he has learning differences, rather than think of him as being diseased. He's different. And that's fine.

    As a clinical nutritionist, I do a lot of work with special diets for people of all ages. I have seen GFCF diets be of great assistance. I have seen SCD diets also be of great assistance to people on the spectrum.

    A few weeks ago, I put a 7 year client on the GFCF diet. Within 2 weeks her behavior was markedly improved---from really difficult in school and at home to reasonably behaved as long as her blood sugar was stable. Was her ASD gone? No. But she had a huge improvement.

    I have found such good results with a GFCF/sugar free/additive free diet that I posted a free downloadable report on my website.

    In some people gluten and casein become glutomorphins and casomorphins. They act like opiates in the brain and can significantly disturb brain function. Removing them can be a godsend for some children and families.

    What changes in diet can do is to help the GI issues that many children and adults on the spectrum have. In fact 2/3 have digestive issues. So often physicians ignore the GI issues as being unimportant. They are important because they deeply impact quality of life. Many people with ASD have increased intestinal permeability, food sensitivities, IBS, and more. Many are malnourished because they are fussy eaters. I find that giving nutrition boosters can also be really helpful. These are hypoallergenic drink boxes or powdered mixes that contain free amino acids, fatty acids, vitamins and minerals in a form that kids can absorb. There are published studies showing that these can significantly help with digestive issues. There are unpublished reports about children who had failure to thrive, suddenly thriving; children who hadn't talked, beginning to talk; and children with ASD thriving with the addition of these nutrition boosters.

    So, while not a panacea, diet and other biomedical treatments CAN help to optimize someone's function. Whether they "cure" or not remains to be seen. As a parent and a health professional, looking and trying as much as we have the energy to explore seems to be a reasonable approach.

    By Anonymous Liz Lipski PhD, CCN, at 5:37 PM  

  • damned if you do, damned if you don't. I am the proud mom of two boys who are who they are. http://miscthing.blogspot.com/2008/01/how-come.html

    By Blogger Ange, at 9:22 PM  

  • Liz: A recent study of autistic children found no evidence to support the opioid peptide hypothesis.

    However, I agree that there are many children and families who could benefit from a healthier diet in general.

    Ange: Thanks for the link, and very well said!

    By Blogger abfh, at 9:39 PM  

  • Morgan: "Not only are asd's diagnosed on the basis of observed behavior (presuming deviance from some "normal" behavior), but the diagnostic criteria tacitly presume childhood behavior. Given that implicit bias, it's not surprising to hear claims of recovery as children grow older. It's not that children recover from autism -- they simply outgrow the types of behavior associated with autism in toddlers and preschoolers.

    For the same reasons, it is no surprise that the denial of the existence of autistic adults is so widespread: the mindset of the diagnostic criteria will simply not allow for mature manifestations of autism."

    Damn, Morgan! I couldn't have put it better myself!

    Have you strayed too far from the farm? Hell, no!

    You've just told everybody where the farm is!

    By Blogger David N. Andrews MEd (Distinction), at 4:02 AM  

  • I'm with on1hand---wonderful post!

    Will the almost uncontrollable feeling of wanting to break my foot off in the ass of the next person who asks me if I've tried Jenny McCarthy's approach to "curing" my son ever go away, oh wise one?

    By Blogger Attila The Mom, at 7:07 PM  

  • Attila, you just have to get diagnosed with Foot-Ass Disorder, hire a team of therapists to analyze your behavior, and take plenty of dietary supplements to ensure a prompt recovery. That uncontrollable feeling will go away in no time.

    By Blogger abfh, at 10:03 PM  

  • Excellent post and interesting commentary. Foot-Ass Disorder. LOL!
    The only points I would add RE the deception of "recovery" is that parents who are devastated by the ASD dx have low expectations for their child's development. They also seek behaviors that disregard the importance of their child's "own world". (pleas such as "Look at ME" aggravate my foot-ass disorder)
    When they think they are recovering their child, their expectations rise. They believe in their children, and guess what, children rise to the expectations.
    and VAB- autism as a Phenotype, inclusive of impaired and non-impaired people is an alternate definition. But where my son is concerned, the medical dx was necessary.

    By Blogger Suzanne, at 12:51 PM  

  • My son is "recovered." Was diagnosed by a neurologist, with diagnoses confirmed by 2 separate tertiary care center multidisciplinary teams. His year or more delays in language, social skills, self-help skills, etc. were fully remediated by ABA per Lovaas/Granpeesheh in 2 1/2 years' time. My school district, my health insurance company (and I) paid for it, and my school district continued to pay for his junior boarding school, and his Catholic High School boarding education--where he's on the National Honor Society.

    Here is how he writes, now:

    1. What are your long-range goals?

    To become an MIT-trained electrical engineer working with new materials chosen to better solve the recurring problems of working in small geometries.

    2. State your first and second choice of field and subfield of research in which you wish to work, for example: Biology, neuroscience; Chemistry, organic; Computer Science, artificial intelligence; Engineering, electrical /environmental; Physics, astronomy. In your fields of interest, please state what you see as the three to five most interesting questions/problems and why they are interesting to you.

    Engineering, electrical/materials. The most interesting problems involve solving the complex puzzles of electrical circuiting optimization with statistics and the application of optimizing and genetic logarithms, to accommodate and correctly balance many factors like cost, efficiency and performance.

    Optimization is a process that depends on understanding the physical relationships that exist between electrical current and fields, magnetic fields, heat, frequency and materials to design changes that will avoid predictable problems, and produce overall improvements in signal function.

