Image by Photo by Me-Liss-A (flickr.com)

This question posted to the forums: “What’s the smartest thing anyone ever said to you about your autistic child?”

Said one respondent who’s 3-year-old daughter was diagnosed two years ago, “She is progessing well and although she still shows signs of autism on a daily basis, my wife and I sometimes question the early diagnoses.  With that said, someone once told us that whether it is autism or not, she still has some developemental issues which need to be addressed.  ‘Concentrate on those things as opposed to getting all hung up on the bigger autism diagnoses.’  This comment helped us do just that and feel as though it provided a bit more focuse on her treatment moving forward.”

“Once our now-17 year-old son was diagnosed with autism one of the doctors who saw him said that if he wanted to do something, he would do it,” said another. “The secret was in motivating him to want to do it. I never forgot that and it was so true. It may sound trite, however, I was coming from a place in my mind that said you can’t reach
people with autism (and I) learned that oh yes you can!”

Another was once at an autism conference with a fabulous keynote speaker.  “She was an ABA specialist and author and had worked with numerous kids over the years.  She said that every time we take our kids out in public we need to remember all the eyes that are watching us.  Not in a negative way, like we’d better be perfect in all we do or else.  But she said that sometimes it’s more important to consider the impact and impressions we leave on others than to work on every single behavior our kid is exhibiting.  As people see us, they see how we value our child; how we respect him
as an individual and his inherent worth to us and society.  As others see how we value him, that directly affects how they see people with autism and disabilities in general. I try to be more aware of my interactions with my son in public, not just for his benefit, but also to teach others around us. For example, if he’s noisy or having a hard time staying calm somewhere, I normally try to speak to him calmly to defuse things.  In public, I also try to narrate and
explain his feelings and the reasons for the behaviors, allowing others to overhear so they can understand.  Hopefully, the next time the other people near us see someone in a similar situation, they would remember and understand, say, that maybe he’s just tired today or he’s feeling a bit stressed.  It’s better than just seeing
someone that seems strange and maybe a bit scary and not knowing why.”

And the smartest thing said to this respondent: “‘So, now you know. Make the best of your knowledge.  It is a blessing if you treat it as such.’”

My own smart comment came from a doctor, said to Jill way back in the hospital when Alex was just a year old: “‘Life isn’t a matter of having a good hand. It’s a matter of playing well the cards you’re dealt.’”

***

LinkedIn’s groups are excellent places to pick up advice and contacts professional and otherwise. I’m a member of Autism Advocates, Linked to Autism, Autism Speaks, Parents With Patience, Autism Advocacy, Special Education Innovators, and Special Olympics, among others.

I picked up some great homework tips after my talk earlier this week at the YAI Conference in New York, (my topic: “Educating the Educators,” or how teachers can work with special-needs parents):

- When writing, let the student use bright-colored paper, such as yellow, pink, or orange. It improves concentration.

- Also when writing, let the student listen to music they’re well familiar with “and have listened to a thousand times.” In Alex’s case, this would be anything from “Elmo.” Also, it  improves the concentration, apparently, and helps makes writing come more naturally and fluidly.

- For math, use props student is familiar with. I’ve tried clothespins and Lego blocks, but one Alabama teacher who sat in on my session said I should use candy or pieces of food Alex is especially familiar with. I have considered having him count Saltines and letting him eat them when he gets the math problem right. She suggested pieces of his dinnertime hot dog.

My session in general, was a great chance to meet other teachers and parents. They loved the story of how Alex fooled Jill one night when she’d taken him into the bathroom to lecture him about bad behavior. She was holding the door closed; he wanted to open the door and leave. So while she read him a riot act, he got all demure and coaxed her into singing a clapping song he’d learned in school. She figured, great, I’ll sing too, and when she moved her hands to clap along, he grabbed the knob, opened the door, and fled.

I also found Prof. Pat Levy’s session interesting. She teaches education at Manhattanville College in White Plains, N.Y., and was lecturing yesterday on how teachers should keep careful records of all parent/teacher conferences. Interesting to hear the other side…

YAI is also establishing an online resources center, including Web-based video.

