Proud Pictures

Here's my little guy just minutes ago playing with a girl next door. It's warming up here in Toronto.

Love Makes Me Stay

Many thanks to Aspiegirl who sent me these videos this morning. Indeed, what makes us stay no matter what? Love.





Adam must be sensing my change of mood. He is having another happy day. How much do we as parents and teachers have to look at ourselves??

When the going gets tough

...the tough get planning.

Some of you emailed me about Adam's anxiety...thank you. Yes, there has been a lot going on in our lives the past couple of months and being as sensitive as he is, he does absorb everything.

One thing that works for me is to recalibrate and plan again. Get everyone on board, and ask for support.

By the way...I believe some comments are not getting through on this blog. Is anyone else having difficulty with this? Some people have emailed me saying they tried to comment but... I really haven't received these comments, so please keep trying.

Finding the Joy in Autism

This is my mother with Dani -- an autistic young man (21) whose name is celebrated by his mother, Kathy Laszlo in an organization called D.A.N.I. (Developing and Nurturing Independence) to get people with disabilities working in our community. I was honoured to be given an award at this gala. I spoke with many parents who have worked with their children through the years, who find the need to continue to celebrate despite the challenges.

I have hesitated renaming my blog. It was intended to make others think about finding challenges and celebrating lives despite them. There are people who do not understand autism, who speak about it in unfair terms, who abuse our most vulnerable, and so forth. Many of you have understood the idea – the rebalancing of views as it were and protecting human spirit. Many of you have not and have taken offense to the title. I am sorry you feel that way and hopefully you can come to see why celebration is important in autism as it is with any disability and even in illness itself -- because we believe in life. I am not sitting in one “camp” or the other. I think there is merit to both "sides" and we have to begin to define what unites us. This is a moderate approach – not falling into the hype of hysteria and not languishing in self-delusion. I am really empathetic to the struggles that each family faces. A lot of what I do is self-reflection and listening to other voices. How can you not? As we learn and share, we evolve overall. Being married to an ideology is dangerous in and of itself.

Amidst all of the doom and gloom messages about autism and disability, as a parent, I became so frustrated that others could never look beyond the challenges that confront Adam daily and instead focus also on his strengths so he could receive an education that is beyond remediation and correction – the latter which increases Adam’s anxiety. While we still must deal with the challenges of autism in our own family, we must find the strength to run Adam’s team, deal with sleepless nights, and lately, anxiety. Would I want to alleviate Adam’s anxiety? You’re damn right I would. I don’t care if Adam flaps his hands in happiness, or looks different, but when a child is distressed, it takes even more work to not only find out why and deal with the source of anxiety. I’m certain that all parents experience this day in and day out sleuthing and trying new things. One can try a medication, but it may not work, it may not deal with the source, or it may cause serious side-effects. Or in the best case, it may work. Dealing with this is a process of elimination of all the things that could possibly be causing the stress – or the confluence of events and environment and physiology that makes one answer nearly impossible to find. In the meantime, as it is happening to me, I become more distressed and sad and I keep remembering for all the struggles that we’ve gone through together, we somehow find that joy again. It’s what we live for. It’s what we must live for and protect unless we become Nihilists. In autism, we need that. We don't ignore the struggle, but we protect the joys.

Would I like to live my life so that family members and friends really understand the complexity of our lives – trying to “live” it like others while not really living a “normal” life at all. Trying to fit into any category of normal isn’t a reality, and I find, very stressful. Is it comforting when a family member questions why I don’t answer the cure-all question with absolute certainty? No, because it doesn’t understand the complexity of autism and our reality. If autism could be cured, in our reality, people with autism might not be treated with the respect they deserve. Then again, if it is like Downs Syndrome – a way of being without a cure - how will all of negative referencing come to affect autistic individuals in the future? While many are busy finding a cure, others are complacent in waiting for it and we are not getting into schools, not getting enough supports, not getting enough accommodations. We simply are not accepting what is real right now: that there is human difference in our world. In the end, one can sometimes feel very isolated in the sea of misunderstandings, complexities and grey area. Grey area is what makes most of us up, and definitely makes up the landscape of autism, which is to say humanity itself.

I still believe that attitude is important and asking for support in schools and society will succeed with constructive dialogue, and in trying to understand autism better. I still do not agree with the hysteria we see in the media. I agree with a more strategic and respectful approach to achieving services for our kids while also supporting science that strives to be unbiased in this regard. After all, we are dealing with important people here – our children. They deserve to be treated as people, not half people and not in snappy little sound bites that manipulate heart strings. The last thing we need, or can endure, is disregard and misunderstandings among the other members of our communities.

I also wish to say that we need a multitude of supports and services for our kids that truly respects all that they can give to society. Adam can give. He can receive. He can learn. I want to find out what is happening to him that is causing his distress as any other parent would. It sometimes makes me feel helpless and want to cry. Many of you are right, you do not always FEEL the joy in autism, but we must wait for it, strive for it, and find out how our children can be the best autistic people they can be. For me, it comes down to happiness. When Adam smiles, all is right with the world again.

Finding the joy in autism – what it means to me – is a commitment to Adam. He needs me to be positive and strong. When I am down I know how easy it is to wallow about something that is not part of our reality. But I notice it doesn’t help Adam at all. What would help him is a coming together of all autism families to achieve our mutual goals together. We need to celebrate our diversity as parents, the diversity of our autistic children, and a diversity of approaches to helping our children under an umbrella of ethical debates with regards to those approaches, because we are capable of constructive debates. Aren’t we? Despite other’s attempts to factionalize me, this blog seeks to debate how autism is represented because it concerns my autistic son. If titling this blog The Joy of Autism, or the event last October, The Joy of Autism: Redefining Ability and Quality of Life was the only way to get people talking in Toronto or online, then it was a good thing. We are waiting much too long for the services, accomodations and for the respect our children so rightly deserve. We should represent Adam and others with dignity because they are vulnerable and sensitive. I can’t imagine that other parents, no matter how they’ve interpreted the “joy of autism,” would not want the same for their children. It is my dream – and as the little boy says in the Goodnight Moon video: “Dreams are very important.” May we all work together, question everything in a constructive way, and be able to share our joys and struggles.

