“Citing examples of new additions like ‘mild anxiety depression, ‘psychosis risk syndrome,’ and ‘temper dysregulation disorder’…many people previously seen as perfectly healthy could in future be told they are ill….’It’s leaking into normality. It is shrinking the pool of what is normal to a puddle…

Dr. Wykes and colleagues, Felicity Callard, also of Kings Institute of Psychiatry, and Nick Craddock of Cardiff University’s department of psychological medicine and neurology said many in the psychiatric community are worried that the further guidelines are expanded, the more likely it will become that nobody be classed as normal anymore.”

Well, it’s about time. Perhaps ironically, I’m not one for self-help aisles and a belief that we all suffer from some made-up ailment that can be remedied with expensive quackery. At the same time, I also understand that there is a widespread concern that if we simply dilute human differences and challenges we do not address serious  medical and practical needs. In other words, some people fear that a complete distillation of humankind will take away much needed work towards attaining the services, medical attention, and accommodations that we continue to need in order to replace the treacherous world of asylums. This article in The New York Times, cites some of the other concerns specific to the autism diagnostics proposed for the new manual.

What the Globe and Mail article assumes quite simply, however, is that there are only two kinds of people: normal and abnormal. We know that in history that it is this whitewash, this binary, that is the most dangerous because it has  subjugated individuals with differing needs, thinking ability and functioning levels to not only the margins of society, but to maltreatment and exclusion of all kinds.

Until  recently, disabled people have had no rights. Still today, seen as non-persons despite legislation and the ADA, disabled and autistic individuals continue to struggle for their right to have a voice at policy-making tables, and to be accepted and accommodated for their needs while contributing as autistic and disabled people. Not a day goes by that the notion of cures and getting “better” (that is “more normal”), underlies the purpose of teaching autistic people at all, as opposed to teaching them to their strengths and abilities as well as with a regard to the value of autistic contribution.

As a committe works to redefine the characteristics of autism, the questions that the committee ask in the panels are well worth reading.  I cannot help but wonder how getting an autism diagnosis may change for parents and autistic people, and consider that the future could be brighter. In my view, we seem to be asking some of the right questions with regard to the spectrum of autism and the fallacy of the association between intelligence and functioning levels. So I guess I’m saying that as I read the Globe article this morning, I was sort of nodding my head. Yes, there is no normal….that’s right. Why fear that? What is it that we must do and how must we think differently in order to finally obliterate that binary?

It is here that  I have to refer to Wendy Lawson’s book Concepts of Normality: The Autistic And Typical Spectrum (Jessica Kingsley Publishers, 2008). In it she states,

“Currently the debate about ‘what is normal’ is causing some heated exchange; this is not new. In particular the debate concerning autism, disability, neuro-diversity and typicality poses some ongoing challenges. Disability presents itself in a variety of ways, and for most of us living with disability, who we are is normal for us. For many people on the autism spectrum, which is certainly very disability in a world that does not accept, value or accomodate ‘difference,’ being handicapped is an everyday reality…Having a respectful understanding of one another should include accessibility to appropriate resources, support, safe places and sincere appreciation of difference. Anything less is not acceptable.” (Introduction)

Recently, Thomas Armstrong released his book, Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia and Other Brain Differences, (De Capo Press, Cambridge, 2010). In his first chapter “Neurodiversity: A Concept Whose Time Has Come,” he has cleverly quoted Margaret Mead:

“If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so eave a less arbitrary social fabric, one in which each human gift will fall into place.” (from Sex and Temperment in Three Primitive Societies).

Thomas goes on: “In 1952 the first edition of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association listed one hundred categories of psychiatric illness. By 2000 this number has tripled. We’ve become accustomed as a culture to the idea that significant segments of the population are afflicted with neurologically based disorders such as ‘learning disabilities,’ ‘attention deficit hyperactivity disorder,’ and ‘Aspergers syndrome,’ conditions that were unheard of sixty years ago. Now, even newer disabilities are being considered for the next DSM in 2010, including relational disorder, sexual behaviour disorders, and video game addiction.”

“How did we get here?” Thomas asks. He cites things like a greater knowledge of the human brain and research into the area, a growth of advocacy movements that push for “awareness,” (alas, is it no wonder why most of us shudder at “Autism Awareness Month?). Mostly, the need for the advocacy marketing plan is the way to raise money for things like remedies and therapies. No family wishes to envision their children in asylums and mental hospitals (another topic because they were set up with all of the good intentions we have today for many of our “centres,” but ended up so overpopulated that the patients within them were neglected and abused). While there has been a valid reason for advocacy movements, perhaps an acknowledgement that all humans are interdependent and need different supports (no matter the severity of their handicaps), may be a very welcome change.

While we keep tripping over the question of what is normal, I wonder if we need a supplementary manual that cites abilities, suggestions for inclusion, education, and the like.  Perhpas we need not define handicaps as disorders, but very real challenges and acknowledge them against the social stigma of having any kind of disability. I have to question that if the stigma didn’t exist, would we also be a society that tends towards over-medicalization? For I do acknowledge that heading into a doctor’s office these days one wonders why so many meds are offered so readily for what I feel to be the way in which we respond to life — anti-depressants and meds like Ritalin come to mind.

To me, this need not be a question of what is the right or the wrong way to be human, but how to support all ways in which to be human. A DSM can only do so much. It is up to us to ensure that we cultivate the society that treats and regards each person individually, for although we are united in our lack of normality, we are also unique. It’s a complicated matter indeed, but in the end, all we wish is to be seen and loved…blemishes and all.

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I was in Yorkville last night when police told us to get out as rumour had it that protesters were on their way. It was probably one of the more anxious moments of my life as I remembered the Seattle tragedy.

John Mayer sings a good song about Belief. It’s time to listen again. I recommend listening to the song while playing the videos of the protests underneath.

This is not the city I was born in. I live in one of the most peaceful places in the world. These images are shocking:

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I do not want to suggest that people with more “profound” handicaps are not equally valued as other people. When I read the version this morning, I wanted to ensure at least here I could make that clarification. Also, I had suggested that there is no scientific evidence to prove that early behavioural interventions (as early as infancy!) remedies autism –that part was cut. That very idea that we should diagnose and detect earlier in order to “fix the problem,” was a very important point that did not make printing.

I had noted that with our views overall towards autism as a series of “fouled up genes” and “hiccups” in the human DNA, we are already basing the science on a premise of prejudice. At least, we all know that this is the very real possibility in terms of how that science will be used.

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Today Carolyn Abraham reports on the front page of The Globe and Mail the recent publicity surrounding the findings of an international group of scientists trying to uncover the genes that comprise autism. Throughout the article, Ms. Abraham describes autism and it’s “genes” as a hiccup — “genes fouled up by long stretches of missing or duplicated pieces of DNA.”

Doomsday is coming, or it could come. I know that there are parents who dread having a child with any disability. I understand that no two families are alike in the way they approach the subject. Yet there are families who do cope well; those of us who value the children we have and balk at the concept that humanity can be distilled into DNA. Of course, it can in a sense, but the complexities of being human cannot. I could tear this article apart. I am utterly offended by it, if I am to admit my leanings. I cringe at the thought of my son reading that he is a “hiccup” or a series of “fouled up genes.”