***

FUNDING FOR THERAPIES: For Jake’s Sake is a 501(c)3 charitable corporation, created to raise money and provide the funding for children with autism to access effective therapies they otherwise could not afford.

(Image Credit: YAI)

I was speaking last night to the director of the new YAI Autism Center, for which I’ve written two blogs. “Beautifully written,” the good doctor said of them, so naturally I thought he was a pretty sharp guy.

“I’m curious to see how the blog will develop,” he continued. “It seems that often when a center like ours has a blog, it finds itself having to take some stand. I was wondering what your views are?”

Oh. In the whole cause-of-autism thing? Yes.

I have no stand.  I usually answer that better minds than mine are working on this. Premature birth? Vaccines? Phases of the moon? All are good candidates. I’ve read up on the vaccine/mercury versus non-vaccine/mercury debate, most recently in Autism’s False Prophets, and I haven’t settled on either side. I am certain, however, that something’s responsible for Alex still liking “Elmo” and “Dragon Tales” at nearly age 11.

So I dredged what I could recall from Alex’s vaccination schedule from back when Bill Clinton was still president and Godzilla was the hot summer movie, but honestly, when your first baby lives in a plastic box and you must leave him in a hospital night after night and you still have what will be a full year ahead of you of more of the same, the shot slate doesn’t stick in your mind — especially if it’ll be a long time before you realize that slate’s potential importance.

I do know what side I fall on in the debate: on the side of not believing you have a lock on the whole truth, and not on the side of making death threats to those who publicly oppose your views. The unending ability of people in a terrifying situation to fragment, takes your breath away.

The doctor talked to me about the latest research and I agreed it sounded promising, and I assured him that if he stumbled across a cure I’d be one of the first in line. But, last I leaned on the crutch of the Layman Parent Writer:

“My opinion,” I said, ”is that I fear for Alex’s adulthood.” That certainly seemed to be something we agreed on.

***

Visit YAI’s Autism Center Community here.

“Toddler Brain Difference Linked to Autism,” from CNN.

Researchers find first common autism gene, from Reuters.

(Image: taoism.about.com)

Yesterday, January 7th, was the first day in the trial of Karen McCarron, who is accused of killing her 3-year-old daughter, Katherine, by suffocating her with a plastic bag on Mother’s Day weekend in May of 2006. WMBD/WYZZ TV reports that

McCarron’s husband Paul was the first to take the stand. He testified that McCarron never accepted their daughter’s condition. McCarron had even suggested several times that they give their daughter up for adoption. Paul also said he was aware McCarron suffered from “on again, off again” depression. Under examination by the defense, Paul McCarron admitted he was aware of a history of mental illness on Karen’s side of the family, including her father’s bi-polar disorder. But he said her depression never manifested into any type of noticeable physical or mental problem.

WTHI TV (Terre Haute) reports that Paul McCarron “testified today that his wife was obsessed with finding a cure for the little girl.” It’s not clear what sort of “cure” Karen McCarron was “obsessed with”; in regard to treatments for autism, the word “cure” is often used in regard to biomedical treatments. A January 4th news article by David Mercer quoted Dr. David Ayoub, described as a “a leading supporter of a controversial theory that mercury in early childhood vaccines causes the disease,” said in interviews in 2006 “that he had occasionally talked with Karen McCarron after Katherine was diagnosed with autism.”

The prosecution, WMBD/WYZZ TV reports, plans to show that Karen McCarron

….“concealed the homicidal nature” of the three year old’s death. The state said in their opening arguments McCarron, a Clinical Pathologist, by profession knew death. They said only when she didn’t feel a heartbeat did she remove her hands from the plastic bag covering her daughters head. The prosecution says McCarron killed her daughter, brought Katie’s body back to her home and staged the body to look like the 3 year old was asleep – fooling McCarron’s mother and family present in the house. The prosecution says McCarron left the home to dispose of the murder weapon – telling her family she was going to get ice cream at the Morton Kroger store. The prosecution says when she returned, she went upstairs to check on Katie, screamed, and pretended to perform CPR on the dead body.

The defense plans to use an insanity defense.