    There are equations called “spatial derivatives” which can define slopes in multi dimensions. Each parameter factor to be considered in a design—such as weight or product cost—can be assigned an individual slope. Using these types of mathematical equations and routines can help find the available minimum and maximum points of each variable factor. Working mathematically in multi dimensions using optimizing algorithms allows designers to find the places where desired minimums and desired maximums converge.

    Although I don’t know all this mathematics in detail because I haven’t had the opportunity to study it yet, I can understand this process by imagining using measurement data from a survey to create a 3-D map of land—certain high points—hills and mountains and valleys will emerge—and by looking out from hill to hill and moving from hill to hill, researchers would be able to find the “mountain” or the highest value solution. By now, much of this process should be written into software.

    A recurring question is how small can you make the components and of what shapes so that the distance between everything assures that the system will run fast? In the small geometries of the silicon chips, there is a problem of how to get the signal to travel unimpeded between the “package” which is bonded to the silicon chip, through the solder, and on through the system without wave resonance feeding back into the chip. If the feedback falls into phase or resonates with the transmitted wave, no signal will get through—what is called impedance discontinuity. If there is “crosstalk” between the various magnetic and electrical fields thrown off by traveling currents that are too close together on parallel wires, there can be other forms of impedance discontinuity as well. This interests me because I know a lot about operating systems and user interfaces, but what I'm curious about is to learn about the electronics themselves at the most fundamental research and development level.

    A recurring problem in material science is building in safety for our health and the environment's. Some chip manufacturers have recently moved from lead and tin based solder to silver and tin based solder to “get the lead out” of the environment. The trade-off is the new silver and tin based solder requires significantly hotter temperatures to melt it and use it to apply components to the chip. This presents a new problem because all the other materials to be used in the chip system have to be chosen so that each will not melt. Each has to be chosen to have a high glass transition temperature, although generally speaking, materials with high glass transition temperatures are not the same as materials with the low dialectic constant you want to achieve fast electrical conduction. So research is needed on how to develop new materials to satisfy the needs of the economy, the environment and the new demands placed on materials by the higher manufacturing temperatures..

