The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They had thought with some reason that there is no more dreadful punishment than futile and hopeless labor.

I heard this term used by someone today. It is often used in ABA-speak — that every minute of every day must be a form of “therapy” for the autistic child. Some believe this is necessary because there is a belief that autistic children are not learning unless they are doing it in a way that that we can understand…measurable. This made me think of Sisyphus and the futile attempts we make in trying to normalize an autistic person.

The truth is, we take comfort in measures. Yet as I wrote in my essay/presentation The Mismeasure of Autism, we cannot hold autistic people up against the same measures as we do of people with typical people. Not all brains are wired in the same way.

For example, women have quickly discovered that when we compare ourselves to men in the workplace, or try to behave like men, we fail. In pretending to be like men, we can undergo a great deal of stress because we are working against our nature. When we are valued for the manner in which we can accomplish the same tasks as men, but in our own way, we discover that our differences can be beneficial to the workplace. Women to men are as autistic people to neurotypical ones: different and equal.

I was reminded of the contributions of those who are different from the film titled Journey Into Dyslexia, which profiles accomplished people with dyslexia. The trailer can be seen by clicking here.

During the film, dyslexic individuals describe their trauma with the education system — how no one appreciated the unique wiring of their brain and tried to make the dyslexic students learn like typical ones. I was so saddened by the life-long adverse effects this had on them.

In another segment, a researcher discusses how dyslexic individuals have unique abilities and pattern recognition and explain that our world would not be the same without such thinkers. This reminded me of the research being done which shows advanced perceptual ability in autistic individuals of all functioning levels.

It should be said that in the film about dyslexia, individuals do not appear disabled. In autism, this isn’t always the case. While some individuals do not physically appear different, others are distiguishable by their various eye-gaze, facial expression, gait and idiosyncratic body movements (which serve most often to regulate or feel the body in space), referred to as self-stimulatory behaviour. I thought to myself that in our (still) disabled-adverse society, it is easier to accept dyslexic people, that is, sadly easier to accept people who do not have any obvious appearance of disability. Yet, dyslexics did not always have the same recognition and status. Dyslexic students were labeled and marginalized — called stupid — and not much was expected from them in the future.

Time changed that. Studies of the brain and achievements and activism by dyslexic individuals changed it too. So I had to wonder, as I always do when I watch such movies, why it is taking so long for the autistic community to receive such recognition and access? There are scientific studies that demonstrate advanced perceptual abilities, patterning skills in autistic individuals despite the labels of “functioning levels.” There is anecdotal evidence that autistic individuals are exceptional employees — reliable, honest, able to do detailed and repetitive work, and perhaps even able to design world-renowned facilities (think Temple Grandin).

Still, we as an autistic community (meaning parents, researchers and autistic people) tend to discount the mounting evidence. While I don’t wish to go into yet another lengthy about high and low functioning labels, but I will reiterate that they are unreliable in determining intelligence levels. Not all intelligences can be measured the same way, as demonstrated by many of the neurological differences which now have labels out there. This is also explained brilliantly in the film.

We can learn from our fellow disability communities. We can turn to ones, like the dyslexic community, in learning how to advocate for autistic individuals. We can definitely acknowledge that it is natural for the human speicies to have differently-wired brains and that these “different” brains are integral to the survival of our speicies (watch the movie for an advanced argument on that point).

That is the reason why the idea that “every minute should be therapy” for the autistic person is a form of discrimination. Underneath the premise is the idea that autistic people need to learn and act like those who are different from them. I cannot imagine the anguish of that experience, and every day I try to feel what Adam must have to go through and what he may come to say of it when he grows older.

Before the hyper-programmed generation (that is, my generation), we had many bored moments when our parents let us figure out what to do on our own. We stared at clouds, talked to ourselves and created laboratories out of our mother’s cosmetic bottles and the contents therein. When I look back, I remember creating many imaginary worlds. Adam’s chatter is considered abnormal to many behaviourists, although I’ve never stopped him. I’ve now learned how valuable that self-chatter is to autistic children for language acquisition.

Compare the way we let typical children play to the existence of the autistic child today. It is said that autistic children can’t learn on their own, let alone imagine, without our intervention. Autistic free time is not valued. Autistic nature is not valued. Autistic learning is not valued and the autistic person is more often than not, underestimated.