The defense laid the foundation of a mentally ill woman, telling jurors to listen closely to the testimony. Defense Attorney Marc Wolfe said the state only presented a summary of events, and that testimony from McCarron’s mother, doctors and relatives will shed light onto her mental state at the time. McCarron has spent the last year and a half at a mental health facility. Wolfe says McCarron’s video taped confession (given at OSF Saint Francis Medical Center in Peoria) will play a crucial part in the trial, but added the confession must be consistent with the physical evidence presented.

Other witnesses called to the stand included Lisa Hill, Katie’s occupational therapist from Easter Seals:

She testified Paul McCarron seemed to be more interested in Katie’s health. She said it was only because Paul was more hands on then McCarron, and added McCarron still seemed to be a loving and concerned mother. She said McCarron told her several times she thought Katie was doing worse in therapy, but Hill said she had seen an improvement.

Two young women who were to be full-time caregivers for Katie testified; both had begun to work at the McCarron’s household the week before Katie’s death: “Both testified McCarron conveyed to them that she thought Katie’s condition was getting worse. Both women said they thought Katie was in a much better condition than other autistic children they knew.”

I will be posting daily about Karen McCarron’s trial, which is expected to last for a week and a half. I first posted about Katherine McCarron’s death on May 17, 2006 and have since written regularly about her. The case has generated a lot of feeling among anyone who hears about it (as a recent discussion here attests) and a lot of my own feelings are wound up in my writing about Katie. I met Katie’s grandfather, Michael McCarron, at an October 26, 2006, conference on autism and advocacy at Fordham University in New York city (the conference was organized by my husband, Jim Fisher; some 300 people attended, and at least one speaker mentioned Katie).

There are photos of Katie here: She was “beautiful, precious, and happy,” and that is why the pink “Katie ribbons” have a pattern of hearts and flowers on them.

Advocacy. Witness. Hope.

Why I’m mentioning those words to start this post off will be apparent by the end of this post. In the meantime, advocacy, witness, and hope seem good terms to bring up in regard to an article entitled, Ignorance of autism is ruining lives in the October 29th Scotsman, and to a new campaign in the UK, Think differently about autism. The Scotsman cites some figures from a survey in Scotland:

(1) 59 % Scots “wrongly believe there is a cure for autism.”
(2) One-third think that autism “affects only children.”
(3) Almost two-fifths “wrongly believe most autistic people have special abilities such as the character played by Dustin Hoffman in the film Rain Man.”
(4) 1 in 8 people think that someone displaying “typical autistic traits” has a disability—-the rest are “most likely to think they were drunk, on drugs or just ‘odd.’”

Those results make me wonder what the figures among people in the US might be, especially in regard to the fourth figure cited: What do people think when Charlie is humming in the grocery store, or pacing with his head down, or saying “Jim, it’s okay” a dozen-fold times?

I would venture to say that, of late here in New Jersey (where the prevalence rate of autism is 1 in 94), when Jim or I have simply said “autism,” the stranger who was glancing at Charlie has more often than not responded “oh yes, my [relative/friend/hairdresser/cousin/etc.] has a child” (I’m not making up the “hairdresser” response). Or, if we don’t immediately say “autism” or “autistic” (we tend to say both), sometimes the other person says the word before us.

It is difficult moments in public—-the unkindness of strangers—that the The Scotsman article particularly highlights:

Carol Evans, national director of NAS Scotland, said: “This lack of knowledge devastates lives. One woman diagnosed with Asperger’s syndrome described being forced to leave her local darts team, because rumours were spread that she was danger to the public.

“One mum of a child with autism described having to constantly explain to people what was wrong with her child, on planes, in shops, or even at the bus stop.

“The misinformed and judgmental attitudes of complete strangers made this woman a virtual recluse. This is unacceptable when one in every 100 people in Scotland has a form of autism.”

Ms Evans said the new research had highlighted the need for greater understanding of autism. “We want to change perceptions of this complex and lifelong disability,” she added.

“We know that without understanding the signs and characteristics of this condition, the public can mistake the behaviour of people with autism for being naughty, anti-social or ‘weird’, and presume the person with autism is dangerous or a threat.

“This campaign aims to dispel those myths and educate people about the reality, as the effect negative public attitudes have on parents is soul-destroying.”