    3. What extracurricular activities and/or hobbies demonstrate your interest and ability to undertake scientific or mathematical research? (Give some measure to the extent of your participation and/or accomplishments in math or science competitions, research internships and awards received.)
    I am a remote control car-racing enthusiast.
    I am a skilled potter at the wheel, interested in the chemistry of glazes and firing.
    I succeeded in getting admitted to St. John’s Preparatory School by presenting a PowerPoint with embedded videos to show how I would use assistive technology to meet the demands of a rigorous college preparatory curriculum.
    My foreign language is Chinese.
    National Honor Society, Saint John’s Preparatory Virgil Michel Chapter—admitted 10th grade. My personal service project has been to promote awareness of the environmental impact of a “paperless” school through the use of assistive technologies and voice recognition systems. I tutor younger students in the use of these helpful software programs. One of these students could not type easily, having lost an arm. Another student, like me, has some learning disabilities with spelling and handwriting challenges.
    I have been on the Head of School Honor Roll every semester of high school.
    I have been competitively admitted to the following gifted and talented summer programs in Iowa and Wisconsin:
    Explorations! 2007 at Iowa State University—Rocketry 101: “Ruffin was a great student. He worked hard all week and really applied his knowledge of rocketry to each of his projects. He always worked responsibly and was respectful to his classmates. He was dutiful in his homework assignments and accurate in his calculations of the data collected. He was very diligent and helpful in the collection of flight data. His rocket designs were very well thought out and successfully completed. Ruffin, thanks for all your help this week [I corrected his equations designed to compare the efficiencies of the various rocket designs so they worked]. You have awesome ideas and really understand the physics of your designs. I learned a great deal from you! Keep in touch and have a great summer!” Doug Richardson, National Board Certified Teacher;
    Explorations! 2007 at Iowa State University—Robotics using “Not Quite C : “Ruffin was a challenge for me to have in the class. He operated at a level that had me scrabbling for answers to his questions. I have no doubt that Ruffin will do great things. He constantly was talking to me, asking me for clarification on seemingly minute details, all to understand everything thoroughly. And for this I am amazed. I hope that this thirst will continue to inspire him in the sciences and throughout. This thirst for knowledge will allow Ruffin to fully understand any concept he desires, in his life.” Matthew Goodman, Graduate Student in Materials Science and Engineering.
    Poser 4 Computer Graphics/Animated Figures at Belin-Blank Center University of Iowa, Summer 2005: “It was a pleasure to have Ruffin in my class. He clearly possesses the technological skills that enabled him to quickly grasp the concepts of this very demanding piece of software. When situations began to get frustrating (who knew that animating mannequins could prove so challenging??), Ruffin was able to think through problems and create solutions with very little assistance from the instructor. He even took the time to record his own soundtrack to accompany the animation. Ruffin’s final piece, entitled “Bad Joke,” is a great example of Poser’s capabilities, or, rather, Ruffin’s capabilities, since this software wasn’t written expressly with young film-makers/animators in mind.” Instructor Gary E. Glenn.
    Bryce 4 Computer Graphics/Animation of Backgrounds at Belin-Blank Center University of Iowa, Summer 2005: “Once again it was my pleasure to have Ruffin in the class. He was again able to quickly grasp the concepts demonstrated and integrate them into his work, with only minimal assistance from myself. When there were problems with rendering his animation (Yes, render times can take what seems like forever!), the position of the objects (Getting that egg to roll took some effort, with remarkable results!) Ruffin was able to rethink his project and successfully accomplish the task.” Instructor Gary E. Glenn.
    Building Radios at Belin-Blank Center University of Iowa, Summer 2004: “On the first day, I saw Ruffin taking an especially long time to make his coil. Then I saw the beautiful result and realized why it was taking so long. He obviously takes a great deal of pride in his work, which produced some very nice results. His radios worked right off the bat. It’s even more amazing that he could do this right after his surgery (appendectomy). Excellent job, Ruffin.” Lyle Lichty, Professor, Cornell College.
    Up, Up and Away (Paper Airplanes) at Belin-Blank Center University of Iowa, Summer 2004: “It’s unfortunate that Ruffin had to leave us early (for appendectomy). He was doing a terrific job. His attention to detail was exactly what was needed to create good-looking planes. He was very kind and considerate.” Instructor David Dude.
    Topics in Geometry at Belin-Blank Center University of Iowa, Summer 2003: “Ruffin is a polite and thoughtful young man. I ate lunch with him on Thursday and we had an interesting conversation. I believe he learned as much as anyone. He did a great art project and he volunteered to help me untangle the Space Spiders.” Instructor Richard Scearce
    Everyday Physics for the 21st Century at Belin-Blank Center University of Iowa, Summer 2003: “Ruffin was a nice addition to this year’s class. His best work occurred while working with his team in the physics Olympics competition. His catapult was one of the best in the class. Ruffin has good problem solving skills. I enjoyed teaching Ruffin, he added greatly to the class. He asked good questions and offered several stories during discussions. I encourage Ruffin to continue with his pursuit of scientific knowledge and seek other opportunities to demonstrate his excellence.” Instructor Don Brauhn.
    Watershed Ecology at Wisconsin Center for Academically Talented Youth, Summer 2003: Instructor Dr. James Lorman, Edgewood College, Madison, WI. My project report is posted online at http://natsci.edgewood.edu/wingra/wingra_oaks.htm. Class included a 15-mile bike ride, and measuring Canadian geese populations.
    Oregon Museum of Science and Industry, Summer 2004: Redwoods Ecology Adventure and John Day River Raft Adventure, each including 28 hours of lecture/seminar discussions and 28 hours of field investigation.
    4. Describe other extracurricular and community activities in which you have participated.
    Summer 2007—volunteered 62.25 hours at my old parochial school checking information technology wiring in 2 buildings, worked on website construction and opening and setting up a computer lab of new Apple computers;
    Sophomore & Junior years—on the tech crew for theatre (3 plays @ year + coffeehouse + dances), setting up sound and light systems, handling wireless mikes, wireless receivers and routing their signals through a sound board, regulating sensitivities, using advanced sound cards and diagnostic tools with programs for theatre cues and more advanced tuning for sound effects. I plan directional speaker placement and use a computer to calculate sound delays in the various theatre spaces at school and in downtown venues by measuring various distances and accounting for the speed of sound.
    Roadside Trash Collection since age 10, with the N.E. Iowa Bird and Animal Club.
    Riverside Trash Collection annually at Linden Hill School, MA, along the Connecticut River banks.
    Farmer’s Market at Linden Hill School, MA, to raise money for the needy.
    Eradication of Invasive Species summer between 7th and 8th grades, 40 hours, pulling “garlic mustard,” burning it and graphing its location in Effigy Mounds National Monument, McGregor, Iowa.
    Diabetes Walk annually at St. John’s Preparatory, MN.
    Cleaning the School since age 10 and through ½ of 7th grade, repairing lights, desks, chairs, cleaning bathrooms and floors, afternoons and weekends with my father.
    Linden Hill School Assistive Technology helped my history teacher, Mr. Ratte, with technical issues with the new assistive technology equipment (computers, printers, projection of computer screens to the wall, Kurzweil, speech recognition technologies) as he began to use these in our technology and history classrooms.
    Documentary Film for Center for Autism and Related Disorders: I was interviewed about my “recovery” from childhood autism.
    Videography: Supported the presidential campaign of Howard Dean, and videographed his speech before 160
    people in the living room of my home in Waukon, IA.
    Linden Hill School Awards, May 20, 2004: The Peter R. Walter Gentleman’s Award, “presented to the boy whose personal manner is an unpretentious, positive influence;” The President’s Education Award from Rod Paige and George W. Bush “in recognition of Outstanding Academic Excellence;” The Pinewood Derby First Place Speed Award; The Most Improved Skier Award; The Green Team Intramural Team Spirit Award.
    Linden Hill School Awards, May 26, 2005: The Headmaster’s Award Silver Bowl, “presented to the boy who has demonstrated a quiet determination to achieve academic growth;” The President’s Education Award from Margaret Spelling and George W. Bush “in recognition of Outstanding Academic Excellence,” Leadership & Cooperation in Study Hall Award; Team member for the Rube Goldberg Team, sponsored by MIT April 9, 2005; Soccer Award, 2 poems to literary magazine, Outdoor Recreation Award, Softball Award.
    Horsemanship: Certified Horsemanship Association Levels I and II
    5. List SAT I, SAT II, and ACT test scores and date(s) taken.
    I am registered to take the SAT I in January of 2008. MIT is listed to receive my scores directly.
    6. List advanced placement courses, scores and dates taken.
    None.
    7. List below your technical skills level and academic background as of June 2008.
    I have not studied Calculus yet, but this year in Algebra II, working on my own, I used my Texas Instruments Calculator TIA-84 Silver Edition to integrate the solutions to some of my recent homework problems. My teacher Mrs. Huls understood what I had done and informed me I had used a form of calculus.
    I will finish Algebra II (current grade A) this year.
    I have not had the opportunity yet to take Statistics.
    I completed Biology (A) as a freshman.
    I am taking Chemistry (current grade A) as a junior.
    I took Physics (A) as a sophomore.
    I have learned what I know about Computer Science on my own or in computer club and in gifted and talented programs. I am familiar with C/C++ (Robotics), have explored Java (in computer club), but not the other computer platforms yet.
    See answer to paragraph 3 re: environmental science and other summer gifted and talented science studies since 6th grade.
    As a result of daily use, I am skillful with the usual Word, PowerPoint (with embedded videos), Palm, Windows XP, VISTA, speech recognition software (IBM Via Voice and DRAGON NATRUALLY SPEAKING), digital books, KURZWEIL, typing in Mandarin Chinese and pin-yin.
    In order to install DRAGON on my current 64-bit laptop, I brainstormed and executed a partition of my VISTA so as to also install Windows XP where I run my DRAGON. Up until Christmas break I had been frustrated in executing my idea to “double-boot” VISTA and Windows XP only because Microsoft is withholding the raw installation software I needed; I knew my idea should work, and now I’ve managed to research and implement a solution which I’ve posted as “RXW “ to the Web at http://forum.notebookreview.com/showthread.php?p=2839637#post2839637.
    I also use Google SKETCHUP, BRYCE and POSER to make 3D architectural drawings and to animate figures and backgrounds in video. I have designed a free-standing materials racks for my father’s factory. My designs are posted at http://sketchup.google.com/3dwarehouse/search?uq=09925683877591067159 as “Calloipe, Larg home/skii lodge, TV-CRT, Piano, Mead Hall and Beowulf Ship by ruffsl”
    When our new school building addition was being designed, I suggested the use of arched windows recessed within the overall rectangular façade to tie the new addition to the existing building’s overtly arched windows. By making my suggestion to the right adults, my suggestion was accepted, and incorporated into the builder’s blueprints. The new building is currently under construction, and I should be able to see it built as I envisioned before I graduate.
    8. Where did you hear about RSI?
    I first came to the MIT campus as a visitor from Linden Hill School to see the museum, and came back later as a Rube Goldberg team member for Linden Hill School on my fourteenth birthday, April 9, 2005. While exploring the MIT website, I discovered information about RSI.