The Right To Choose

No matter what you do or what you write, there are some in the blogesphere who make up the facts or try to persuade people that to do anything other than an ABA program is akin to driving your child over a cliff. They are persuasive, I know. I know because I was at a place for two years where although I became angry at the poor quality of ABA service here in Toronto, it was still hard to let go because there is little else provided. To this day there are people who came from behaviourist backgrounds on Adam's team because in autism's recent history ABA has been the only funded service for autism. Many ABA therapists, however, still know little in how to employ a real literacy program, an assistive device program and more. An early ABA program is fairly rigid. If it’s play-based and incorporating other strategies, it is no longer an exclusively ABA program. So perhaps we need to rename our advocacy to address an autism program – one that is devised specifically to each autistic individual with the goals and means that befit them. Of course, I’ll never say this without also adding that we need to continue to understand autism primarily from the people who are autistic.

As parents, we will always have doubt – one is not human without it. It is like an embedded checks and balance system. Still, we must ultimately trust ourselves and our autistic children. Too often, many put little faith in autistic kids. Yet, to inspire the greatest fear – that it is necessary to employ 40-60 hours of "treatment" or everything is doomed -- is cruel to the parent and the child. Most of the advocates who speak like this (who say that this kind of therapy time is necessary) have older children who still require accommodations and service. The message: panic doesn't pay (at least emotionally). Some children will grow up "looking less autistic" than others by virtue of who they are and yes, the environment they live in to some extent (I can't answer that nature/nurture argument and, it seems, neither can science). Therefore, finding ways to accommodate all autistic people throughout their lives cannot happen with fear as its engine. It will not help us think logically. It will only provoke us to react in emotional ways that may ultimately harm the autistic person.

ABA is not our first choice in this household. I have seen programs, however that call themselves ABA that are not quite ABA anymore. In addition, the scope of autism is so diverse, that one type of therapy suited for one child may not be suitable for another. The ABA advocates, about to March at Queens Park and in Ottawa don’t want us to have a choice. They don’t want speech therapy to be funded, or occupational therapy, or assistive technologies, or play therapies. They want every child to receive ABA “treatment” that many parents in Canada do not want exclusively or not at all. Others may think that if they choose this one treatment now, that either,

1. they will at least get a service -- the "better than nothing" philosophy;
2. or the autism strategy will evolve after ABA has been legislated.

Many of us want our autistic children to receive a variety of services and an ability to choose what we feel is best for our children. We want groups for our children to belong to, camps to go to, programs to participate in that are not all ABA driven, but sensitive to the needs of our children. "Regulating" programs (one has to consider the measures we use to regulate) in the schools will only create a one-size-fits-all service that will not meet the needs of everyone. I recognize that the "right to choose" has real ethical implications and the treatment of autistic individuals can be compromised, and every discussion about education for autism must take place under this umbrella.

Even though we see the tide turning for a greater variety of services for autistic individuals in Ontario, the ABA advocates can’t endorse it because it wouldn’t support their claim that ABA is “the only scientifically proven therapy” for autism. Yet, we all know better. We all know that we need a greater understanding of autism than we already have, that we need to work harder, and that this is not the end of the line. Autistic individuals deserve more than the premise that ABA bases itself upon (to make autistics "normal"), and a better quality of accomodations and service.

A friend of mine came to me and said, “but isn’t scaring people the only way to get the government to do something?” Does Autism Speaks’ tactics – claiming that we have an epidemic (when we don’t have the science to substantiate that claim), in order to get more research and services -- the best way? Is calling autism a disease akin to cancer a panic button to get politicians to listen? Perhaps. No one said that government officials listen readily, with so many others vying for dollars.

But does the end justify the means? Does advocating for ABA help obtain more services, or does it take away the opportunity for a better quality of service such as inclusive education, and a diversity of options for an equally diverse population? With so many parents using social skills groups, OT, SLP, and other play-based strategies, shadows, life skills training, and more, should we not be including all of this in our advocacy efforts? In so doing, should we not make the government aware that there is a greater problem here that strikes the entire disabled community: the right to be accepted, accommodated and included? The ABA advocates completely disregard what the disabled and autistic communities (in this case, people who are autistic) have to say about all of this which should shed some light on the bigger problem here.

It strikes me as suspicious when a group attempts eradicate any other voice when we only have so much more to gain for the greater autism community by opening this up. We all have autistic children, we have autistic self-advocates in our country, and we all need a place at this table.

Life, Language and Lessons

lan·guage (lăng'gwĭj)
n.

Communication of thoughts and feelings through a system of arbitrary signals, such as voice sounds, gestures, or written symbols.
Such a system including its rules for combining its components, such as words.
Such a system as used by a nation, people, or other distinct community; often contrasted with dialect.

A system of signs, symbols, gestures, or rules used in communicating: the language of algebra.
Computer Science. A system of symbols and rules used for communication with or between computers.
Body language; kinesics.
The special vocabulary and usages of a scientific, professional, or other group: “his total mastery of screen language—camera placement, editing—and his handling of actors” (Jack Kroll).
A characteristic style of speech or writing: Shakespearean language.
A particular manner of expression: profane language; persuasive language.
The manner or means of communication between living creatures other than humans: the language of dolphins.
Verbal communication as a subject of study.
The wording of a legal document or statute as distinct from the spirit.


As usual, I'm thinking about language and literacy these days and we continue our efforts to assist with Adam's computing and literacy in order that he be able to type more proficiently (or talk) when he's older. Looking at that definition above, Adam does share a language with myself and others, even though he's not yet fully verbal. There are indeed many legitimate ways to communicate -- all we have to do is watch and listen.