I tend to use the story of how Adam taught himself how to read and count in an argument such as this. A more recent example I would use is how he has taught himself how to search for what he wants on the computer. You see, those are the things we see and measure, but I wouldn’t be able to determine how he came to do it. I can’t measure the exact process he went through. I can wait until he is able to explain some of it to me, unscientifically maybe, and I am certain now that he will as his verbal and typing skills catapulted again this summer along with his long days in the fresh air.

If I had turned each and every one of Adam’s minutes — nay existence — into “therapy,” not only would I become completely exhausted and dismayed, but I’m quite certain that Adam would not be has happy and as well adjusted as any young autistic individual can wish to be. He will have his complaints, I am certain. He is up against so much more than I have ever been.

I am thankful for my attitude of late and for the balanced approach that time and experience has given us. It is not always easy to maintain this attitude consistently in our community where autistic children are not taught to their needs or potential, let alone accepted into many schools and taught well. For many autism parents, it is the fear of the future that is the driving force behind the idea that every moment needs to be a therapeutic one. I completely understand that fear.

It is in these very moments when we need to turn to autistic adults and call upon all of our autism societies to spotlight the achievements of autistic individuals of all functioning levels, and their contributions to society. In autism we have Temple Grandin, Vernon Smith (Nobel Prize Winner), Stephen Wiltshire, Daniel Tammet, Donna Williams, Michelle Dawson, Matt Savage, Amanda Baggs, Larry Bissonnette, and so many more autistic contributors. In so many of their stories, we have heard how they have learned and achieved by virtue of their autistic brains and societal accommodation, not from minute-by-minute therapy.

We should do everything to celebrate the achievements of our comrades, as this will enable better services and accommodations for the next generation of autistic people to contribute. If we do not stand up for our own community, what chances will our children have to prove themselves? What chances for acceptance?

Everyone has something to contribute.

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Please read Kristina’s and help return Ayn, an autistic girl to her father. They live in British Columbia. Ayn has been taken because of wandering.

Like Ayn, Adam is nine years old and has bolted. We work so hard to take care of and nuture our children and Foster Care is a devastating option. Ayn’s father Derek fears that Ayn is being drugged to sedate her. It may take up to a year to get Ayn back, states Derek’s laywer. Let me describe why I believe this is discrimination against autistics and their families.

As a parent of an autistic child who clearly is anxious about the world about him, which lends to wandering and other behaviours as I’ve observed, I can think of no other person on this planet more equipped to protect my son than myself and his immediate family. We live in a world that wants to make Adam “normal.” He must go to school, and when he goes, he has to exert more energy than other children just to cope. Because Adam is barely verbal, but otherwise very bright, he cannot speak out. Instead, he reacts.

Our schools, while they attempt to accommodate, simply have not been making the grade. As I’ve researched school options and program options in Ontario, our options are few and far between. Every program seeks to normalize Adam. Precious few wish to spend the time it takes to see his abilities and build upon them.

This requires systemic change and a real listening to and understanding of autistic people. May I ask what schools hire autistic adults to work with autistic children in the classroom or consult on school boards for autism programs? Please, write if you know of one here in Ontario. Instead, non autistic educators believe they know better — they believe they know how to teach autistic people. Even we parents sometimes think we know better. It takes us out of our comfort zone to be patient with an autistic nature. Think about the patience and effort that people like Ayn and Adam have to produce in dealing with ours? Sure the toolbox of methods work here and there, but what is happening to our children, to Derek and Ayn, is not an accommodation. This is what we seek. Understanding, accommodation — not separating us from the people we love.

Every single day, Adam and I face these challenges together. We fight for better services, be they ABA or AAC and for all kinds of acccommodations that help autistic people contribute to society as autistic people. I know we are not always listened to. We are not heard. No one believes it’s a good thing, perhaps, to be autistic. Few want to bother because autism is seen as our contemporary problem. If we can’t fix the problem, we have failed. I say we are failing autistic people.

Must we also live in fear, like Derek, of our children being taken away? As parents, we cannot control everything that our children do, or what happens to them. This is true of all children, not just autistic children. Being autistic seems to be a reason to discriminate against us.

As Adam himself goes through many changes in his life (we’ve been checking off the list of “life’s top stressors”), I’ve been re-reading Temple Grandin’s book Emergence: Labeled Autistic. She describes similar behaviours to Adam like fixations with doors, difficulty with communication or inconsistent communication. She describes her twitches (like Adam’s) as “panic attacks” or anxiety.