    DRAGONFLY. TOAD. MOON.
    A POEM
    By Mary Jane White

    Mary Jane White
    402 Allamakee Street
    Waukon, Iowa 52172
    563-568-4038
    mjw3@earthlink.net

    May 1, 2008








    DRAGONFLY. TOAD. MOON.





    Submission to 2008 VOICES OF ILLNESS, SUFFERING, AND HEALING

    May 1, 2008



    DEDICATION
    To My Son, R________



    Love is created, hath a sensate name . . . .

    From form seen doth he start, that, understood,
    Taketh in latent intellect—
    As in a subject ready— . . . .

    Look drawn from like,
    delight maketh certain in seeming . . . .

    Who well proceedeth, form not seeth,
    following his own emanation.
    There, beyond colour, essence set apart,
    In midst of darkness light light giveth forth
    Beyond all falsity, worthy of faith, alone
    That in him solely is compassion born.

    (Guido Cavalcanti, tr. Ezra Pound)








    CONTENTS

    DRAGONFLY. TOAD. MOON. 5

    Tantrum 6
    Wet 7
    Park 8
    Stick and Strings 9
    Order 10
    Sleep 11
    Talk 12
    Worse 13
    School 14
    Friend 15
    Time 16
    Home 17
    Window 18
    Empty 19
    Camp 20
    Zip Line 21
    Dusk 22
    Hill 23
    Patience 24
    Sport 25
    Refractory: All Three 26
    Near 27
    Wheel 28
    Cursor 29
















    DRAGONFLY. TOAD. MOON.

    A POEM









    Tantrum

    A practiced love of sameness:
    As in this wild flapping and pacing . . .
    Grunting is how he speaks to me.
    A thing he wants is somewhere
    In the world—find it! by
    Looking
    Everywhere. At all cost, avoid his tantrum.

    A persistent love of sameness:
    As in never move the salt and pepper . . .
    As he does not speak to people, do not move
    A thing in his world.
    This will avoid his asking
    Where?
    This will avoid his tantrum.

    A perseverative love, of sameness:
    As in do not change anything . . .
    As he does not speak to people, even me,
    A thing in his world
    He may love—but whom he will avoid,
    By looking
    Elsewhere. And avoid his tantrum.



    Wet

    To wash his hair was some danger.
    He might thrash the tub wall with his
    Head. How hard he hated any wetness,
    Or to change his shirt: led me to drip water
    Down his back, on purpose, once. This,
    More than once. More than once. I remember:
    Once he cut himself on bottle-glass,
    And no more felt the pain than if his blood
    Were water: was how I learned this.
    Blood was nothing until its wetness would
    Somehow bother him, and he’d undress.
    To free himself from what?
    Nor run for comfort, nor cry, but only wet
    Made him return, complain—not the cut



    Park

    My son toddles to four swings,
    Pushes them until he brings
    Them into a severe alignment that pleases him.

    How long his own severity attends him;
    How little he notices or cares for other children—

    Except their play disrupt his careful pattern
    Of empty swing and empty swing,
    Of crossing arc and arc of thing
    And thing, two pairs doubling

    That leaves three other children out,
    but leaves him sing.



    Stick and Strings

    One morning his crib is an open handful of pick-up sticks
    Around his fallen mattress. In how many nights?
    He has unwound the metal bolts and nuts and washers
    And drawn out the several rods that help hold it together . . .