I've been asked to lecture at MIT this May for the Autism and Technology course. For certain, Adam's expression of understanding so many things is often first manifested on the computer. A multi-dimensional environment works best for him: text, visuals, computers, real-time experience in a variety of formats. This is how comprehension comes together. It's delightful watching that "a ha" moment in Adam, like I've seen this before and I know what it's about kind of interest. I can see him beam with pride -- and he doesn't need me to say "good job," either. It's a pride that is self-derived. I need not contrive an external reinforcement because he knows when he's done something he takes pride in -- he understands accomplishment. (I do, however, tell him everyday that I'm very proud of him).

Adam began to talk more this week. He has been trying to say sentences that come out like Baby Mo--ar-a-ar-a-ar. That means Mozart. He is referring to the Baby Mozart video he likes to watch. Or "I wa chic-a-bewm-bewm," with such determination. That means Chica Chica Boom Boom, by the way. Everything is coming out in two and three string syllabic sounds. I find his language development wonderful to experience. Every time I try to teach him too fast too soon, I can tell I'm teaching as I would a typical child. I need to break stories down. First the words with the picture, then building simple sentences. I have tried asking questions on sheet of paper like this:


My name is Adam. I am a _________________.

Boy----------------------------- Girl


I give him a pen and he crosses off the correct answer. I'm trying with more complicated questions than this too.


I also am finding that if I'm teaching him pre-academic skills, they are better taught first on the computer. He has learned to sequence, match, match words to pictures and so much more on the computer first. Now I'm beginning with stories and comprehension there. Then, it becomes easier to transfer that skill onto the "floor." We are still playing around with conversations on the computer. He happily participates by sitting on my lap, but I must facilitate the answers on his behalf, as the art of this kind of typical conversation is a skill that requires time. It is rather nice to be trying this together on the computer.

The more I can get for the computer that I can transfer off, it seems, the better. I found stories that read and show the lines as it goes at a library site. I use the hyperlexia kit for building sentences, and that seems to be working well too. He's having a good time using Cheaptalk 8 -- he can already say the word (request) but I find it useful for recording whole sentences. The visual, the act of pressing the button and my encouraging him to try saying the whole sentence is a means he seems to enjoy. He can say the whole sentence when I ask him to try most of the time.

We've been busy as usual around here, but it's always exciting to see Adam develop on his own. He challenges me to try new ways to teach (and his learning is always evolving), play and interact with him. He plays great games like "under the blanket" where he likes to hole up with me (and others) and smile at you in the dark while he wriggles his body with joy.

This morning, Adam and I took a little break and spent Saturday morning lounging in on an early spring morning adorned with showers. Thanks to my friends who support us, and who remind me to take a little time. It's something that every parent needs to do once in a while, because we all try to do so much. I can't wait for the spring flowers and to walk barefoot in the grass. It is important to remember to do it with our kids.














Thanks also to Christschool for this, who seems to be thinking about the same things and speaking the same language:

Life

It's my birthday again. I'm about to go out with my friends because Henry is out of town -- the first time in ten years -- with Max. Since I've been very young, I've been taking photos of myself every once in a while -- the kind that look a little severe and really close up. Sometimes I just take a part of my face, and often I keep my face blank and write about that time in my life. It ends up looking a little like a collage with writing all around. So, {sigh} this is what forty-two looks like close-up with makeup on.

It started to rain today. But the air was so mild -- like spring wanted to peek in on me and say a quick hello. It spat, it poured, and now the sun has come out. I guess it's kind of like life -- ever changing. I used to do the typical birthday stuff. For the first time, I found that I don't really care about MY day. I care about what I can do so that others can enjoy "my" day and at the end of the day, that is what has made my day.

Today I:

1. Gave an old gentleman burrowing through the garbage something to eat and had a lovely conversation with him. I don't think I will ever forget his grace and his warm smiling eyes. He showed me how life can turn on a dime and deserves no less respect;
2. Gave Adam a birthday present -- a lollipop -- one of his favorite things, and he showed me how much joy he finds in simple things. Life is still pure and uncomplicated at age five;
3. Am buying dinner. I want to continue to share my life with my friends and family because life can get too busy and we can forget to spend time with them.
4. Wish all people I know and those I don't well, because we really do belong to each other. We share this life, this community and we are more united than we are divided.

The Dream

Two Wrights Make a Big Wrong

If you caught Larry King Live tonight, you’ll be battoning down the hatches: watch out, beware, autism is a big big scare. If you believe in fairy tales and the big bad witch, autism is going to come and take your precious sons.

There is was again, a bumbling Bill Cosby stumbling over his words, “a point that was missed is that there is no eye contact,” he explained, “like they’re not even in the room.”

Toni Braxton shed her tears for her five year old son, the same age as my Adam. “Autism Speaks reached out to me,” she said. “I’m so grateful that they did.” Honey, don’t you know that Autism Speaks is reaching out to every glitterati they know who has an autistic member of the family? Don’t you know that you mean big profile and bucks for them? It sounds like Toni needs some real support. Her son is truly gorgeous, smiling in his picture.

And hey, weren't all the kids smiling, by the way -- these tragic, pitiful examples of humanity stolen by autism? Please.

And where were these wonderful kids? Where were the autistic adults? Hmm. Isn't it curious that Autism Speaks speaks without autistic people present?

And then there were those increased “incidence” figures again. That epidemic rise in autism numbers that even the CDC had to explain that the incidence of autism hasn’t increased.

And then there was that 40-60 hour a week “prescription” for our kids – that this is the only way to beat the autism out of the child. No wonder they are crying. Who wants to live like that? No child needs this kind of "intervention." It's not proven and it's torture.

And yet, any progress that an autistic child displays is BECAUSE, they wish to claim, because of their interventions without acknowledging that kids develop, all kids develop, even autistic kids develop, no matter what.

Tailored programs, loving programs is what we need -- a humane understanding of autism as part of a person. Our kids require assistance, for sure, but they also need to be appreciated as autistic people. Our kids are not possessed. Autistic kids display eye contact at times, and sometimes they cannot because it is painful, not because “they are not even there.” They certainly have empathy and plenty of it. Adam may not come and say "mommy what's wrong," but he sure knows when something's wrong. Just because he doesn't give me the typical response, does not mean that I assume he has no empathy! The day he tells me, or types it out and he may reveal more than I ever imagined about his ability to perceive and understand many things.