While I’m processing a lot of this lately because we are in the midst of this ourselves, I see an urgent need for others to understand us. I see a need to reduce some of the expecations, and for calm environments. I see a need to simplify our lives and let things be sometimes. We are so busy dealing with what our kids must or should do, that I truly believe that this only brings on more stress. Every morning when I wake, I wonder how we can simplify our lives, and wonder why it seems to be ever more complicated. This is the commitment many of us parents of autistic children make every day: to stand by our children and fight for their rights to be included in our society, not taken away or segregated.

Every autistic adult who has written a book discusses their panic at this over-stimulated world we live in. Donna Williams, Temple Grandin are really accessible reads.

Let me take some quotes from Temple’s book that may help describe what I call now the “flight response” of Adam, and perhaps children like Ayn. I know there is no scientific evidence to support my theory yet, but I really suspect that wandering and fleeing in many cases has a lot to do with this anxiety:

“The real world became more unpredictable. I longed for relief, but I was trapped in physical distress. Stress showed in my speech, my actions, my relationship with others.”

Adam’s bolting is associated with doors recently. He is fixated on them and has to check what’s behind each. This has calmed a bit since the end of school, but when he’s anxious it can start up again and this is how he can suddenly disappear, even if we hold his hand — he can slip out so fast. Yes, our house has locks from the inside, like Derek’s. I’ve bought I.D. for him, even a harness (which we have not yet used, but it’s here just in case), and we are looking into a GPS. We have programs and social stories and are trying to help Adam in every way we can with his stress. Re-reading Temple’s own accounts, seems to have re-affirmed my suspicions about Adam, and helps me to consider various options for him to grow and develop as a fulfilled autistic individual:

Then, in chapel one Sunday, I sat on the folding chair, imprisoned by the school’s rules of attendance and bored…bored…bored. When the minister began preaching, I escaped into my inner world of non-stimulation. A world pastel and peaceful. Suddenly, a loud knock intruded upon my inner world. Startled, I looked up and saw the minister rap on the lecturn. “Knock,” he said, “and He will answer.”

Who, I wondered. I sat up straighter.

“I am the door: by me if any man enter in, he shalle be saved (John 10:7.9). The minister stepped out from behind the lecturn and stood in front of the congregation. He said, “Before each of you there is a door opening into heaven. Open it and be saved.” He turned and walked back to the lecturn. “Hymn 306, ‘Bless This House.’”

I barely heard the hymn number. Like many autistic children, everything was literal to me. My mind centered on one thing. Door. A door opening to heaven. A door through which I could pass and be saved! The voices sang out and when I heard the words, “Bless this door that it may prove/Ever open to joy and love,” I knew I had to find that door.

For the next few days I viewed each door as a possible opening to love and joy. The closet door, the bathroom door, the front door, the stable door — all were scrutinized and rejected as the door. Then one day walking back to my room from dinner, I noticed that an addition to our dorm was being constructed…I climbed to the fourth floor….And there was the door! It was a little open door that opened out onto the roof….A feeling of relief flooded over me.

Ayn wandered to a yard with a trampoline. Adam returned to the church from where he escaped…through doors and then back inside them again. While wandering is a very serious issue, are our children seeking their escape? Are they seeking relief? Joy? We must keep our children safe, and I can attest that we are doing everything in our power to do so, like Ayn’s father, Derek, who loves his daughter so very much. But because Ayn is autistic, and perhaps because Derek is on social assistance, she has been taken away from him. Is this some sort of sick cost-saving measure instead of providing the services that Derek and Ayn might need? I can imagine the pain he and Ayn must be feeling right now.

Our society must work so much harder to understand what we as parents face and what autistic people face. We must be able to share our challenges in order to survive them, without fear that our children will be taken from us. I want to be proud of the country I live in in how it supports autistic individuals and families. This incident does not make me proud, or rest easy.

Let me share one more quote from Temple Grandin, lest society think that autistics can’t understand what’s happening to them:

As an autistic child, difficulty in speaking was one of my greatest problems. Although I could understand everything people said, my responses were limited. I’d try, but most of the time no spoken words came. It was similar to stuttering; the words just wouldn’t come out…”

and,

Too many therapists and psychologically-trained people believe that if a child is allowed to indulge his fixations, irreparable harm will result. I do not think this is true in all cases. Fixations can be guided into something constructive. Talking the fixation away can be unwise. Just as a bad habit is expunged only to be replaced by another bad habit, so it is with fixation. But making a positive action out of a fixation can be rewarding.

Maybe Ayn needs that trampoline. Maybe a neighbour can give her that access. Social services should give Ayn back to her father as soon as possible. Parents and autistic people need accommodation and better supports. Foster care will not give Ayn many options and will likely create irreparable damage. Ayn is a person-first and a very lovely little autistic girl, I might add. This is the stuff that makes being a parent of an autistic child, challenging. Let me reiterate: we need understanding and support. Not punishment.