    A waist-high web of string
    Meets me this morning, but
    Where is he gone now? Sleeping
    Or walking with a string’s end in his fist?
    I see he has walked from doorknob to doorknob
    To cabinet door to doorknob to cabinet door, every one on the floor.
    His pattern of walking is woven behind him, so hard and carefully knotted
    At each knob and handle and drawer pull, there is no advance possible
    Toward him. It is a morning’s work to undo this
    And a tantrum and a resistance not to be
    Met with, I hope, too very often.
    I hope he does not repeat this.
    As I fear he will repeat this.
    I do not want to repeat this.



    Order

    We could not go out. He would not dress,
    Or be clothed, or stay clothed, or tolerate
    So much as a sock, or stitch, or suffer
    A single thread to cling upon his skin.
    Nor eat, nor let us eat, or sleep—
    Either of us . . .

    Having wrestled with my angel
    Forty minutes, or more,
    To our mutual exhaustion,

    Having dodged a curtain-rod
    He’d thrown at spear-like
    Speed off a stairway landing—

    My heart pounding,
    And his head soaking wet—
    The sweat of his exertion

    Brought up baby-curls—
    I thought, as swaddling might
    Calm a jittery newborn,

    That same might work
    In this pinch—with a still
    Naked toddler: so

    Having done that, I hauled him
    Several blocks, downtown—
    To our Café,
    whose cheerful waitress

    Observed we must have been
    Swimming . . .
    It was
    Summer, so I agreed . . .

    I just wanted to order
    Something . . .



    Sleep

    I did not sleep. When
    That bedtime came and he banged
    His crib, paced all night in there,
    Babbling one syllable in his trance,
    Happy it seemed to me, but oblivious
    (I learned—oblivious), I read: the stacks
    And books ordered in—in what scrap
    Of time—by mail . . .

    Echoing Kanner, Bettleheim wrote:
    Mute autism was all the child of the family’s
    Death-camp atmosphere,
    Whose refrigerator mother—nice sound
    Bite, that!—stands humming in the kitchen
    Corner . . .

    For such damage done by language
    Should Dr. B. not be
    Marched out in blindfold?
    Sign that he was simple, blind—no,

    Enough that he wandered: free to plagiarize
    Other subject—harmless ones,
    Old European fairy tales,
    And carelessly . . .


    Talk

    You cannot imagine what all I heard,
    What little got back to me—Mary Had A
    Little Lamb—and this likely only
    A little of all it was—gossiped about
    Our single stoplight, rural town:

    Forty hours’ work a week, face to face,
    Across a red-blue plastic table—adults
    And nothing but a baby in tiny plastic chairs.

    Do this, do this, do this—the clean, clear repeated
    Invitation to imitate—and No! (this is
    Information, child), and again this: Do this:
    Sit, look, clap, touch your nose, your unseen
    Ears, pillow, window, color “yellow.”

    Fifty-two weeks a year—two solid years
    With no Christmas, Easter, summer,
    And with this, he began to speak . . .

    Like a parrot trained to talk
    As the evaluating speech clinician carped . . .



    Worse

    This was training my loved and long-awaited child
    Like a seal
    --better by half, with less than
    Half a chance, than the alternatives—

    Also researched:

    The black-and-white,
    Awful documentaries—worse
    Than six-year-old, precocious
    Elizabeth Bishop’s
    February, Nineteen-Eighteen
    National Geographic:

    A boy with his hands padded in bandages,
    Harmlessly battering his helmeted head
    In care;

    Or the unsocial male and female
    Teens, seated on a common bench
    In summer, oblivious to each other,
    In their large, unlovely adult bodies—
    Gazes averted from each other,
    And from the relentless cameras;

    Or the starched-faced toddler
    First tracing sun-motes in her palm,
    Making an identical gesture—in super-
    Imposition—years later—
    No change in her behavior, her solitary
    Leisure in her thirties, in the quiet or noisy,
    Clean or filthy State Hospital—
    Court-ordered to be no more of . . .

    Or the young man later busy looping yarn
    To hook in canvas, seated on the common sofa
    At his group home—the ones there are
    So few of . . .

    School

    Forty weekly hours’ healing work was
    Better by half than the available alternatives:

    Public school authorities wanted
    To teach him sign—that beautiful,
    Fluid language of the deaf, that fleeting,
    Moving language drawn upon the air—
    Which makes a picture in the mind . . .

    Which he could not do, nor
    Attend to—when his attention fixed,
    But upon a concrete picture, or solid
    Things—
    Nor would he be expected
    To speak to me that lovely, fluid way
    As there was no thought, no plan
    To teach his mother to see, or listen,
    Or imagine from the air, and after all
    We were not deaf—

    Yet, out of caution,
    I let them take him off to school—
    Just three—so they could play with him.

    A video camera stationed in the dunces’ corner showed
    He was not prompted to mouth a single word.

    So when
    The stubby bus brought him home,
    After six hours’ day of school,
    Two women, in two three-hour shifts,
    More on weekends, taught him
    To speak our common language, and
    How to think in common ways:

    Do this, do this, like a puppet, first:
    Woodenly—at each request;
    Woodenly, at first . . .

    Friend

    As woodenly, first, his father sat
    Before me in his despair of our ever
    Teaching him everything?—when?
    There began to come a few
    Sudden fluencies—until
    He became quietly common.
    Over one more year’s working time, and
    Entered Kindergarten . . .
    . . . which, of course, was not
    The end of it—as he approached
    Each potential playmate with his
    Single, commanding salutation:
    Friend, Come play with me!
    not looking
    Up from whatever thing
    Held his fixed attention
    until with further,
    Careful teaching: Touch Joe, touch Jim—
    We taught him—from photographs—
    Snapshots arrayed across his desk—each
    Personal name,
    and drummed upon
    The odd, to him, abstract notion
    That in our common world—Some
    Will be your friends, and some
    Will not . . .