Please stop demonizing autistic people. They are real people. When we went to the bookstore the other day, and Adam wanted to hop over to a set of books, two women stopped and stared and whispered “autism,” like it was a dirty word. Is this what Adam has to look forward by the continued work of Autism Speaks? Does Adam get to look forward to a world that thinks he is not there, that they can say or do things because they think he doesn’t know and understand? Does he really deserve the poor quality of services he will end up receiving because of such horrible stereotypes? This is what selling autism does to autistic people. It destroys not "the autism," but the very person they believe isn't quite human, or not "with" us. It destroys the human spirit.

It’s time to end the hysteria and begin the work. It’s harder to accommodate than to kill autism or shall we say, the autistic person.

Autism Speaks does not speak for us.

You can also listen to a podcast where I raise the considerations in how we represent autism on Autism Podcast.

New TAAProject Website

The new Autism Acceptance Project website is now up: www.taaproject.com. . The gallery will be expanded for more art exhibitions that are curated by myself and other guest curators. There is also a new discussion forum there where we can discuss latest news and events. The Autism Acceptance Project is starting is support group soon in Toronto, lead by autistic adults for parents to ask all of their important questions and discuss their fears. Our autistic leaders are there to reveal a little more about what its like to be autistic and growing up with autism so that parents can get an idea of what it will be like for their children and family.

There will be more. Please re-check The Autism Acceptance Project website for updates on upcoming programs and events.

Many thanks to Kevin Leitch of Autism Hub for helping to reconfigure our website and for the TAAProject advisory who made comments on the site before we went live. Kev has done a great deal in keeping our community together online.

Jonathan Lerman and Elijah Wapner on MTV

Please check out Living With Autism: The Teenage View on MTV tonight at Sunday night at 9 Eastern.

Rebuilding the Autism Foundation

Many readers of my blog will understand that I am committed to finding acceptance for autistic people and a deeper understanding of autism that achieves education and accommodations for children and opportunities for autistic adults. I hope that we can build the bridges that support autistic people everywhere.

While I strongly believe we should celebrate autism in many ways, it is also necessary to discuss why something is inherently wrong. There is such a thing as right and wrong here, and we have to uncover it. By attempting to make something like a treatment “savory” or workable because it seems okay in some ways, may not necessarily make it ethical. Margaret Somerville, ethics and law professor at McGill University and author of The Ethical Imagination, acknowledges a type of situational ethics, where she notes that epigenics – the study of the interaction between genes and the environment, may modify each other. So while it is becoming difficult with that in mind to “draw the line,” she says, “what is or is not natural is not simply the matter of an end result, but involves how that end result came about – in particular, whether there was human intervention that gave rise to it, and whether the intent of that intervention was to achieve a particular result.” In sum - with the negative marketing of autism as a fate worse than cancer, even though autism is a disability not an illness, discussing our children in pejorative terms in public, or for the purposes of obtaining public funding, and with interventions to render the child “indistinguishable” from others – does the end justify the means? Even if one has the best intentions to “accept autism,” as is now the becoming the case in the rhetoric of autism organizations, does the means of “correcting,” “curing” or “remediating” autistics, ethical? Perhaps we need to use Somerville’s ethical analysis as our guide in autism; that by determining our intent in autism, we come to a conclusion of how to regard and treat autistic individuals in science and in society.

In many instances, I like to illustrate the many manifestations of autistic discrimination – from treatment, attitude and access, to marketing by some autism charities. If we don’t begin to understand the many facets of discrimination, we can’t do anything about it. We cannot improve upon the education our children deserve. A commitment to celebrate difference, to call autistic people a joy, is a peaceful means to express how much our autistic members of society, our children, mean to us. In the midst of adversity, we continue to “sing,” as it were. Elie Wiesel, Nobel Laureate, Holocaust survivor, author, human rights activist, and recently knighted, alluded to “singing” and being “joyful” in the midst of adversity in order to maintain one’s sense of self, and community. In short, we celebrate life, all life, because it is so very fragile. He said in a speech in Toronto, “we Jews… we dance.” That has a lot of meaning in the Jewish community which is constantly surrounded by intolerance.

The purpose of calling this blog The Joy of Autism is the same. It is a means to uphold and protect the human spirit, namely, the spirit of autistic individuals as valuable members of society. If, as Hubert Humphrey said, that the measure of a society is how it treats its most vulnerable citizens, can we honestly say that we treat our disabled members with the same honour and dignity we would ourselves? Many find inherent problems in Humphrey’s statement, as it suggests that the handicapped live in the “shadows of life,” but there is some wisdom in the statement itself, aside from the man’s beliefs or convictions. How might we extend our understanding of acting morally and ethically in light of the autistic and other disabled communities who are involved in self-advocacy?

A couple of years ago, my husband and I built a new house. I took over the project until Adam was diagnosed with autism between eighteen and nineteen months of age. By February 2004, while we started “treatments” for autism because that’s what we were told to do when we were first introduced to this community. At the same time, I visited the building site. I noticed honeycombs in the walls and cracks in the foundation everywhere. The air was freezing – an inhospitable environment to building in the first place. At the time I thought this was a bitter irony, like my life, and now my house, were both “falling apart.” I was concerned about the foundation despite my builder assuring me that everything would be okay, so I hired a inspector. Sure enough, the foundation was irreparable and had to be torn down, so I’m glad I trusted what I could SEE rather than what I was TOLD by a building “expert.” We had to start building all over again. In retrospect, it wasn’t so bad, even though it seemed like a catastrophe at the time. It set us back a mere six months. We replaced our builder, and now we have a stable home. I was really glad I caught the problems so we could build properly and live in a structure that isn’t wrought with problems that require constant fixing. That would be upsetting, exhausting, and costly.