Just as important is the idea, the very scary idea I might add, that we can terminate an autistic pregnancy. The study co-author Peter Szatmari admits that the prospect of the commercial test that will prematurely reach the market “makes me nervous. I don’t think we have the science yet to nail it down. This isn’t one gene but a profile of genes, a pattern of susceptibility, not cause.” As reporter Abraham writes, “in the direct market age, the market rarely waits for more research.” In other words, in a world that hardly understands disability, how disabled people live and feel, disabled pride, autistic pride, and rarely hears or listens to the voices of autistic people, parents may rush to pick up a screening test. Without this knowledge, what do you think is going to happen?

Then it occurred to me: Adam’s parents, that’s right — his father and myself and his entire family — would likely have many of those genes — those “fouled up” ones in one way shape or form. Maybe this would mean I would not be here, his dad, his grandparents, his Bubby or his Zaida. “In all,” says the Globe article, “the study spearheaded by post-doctoral fellow Dalila Pinto at Sick Kids, identified more than 100 genes affected in the people with autism, many of them forming a part of a network that governs how brain cells grow and talk to each other.” Perhaps this comprehensive network is part of all of us that make up autism. Autism is an accentuation of our very human traits.

As far as I’m concerned, this is doomsday approaching fast IF the dialogue about how we use science — how we implement knowledge — better be linked with a dialogue about not only what it means to be human, but the very right to be disabled, autistic and yes, what can be wonderful about that in our world that has been taught to fear disability. There is a social aspect here that is running the show and we are a highly biased society against those with neurological differences and further, we write about autism as if it’s the worst thing on the planet.

In our family, and in many others that I know of, it is not. Premature reporting of scientific findings without a balanced argument (or even acknowledgment that there are people who prefer to be autistic) of this kind runs a very high risk.

Another discussion that may help our own:

The article referred to in Nature here.

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What is justice, Sandel asks his audience? Like Aristotle, Sandel agrees that justice cannot be determined without an understanding of the following:

1) What abilities we recognize as worthy of honour and recognition and,
2) the purpose of our social institutions.

It seems to me that these are, in fact, the essential questions that we can ask ourselves as we discuss and debate the bigger questions like “what is autism?” and “what kinds of help do autistics need to contribute to society?” The question pertinent here, of course, is how and if we regard autistic individuals as worthy and how we prove that we believe it.

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There is no new take these days on writing an autism and this in and of itself seems to me that either I’ve become over-saturated with the type of material, or I’ve simply reached a new parenting stage and where it takes me with writing here, I am not yet sure. I have tried to post a few interesting presentations on the blog the past couple of weeks. There are so many performances and exhibitions, and art is a segue to complex ideas often then used and analysed also by science as much as science can influence art. Of autistic performance and exhibition, please don’t label them as “miracles.”

I’m fatigued by references to miracles. Autistic achievement, as is discussed so often here on the blogs, is so often referenced as gifted or miraculous. There are no miracles. There is only what we wish to believe.

We’ve noted what a detriment to the autistic community such stereotyping can be. Even if it’s true that autistic thinking is different, and of benefit to our society in many ways, this is no reason to call it gifted or a “miracle.” When it comes to a play, or an autistic child typing, or a group of autistic children performing for an audience, I’m really taken aback at references to the achievements being “miracles.” However, if we are referring to all of us as being “miracles,” I sort of get that — I get that embrace of the miraculous state we call human. Miracles are a short-cut answer and resolution to that which is unresolvable. Try to tie it up with a convenient conclusion, and we will all fail.

Acceptance is as acceptance does, and in all likelihood, the name is too simple while embracing everything. “Simplicity embraces exactly the right details, the right difficulties, the right complexity,” but it also requires am effort in learning, observing, studying and yes, striving to argue well here in this contentious autism community. Acceptance is not simple. Autistic achievement is not a miracle, although it has been so unrecognized in human history that it is not surprising that we have labeled it as such. This is humanity we’re talking about. It’s messy, difficult, wonderful, full of frustration, anguish and yes, joyful.

And this may be the only miracle.

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Foucault’s lectures from 1974-1975, compiled in the book Abnormal (Edited by Valerio Marchetti and Antonella Salomoni), suggest that our legal system is a mechanism of exclusion. Foucault argues that the emergence of abnormal in the nineteenth century constitutes the basis of human as: “the monster, the individual to be corrected, and the onanist.” It was the nineteenth century that saw the system of “normal” birth in the way we understand it today. Adolphe Quetelet established a measure of the stars that was also used as a model to create a “statistical norm” of humans for political purposes during this period. It should not be surprising then, that this system of “regularities” was used in medico-legal practice, and “produced a psychologico-moral double of the legal offense [thus] creating [a model] of the ‘dangerous individual.’”

Just how do we determine who is dangerous? The question is important since people with cognitive differences have been marginalized, feared and unjustly incarcerated. I do not think it needs rementioning that this fear underlies, even, the many media reports about autism and the fierce quest for a cure. Foucault, further, cites legal examples of how we exclude, judge, fear and incarcerate individuals who MAY BE a danger to society.

“The examination is that form of knowledge and power that gives rise to the ‘human sciences,’ and thus that contributes to the constitution of the domain of the abnormal. The examination of the ‘dangerous individual,’ for example, implied a control not primarily of what individuals did, but of what they might do. [italics mine], what they are capable of doing. ‘Dangerousness’ meant that the individual ‘must be considered by society at the level of his potentialities and not at the level of his acts,’ not as someone who had actually violated a law, but as someone whose potential behavior had to be subject to control and correction.”

Foucault has also said, “Expert opinion shows how the individual already resembles his crime before he has committed it.”

He also said in his lectures, “The first property is the power to determine, directly or indirectly, a decision of justice that ultimately concerns a person’s freedom or detention, or, if it comes to it, life and death. So, these are the discourses that ultimately have the power of life and death. Second property: From what does this power of life and death derive? From the judicial system, perhaps, but these discourses also have this power by virtue of the fact that they function as discourses of truth within the judicial system. They function as discourses of truth because they are discourses within a scientific status or discourses expressed exclusively by qualified people within a scientific institution. Discourses that can kill, discourses of truth, and, the third property, discourses — you yourselves are the proof and witnesses of this — that make you laugh. And discourses of truth that provoke laughter and have the institutional power to kill, are, after all, in a society like ours, discourses that deserve some attention…These everyday discourses of truth that kill and provoke laughter are at the very heart of our judicial system.”

As Foucault cites specific legal cases, it becomes clear that the least element of proof has been enough to entail a certain element of penalty.  I do not think I need to cite specific cases in autism where autistic people are marginalized, assumed to be dangerous, and who often are mistreated by those in law enforcement. These stories are in the news every month. Stories of how autistic people are feared manifest in our treatment of them and the burden of proof lies heavy upon the autistic person.

As I watched Edward Scissorhands again last night, which should be a cult film of the disability genre, I want you to pay specific attention to the court scene and the “expert” opinion and then the group of women perpetuating fear. As autism is diagnosed by observation only, I hope to illustrate the bias that underlies our thinking and permeates our society and how it effects the treatment of autistic individuals not only by our formal institutions, but as Foucault takes further, in the law:

—-
References:

Michel Foucault, Abnormal: Lectures At The Collège De France, 1974-1975, New York: Picador, 1999.

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When was he diagnosed?
How did you know?
How did it look?
Was he detached from you from birth?
Did he line his toys up?

Yada yada.

Please don’t get me wrong. I do not mind answering questions, but I also need to attend to my son. I suppose I should say I do not mind in the appropriate context. I would rather come in and answer any question on another day rather than be asked with Adam listening as if he’s not in the room. Indeed, I did mention something as politely as I could.