    Time
    Then came
    Latency: the beautiful, quiet
    Years of going back and forth to school—
    Simple enough, so:

    In science, in school,
    I, too, loved repeating it—
    The experiment—
    A simple miracle:
    Crystals growing
    Down a string—
    Suspended
    From someone’s pencil:

    Down a tall jelly-
    Glass, brought
    Unbroken
    From home—one
    Printed with simple
    Line-drawn scenes of
    Colonial Williamsburg—
    Huge, delicate-spoked
    Wheels, and passing
    Lanterns—a lady’s
    Piled curls—the jelly-
    Jewel backdrop
    Eaten up and gone—
    So simple—enough:
    Solution of sugar—
    We made
    Supersaturate—
    Shoveling it in:

    Also into
    Pale iced tea, and
    Clouding each
    Crystal goblet—
    If unreprimanded—
    At the holiday-
    Crowded dining table—and

    Stirred and stirred
    Stubborn sediment
    Away to blur—

    Time evaporated:
    That worked as well
    With salt.



    Home

    Back then we saw the house that is our home now. Stepping into the car, with a realtor. And pointed it out.
    If I had my choice, I’d make my offer on that one. It. The brick mass. On the corner.
    Ah, yes, admired the realtor, that one will never be for sale.
    And said straight out, If it were, you could not afford it.

    Autism intervened upon this story . . .

    Then, as life re-righted, when anything could happen again,
    I thought, What else could I make happen?

    My son, then six, went with me.
    He said it was like walking into a church.

    Whose interior walls were white. Every wall we saw.



    Window

    Second visit: we got no further than the glazed-over terrace at the back door.
    The woman of the house could not walk, and was seated there.
    Surgery on her heel.
    We glimpsed a dining room, behind the man of the house. He was very gracious, of course, but unyielding.
    So wonderfully solicitous of his hobbled wife.

    Third visit: my son and I stood under a low stucco outcropping—a second floor nursery, as it turned out, supported by two limestone columns—ornamented, but unclassically—carved with a double band of tulips:
    A band of buds, below a band of stone, open cups.

    We walked through the whole house, once,
    Once, room after room, all white, all with stunning windows . . .

    Of metal bar, each bore a central medallion—more tulips—bound by a narrow, narrow border of green-acid glass:
    Crackled clear glass that looked like winter ice, or falling rain.
    And sleet, a pebbled opalescent white.
    A bronzed opaque black.
    A little real green,
    A little pale yellow.



    Empty

    Then it came to us, our white elephant.
    It came as four apartments. My son and I could only afford to live in one of them—downstairs.

    My son slept in the library, a north room with no closet.
    I slept in the original kitchen, another north room, without heat.

    Its attic—crow’s nest—was empty.
    The maid’s room was occupied—Do Not Enter—my renter’s storage flickered under a loopy neon ring, serviced by a run of stapled conduit.

    My son, my renter and I were in the basement, waiting out a tornado warning. I opened the subject of buying a house—her own home.

    Then it was empty enough to touch, to enter the master bedroom and linger before the octagonal bay of four double casements, twin to a formal dining room below.

    My son wants this room. I want this room. It is becoming our house now.
    We do not always act as if we were in church.


    Camp

    My twelve-year-old walks into his summer dorm room at physics camp. He is sullen. He says it is an ugly room. It is.
    He needs to live here, just a week.
    He appeals to me pointedly: It only has white walls. This is an argument he’s heard, and knows should sway me.
    They might have put a little color into it.
    I sit on the low, narrow bed. To talk.
    I say everyone who moves into a dorm moves away from home.
    I suggest now he could buy posters?
    He doesn’t care to.
    I suggest his roommate might bring posters.
    I remind him he will only sleep here.
    I insist it will be dark then.
    He is not philosophical.


    Zip Line

    Summer’s end: my twelve-year-old and friend are camped on the second story side porch, with cats.
    They are eating up there. They have even dragged up the cat bowls.

    Also, a spool of kite string, and their colored plastic wheels, with snapping plastic sticks.

    One end of string loops down, across the yard, to a fence.
    There is an elegant second string attached, to facilitate retrieval.

    All afternoon the plastic wheels of a changing contraption travel back and forth, up and down, the singing string they call their zip line.



    Dusk

    There are no proper places in this house for televisions.
    All the proper places are taken by fireplaces.

    I take down our latest volume, to read a chapter aloud to my son and his fidgeting friend.

    Now that the renter’s entry is closed up . . .
    Now that the stairwell is opened . . .
    Now that the hallway is free of odd doors . . .
    Now that the doors are back in their appointed places, and open . . .
    Now, anywhere I choose to sit in this house, I can see out the windows of other rooms.

    Living room—sitting by the south wall’s fireplace, my eye travels easily out the north windows of the library—to the cool, purple rhododendron—each spring.

    From the dining room’s octagonal bay—low sun strikes the tiny, red iridescent corners of a sideboard’s glazed upper cabinet doors.

    Above a table, the central white petal of each glass tulip glows—a steady white flame—as the sky darkens.

    At dusk, the glass becomes, burns opaque.
    This is dinner hour, on the western prairie.