The reason why I have to talk about ABA and certain remediations or “treatments,” is because they are built on a premise that we have come to recognize as discriminatory. Perhaps we did not recognize it at the time, when we weren’t as publicly aware of autism, but the issues have persisted for a long time in the area of all disabilities – this idea of “treating” as opposed to “accommodating.” Since we have become very aware of autism since the early 1990’s, we have come to learn that autism was built upon a foundation of wabbly assumptions and we have erected the walls and supports that were based on them. Now that the “house” is nearly complete, while in the meantime we have come to learn about autistic dignity, intelligence and Personhood. We can now discuss the ethics of “treating” people and how that reflects in the way we regard autism and autistic individuals. Autism “rights”is built upon another strong disability rights movement gaining momentum in universities around the world: disability studies departments are viewing disability and autism from various cultural and ethical frameworks. Based on what we continue to learn from autistic self-advocates and other disabled individuals who speak out against the behavioural and medical “treatments” they were once subjected to, should we stop construction?

Some insist on building upon these existing shaky foundations. We want to decorate nicely and put in the windows and an expensive roof, despite the fact that we have crooked walls. We keep hearing about some new “trend” in autism treatment, some new operationalized method. As such, we keep failing – there is a falling wall here, a leaky ceiling there. In order to stop the patchwork at the cost of continually having to repair, we have to consider the foundations that we’ve built our assumptions about autism, and the ways we have come to “treat” it. We may have to consider tearing down the house and rebuilding. It may seem exhausting, but it’s necessary. Is this merely another painstaking step in our evolution of understanding disability? Is it an evolutionary progression to viewing and assisting the disAbled, and autism as part of the larger disability community, with their assistance?

Re-reading many of the early books on autism, I am able to recognize bias in science and the diagnostic manual itself. This might be considered the primary basis for the manifestation of discrimination in autism – a foundation where individuals with a certain difference were then generalized and classified in terms of deficits by Hans Asperger and Leo Kanner in 1943.

Ralph Savarese, author of Reasonable People: A Memoir of Autism and Adoption captures the problem in the introduction to his book. He notes that "in the 1970’s Beate Hermeline and Neil O’Connor, both cognitive psychologists, focused on the mental structure of autism in a systematic way. Along with Lorna Wing, they note the “core problem” being the triad of “impairments”: the impairment of social interaction, impairment of verbal and non verbal communication, and impairment of play and imaginative activities." (Savarese)

Savarese, in the following paragraph, proceeds with introducing the American Psychiatric Association’s current definition of autism in the DSM IV, which follows and expands on the lists of “impairments.” He says, “it isn’t difficult to see how this definition derives from the portrait that Wing and others have sketched – over and over, I might add, as if themselves autistic. In short, the reigning view posts a devastating global disorder that robs people with autism of their very humanity. Moreover, it offers little hope of treatment but for modest behaviour modification. No wonder parents of autistic children panic when receiving a diagnosis.” (Savarese)

No wonder. Yet it need not be so. It is possible to view autism more fairly, taking the view from autistic and other disabled individuals into account. It is possible to value disabled individuals and protect their right to accomdoations, and to protect their dignity.

An Autism Apartheid

What makes autism “advocacy” so problematic is that we have inversions of truth. These inversions are pernicious as they stake claim for “equal rights” for autistics in these “treatments’ based on impairments and deviance from the “norm.” We have organizations that “fight for autism” but under further investigation and in the context of the larger autism community – in other words, autistic individuals and parents who represent their children’s right to be autistic– we can see that “equal rights” for one group does not automatically equal an ethical response to the treatment of autistic individuals they are “advocating” for. President Ahmadinejad of Iran is calling for the destruction of Israel under the same rhetorical premise. Does this make Iran ethical or right? We witness such inversions of truth or of rhetoric all the time for nefarious causes.

When one specific treatment is promoted for autism, which continues to segregate and identify children in terms of their deficits, when we do this to the non autistic population, we are witnessing an apartheid. In fact, we are witnessing it more in autism today than many other diabilities. When it is suggested that special needs children be screened before being allowed into schools because they are viewed as potentially dangerous, as stated in The Boston Globe last month in the article: A Clash of Rights in Education, we are witnessing an apartheid. No other society which represents its “people” advocate for the fundamental change to personhood or autistic-hood. Conversely, the Downs Syndrome Society of Canada celebrates and promotes the dignity of the Downs community. They advocate for their rights, in employment and acceptance of them in society overall. Sadly, despite such advocacy, we have a ways to go as over 80% of Downs Syndrome fetus’ are aborted in Canada. It reflects that society still understands very little about living with disability. The current understanding is still overwhelmingly negative.

People with the difference are often born to families without the difference. This can be seen in deaf children born to hearing parents and the complications that arise. View The Sound and The Fury for an example of the virulent debates in this community. It should be stated, however, that with current research in genetics, the familial link to autism is strong. I have autistic members in my own family, although we didn’t know what autism was at the time. Further checking into family members can help in developing a greater empathy towards the newly diagnosed child. Many Aspergers/Autistic parents are especially understanding and supportive of their autistic children, and much more able to understand behaviours and needs. Such observations have lead me to believe that we need many more autistic individuals who are willing, to teach other autistic children in integrative settings.

Many organizations and individuals have recognized the fundamental problems of referring to a people as a deviance from the “norm” as opposed to assisting individuals in society who have a fundamental difference. Such referencing is akin to political apartheid because it begins to single out a group of people and apply a different set of standards to them. Here, the difference between accommodations versus subjecting autistics to treatments is an example of a prejudiced standard, as Professor Emeritus Bernard Lewis of Princeton University noted in the PBS documentary “Anti Semitism in the 21st Century.” He was referring to how prejudice is “tolerated.” I argue that prejudice towards our disabled communities is tolerated because we still do not value and understand disability as much as we could. At most levels of government, advocacy, reference groups, and autism societies around the world, this kind of singling out and segregation is rampant. ABA politics has “hijacked the autism agenda,” as stated in an Autism Society of Ontario paper written by Doug Reynolds -- no other voice or opinion contrary to them is allowed to be heard. But is this an ethical way to discuss the issues surrounding autism treatment and autistic people – without opening the table to a diverse group of autistics and other individuals like myself involved in autism? Is there a way to repair the damage to autistic individuals in addition to assisting the parents who currently “struggle” with their very own autistic children because they continue to walk under the umbrella of such devastating rhetoric?