It’s a bit of an issue for us parents and for autistic people, this having to answer all of these questions all of the time. Yes, I mean every time we step out the door. Yet others have to understand that part of our willingness to answer such questions is also an attempt to be able to move on in our lives without having to explain ourselves — “us” being parents of autistic people or autistic people themselves.

Sometimes I wonder how far we’ve come in autism “advocacy” — if we are doing more harm than good. If people were not classified in the first place, if a statistical norm was never invented (indeed it was in the nineteenth century by the medical and legal communities in order to deem who might be dangerous in society — all based on possibility, not on facts…read Foucault), if autism and autistic people were not as targetted in the media as “abnormal,” if we were truly a more accepting society of all forms of human, we might not have to live our lives constantly having to answer how we exist and how we came to be.

Isn’t this what we’re aiming for — to live without question?

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Sometimes its good to remember why we started something, measure how far we’ve come, and plan what still needs to be done. Seven thousand registered members later to The Autism Acceptance Project (www.taaproject.com), and a monthly newsletter, we want to continue to achieve greater understanding about autism.

I’ve got some of my own answers to the following questions, and I’ve certainly learned a lot more since giving those talks. But I want to ask you:

How far do you think we’ve come since 2006? What would be a main point or goal you think we need to achieve in the next two years?

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Yet when I am feeling depleted, I fight it and I will urge every single one of you to do it too. For each one of us has that power, if we can be aware and monitor what’s happening to us inside. It’s important to remain honest with ourselves and then be able to step back from those feelings that can suck us down.

I reach out for help. I call people. I call Adam’s aides and therapists for help when I’m feeling overwhelmed. This is a good place to start. Always call for help and bring in only those who support you and your child in the manner that you need. Do not bring people in who will put you down, make you feel lower or try to fix your child. The most important thing you and your child need are love and respect.

One thing I know FOR SURE, is that there comes a time in life when we really do have to muster every bit of strength we have and resist the calls of the demons. The echoes of The Autism Everyday video and “wanting to drive over the George Washington bridge is like a siren call and this is why this kind of marketing — the kind that exploits and capitalizes on people’s pain — should be illegal in my opinion. It’s not that I disrespect Allison Tepper Singer for her genuine feelings that might be expressed cautiously in a book or another venue. It’s about how those feelings were exploited for capital gain: make autism desperate enough and we can raise money to cure it. Well, I’ve said it before and I’ll say it again: I believe this kind of marketing (consider type of presentation, method of delivery etc.,) is more harmful to parents than ever.

People shouldn’t have to stifle their feelings — that doesn’t help and can an adverse effect. I’ve read Sylvia Plath’s The Bell Jar and it’s all about wanting to die. Beautiful work exists because of honesty and by sharing honest feelings we do not feel alone. There are expressions of hopelessness everywhere — and some quite well-written in fact. Yet these can be used to empower and can also be used as cautionary tales. It’s the latter cautionary tale I wish to dwell upon. People must reach out in a world where literature on loneliness prevails. In this past weekend alone, I’ve found one book on Lonely by Emily White (it destigmatizes loneliness and it is an interesting read) and two articles on loneliness and depression (The New Yorker and a review of White’s book in Saturday’s Globe & Mail). It feels as if we live in a technologically hooked-up world that seems, in fact, to be coming socially undone.

This morning I find the following story on the murder of an autistic child (see below) which is why Autism Acceptance is so vitally, URGENTLY important — not just for parents but for society at large. Society must begin to realize the incredible challenges that families with autistic kids have when they are NOT included and accepted. If we are a community, then EVERYONE IS RESPONSIBLE. I take the story of Gigi (excerpted below…almost there) very seriously. It shows that no amount of money can fix anything. Better spent, is money accommodating autistic children and making sure every child gets a fair shot at being included and educated. If I have one dream, it would for The Autism Acceptance Project to raise more money to advocate more strongly that acceptance is a social responsibility, and to make a place where autistic kids can be fully accepted and receive an amazing education.

My former neighbour Mike Lipkin is motivational speaker extraordinaire and author of several books, one called Strong Mind, Strong Heart, co-written with Dr. Bernard Levinson. I’m very good friends with his exceptional wife and herself an inspiration, Hilary. Re-reading some of his chapters after a very challenging couple of weeks with Adam reminded me how certain thoughts are defeating. Mike reminds us:

“Are you worried about your children’s future? Are you unsure whether you’re on the high road or the low road? Have you noticed that everyone you talk to has a different idea of where you should be going? Are you slightly confused? Are you a little exhausted by having to make so many decisions all of the time? Are you being bombarded by massive change? Is your brain frying?” (p.88)

I think that many parents can say yes to all of these questions. We worry what will become of our children and where they’ll end up.

We want our kids to go to school, to have places to be social and be accepted there too. With so much negative information getting into our brains from the media or from individuals who believe that an autistic person is only better once they are cured, there are real dangers that lie ahead. By reading Gigi’s story (still coming, I promise) it was clear that she was overwhelmed with trying “fix the problem.” When one discovers that autism cannot be fixed or changed, but perhaps begins to appreciate that while there are challenges, there are many advantages, life begins to look a little less desperate. I urge everyone to consider the list of what an autistic child contributes to the family instead of what s/he takes away. While the rhythm of life certainly changes, it is only those who can adapt and learn to walk to the beat of the new drum who will find joy in life. An autistic child demands that we learn to go with the flow.

Mike Lipkin talks about this a bit, albeit not about autism specifically. He talks about how life “will hit you hard like hail from the sky.” (p. 79) He says that people need to learn how to be resilient. “Resilience is the ability to heal after a hurt. It’s the knowledge that bad things happen in this world, but just because bad things happen, it doesn’t mean you’re bad. People who lack resilience are people who invest too much negative meaning in what has happened to them. They obsess on the dark side of their psyche. They focus on why the knocks happened to them. They ask the fatal question:

Why does this have to happen to me?” (p 80)

We all have dark days. Autistic people also have dark days and learning to be resilient is hardest for them. The world is tough and it hits you hard. And you have to fight it with everything you’ve got. Gigi Jordan could not:

A few weeks ago a terrible story unfolded in a posh midtown Manhattan hotel where a 49-year-old mother, Gigi Jordan, was found “babbling and incoherent” beside the body of her eight-year-old son Jude, dead from an apparent overdose of ground up prescription pills, including Ambien and Xanax. Later it was revealed Jude was autistic.

In his press conference, the stunned and shattered father, estranged from his ex-wife and son for the last two years, said he had no idea what provoked his ex-wife to kill their child. “To be honest, she was the most wonderful mother I’ve ever seen. She left her business, left everything, just to take care of Jude.” Her oldest friend, Dr. Marcus Conant said, “She went to clinics all over the country looking for new treatments, grasping at straws, trying to fix the problem.”

The kind of hopelessness that Gigi faced might have been averted. Also new as a single mother, I know those nights when I feel I have no one to call upon. In those moments, I know I have to pull myself together again and remember that it’s always darkest before the dawn. It doesn’t have to be Adam that can make me feel this way. It could be a separation, a loss of a loved one.

Mike Lipkin would agree:

“One of the greatest sources of stress afflicting the people who come to us is the discontinuity that prevails everywhere. Just when our clients thought they had finally figured out a pattern, the pattern splintered into pieces again.” (p. 88) That pattern in the autism world is expectation. If we expect our children to change, to be fixed, to adapt easily, we cannot be resilient parents.

Mike suggests that we “sketch out many different paths” in our minds to “create an array of different possibilities.” He reminds us that not only is life unstable but that “as human beings, we have deep-rooted desire for certainty and stability, ” and quotes Francis Bacon who nearly 400 years ago said, “If a man begins with certainties, he shall end in doubts. But if he will be content to begin with doubts, he shall end in certainties.”