    Hill

    As I wrote, this was latency.
    And then, he
    Was never going to learn to spell, although
    We spent every breakfast working at it.
    Dyslexia—another awful word,
    But commoner—intervened:

    At twelve, just past Christmas, at the age
    English cabin-boys signed on
    The Royal Navy—the age—we researched it—
    Marquette left his wilderness home
    For college—for Quebec—
    He moved away to board in Massachusetts.

    I drove to see him, once or twice a month.

    Two years’ school, in blazers and khakis,
    And school-colored ties, he learned to listen
    To his laptop computer—read for him—

    And how to talk—slowly, in phrases, please—
    Into his headset microphone—so his own
    Words would rise up in seconds flat
    Upon his steady laptop’s screen: he learned
    To mimic Steinbeck and Hemingway, and
    To print his papers, by pressing Print,

    And learned to ski—a flashing solitary—
    Down night-lit Berkshire’s Black Diamond Trail,
    To hike Monadnock, and the gentle Linden Hill . .


    Patience

    Beyond The Name

    You were born
    A girl-child
    To grow into
    This Christian name,
    Which will be
    As a shell
    To the tender foot
    Of a snail; in it
    Your heart will
    Go on beating
    And glistening.

    Beyond The Game

    After the cards
    Are all fallen
    Into their
    Rightful places,
    After the pure
    Accident of
    A shuffle,
    You will see
    The hearts
    Line up
    With the hearts;
    The spades,
    With the spades.

    Beyond Luck

    Then persist
    In nothing:
    Water will erase
    Your name, your
    Heart. Wind
    Will carry you
    Away. Everyone
    Who ever loved
    Or remembered
    You—though
    They persist,
    Or do nothing—
    Will follow
    Or go before you,
    The same way.



    Sport

    Away,
    He learned to play
    Within a baseball team,
    The year his teachers’
    Favorite, unfavored
    Boston Red Sox,
    Won the Series.

    Baseball and golf! became
    His own preferred, predictable
    Games of discrete events:
    Do this, do this: these allowed
    Him ample room for individual
    Acts, feats of skill . . .
    while avoiding still,
    And still ignores, the social fluidity
    Of soccer, or basketball . . .



    Refractory: All Three

    A Benedictine wearing a teal-blue and yellow, short, down-jacket,
    And below that, a black scapular, his fore-apron and back-apron,

    And the brisk skirt of his cassock. A blue and rather chunky bicycle
    Propped at the innermost, blue door of the courtyard. Another

    Unmoved bicycle with wide-winged handlebars in the monks-only,
    Quadrangle garden, into which we may only, but openly, gaze:


    These are The Rule’s customs of privacy and un-simple welcome.
    Our square refectory table placed at a window that opens onto


    The dead garden. Our son, their student, and we, are here—are guests here,
    And this is their hospitality: Order, Benedictine of the Knights Hospitalier,

    Order of St. John of Jerusalem, Order of the Knights of Malta who fled, fled
    To the Imperial Russian Navy, that extended them all a certain, welcome

    Hospitality in the East, as Napoleon moved against them. A welcome
    Of ancient and heroic tenor: One who comes so as to please another.



    Near

    At fifteen, he is become our perfect scholar,
    With good behavior—yet—
    As caution finds its expression
    In this part of the Midwest . . .

    He’s come nearer home at least—
    This warm, odd, dry winter of

    Russet-grey twigs of denuded sumac—uppermost
    Twigs.

    St. Croix, along the Great River, St. Paul, St. Michael, St. Cloud—
    Exits

    Off I-94—the hourly bells—ringing out from Marcel
    Breuers’

    Sculpted concrete banner (spiral back stair) and honeycomb
    Façade.

    Hand-sized pairs of red squirrels’ busy to-and-fro pattern:
    Gathering.

    Whether winter proves warm and odd, or dry, the same
    Behavior.

    Dark-grey, small, square offset paving tiles everywhere,
    Granite.

    Over these, each weekend, I enter guest rooms of the Abbey
    Monastery . . .



    Wheel

    He works his hardest, as he ever has,
    Under strict, kind Benedictine tutelage
    Of black-robed monks and lay oblates
    Near Minnesota’s German-American
    (God is laughing) St. John’s Abbey.
    And so am I, as I love, have my living Isaac:

    Who is learning ordinary, ancient Algebra,
    And new helical, chemical Biology—
    Dictating his assigned paper—on Fragile X—
    One genetic disorder I remember
    He was tested for—
    This makes me laugh and sigh . . .

    As I am reading him Darwin’s
    Autobiography—
    in an alcove, Old Seminary:

    As much as ease—as any odalisque,
    His bare ankles, his long feet,
    My down coat—full length—the fat, green sofa.
    Long fingers—cradling a pillow . . .

    We go back to where he fell asleep . . .
    Don’t stop! . . . No, I heard you read that. Leave
    His head lie propped on a cushion—
    Heels—easily beyond now—the other arm’s end.

    Hell! Greek and Roman history are hard enough
    For anyone—to dictate well, or spell.

    Theology is:
    Practical lessons in how to make time
    For some activity you love.

    Ceramics: where he likes most to work,
    At length, entranced, seated at the wheel—
    Functional, centered spinning—his kicking, kicking
    Heel—shaping lightweight cups, a set of plates,
    His glazed, shallow dish for loose pocket change,

    A vase that flows out and, breathing, closes in
    Upon what is now—a nearly perfect lip.



    Cursor

    Fall again. We hike on marshland
    With his camera. He found
    A dragonfly at first,

    And then a toad, the exact
    Sandy brown of the pathway’s
    Ground—to draw attention to.

    Though I missed them,
    Digital captures in his camera
    Showed me—the dragonfly—

    Slow, old, or hurt perhaps,
    It crawled, flipped over, righted,
    Wandered off into the grass . . .