Autism advocacy groups for ABA specifically have unanimously decided that autistics do not have a place at the table of autism advocacy, because it doesn’t further their cause for funding supports. They want ABA to be funded an nothing else. Autistic individuals have indeed complicated the process for obtaining funding for ABA services, but for good reason as it has ethical problems and further does not provide the accommodations necessary for a diverse population of autistic individuals. There are parents like myself who want a better world for our children, want them to be able to go to school with a family-appointed aide if required, receive funding for assistive devices and human support, vocational training, and more. Yet we do not have a place at the autism table because it is not aligned with this one type of approach. When autistic individuals are specifically targeted as “not even aware,” or conversely “not autistic” because they can use a keyboard, or can talk, they are excluded from the autism dialogue. There needs to be funding and provisions for autistic individuals and families based on a foundation of value for autistic persons, a preservation of their dignity, and their inclusion. There are Occupational Therapy and Speech Language services that do more for the dignity of autistic individuals than many other operationalized “treatments” and “strategies” out there. There are assistive devices used all the time, and they are the communication bridge that is so needed by this community. All parents use them, but we hear very little about any government support for such services for autism, and little provision for adaptive and assistive technologies in the schools for all disAbled individuals.

The Operationalization of Autism “Treatment”

Any “blanket” or operationalized method has two faults: First, because it presumes that that autistics “don’t” have this skill that must be manifested "typically" which determines the success outcome of the method. For instance, rather than looking how an autistic individual acquires the skill naturally, it suggested that we need to “intervene” in the natural learning process of autistics and impose our method, or what is called a “typical” way of acquiring and manifesting this “joint attention.” Secondly, I am wary of operationalized methods becuase the autistic population is so diverse that one size does not fit all in autism education. The label of autism has stripped individuals of their uniqueness on the one hand, yet made society much more aware of autism on the other, for better or worse.

When I refer to teaching with Adam, I have come to refer to it like a bridge: I consider Adam can be on one side, I on the other, and we most often meet in the middle. I have learned to come over to his side as society demands so much that he and others like him, join the them on their side.

Such bridges are seen in the way Helen Keller learned about water – the confluence of learning a new language, which was taught to her, against her experience of water at the well. The culmination of learning the language and then having the experience resulted in a light-bulb moment, where she learned to communicate with Ann Sullivan, her teacher. She developed a bridge to come to our side. As a side note, it is interesting to me that the ABA community has staked its claim to Helen Keller’s learning as behaviourism. In fact, the community does this in all aspects of teaching, thus calling into question the entire basis of ABA as a valid method of teaching rather than just calling it teaching. Reversely, might we just take the good aspects of teaching in general and learn to understand autism in order to build bridges rather than transform people. In another example, there was an exhibition titled "Seeing in the Dark." People with sight enter a dark room with all kinds of sounds and sensations. Other blind people are in the room to escort the sighted people through the exhibit. At the end, they come out together and the sighted people begin to engage in a conversation with the blind people. A report I heard is that the exhibit is "life-changing," and indeed it is a fine example of crossing over to the other side.

Stephen Hawking writes about the importance of assistive technologies that enable him to communicate in a way that he can. Providing bridges, rather than remediation, is a large part of this compromise – respecting autism and autistic learning and recognizing a need to communicate with others who are not autistic. We need both education and the bridges to communication. Dr. Morton Ann Gernsbacher’s paper “Towards a Behaviour of Reciprocity” in my view, is one of the most important papers in recognizing the need to learn the autistic language as a valid one. Neither type of “language” is superior of the other here. Is learning the autistic language difficult in a world that largely doesn’t “speak” it? Most definitely. Yet, it is no less important and we might consider just being open to the possibilities of listening. By doing so, we can assist the difficulties of autism in addition to accommodating the implicit abilities.

Adam learned joint attention by having fun. Lots of swinging in the blanket (I bet many of you succeeded with this), and OT made a lot of difference for its movement made Adam very happy and willing to engage. OT seems playful and less invasive than many other therapies. It is respectful to the child’s needs. For many reasons, I am very much in favour of Occupational Therapy and Play therapies with therapists who respect autism. The therapist has to work hard to find the preferences of the child, the games they enjoy and builds from that framework. I will admit that I started Adam’s therapy from this basis of thinking that he had to respond in a typical way. I often wonder about the foundation I built for him back then. Since that time, I have been working painstakingly on rebuilding the foundations that others insisted were stable.

The dangerous premise

In contrast, ABA builds from a framework of making the child “normal.” This is why I have strong feelings about it. It is not that I am against ABA parents per se, and their desire to obtain financial aid. I have no wish to become part of the political debate which seeks to insist that one method is superior over the other. I am against, however, any treatment that is built on a damaging premise. Today, since the court cases which has brought ABA into the public foray, its advocates continue to shape-shift. It claims every successful teaching method as its own. It turns claims from “medically necessary treatment” in autism into “necessary educational tool.” I warn readers, that the nature of it is still the same, and the quality of ABA therapists in Canada, with very limited knowledge of autism, is extremely poor. ABA may be shape-shifting to become more acceptable in the public eye and to parents at large, but as long as autistic individuals are held up to the impossible comparison of “becoming normal,” it is unachievable and as such, we must continously question the ethics of it as the only educational option. Margaret Somerville, whom I quoted earlier states:

“In general, when we are in doubt about whether an intervention or its outcome falls within the definition of the natural, we should apply a precautionary principle: we should assume that they do not do so until the contrary is shown, and therefore undertaking that intervention and its outcome must be justified….in the past when our powers to change the natural were extremely limited, we allowed intervention until it was shown to be harmful. I believe that the new powers science and technology have given us make this no longer acceptable…I argue that we should have a presumption in favour of respecting the natural, which means that unless we can show that we are justified in intervening or altering it, we should refrain from doing so… The burden of proof of justification lies with the person claiming that there should be an exception. Consequently, in situations of equal doubt, the position of the person who is favoured by the basic presumption prevails. This difference in burden of proof can be extremely important in determining what we may do, and what we must no do if serious, or possibly serious but unknown or unknowable, risk is present.” (p107)

Why, with such a recognition, would you keep up a therapy that is intrinsically painful and potentially demoralizing to the child? We know from autistic individuals that the “look at me” program and means to obtain “joint attention” can be downright painful. Autistic children continuously refer to themselves as “bad” children and “freaks,” suggesting that the good children are those who are not autistic. As parents who want to protect the self-worth of our children, and want them to be as independent as possible, or to fulfill their dreams with the assistance and support they may need, should we be looking towards building a new foundation together? Might we consider moving beyond looking for the “cure” the one remedy and begin again by looking at the complexity of not only autism, but of how we value human beings? Can we work to protect the dignity and spirit of our amazing autistic children?