In autism too, there are no certainties. The article that talks about Gigi, talks about how the autistic brain “hardens” at the age of eight, and it would make any parent want to cry if you’ll believe it. Again, the article is somewhat misleading. It’s only through misleading expectations that a child must be fixed before the age of eight or all is lost that sends many parents into a tailspin like Gigi. Not only is this inaccurate about autistic people, but it’s this type of limited thinking that can stifle us and make us feel hopeless.

I for one know that autistic people continue to learn and the possibilities are endless as they are for any human being. Instead, as Adam also turns eight this April, I will ask myself how Adam and I can make a difference in the lives of others who are also on this path. For helping others and having this self-ascribed mission helps us. We have opportunities to learn. Every hard-knock and experience is another opportunity to learn. We get our hard-knocks every single day every time a school or a program doesn’t appreciate the special contributions Adam can make to the world. It’s enough to make me want to start my own school — and I know many other parents feel the same way (can we harness this energy??).

Do not listen to the media, but trust that your child is a human being filled with potential. The media will always be there, and sometimes it’s just a good idea to turn it off or give it a hearty guffaw because you will be tempted to feel sorry for yourself and this will deplete your capabilities as a parent. Become the kind of warrior that fends off the demons of the mind and the media. Remember that every child has difficult times and when our autistic children have them, we have to take deeper breaths, ask for help and figure out where this journey is supposed to take us alongside our children. While times seem a little easier for those with special needs, there’s a whole lot of discrimination still going on in our communities. WE have to change this together and support each other in our efforts.

“So once again, here’s one unchanging Life Principle over and over again,” says Mike. “You need a Still Mind to think through the confusion and noise. The only way you can master the cacophony on the outside is to have harmony on the inside. Without inner harmony and quiet, you cannot have a Strong Heart. And without a Strong Heart, where are you going to find the resources to not only brave the darkness, but lead others as well?” (p. 90).

It looks like all of us have to lead. It is also important to stop listening to others and begin believing in ourselves and our children.  We are forging ahead with a new demand in this world and that demand is that our children be integrated into our communities. For this, we need to be brave.

Adam and I had a tough weekend adapting, still, to his new home. So much so that I’ve asked his aide to bring him home early so we can begin implementing fun activities here and teach him some structure. It is my hope that he will swagger on his turf soon and we can both get back on the path of working on our mission which is to help others along in the Inclusion Process.

Yesterday morning, after a very dark night, I stopped my inner fight. I leaned in to Adam (who has difficulty speaking but not always understanding), and modeled language (this means that I say a sentence that he might wish to say himself in order to show him that I understand) while he was trying to soothe himself by playing on the computer. “I’m not feeling well, Mommy,” I said in a soft sweet voice. Immediately, Adam stopped what he was doing, came over and leaned his head of feather-hair into my arms for a hug, and we remained like that for a while. As the day wore on, Adam became calmer and things got a little better.

This morning, the sun came out and his happy grin made me shine inside. If we can hold on, the sun will come out again and the possibilities are endless. But you have to believe it. I hope by sharing a bit of our story and adding some inspirational words from my friend Mike, I have helped anyone who is reading this a little too.

For more reading on how to cope with dark days and how to take care of yourself in order to care for your child:

Still Mind, Strong Heart by Dr. Bernard Levinson and Mike Lipkin (not specifically on autism but created for inspiration)
More Than A Mom by Amy Baskin and Heather Fawcett
Autism Acceptance and Survival Guide by Susan Senator

Other Back to Basics Autism Books:

The Autism Answer Book by William Stillman
Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm
Autism Handbook for Parents: Facts and Strategies for Parenting Success by Janice E. Janzen
Parenting Your Complex Child, by Peggy Lou Morgon

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The Autism Acceptance Project made the grade in this month’s issue of Oprah magazine. In “100 Things That Are Getting Better,” TAAProject made it for autism acceptance (number 69 to be exact).

We (of The Autism Acceptance Project) are humbled and proud of this and it comes at a time when we are rethinking the website and the content and conjuring new projects. Thank you, Oprah, for acknowledging autism acceptance.

Also, as I go to other autism programs these days, I feel a movement towards change, even though we have farther to go. There are more programs that do not treat my child as a burden or abnormal, but more (but still not enough) that honour his way of learning and who he is as an autistic person. I thank also all those people (there are so many more) who also who work towards ensuring that autistic people be treated as equal and valuable human beings.

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Yesterday, Boy Interrupted was aired about Evan Perry who had bi-polar disorder and committed suicide by the age of fifteen. “Bi-polar disorder,” says the family doctor in the piece, “is like cancer. It can kill. Some people survive.” Produced and directed by Evan’s mother Dana Heinz Perry, we see the family’s genetic history of the disorder while also understanding the mother’s profound love of her child.

It strikes me as odd when I hear stories, sometimes, of people saying to parents of disabled children that, if they had died, that it’s somehow a “relief.” For certain, watching Boy Interrupted made me realize my love for Adam, autism and what a travesty it is that we complain so much about the so-called “problems” we have instead of viewing them as opportunities to make the world a more accepting place. Yes that takes patience and disciplined work. While I know “making the world a more accepting place” is becoming an over-used phrase, thus coming to mean nothing, our work to understand mental illness and disability and de-stigmatize both is valuable and worth it.

We don’t seem to value people who have disabilities, depression, or any other physical illness very well. We spend more money and time putting people away rather than investing in them. Charity without thought and engagement is particularly concerning as it is a way of avoiding real issues. In the Buddhist sense, I read something that the 17th Karmapa (thus ordained by the Dalai Lama), who stated about generosity:

“True generosity requires some wisdom — a clear understanding of ourselves who are giving, what we are giving, and to whom we are giving. If we use our intelligence, then generosity benefits both ourselves and others. We should not give just for the sake of giving or from an old habit. Further, in the process of giving, we should not become distracted, for losing our focus diminishes the scope and effect of our activity.” (Shambala Sun, January 2010, p. 52)

Many other Western philosophers felt the same about charity, particularly Nietszche who believed that charity was given by the rich to make them feel superior. It is also a way to avoid engaging with real problems and people and thus pretending the problem isn’t ours, but we are good people to at least do something about it. While charity can be helpful, it can also be a declaration: go away — I don’t want to deal with it, or, thank God it’s not me.

When we watch The Fifth Estate tonight and think about people like Ashley Smith of Evan Perry, I hope we can all try to think differently about all different kinds of people… and how we “treat” them.

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It’s time to talk about autism again. It’s time to talk about all the services we don’t have, the Inclusion we must have as well as specialized services when we need them. It’s a year to find our commonalities not differences, and where there are serious differences, we have to discuss them intelligently. At the end of the day, whether you are in one “camp” or another, most of us want our children to be happy, healthy and as independent as possible (but it may not happen and we have to make the best of that too). As a mom who is watching Adam grow, we need to teach more things to him this year, mainly communication. We will have more assistance using new programs and devices this year because I have sought it out from others. I have realized that I just can’t do it all alone, but I know when to reach out and ask for help. It’s a year where mom is “back,” (she was dealing with other business last year), and wants to provide Adam the best education he deserves. I hope we can all work together. We gotta be cool, we gotta be wiser. We gotta be tough, we gotta stay together….

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Wendy Lawson’s book is about regarding individuals with autism with respect and dignity and questions our idea of what is “normal” when dealing specifically with autistic people. It is a wonderful thesis based upon how society views “normal.”