    His toad was hard, solid,
    Still and small. Still,
    He saw it, and placed it gently

    On a bleaching leaf, for a good
    Background, for contrast,
    As if it were an old, green

    Screen for the cursor—when
    A cursor was how we taught him
    What a finger is to do in pointing:

    Make a path for the eyes of two,
    Or more, to follow. It dawned
    On me that night—the first

    Time—fifteen—he pressed
    My shoulders down to bring
    My eyes between the leaves

    To turn them toward the moon—
    A crescent at his fingertip . . .
    At one, and two, and three,

    We’d lost forever that wonted,
    Pleasing show—of his
    Early childish lisp—

    His beetle in a haystack—
    But, O, and yet, had this—
    No—would find these:

    Dragonfly. Toad. Moon.

    By Blogger Mary Jane White, at 6:56 PM  

  • Suzanne: Yes, you're absolutely right, expectations make a huge difference in a family.

    Mary Jane White: Thanks for sharing your son's writing and your own. In my extended family, there are two autistic teens who will be starting college this year; I see many similarities between their writing styles and your son's. Your poetry is quite vivid and gave me fond memories of yarn spiderwebs, strung from doorknobs and drawer pulls just as you described, and greatly enjoyed by a non-autistic little sister. Whether it's a delightful early-morning flight of fantasy, or just a nuisance to be cleaned up, all depends on one's perspective...

    By Blogger abfh, at 7:33 PM  

  • You only need to watch some of the supposedly recovered kids on video to realize what a crock of shit this "recovery" stuff is.

    By Blogger Joseph, at 8:17 PM  

  • Is anyone here a Simpsons fan? The issue of this or that form of quackery causing “recovery” always makes me think of the Simpsons episode where Homer wanted to buy Lisa’s alleged tiger-repelling rock. (“It’s just a stupid rock. But I don’t see any tigers around here, do you?”)

    I think the root of all this is the belief that autistic people are by nature utterly broken, and thus unable to grow and change, just as they are supposedly devoid of most other human faculties. This assumption determines the conclusion. The idea that autistic children actually grow up, like any other child, is thus not considered. People grow and mature and learn; soulless husks do not. Thus, when people notice that an autistic child at age 10 can do things he couldn’t do at age 3, it MUST be because he’s less autistic than before.

    A related problem has been that so much autism research has been of children, who naturally are going to lack many skills that are common to adults. As an adult, I can do all sorts of things that I couldn’t do as a child, including things autistics allegedly can’t do, and that’s true for every autistic adult. If our knowledge of neurotypicals all came from neurotypical toddlers, we’d conclude that neurotypicality invariably results in illiteracy and a total loss of bladder control. The fact that my 20-year old sister can read books and use the toilet all by herself would be hailed as a miracle of science.

    This is aggravated by the fact that, in my experience, autistic people often hit social milestones at a later date than most other kids- for instance, until the middle of elementary school, my only close friend was my grandmother. If you studied me at age seven and lazily extrapolated into the future you’d conclude that I was incapable of forming peer relationships, and the fact that today I have good friends my own age would be taken to show that I had somehow “recovered.”

    By Blogger John Markley, at 5:25 PM  

  • My mom has this friend who does healings using energy and auras. The friend claims she's cured some people of autism. She did a healing on me. She said it could take away my sensory processing problems and enable me to eat 'normal' foods like everybody else. I was really excited and hopeful. She barely touched me she just mostly ran her hands over the auras on my body for an hour. Afterwards she said I was cured. But I wasn't, I still can't stand to eat tomatoes or spices or anything. It was very disappointing.

    I can live with most parts of my ASD okay at this point. but if there was a cure for my sensory problems? I'd take that cure in a minute.

    By Anonymous Ekie, at 12:48 PM  

  • a"No biological etiology has been proven for any
    psychiatric disorder in spite of decades of
    research. ... Don't accept the myth that we
    can make an 'accurate diagnosis.' ... Neither
    should you believe that your problems are due
    solely to a 'chemical imbalance.'"

    – Edward Drummond, M.D.
    Associate Medical Director
    Seacoast Mental Health Center, Portsmouth, NH

    By Blogger Scream, at 10:51 PM  

  • The term autistic has been misused to describe persons with anything from cerebral allergies and schizophrenia to attention deficient disorder and post traumatic disorder. Sadly, few doctors and educators understand true cases of autism to make a correct diagnosis. So they go with the latest media driven flow. Pick and choose from a broad and ever expanding spectrum. Or worse, they guess..and people like Mary Callahan (fighting for Tony) and Jenny McCarthy, total fraud, DON'T help. These women NEVER had children with autism! Talk about adding confusion to the spectrum....Callahan's kid had a prolonged severe allergy to milk, which caused brain inflammation, thus presenting with autistic symptoms...McCarthy's kid had some pretty severe seizures, regressed, then, with the introduction of seizure meds, are ya ready for this....! He improved....ooopppss..sorry, Jenny, that brilliant woman, "cured" him...my bad. How dare I question the integrity and dignity of such an upstanding fart on camera and pee in public celebrity....her journey must have really "kicked her ass" because after all, a two year stint with autism, before your kid is cured, is, well, for a celeb, a long journey. She must be an expert now, bless her soul. Where do I send her organization a check? Or is her son now a crystal or indigo child again?

    By Anonymous Anonymous, at 9:14 PM  

  • Talk about your Cretons from Mars...what planet are you from, or is it that you came from under a rock?? Kids are recovering everyday. Wake up to what is going on all around you...

    By Anonymous Anonymous, at 3:11 PM  

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