By creating acceptance and diversity as the “enemy” to autism, as if all that exists here are a bunch of granola eating hacks, or “dilettantes” they are creating a divide that is damaging to the future of autistic individuals. In sum, the end does not justify the means.

Steps to Rebuilding

It mightgo without saying that we need to build a new house. Maybe the entire floorplan needs to be changed. Can we save one room? Perhaps one beam from the old framework? Or perhaps just a nail? Or has the entire ABA community claimed some plain old teaching methods as their own to be “acceptable?” Dump the terminology. That would be one step out of the boxes that entrench us as being invested in a "method."

We can’t rebuild unless we acknowledge that the achievement of normalcy isn’t the goal. The achievement of a fulfilled autistic person is. The creation of safe and nurturing environments. Perhaps that may mean that one autistic individual will need supports throughout their lifetime, but can otherwise achieve other pursuits with those supports. It often means that some autistics may not be toilet trained. Do we withhold entry into schools, these children who are often so intelligent, because of something so minor? Does it matter if your child can use a stove, or make a sandwich and use a microwave, if they can later write books or pursue poetry? What does it mean to be a fulfilled individual? Why is it so contingent on being independent? Afterall, we live in a society that is so interdependent.

My concern is finding the assistive technologies that help Adam to communicate now and dealing with anxiety. I recognize his intelligence and observe his innate way of learning. I try very hard to provide him with tools. I want teaching to be a creative, fluid process, because no one has the answers here, the way ABA advocates suggest it has. I want parents to have a choice in the way they can teach their kids. I want them to have a choice in the way they are taught in the schools.

ABA methodology suggests that without certain fundamental skills that need to be learned first, a child cannot move on. It sequences learning in a way that fits a “typical” developmental process, which we know is not typical in autism. Rather, my son might recognize and read words beyond his grade level. He knows how to count by 5’s and 10’s on his own. Because he does not yet communicate with me in a way I can completely understand, I cannot presume to know his learning process and thereby, cannot assume that he needs this sequenced teaching because I need him to respond typically. I appreciate all kinds of ways of teaching Adam to find the way that he responds to. Yet I am horrified at the notion that he may be subject to a government driven program that states autistic people only learn through one method. I am horrified because we have been subjugated to four years of people and the behaviourists never understand Adam fully. They apply strategies and talk about them in front of him and I know he understands what they say about him. They treat him like he’s not even there. I have also met good therapists who come from this background, as I’ve stated many times in this blog. But please, open up the funding to support autistic people and families – consider the accomdoations required with assistive devices, human support, inclusion in schools, lectures to understand autism. Consider the choice that parents want in supporting their children with Occupational Therapy, Speech Therapy, keyboarding skills and other augmentative communication, and more. Consider that I want autistic adults in the schools also a part of teaching my son because in order to understand how to educate autism, we need to figure out who, among the autistic adult community, is willing to pitch in here.

The Autism Acceptance Project is bringing such projects, support groups for parents lead by autistic individuals, lectures and more. We are here to support people, to talk, and to learn. We have people who use ABA, and people who do not. While we do not support its premise and demand more quality and understanding from educators and therapists, we have no wish to exclude anyone from creating a better world for our autistic children. I consider that my son Adam is worth the toil. He is worth my researching, learning, traveling, meeting other autistic adults, and continual learning about autism. He is worth making our mistakes, as long as we learn from them and move on.

Above all, I want to respect my son for who he is and how he learns. It can be difficult and frustrating at times. Yet, I consider myself his guide, his mirror upon which he will self-reflect and derive a part of his identity. I want to support him in every way possible so he can be as self supporting and productive as possible. At the end of the day, parenting an autistic child is not much different than parenting any other child, except that our kids are truly, wonderfully exceptional.

My Heart Will Go On

Some days, like everyone, I get frustrated. I must admit I have a little more on my plate these days – my mother’s recent surgery and now more bad news. Facing a parent’s mortality is just sad. I don’t want to go into details here to honour her privacy. Everyone in my family is away, except my mom, Adam and I.

Adam is frustrated. The winter is now too long. The ice on the streets too prohibitive. We await the melting streams of spring.

I used to be a singer. I tried to be a dancer when I was a younger woman. I forget how liberating that can feel. I decided to blast out the music in my kitchen, my dog, my son both needing me, but not really. It was more of a wanting than a needing. Maybe it’s just this mom who feels every call like I interpret the telephone ringing too often – like panic alarms. As I danced and sang like a lunatic in my kitchen, Adam came down stairs with a great big smile on his face. Kiki, the dog, watched with her head cocked to the side. Adam jumped into my arms, and we danced together, melting away our tension. We laughed. He ate breakfast. Life back to normal, but with a lighter heart.

The autism community is filled with so much hurt right now. There are important dialogues happening, but sometimes this can add to the weight of caring for your autistic child. So dance, sing and smile. Celebrate with your child and let it all fall away. Adam loves it.

Song of the morning: "My Heart Will Go On" -- one of Adam's favourites:
MY HEART WILL GO ON


Once more, you opened the door,
And you're here in my heart,
And my heart will go on and on.
You're here, there's nothing I fear,
And I know that my heart will go on.
We'll stay, forever this way,
You are safe in my heart
And my heart will go on and on.