Of the “guest author’s” Dinah Murray and myself, Dove states:

The guest authors, on the other hand, seem openly hostile to such parents. Murray sarcastically remarks, “Some Others [members of the typical population] weep and moan and deplore their autistic child’s existence; they wallow in self-pity and congratulate each other on how Truly Dreadful it all is.” This statement illegitimately paints a diverse group of people with a broad brush and seems to be little more than a mean-spirited attempt to silence critics. Klar-Wolfond is not much better. In her discussion of the admittedly questionable practice of using scientifically unsupported biomedical therapies, she offers the following rhetorical question, “And to make them what? — better at maths, quicker on the sports field, or well-mannered?” This is doubly insulting to parents of children who have tried such therapies. First, it belittles their concern. The suggestion is that parents are merely trying to get their children to “act normal” when in fact they are often trying to ameliorate severe challenges with respect to communication and social interaction as well as other difficulties including debilitating anxiety, painful gastrointestinal problems, insomnia, and even violent behavior. Second, it denigrates their reasoning. Many parents who try such therapies agonize over their decision. Although some of these therapies have potentially harmful side effects, most do not. When Klar-Wolfond lumps together treatments as diverse as supplements and detoxification therapies, she is being both misleading and unfair.

To me it is a response not terribly unfamiliar. Dove discounts Dinah’s perspective of being an autistic individual herself and myself as also being a parent who “agonizes” over decisions. It is precisely to that point I think worthy of addressing and why I wrote the piece in the first place.

Parents of autistic children are being eaten. A plethora of information does not constitute proof of what causes autism or what may assist with the symptoms of autism, and even those symptoms may not be a direct cause of autism but autism may cause a more heightened reaction to an ailment. Come to my house when Adam has a cold and instead of a tired child, he may be running around the house.

Yet the rise of speculation has lead many (clinicians and those in the medial profession included, and conversely thanks to the researchers who have endeavoured to provide the real proof to many speculations out there) to sell their products to the risk and danger of the autistic child, feeding upon the desperate worry of parents – and most of the time these parents are new to autism thus more open to trying anything to “helping” their autistic child recover.

I can’t help but chuckle and Dove’s choice of words. “Hostile” is a descriptive word typically ascribed to women who tend to take a critical stance. The hysterical, hostile woman is no more a stereotype than the idea that autistics are less worthy and in need of a cure. Yet Dove, to be fair, is of the mindset, it appears, that these remedies are somehow safe and that parents are only trying to make the best choice. It is here where I think he misses not only the point, but an opportunity to engage in a discussion of how we come to push unproven remedies that risk the safety of our children. The very idea that our children are “not normal,” is the premise for trying to recover them, which is why Dr. Lawson chose the guest author essays for her book. The attempt, by Murray, Lawson and myself, is to identify this preying upon parental worries, not demonizing parents. Yet all of us have to step back and take a close look at what we are putting at risk and why. Further, Dove’s defense of parents instead of the autistic people who are much more vulnerable is sadly typical in our age. It is this stereotype we are challenging and we need to point out the irony of critiquing the view of the autistic person who implores a different view.

Yes, all parents agonize over their decisions. Where is the mechanism by which quackery is separated from scientific proof? As a parent, I can relate to the agony of putting my child on ANY medication (and this is NOT related to his autism but to his overall well being and health). The non acceptance of autism as a way of being, which is precisely Wendy Lawson’s point, has driven many parents to put their children on hundreds of unproven remedies at the same time.

The question is not hostility, Professor Dove. It is a question of having a critical mind precisely when emotions are the driving force behind the autism “hysteria.” For any parent or autistic person willing to engage in this discussion, we are in turn called “hostile?” Have you witnessed the hostility by non autistic parents against autistic individuals who are trying to be seen and heard?

I can tell you as a parent and a friend to many autistic individuals, there is a great deal of agony, indeed. The agony is in pushing them to recover from autism, not recover from stomach pain. Whether the two are linked, no one can really say. The evidence is still very anecdotal. Clearly, that pain should be remedied, but not at the risk of administering hundreds of medicines simultaneously in order that our children can act more “normal.”

I gather being critical is less important than putting our children’s health and safety at unnecessary risk. As for Adam, I couldn’t bear seeing him in pain. Of course I would seek counsel from his doctor and endeavour to remedy his pain. It would be no different if I had a non autistic child. The point is autistic children are being put at much higher risk precisely BECAUSE they are autistic.

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In this autism world, or any matter of the human spirit, we are really involved with the meaning of things and what will bring us joy and happiness.  Every time we write our lists and ponder our life’s purpose, we can feel overwhelmed. While I’m certainly for lists, I think they are simply like little messages we have to write, put out there and then tuck in the wall. Once the intent is made, then leave it, move on and begin the work. While intention is how we wish to live our lives everything else can happen. And it will.

As I’m re-reading Viktor Frankl’s Man’s Search for Meaning this week, I’m reminded of some very important things. First, is that like the name of this blog and it’s consecutive mantra about “struggle,” I suppose I was also brought up with the idea that struggle will always be a part of my life and that happiness happens when we aren’t paying attention. It can even happen during the most catastrophic of circumstances. Frankl had cited Nietzsche’s ideas that we all have to have a “why” in life to get us through. He said if we have a “why” then we will certainly have a “how.” For those in the concentration camps during the Holocaust, Frankl of course ponders the meaning of life during one of times most horrible of human travesties.

Frankl understands life’s inherent blessings among tragedy. He sees goodness in the group that has done him harm: “Human kindness can be found in all groups, even those which as a whole it would be easy to condemn. The boundaries between groups overlapped and we must not try to simplify matters by saying that these men were angels and those were devils.” He refers specifically to the Germans and notes that groupings of “good” and “bad,” does not fully explain or accept the expanse of humanity. For when one condemns one group, they are also denying that they are also capable of the same atrocity, for we are all made equal. Once we are able to understand that we all carry the same capabilities of good and evil within us, we can become compassionate. The modern saying is “for every finger we point, there are three pointing back.”

Perhaps it would serve us all well to practice a little reflection when we debate the “rights” and “wrongs” in autism politics. It would serve us well in every aspect of our lives. Some of us in this world hold on so firmly to our beliefs that we don’t see many other realities.

Musician John Mayer writes:

Belief is a beautiful armor
But makes for the heaviest sword
Like punching under water
You never can hit who you’re trying for

Some need the exhibition
And some have to know they tried
It’s the chemical weapon
For the war that’s raging on inside

Everyone believes
From emptiness to everything
Everyone believes
And no one’s going quietly

There’s a lot of autism “belief” out there and it’s important to have science to assist us in proving many things. Also, it’s important to know. To know that my son, without proof, is a worthy, valuable, lovely human being who has made contributions in ways he is too young to understand.  It sometimes disturbs me that as much as science is important to prove harmful beliefs incorrect, it is similarly exhausting to have to prove one’s value through scientific or any other means.

In this world of human difference, belief, disability I would like to take a moment to defer to Frankl who says,

” What [is] needed [is] a fundamental change in our attitude toward life. We had to learn ourselves, and, furthermore, we had to teach the despairing men, that it did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead think of ourselves as those were were being questioned by life — daily and hourly. Our answer must consist, not in talk and meditation, but in right action and in right conduct. Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual… and each differs from man to man….When a man finds it his destiny to suffer, he will have to accept his suffering as his task.” (Simon and Schuster edition, 1963, pp. 122-23).