Today, October 29th, the UK’s National Autistic Society is lauching its Think differently about autism campaign, which seeks to “view the world through the eyes of people living with autism” and (in the words of Mike Stanton who writes the Action for Autism blog):

“to spread the word that autism need not be so devastating and disabling if only people would take the time to understand it and make the effort to adapt our schools and workplaces and public spaces to make them autism friendly.”

It’s a necessary campaign, with (as I interpret it) goals both pragmatic and philosophical: What concrete and actual measures can we take not only so that people do not stare if a child tries to smell every pack of sushi before choosing one, but so that a parent and an autistic person feel compassion and support when they might be having a difficult moment in a public place? More philosophically: What kinds of changes—changes in thinking, in how disabled persons are seen, in understandinging that accepting a disability need not be a passive act of surrender—-need to be fostered in society, to make the world a better place for people of every sort of difference, disability and ability?

I work on teaching Charlie the “you touch the food, it’s yours” rule in the stores, but it is certainly all right when he sniffs the pack of sushi before placing it in the shopping cart. (Don’t they say you ought to smell fish before buying it to know if it is fresh……). It is notable that The Scotsman has entitled its article Ignorance of autism is ruining lives: Life with autism has its own difficuties, but it is not so much autism, as misperceptions and misunderstanding about autism, that make things hard.

Just tonight Jim and I were reflecting on the fact that, if Charlie did not have autism, we would not now be living in a place that we feel most comfortable in—-New Jersey and the New York metropolitan area. Prior to Charlie’s diagnosis of autism, Jim was teaching in St. Louis, Missouri, and I had just started to teach in St. Paul, Minnesota, where we had moved to. Jim flew up every weekend the first year and had a sabbatical the second, but that was not easy. I resigned from my job when Charlie was three years old and we all moved back to St. Louis; Jim left his job too after we decided that New Jersey (where Jim is from) was the best place for Charlie to attend school. We’ve moved among jobs and households; we’re very glad to be here—-all because of Charlie.

It was because of, in honor of, for, in thanks to, Charlie that Jim organized a conference on Autism and Advocacy: Witness and Hope just over a year ago. The conference was held on October 27, 2006, on the Lincoln Center campus of Fordham University (where Jim teaches American religion and history). Jim opened the conference with an account of riding bikes with Charlie; Special Olympics CEO Tim Shriver spoke on the kind of fun that lasts and “diffability”; there was a panel on advocacy and presence; Kassiane Alexandra Sibley, English professor Bruce Mills, and other friends talked about the “varieties of autism advocacy”; a panel on Catholic education and the spectrum followed; I offered some closing reflections on advocacy, witness, hope. If I may quote myself:

Witnessing is not about bemoaning the life we wished we could have had, but about seeing what is right in front of us, now, a person with autism. Witnessing is about autism advocacy as needing to start not with changing our children to fit some preconceived “dream” we once had for them, but in loving them as they are, for what they are, and trying to understand from there what we can do for them.

I once asked Bob Fisher, who is Jim’s cousin and a screenwriter, about writing an autism comedy. Much happens in our daily life with Charlie—-like our having to clean the entire bathroom, his’s bed, and him at 2am a few nights ago due to an upset stomach—that I prefer to laugh at. (Indeed, laughing in the midst of such a cleaning operation makes it a lot easier.) I noted this to Bob and he asked me, “What does Charlie think is funny?” And I had to pause to think about what makes Charlie laugh and it is not exactly the same as for me. (A Lego put into the toilet.)

And by striving to see what is funny from Charlie’s perspective, I try to understand what the world looks like from where he is.

When you think differently, you never know where you’ll end up—what you’ll learn you can laugh it, and what you can see that you never knew was there.

Advocacy. Witness. Hope.

Earlier today I noted that this is my idea of a nightmare. Some consider life with autism, and autism itself, as a “nightmare” (”Autism: Nightmare Without End” is the title of a 1981 book by Dorothy Beavers). I do not consider autism, life with autism, being the mother of an autistic child, and most certainly not my autistic child as a “nightmare.”