Teaching Versus Remediating

I'm about to give two examples I’ve observed which illustrates the seemingly minor, but hugely important differences in treating children with autism. Often when I say I don’t do ABA in my home, people think that the alternative is doing “nothing,” – as Brenda Deskin loved to misrepresent me on CFRB, “it’s okay that she let’s her son stay up until 2 in the morning.” Well, this is just silly. After speaking with some parents who did visit Dr. Lovaas with their children in California, I am actually astounded at how much they let their kids, now teenagers, get away with. Maybe that therapy is just too hard to keep up at home -- so exhausting to try to get a leopard to change its spots.

Parenting is parenting. We establish rules and boundaries for all our children, it is no different for autistic kids. The difference is in how we treat our children – to respect their will because they are trying so hard to communicate (or have us understand their communication). Adam may be hankering for a video for instance, but that does not mean he will still get it, if we need to do something else.

Let me illustrate the difference I’ve observed:

Adam is crying. He hasn’t slept. I run up the stairs to see what has upset him so.

“No, no, Adam. Stop crying and then you can watch the video,” says his new therapist waving the video box, who comes from a behaviourist background and is brand new to our home.

Adam cries harder, his eyes are fixed on that video box. I watch for a bit and intervene.

“Adam, we know you want the video,” I say. Adam stops crying immediately. “Let’s just calm down a bit and then you can watch it.” Adam calms down for a moment, a little residual upset bubbles. “It’s okay. We know you want the video.” He calms down immediately again. The video goes on. Now the therapist didn’t want to "reinforce" his crying, and certainly for any child who acts like a brat, I would say yeah to that. But, Adam was tired and hadn’t slept all night so there was a reason for his tears. For a child who can’t use words to talk, he sure is communicating. And he was really tired. Any four year old would make a fuss when they’re tired, and Adam makes much less than most I’ve seen. Adam, who can’t talk should be dealt a little more respect because it is so much harder to communicate. I’m not so sure if the goal of not having him cry was useful here, as Adam may not trust this therapist for not having understood his exhaustion. But this is a learning curve for many therapists, so I am patient. [By the way, Adam loves this new teacher and this teacher watched the taped program of Amanda Baggs with me and left a certain centre because of DTT methods. The teacher is listening to my comments and is very receptive. This sort of dialogue and working together -- including my receptivity to others' suggestions is one of the things that makes a good teaching situation for Adam -- because it questions everything. I've also maintained a relationship with another teacher who comes to my home for three years who came from an ABA background and we've been continually learning together and she is a gem. Also, after I initially wrote this post, Adam saw this teacher and was ecstatic to see him, so there was certainly no harm done.]

It is the ability to self-reflect as a teacher that is vitally important here too. As long as autistic children are viewed like belligerent "brats" when all they are trying to do is communicate, as exemplifed in this instance, they will be subject to this kind of discrmination. Certainly, if Adam continues to act up and think he can simply cry for everything he wants, I wouldn't just give him the video. However, he is not like this. Most of the time, he is just trying to communicate and I can easily negotiate with him by understanding and acknowledging his communication.

I’m not saying that I know much about parenting, but I do know something about parenting my son, Adam. I am suggesting that we can all do our part to really observe behaviours and ask ourselves whose purpose we are serving when we are making certain demands. These may seem like minor adjustments, but they are major to the child. They are major in stating “I understand what you want, or that you’re upset.” It is major because it is the difference between accommodation and correction or remediation.

I have another example. I took issue with a behaviourist who came to the park with me where Adam enjoys picking up the sand and letting it run through his hands. Instead of saying no or making a fuss (it’s a behaviour that no non autistic person can understand, but uses a subjective judgment to determine that it is aberrant), I just say to Adam “let’s go on the slide.” It’s not that I care about the behaviour per se, but I am there also to play with him, so we do a bit of everything – sand play, slides, climbing, see saw and so forth. I simply invite Adam to join me, and he usually does. I always let him enjoy his sand, though.

The behaviourist came with us once, grabbed Adam’s hands and stopped his “stimming” in front of everyone. In fact, she grabbed his hands aggressively to stop him and moved him on by pushing him. She wanted to do it over and over again, and it seemed like Adam also wanted his sand more than usual when she did it. Instead of arguing with her there, I said “let’s go home,” to end this “session” as soon as possible. Afterwards I told her that that I was uncomfortable with what she had done and I could see that we weren't seeing eye to eye so we agree to disagree. (She doesn't teach Adam anymore, but she certainly "cares" in her ABA way, a way that doesn't match my idea of caring. So the lines get really fuzzy.)

Yet, here is a child who has such a hard time being viewed as a whole human being, and this person wanted to “correct” him in public, thereby stigmatizing him more in front of people we knew. It’s like trying to beat the Adam out of Adam, or as some refer to as remediating his autism as if it is separate from him. I guess I should ask if you can beat the blindness out of the blind? Even the idea that autism is separate from the child's being and experience, is to suggest that autistics should not be taught the way other children are taught. It doesn't respect the disability and does not ask us to question ourselves or make a better effort to learning about autism and how we can best teach our autistic children or accomodate their learning style.

Further, all one has to do is to look at Michael Moon’s photographs to see what the rest of us cannot – for playing with dripping objects, sand, water, is an enthralling activity, visually. Michael’s artwork gives us a glimpse into that outstanding world. And who knows what other learning is going on that is atypical, but certainly not less valuable or even fantastic.

It is a fact of life that the therapists out there in autism all come from this behaviourist background. It was the confluence of increased autism diagnosis around 1992 and Dr. Lovaas. The good teachers, however, keep an open mind about autism and evolve their teaching to what we continually learn about autism and about autistic people and how they want to be viewed and treated. The bad ones will always try to correct instead of teach, which calls into question this whole notion of ABA as an “educational tool.” Many of the ABA people are simply doing play therapy embedded with teaching skills. So what we have here is a lot of confusion. Let’s go back to the drawing board to integrate many of our skills, and question the goals of our teaching.