Please sign this petition to help bring Ayn home.

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You can sign the Declarataion for the Support of Community Living Here: http://www.institutionwatch.ca/petition-app

This from the Canadian Centre for Community Living 2010 Report Card:

Improvement still needed…

• Among children with intellectual disabilities
receiving early learning and child care
services, 32% have been denied this service
at some point in the past.

• 30% of children with an intellectual disability
had to leave their community in the past
twelve months in order to attend school.

• Only 33% of children with intellectual
disabilities are in high inclusion school
settings.

• Children with an intellectual disability are four
times more likely than other children with
disabilities to be attending special education
schools (16% vs. 4%).

• 41% felt threatened at school or on the school
bus within the past year and more than a third
(36%) were assaulted at school or on the
school bus.

• 52% of young adults with an intellectual
disability (aged 20 – 29 years) are neither
working nor attending school, compared with
12% of those without a disability.

• Young adults with intellectual disabilities are
five times more likely than those without
disabilities to have no formal education
certificate.

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Have you ever been so scared that you literally wet yourself? I did today. I lost Adam.

I took him to Sportball. It takes place in a church — they don’t lock the doors. All the kids are special needs. The gym is in the basement. I usually go and his instructor has responsibility for a bunch of kids. We’ve not really had difficulty like this before, but I could see it coming. I ordered the shoe tags, a GPS, but they haven’t arrived yet. Adam’s father reported that Adam tried to bolt last weekend.

So I turned to Adam’s instructor to address the issue. In just one second (no exaggeration), Adam was gone. I knew I had to move quickly because Adam is so fast, but they tried to reassure me he was ok, so I thought they moved a little slowly. I ran around the entire church — full of rooms, nooks and crannies. The front doors to the outside were locked. But there were more doors. An alarm went off. I ran outside screaming for Adam, I ran back in to look in between pews. He was gone.

Someone called 911. I peed my pants, running and running, hoping my desperate voice would trigger his tiny “here I am,” voice, but nothing. One more run back into the main sanctuary, and there he was under the cross, peering behind the curtain, on the altar.

I grabbed him and couldn’t stop crying…sorry it’s hard for me to write because I’m starting to cry again. Adults came in to say that they saw him running outside the church. He could have run out to a very busy street alongside the church. He could have been really hurt. No one stopped him. No one thought of it. Even those who knew him. I guess people thought we must have been nearby.

I held him so tight when I found him on the altar. I’ve called my team and my parents because I need support right now.

Adam’s impulse to explore, especially go through every door, has become insatiable. I do have extra inside locks on every door of my house, and lucky too because I can see he’s trying to unlock the regular ones. I’ve managed to keep us safe and myself sane in my home, but now I see I have to deal with this aggressively and he cannot be left unattended. I’d also wish to suggest for programs for special needs kids (or maybe all kids) that the doors be locked so kids can’t just disappear this easily. It seems to be a huge oversight and a lack of accommodation.

I’m so glad I have him because after five minutes of searching and calling out frantically, I thought I was going to be one of those parents you hear about on the news. I don’t want to come that close ever again. Not only will he always have a shadow with him now, there will be more aggressive teaching about safety and more positive reinforcement for staying and asking for permission to explore. I also implemented intuitively (and later read) that it’s really important to take your kids on the same routes all the time. They will usually want the same routes and can either be found or will find their way home. As Adam ran outside, he managed to find an open door back into the church.

It was Adam who found his way back. I found my way back to him.

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Dear Ms. Pickett:

We are writing as a coalition of organizations representing a wide variety of different constituents in the disabilities field. We include organizations run by people with disabilities as well as those run by parents, other family members, professionals, providers and many others. Our coalition also includes groups representing a wide array of different kinds of disability categories, including developmental disabilities, mental health conditions, physical disabilities and sensory disabilities. We are writing to express our profound concern about the proposed ICD-9-CM code for wandering discussed at the last meeting of the ICD Coordination and Maintenance Committee on March 9th-10th.

While wandering behavior leading to injury and death represents an important and legitimate safety issue for the disability community, we are concerned that the proposal put forward by CDC’s National Center for Birth Defects and Developmental Disabilities (NCBDDD) is not rooted in high quality research and has significant potential unintended consequences for people with disabilities and family members. We encourage the National Center for Health Statistics to reject an ICD-9-CM coding for wandering behavior as ill-advised and inappropriate.