“Nightmare” is only one of many negative metaphors that are still used to describe autism. Another one is that of a prison: According to this metaphor, there is a normal person “imprisoned in a world constricted by autism” and locked away inside a “shell” of autism. The title of Bruno Bettelheim’s 1967 The Empty Fortress: Infantile Autism and the Birth of the Self refers to this metaphor—-and so does a June 29, 2007, article from Fordham online:

“Autism is a spectrum of developmental disabilities that strike early in childhood that can interfere with the ability to communicate, learn and form relationships, locking some young people in a kind of mental prison.

The article is about an April 27th autism conference held at Fordham University in New York City—-Fordham is the university where my husband Jim teaches; it is where, on October 27, 2006 a different autism conference that he organized was held. The name of Jim’s conference was Autism and Advocacy: A Conference of Witness and Hope and you can be sure that no reference was made to autism as being “a kind of mental prison.” In fact, Jim’s introduction began with a description of how he taught Charlie to ride a bike; of how he thereby has given Charlie a kind of freedom, to take himself places via his own effort.

Now that the weather has cooled off, I think there is a bike ride in store for Charlie and Jim this evening.

When I agreed to start writing Autism Vox back in Charlie at Autismland, I thought it would be a good opportunity to express my opinions and ideas (such as they are) about education for autistic children and to advocate for the best services possible for autistic persons throughout their lifespans. I am an autism mother of a now 9 1/2 year old boy with some very significant learning and talking challenges (to name a few), I am a college professor, and when ever I have to indicate my “area of professional expertise,” I check the box beside “education.”

Autism Vox went live in April and I settled into posting about special education, the occasional research study, and made mention of a few new books.

Then came May.

May is always a special month to me because it is the month of Charlie’s birthday and this one was tinged with a particular load of meaning, because the previous two years had been very difficult ones for Charlie and so for my husband, Jim Fisher, and me. But this May had more in store.

On May 13th, a three-year-old autistic girl named Katherine McCarron died. Her mother, Dr. Karen McCarron, was charged with killing her. I wrote a number of posts about Katie McCarron in May and all through the summer and into the fall and beyond, and include two of those posts here, I don’t have a title for this post about Katherine McCarron’s mother (June 8, 2006) and Let’s Not Blame the Victim: A Call for Restraint and Responsibility (June 22, 2006). I think often of Katie.

And I kept writing.

It was summer and Charlie had Extended School Year and I was not teaching classes in ancient Greek, Latin, and classical culture and advising students. I had time to catch up on reading some books about autism. I also started to write about them, usually over a series of posts (a full list of these reviews can be found in the right-hand column of Autismland). The literature of the ancient Greeks and Romans also found its way into some posts about Classics and disability, and helped me think through some ideas for a scholarly article about the notion of the “bad” (kakos) in Sophocles’ Philoctetes.

Summer ended, autumn came, Charlie went back to school full-time and I went back to teaching—-and Jim threw himself into organizing and promoting Autism and Advocacy: A Conference of Witness and Hope, which I’ll hazard saying was the first conference on the “varieties of autism advocacy”—in matters educational, spiritual, social, and more—to be held in an academic setting. Back in early May, I had posted a list of fighting words—cure, epidemic, devastating, mercury, train wreck, tragedy, stolen child, plague—sometimes used to refer to autism, and often used in discussions about certain autism issues that, when I started writing Autism Vox, I was not sure how to discuss: I am not a scientist; I have no training in disciplines such as psychology, politics, government, public policy, statistics, medicine; my background is in the study of the literature and languages of the ancient Greeks and Romans and in particular in the philological study of those cultures’ texts.

Philology is from the ancient Greek words philos, “friend,” and logos, “word, reason, account.” Philology particularly means to study literary texts to determine their authenticity, original form, and meaning, all by careful reading of the words of a written text informed by knowledge about the language the text is written in. Philology is the love of the word, of language, of literature—-of precisely those things that my son Charlie, whose speech is very, very delayed and who is just learning how to read, is not altogether enamored of. Classical philologists look carefully at the language of ancient Greek and Roman texts to determine meanings hidden and lost over the course of time—-and sometime in the late fall of 2006 I started to apply this philological analysis to autism texts, as represented by the last three posts of my Top 10 List (and by two recent 2007 posts, David Kirby on “there is no autism epidemic” and Autism Vox on his rhetoric and Epitasis and Aposiopesis: On Dan Olmsted’s rhetoric). What not so readily discernible meanings (and perhaps, agendas) are hidden in contemporary writing about autism? Why do we keep hearing about an “epidemic of autism” and that “it can’t just be better diagnosis”?