And so perhaps it is not really worth our time to discuss what makes us happy and brings us joy as much as it is to accept the responsibilities and events that enter our lives, and move on with them with an open and willing heart. Hmm, just that simple thought makes me happy.

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Travolta recounted in last week’s testimony how he tried to revive Jett, 16, who had fallen after a seizure in a family vacation home on Grand Bahama island.

The actor testified that his son Jett was autistic and suffered seizures every five to 10 days. He said the seizures would last 45 seconds to a minute and Jett typically slept for 12 hours after each one. “He was autistic. He suffered from a seizure disorder,” Travolta told the jury when asked about his son’s condition.

Looking at pictures of Mr. Travolta, I feel for the family deeply. Perhaps because of my own recent strain of going through divorce and watching Adam go along with us, maybe it has sparked some deeply painful feelings for me. Thinking of Adam’s future, as we must do when we go through a divorce even more so than ever, and we have to consider all the possibilities of epilepsy as well.

Going through all of this and reading stories about the Travolta family (I could not imagine having to go through this in the public eye) I have compassion for them and all the families who are not in the public eye — ABA, RDI, I really don’t care.

I care about the rights of our children. I care about not denigrating them by saying they are “less than” or “a fate worse than cancer,” because political exaggerated political sound-bites (even if there is an snippet of truth about the struggle) does not benefit anyone or any cause. We all must deal with the daily care, the worries, the strain on the family as well as on autistic people as a community. And I still believe that society does not yet have a healthy view of disability or autism and that needs real work and evolution. But I have compassion. I have compassion for those parents who are in depression because of autism. I used to be a more vocal activist (that may not change but may change it’s form), but the school of hard knocks has made me realize that my way of coping with Adam and non acceptance (of me as well as of Adam), was with activism. As I’ve reflected over the past year, activism for many people (like me) is a way of coping with crisis that might otherwise have sent me into a place where I might not have been able to function. My nature was also a part of activism — I was not about to give up on a child that, despite some hardships, is still pure joy to me. Some activism is harsh and negative, on both sides of the political spectrum. It leaves us with less energy rather than more. In real life, when we have a strong opinion, we will be met with opponents. There is a healthy way to debate and an unhealthy one. There are rules of engagement as there are in war, when the going gets really tough. Using children for the sake of angling is not okay. I prefer to read the blogs and writings of parent and autism activists who can see both sides of the experience.

I say this with the recent report on the Travolta family because I want to support what they have gone through and know the kind of love they must have had for Jett and the pain of the loss of him, in the midst of what I imagine to be an oncoming political agenda to use the family in a most difficult time, rather than a simple compassion (not pity) for them. I just do not think the time is right.

Joy Behar and others on The View talked about why John Travolta did not come out earlier about his son’s autism. About a couple of years ago, I too came out rather harshly on Mr. Travolta in my older Joy of Autism blog for not “coming out.” But Joy, I think said it right. It’s up to the family. It would be my hope (and is obviously my decision as Adam’s mother) that more parents will understand that to advocate for inclusion and acceptance means we have to “come out.” But Joy is also right by noting that the labeling aspect can limit our children to meaningless sound-bites, where popular representations and culture whittle down our children’s individuality and abilities as well as real challenges.

As far as Adam and I are concerned, we walk the fine line everyday. As his mother, it is my job and choice to advocate for him to attend any program that I believe he would enjoy, excel, or where he has a right to be with his community and to learn. He is different and it is not appropriate for people to put the onus on Adam to “be like” other children. Rather, the onus is on us to quiet our expectations, and live with everything Adam can do and offer and to pick up quietly and patiently on what he can do in order to nurture him.

So “its a fine balance,” as Joy said, between revealing and not revealing. But I’ve laid my bets on revealing for the sake of a better, more accepting world. And as I learn about autism acceptance more everyday, I also am beginning to learn how to accept myself, my evolution as an autism mom, a person with strengths and limitations, and an autism activist. More on that later.

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Under the Ontarian Accessibiltiy Act which became law in 2005, non profits will all have to comply by 2012 and other businesses by 2025. The use of such terms as “customer service,” positions the act to read that it requires to view our disabled population also as clients and consumers — the latter term which, in our current economic belief and behaviour, renders Ontario’s disabled as more “valuable” citizens.  It is true that the disabled are important part of our society and contributors to our economy, and it makes sad but true sense that our legislators have to enforce the accommodation of all our citizens by using these terms. Economic terms. We deliver a basic human right via “customer service.”

Now that it is soon to become mandatory for an area that I’m particularly interested in — schools — I wonder why there is continued resistance in Ontario to use AAC (Assistive Augmentative Communication).  Adam needs the computer in his school to communicate his understanding of the concepts being taught. It seems like simple ABC to me. In this day and age where technology is common and relatively inexpensive, and where autistic children can indeed excel, it makes little sense that we have to make enforceable the ways and means that autistic children can participate and be included in the classroom and with their peers. This argument goes beyond devices and right down to understanding how autistic children can learn and respond and how the format of the lessons and teaching styles need to be delivered. For if our children are now viewed as valuable “clients,” then one would think they should certainly be entitled to no less.

I for one am working with the act and terminology to encourage service providers unfamiliar with accommodating disabled people in Ontario to adapt and include. Once we can help others to understand that disabled children do not “pull their other children down,” but in fact propel them forward both as compassionate human beings as well as academically, we can create more just classrooms. “Research shows that for typical students in inclusive classrooms, academic performance was equal to or better than that of general education students educated in noninclusive classrooms.” (Exceptional Children, 64: (1998) 239-253) “And, contrary to the worries of many parents of typical students, the inclusion of students with severe disabilities (when there was appropriate support) did not reduce teaching time nor create many interruptions.” (Exceptional Children, 61,3 (1994): 242-253).

Yet the burden of proof will remain heavy upon us for some time. There is not really a day that we do not confront resistance to inclusion (or “barriers” which is a commonly used term), in the name of safety, medical needs, the guise of inclusion under the term “mainstreaming,” competition and more myths about why special needs children should not be included in our communities, schools and daily life. It is up to us to hold steady with this burden  to keep up the research and the dialogue about why inclusion is good for everyone.

As Adam goes to an inclusive school, it seems logical that we learn to teach by teaching and we learn to include by including. Legislation or no legislation, we will still have a lot of work to do in order to help others understand autism and autistic people as valuable and entitled in their own rite.

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Kristina Chew’s recent post, Ave Atque Vale,  reflected what I’ve been writing for nine months now but less forthrightly. She too recognizes that as Charlie grows, the need to blog and write has shifted focus to disability rights instead of vaccines, therapies and the like. I think it’s really interesting to see how many of our lives are parallel, and this is viewable by following bloggers who began writing in and around the same time (most of them are on The Autism Hub).

I look back at my early writing even two years before I began blogging — some two hundred pages of our experiences with different therapies and therapists, supervisors, media and the emotional wrangling that went with it all. I remember being somewhat rebellious to what the experts had to say and was stubborn enough to want to follow our own path. I remember the parents with older autistic kids — there were two camps really — those who said that I was too early on in the autism process mill that “Adam is a cute little pischer now, but wait until he grows up,” to parents of even older autistic adults who quietly observed me and acknowledged the stage I as at, knowing full well that autism is something that will be forever a part of our children and our lives. I think I saw in there eyes some strain as well as some peace — the strain of being burned by autism politics, the strain of raising a child in a world that did everything to fit them like square pegs into a round hole. But also behind the strain was an aura of peace, of time leveling it all, of what we call acceptance for things that just are and will be. This is a part of acceptance that interests me — how people make different decisions and how time weathers us all.