I hope you’ll keep reading Autism Vox in 2007 to consider these questions and more, and that you’ll keep asking me questions and offering your critique and your opinions and ideas. I describe this blog as “autism mother gets on her soapbox” but the truth is, I can only stay on it with the help of all of you.

Advocacy. Witness. Hope.

1. I don’t have a title for this post about Katherine McCarron’s mother (June 8, 2006)
2. Let’s Not Blame the Victim: A Call for Restraint and Responsibility (June 22, 2006)
3. The [autistic] Child is father of the [autistic] Man (July 5, 2006)
4. Engaging Floortime (3): Floortime for Parents (Review of Engaging Autism by Stanley Greenspan) (July 19, 2006)
5. “Do you think that I’m autistic anymore?”: Growing up with autism in Kamran Nazeer’s Send in the Idiots (July 28, 2006)
6. Scapegoats and Disability (September 6, 2006)
7. Unstrange Minds: Remapping the World of Autism by Roy Richard Grinker (October 1, 2006)
8. What’s in a name: The “Hidden Horde,” TV, and a Diagnosis Called Autism (October 20, 2006)
9. The Autism Numbers (November 30, 2006)
10. Why are we seeing more autism?: “Environmental injury” vs. “better diagnosis” (December 22, 2006)

It has been just over a month since the October 27th conference, Autism and Advocacy: A Conference of Witness and Hope. Reading an article in today’s Inside Fordham Online and also Witness, hope, honor, and an elephant for Katie by conference speaker Kassiane Alexandra Sibley took me back to that very day. From the Inside Fordham Online article:

Autism is a disorder that has many unknowns; although it is regarded by the medical community as one of five Pervasive Development Disorders (PDDs), individual manifestations vary. Genetic components and medical treatments have also proven hard to pin down. It often is a challenge for people defined as autistic to deal with society at large, and conversely for that larger world to accept them. How can we, as a society, respond to these persons and their caregivers in a compassionate and respectful way?

These were among the issues raised [during the conference, which] addressed different aspects of the developmental disorder and its effect on autistic persons and their families……….More than 200 people, including educators, activists and parents of autistic children, attended three sessions involving clergy, academics and advocates……..

[Conference organizer Jim] Fisher, whose son Charlie is autistic, spoke of the “paradox” of autism, a condition which is often characterized by isolation, but whose affected parties are continually reaching out for a real sense of community. He told a touching story of Charlie gradually learning to master the intricacies of riding a bicycle, culminating with a fall and hospital visit. The rewarding part of that experience, said Fisher, was that the emergency room personnel “did not see him as a child with autism. They said to me, ‘hey, that’s what nine-year-old boys do.’”

Fisher noted the connections between American Catholic Studies and autism advocacy, saying that both are grounded in the value of the dignity of the human person, and in never reducing a person to a condition or part; rather seeking to educate or assist the whole person.

The Inside Fordham Online article includes references to what some of the speakers and parent attendees said at the conference; a full list of conference speakers is available here. This page also contains a growing list of links to my Autism Vox posts about the conference, as well as to other articles about it (include Jim’s reflections, including Kassiane’s “I’m not broke and don’t need fixin’”).

Conference speaker Kassiane Alexandra Sibley’s reflections on the conference are focused on her meeting Mike McCarron, Katie McCarron’s grandfather. Writes Kassiane, simply and powerfully:

So for me, I guess Mr McCarron is the strongest witness to hope I had ever seen. He isn’t hoping for some miracle to bring his Katie back. It’s too late. As I understand it ‘cure’ was never on that side of the family’s agenda, as they were doing education in whichever Carolina. Just hope for justice, and hope for better, safer futures for other autistic people. Through tragedy, he has become a fierce ally. Woah. How many people would crumble? I sure would. Or I’d get angry in the impotent kind of way, or the a little too potent kind of way…but not like this.

Kassiane notes that she wears a pink ribbon every day to remember Katie and also “a tiny elephant charm, one that looks like a baby elephant, silver,” small enough to hand from her medicalert bracelet—small enough always to wear, and to remember.

As I hope to remember the feeling—-the hope—that emanated in the amphitheater that day. If you were at the conference and would like to share a memory, please comment in this post or email me at kristina AT b5media DOT com. I will compile it all into one document or webpage; one collective memory of a very memorable day.

The November 2nd Fordham Observer contains a front-page article about last week’s October 27th Autism and Advocacy conference. Conference organizer Jim Fisher (aka Charlie’s dad and my husband) is quoted as saying:

“‘…this is probably the first time issues of spirituality, faith communities and autism have been treated in public forum.’”

The article describes Kassiane Alexandra Sibley’s speech more extensively:

Sibley…began her speech by saying, “I’m not broken. Don’t try to fix me!” She expressed her frustrations with people who call themselves advocates for autism, but are actually searching for some kind of cure.

Sibley expressed that being an advocate for autism meant being an advocate for the person with autism and not for the eradication of autistics. ……..

“Nobody listens to the autistic child,” Sibley said. She continued, “If a child communicates who finds it hard to communicate that should be respected. The autistic child has every right to say ‘Shut up!’ Sometimes, smarting off is self-advocacy.”

Thank you again to all who came and to all who, though not actually in the McNally Amphitheatre, were present in spirit. Jim and I have not been able to stop talking about the conference and we would like to know your thoughts about where do we go from here?.

I have been writing posts about the conference—about what each speaker said and more—and will put together a page with links to all of my posts over the weekend. (You can also see a list of all the posts about the conference by clicking here and/or by clicking on Autism Advocacy Conference under Categories in the middle blue sidebar.) The entire conference was videotaped and I will keep you informed once the videos are available on the web.

• Go here to read Autism advocacy spans the spectrum: Conference held in McNally Amphitheatre .
• Go here to read an article from Fordham’s Public Affairs office, Conference on Autism: Witness and Hope.

Timothy Shriver is the CEO of the Special Olympics; he gave the Opening Address at the October 27th Autism and Advocacy Conference. Shriver began by describing the Special Olympics as not so much about “disability” as about “diffability,” a word (as far as I know) of his own coining. “Diffability,” he suggested, emphasizes how Special Olympians are differently abled in athletic competition rather than unable to compete.

(For the record, the “dif” in “diffability” and the “dis” in “disability” are both from the Latin prefix dis, which means “apart or asunder” from, with the sense of negating or taking away.)

An example of diffability was the Irish Special Olympian with a number of motor disabilities whose event involved picking up a ball and rolling it. Shriver mentioned this athlete as he spoke towards the latter part of his speech about the 2003 Special Olympics World Summer Games; he told of the crowd who watched in anticipatory silence as the athlete did his best, and of the thunderous sound of the applause (not the ASL type) after he had completed his event.

Shriver’s address moved back and forth between referring to individuals with disabilities and those who, being “able-bodied”—inspired by such words as “Be the change you wish to see in the world” (spoken by Mahatma Gandhi)—seek to help them. “I got back more than I gave” is a typical sentiment that a non-disabled volunteer to the disabled often has—-and Shriver’s speech hinted at some of the flaws in this kind of thinking, in which it is always the non-disabled” person who provides the help and aide that the disabled person receives.

The relationship ought rather to be a two-way street, as Shriver suggested by an anecdote about his two sons. He had asked them what they thought they got out of spending time with disabled peers. One answered by noting that, when they go to Disneyworld, it is really fun and then it is over and (I hope it is all right if I quote Shriver’s son’s words as relayed in his speech), “it sucks.” Whereas, playing basketball with two kids named Matt and DJ is “the kind of fun that lasts.”

The kind of fun that lasts. Certainly that is the sum-total effect of all that we do with Charlie, with whom not only every day but every experience is a new and original, a different, adventure. “Be the change you wish to see in the world” is a phrase for any of us, all of us, at whatever degree of disability we might have.

And the reason the fun never stops is because of the difference—the diffability—that Charlie and kids like him makes.