I do not know what lies ahead now for Adam and I. I was a woman who was married and felt some refuge. Now I stand with Adam on my own, no less resolute but having to step back and take some quiet time for his sake and mine.  I made the decision to put Adam at the top of my list of priorities. For better or for worse, here I am.  I am proud of our lives. I am proud of how I’ve lived mine so far. I have no regrets. I cannot change the kind of person I am. I cannot change the decisions I made. We can’t make our husbands, wives or partners want to join us on the ride. Some of us move out into the world and try to make a change. I imagine this isn’t easy on all partnerships. Maybe I’d rather be that woman who makes decisions instead of letting life make them for her. Maybe women like me do not always fit into the world as it stands. Maybe the sense of “not belonging” is deep within me and has given me that will to fight for Adam’s inclusion in this world.

You see, no matter what side of the fence we are on, no matter what happens, this life we all live is so interesting. It is not interesting if we sit on the side-lines and take no stand at all, have no convictions or beliefs. I am baffled when humans get pounded on the head and then cower away (by the way, I took a recent post down on Autism and Laughter study not to cower but because what I wrote was not thorough nor thoughtful and will be the first in line to admit it). I am perplexed when people criticize us and we decide we are too tired to go on. Sure, life beats us down and we need to gather ourselves and that takes time.

But this autism mom, woman, writer, little girl, friend, dreamer, someone’s ex, daughter, cousin — and all the other things that make up who I am — will never, ever, ever give up. I don’t think it’s in my DNA and maybe, I wonder, this is why I have been blessed with Adam. Adam, who has taught me so many things and keeps making me a better, more thoughtful person. Adam will know that life not defined by taking the safe and easy road, but by having the courage to make decisions. My life is changing and therefore, so is Adam’s. His life will change and therefore, so will mine.  I am in the fog of the dust not yet settled, but am keeping a close eye on the pulse. For some of you, my blog may now be a bit boring because of my life change, for others, it may offer some place where we can share some common ground. For this is why we write. This is why we share our stories. When major things happen in our lives, even if we are beaten down, it is how we rise to the occasion  that matters.

In the words of Bob Dylan:

The Times They Are A-Changin’

Come gather ’round people
Wherever you roam
And admit that the waters
Around you have grown
And accept it that soon
You’ll be drenched to the bone.
If your time to you
Is worth savin’
Then you better start swimmin’
Or you’ll sink like a stone
For the times they are a-changin’.

Come writers and critics
Who prophesize with your pen
And keep your eyes wide
The chance won’t come again
And don’t speak too soon
For the wheel’s still in spin
And there’s no tellin’ who
That it’s namin’.
For the loser now
Will be later to win
For the times they are a-changin’.

Come senators, congressmen
Please heed the call
Don’t stand in the doorway
Don’t block up the hall
For he that gets hurt
Will be he who has stalled
There’s a battle outside
And it is ragin’.
It’ll soon shake your windows
And rattle your walls
For the times they are a-changin’.

Come mothers and fathers
Throughout the land
And don’t criticize
What you can’t understand
Your sons and your daughters
Are beyond your command
Your old road is
Rapidly agin’.
Please get out of the new one
If you can’t lend your hand
For the times they are a-changin’.

The line it is drawn
The curse it is cast
The slow one now
Will later be fast
As the present now
Will later be past
The order is
Rapidly fadin’.
And the first one now
Will later be last
For the times they are a-changin’.

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—-

We are all storytellers. The only difference is that some of us write things down. The other difference is that some writers are also artists — able to craft a work in order that bigger ideas are suggested, open-ended, and not written as if to strike a blow to the head. In other words, it’s much more effective to create the sublime message in a work of art in order to convey an impactful message, oftentimes, than simply stating the message itself. Art is the bridge to understanding humanity.

In my last post Why Do We, As Parents, Write? (see several posts down), I mentioned that I was trying to respond to a series of self-inflicted questions. Several of the questions all have generally to do with the consequences and benefits of writing about children with the additional peril of writing about disabled children — usually children who cannot speak for themselves.

As I’ve noted, I have numerous reasons for raising these questions at this point in my four-year blogging history. Firstly, I am going through a divorce. I hesitate because the story I would tell would still be influenced by my being too close to be self-deprecating, no matter what the circumstance. I tend to think that all great memoir writing about difficult life circumstances has this element in it: the ability to see oneself and one’s on imperfections even if the action towards you was unjustified, as well as the ability to be compassionate to characters who have done unjustifiable acts. In what I believe to be interesting narrative, everyone has their reasons which leaves out judgment. To understand others and their motivations is the foundation of all good writing and formulation of interesting characters. Of course, I am, as they say, still “too close” to write about my personal life, if ever I do at all. I will likely have more interesting things to write about.  In order to tell really good stories of truth or fiction, we need to understand our perspectives and assumptions at a particular point in time. Without dissecting them, our writing and characters remain flat.

One concern I have is for my son to read what I write about him. I want him to feel that I was real and wrote about him with truth, compassion and dignity. Compassion is the key to telling true stories, I believe. I want him to think that I was a good artist who didn’t have to expose every detail, but got the bigger point across. So, I have made a commitment to him and to myself to write when I feel I can truly step away from things that are still emotionally charged. It’s not that I want to be emotionally distant – indeed my emotions are a full part of my experience and they need to be written.  It’s the manner in which I’m able to write about them that matters. It is the art and the craft of writing that can elevate a trite piece of writing to a piece that lives long after we’ve moved on.

The next issue I am having is one of revealing details about my son at this point in his development, perhaps influenced also by a divorce process (and thankfully both mom and dad are doing an excellent job as parents, still) as the vulnerable need not be made more so. This is my paranoia as his mother and I realize I am supposed to think about such things. It is my job and obligation. Even if he is resilient and strong (as we parents generally come to realize about our growing children), we are on our guard nonetheless. Writing about the vulnerable – be it children, disabled children who can’t speak for themselves, disabled adults, the aged and so forth, requires us to think much more deeply about how we write.

As I see Adam develop, my attitude has changed and softened significantly than at the time of his diagnosis. I think there is a huge urge of many parents to write about the diagnosis because there is narrative tension that is still interesting to the outsider. This is when most writing about autistic children really gets done. We read perhaps too much now (just think that a few years ago there was very little), on that D-Day or “diagnosis day.” There is a lot of interest from new parents of disabled children to relate to the pain and conflict of early diagnosis. Little is written about learning how to live with a disability in the sense that the worry dissipates. Mostly, what we read are memoirs about how parents seek to cure their children instead of learning about themselves as parents in a world that is filled with different kinds of people. Donna Williams remains the top of my list of autistic writers who not only write beautifully and artistically, but tell a story that goes beyond childhood. The tension is still there, but the story isn’t sensationalized for the sake of selling books.

Let’s face it: our lives are not like everyone else’s, which is why so many of us need to write.  “Suffering has always animated life-writing,” says Arthur Frank who has written about his own illness. Indeed that familiar theme of finding peace, a spiritual awakening, an appreciation for life itself, is a kind-of triumph-over-struggle theme that appeals to most of us in a challenging world. I think of Audre Lorde and her cancer diaries and poems that I devoured after my two cancer surgeries last year. Her honesty and artistry helped me see myself as fully human even with my stage of dwindling self-image and pain.

Yet what is especially disturbing to me is when that theme is diluted into a sugar-coated story, only telling of the good stuff — you know, how all our children are “angels” kind of rhetoric.  To my chagrin, I’m afraid that much of the “acceptance movement” has turned saccharine and in it a fear to acknowledge the challenges and the pain as well as the joys.

Conversely, when all a parent does is complain about how horrifying their disabled child is and disruptive to their lives, without qualification or deep circumspection, is equally if not even more disturbing, for we get a sense that we are not being told the whole story, or perhaps a story with a particular agenda and worse, we are being told that disabled children are a blight and burden on society thus threatening their right to exist. So in order to write a good memoir, and how we define what is good if not ethical life writing is what’s at stake here.

Frank says, with regards in how to respond to illness and disability, “what is done within the body, what happens in relationships and how existential and spiritual attitudes change – is presented as a sequence of choices. The writer’s identity becomes crucially implicated in how she or he makes these choices: a person’s responses are a measure of his or her character.” (p. 174 The Ethics of Life Writing).The stories we choose to tell and how we tell them in the case of writing about our children, is therefore an indication of our character.

Somewhere along the road to raising children, either at the time of birth or later on, our expectations were thwarted. That in and of itself has been enough to warrant many people to approach us and say, “you should write a book!” But how good of a book? To what end? What are we trying to achieve?  My soon-to-be ex husband even came to me regarding the circumstances of our divorce stated “if I were you, I would write a book about this.” What an invitation!! Not that I will necessarily take advantage of it for my own personal gain, for that is not the point here.

I did, in the past, write about many encounters with friends and family regarding discussions about autism and their reactions to Adam to which I was angry (an honest emotion), but used as illustrations of a day-in- the-life of an autistic family. I felt that these examples were especially important to illustrate how our society has been trained to react and respond, no less treat, disabled people. Those encounters in mere blog posts were enough to achieve that tension. In as far as maintaining relationships is concerned, some managed to stick by me and support the purpose of the posts, and others couldn’t handle seeing themselves within the narrative. I once received an email from a friend’s husband referring to my writing as “getting things off my chest,” thereby diminishing my feelings, our significant experiences and my writing. Yet, I write and express to get things off my chest, that’s for certain. It’s just that I hope not to sound pathetic doing it. I hope the writing transcends the individuals to illustrate the more important points –  and the point that we all have much to learn.

But isn’t that what writing, gossiping, telling stories is all about? I am making a general assumption here that all gossip is negative, which isn’t necessarily true. I will also suggest that gossip, for the most part in my view often has the sole intent of denigrating another person. So in telling true stories, intention matters.

Telling stories, it can be argued as parents of disabled children, is still important. It is especially important that we as parents write  well — truthfully and with dignity. I cannot say that I have accomplished to my satisfaction, the “writing well” part. To accomplish this, it takes great deliberation and like anything, practice. To live with disability in the family, as in any other oppressed minority group, is to also live politically whether we like it or not. This adds another sensitive dimension to our writing.

Many parents of typical children will not experience this to the same extent, if at all. For me to tell those stories during those early stages of Adam’s development were exceptionally important in navigating our way through ignorance and understanding it – my insecurity about such statements admittedly came of a place where I was also in their shoes, that is the shoes of the ignorant – completely unaware of the full extent of disability itself — meaning the community, the politics, the meaning and history of disability, the lives. Should I keep these stories to myself or do they benefit not only myself in my growth as Adam’s parent, but also others who are on the same path? Would those people still be my friends if I hadn’t of told those stories?  What is friendship anyway if we cannot be honest? Right…? (I am happy to report that the really great friends still hang around even if rigorous disagreement or debate is involved). Of this I would emphasize that the intention is important with regards to telling our stories. It might just be difficult after all, to be a writer.

In her essay, Friendship, Fiction and Memoir: Trust and Betrayal In Writing From One’s Own Life, Claudia Mills  discusses the risks of writing about one’s family and friends and seeks the meaning of friendship as her guide. Using Aristotle and Kant — “we seek the good for the other for his own sake and not our own,” (Aristotle) and “The strictest friendship requires an understanding friend who considers himself bound not to share without express permission a secret entrusted to him with anyone else,” (Kant)   –Mills painfully deliberates, as if her conscience is eating at her: “What contexts are we primae facie justified in sharing the stories of our most intimate associates with others?”

She suggests that she couldn’t have relationships if she couldn’t talk about them – that we benefit from talking about them and notes how secrecy can be “corrosive and damaging.” Yet there is a difference between talking or writing at someone else’s expense, as I said, in order to hurt them. While telling the truth may be hurtful to others, or be outright embarrassing, it is this shame that is the most costly to our peace of mind. There is nothing more liberating than living your life out in the open. But living mine out in the open does not necessarily mean I have the right to live Adam’s out in the open for him. So we must choose our vignettes and words carefully, without over-editing which also takes away from the authenticity of an interesting story. Mills takes the easier route and chooses to write fiction, even though her family and friends seem to recognize themselves in her stories.

For parents with disabled children, this writing can be a cathartic process and a way of breaking down the reductive view of our disabled children. Arthur Kleinman, in The Illness Narratives, suggests that people who are ill are reduced as people in terms of their pain and debility, or their illness. That proverbial medical view of the disabled person as a mere patient instead of a complex individual remains a part of the demoralization process. Instead, Arthur Frank turns it around. He calls his personal narrative a “remoralization process,” an act of telling a counter-story to the ones that we see all too often in the news and Hollywood and much of literary media where disabled people are used in the background like bridges to the “real” characters. In looking at narratives like Michael Berube’s Life As We Know It, and Thomas Murray’s, The Worth of A Child, and Cranes’ Aiden’s Way, among other parental narratives, Frank points out that we as parents write in order to break down the assumptions – that our writing can be “acts of justification” as we write to justify our children’s right to exist.

As I continue my writing and work to become a better, more artistic writer (I am hopeful with much more work), I am aware that to summarize Adam as a series of impairments, to finalize his character in the narration, is what the medical community already does. So I want to avoid this at all costs. “[Reflexivity] is moral work, since what’s at stake is personhood and its entitlements.” Most of us are all too aware of society’s rush to categorize our kids, to judge them, reduce them instead of viewing them as people with a right to be included in everything.

This is a great risk that we undertake as parent-writers — this act of finalizing our children, defining them  and thus imposing identity that has really not yet been fully formed.  As Frank notes about the writers of the exceptional memoirs cited above, “They resolve this dilemma, and keep a dialogue open, by refusing to say any last word about their children. The child’s future – his or her horizon of possibilities – is kept open, though this requires nothing less than redrawing the horizons of human possibility itself. These writings become teachings in the morality of respect: not principles of respect, as in Kantian respect for persons, but practices of respect, which the writing not only describes but reflexively exemplifies.”

I hope in my next post about writing about children, I will be able to compare the recent writings of Jenny McCarthy and Temple Grandin’s mother’s older book A Thorn in My Side, in order to illustrate what I consider to be problematic in the name of our children’s dignity and telling our true stories.

As for my story, it’s easier to dance around it than tell it at the moment during my set of current circumstances. I am only left with the deliberations of what and how to write next.

References:

Credit for the term “narrative tension” goes to Arthur Frank in his essay, Moral Non-Fiction: Life Writing and Children’s Disability, from The Ethics of Life Writing.
Claudia Mills, Friendship, Fiction, and Memoir: Trust and Betrayal in Writing From One’s Own Life, from The Ethics of Life Writing, edited by Paul John Eakin, New York: Cornell University Press, 2004, pp. 101-120
Ibid, p. 102 & p. 110-111.

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