First, a code for wandering behavior could limit the self-determination rights of adults with disabilities. The wandering coding has no clear operational definition and thus no limits to its application. The proposal makes no distinction between wandering behavior that would qualify for the coding and a rational and willful effort by an individual with a disability to remove oneself from a dangerous or uncomfortable situation. For individuals with significant communication challenges, attempting to leave a situation may be one of the only ways of communicating abuse, a sensorily overwhelming situation or simple boredom. We are concerned that if this coding enters the ICD-9-CM such attempts at communication will be disregarded as medical symptoms.

Second, a code for wandering behavior could lead to serious unintended consequences in professional practice for schools and residential service-provision settings for adults with disabilities. Restraint and seclusion in schools and in residential service-provision settings is already a persistent problem. The application of this coding may result in increased restraint and seclusion as a way of preventing wandering behavior, supplanting required active support, person-centered planning and appropriate supervision. In addition, we are concerned that this coding may enable other forms of overly restrictive interventions and settings. For example, individuals with disabilities who are labeled with a wandering coding may be less likely to be included in the general education classroom, more likely to be placed in large group homes or institutions and more likely to experience chemical restraint. Each of these issues already represents a critical problem for people with intellectual and developmental disabilities that this coding may exacerbate. For example, while only 18% of adults on the autism spectrum receiving developmental disability services have a diagnosis of mental illness, 41% of such individuals are receiving psychotropic medications, suggesting a high incidence of chemical restraint.

Third, the proposed ICD-9-CM code for wandering behavior lacks research support and is not based on evidence or a controlled examination of the issues involved. No research exists to look at wandering as a medical rather than behavioral issue. The research which CDC relies on to make the case for this coding is weak. For example, one of the statistics that CDC cites (that 92% of families of children on the autism spectrum report at least one or more incidents of wandering) comes not from a high quality research study, but instead from an online poll on the website of an advocacy organization. This is not in line with the high standards for research and evidence that CDC’s bases its other decision-making on.

While we respect the good intentions behind the creation of this coding, we firmly believe that there are other ways of accomplishing the positive objectives of this coding without placing people with disabilities and our families at risk of the same unintended consequences. Other methods of data collection around wandering can and are being pursued by both public and private funders. In addition, a wide variety of human services and educational approaches hold significant promise in addressing the issue of dangerous wandering behavior outside of a medical context. As a result, we strongly urge you to reconsider and reject the proposed ICD-9-CM coding for wandering behavior.

Regards,
Autistic Self Advocacy Network
Council of Parent Attorneys and Advocates (COPAA)
National Association of State Directors of Developmental Disability Services (NASDDDS)
TASH

If you wish to respond, please contact AUTCOM or circulate this letter.

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Ralph James Savarese, Professor of English at Grinnell College and author of Reasonable People: A Memoir of Autism and Adoption, writes The Silver Trumpet of Freedom in The Huffington Post. It’s about his autistic son D.J. and how he communicates by typing. D.J., featured several years ago on CNN, is a non verbal autistic individual, and an autistic self advocate. D.J. is now in College and of this Ralph writes:

Pitting his fear of an oppressive neurotypical culture, which as a rule continues to exclude people with autism and to prevent them from realizing their potential, against his belief in the power of words to combat prejudice and to change society, he decided to apply to a range of highly selective liberal arts colleges. Although he had made a place for himself in our small, rural community, he had his doubts about the wider world.

The fact remains: very few people whom the medical community would describe as “severely autistic” matriculate to college. By some estimates, only 20 nonspeaking people with autism have ever earned a college degree. Tito Mukhopadhyay, author of three books and perhaps the world’s most renowned nonspeaking autist, puts it this way: “My school is the doubt in your eyes.”

We know of non verbal “severely” autistic people who have been or are currently attending colleges and universities. If they haven’t done that, they’ve written insightful books on autism, are important researchers in the field of autism, and lend perspective about themselves and the human condition. Their contributions are evolving our view of how autistic people and those with other disabilities are viewed. The goal? An understanding of what it means to be accommodated in order to be able to contribute and to be accepted.

Although I click my heels (there’s no place like home) with glee everytime I read one of these articles that raise the bar higher, I have to recall the recent story in my hometown of Toronto where Ashif Jaffer, a student with Down syndrome, was forced to withdraw from York University because he required assistance. It’s an interesting story and one to keep an eye on because many autistic individuals require assistance and accommodation to attend colleges and universities. Also, many are asked to leave precisely for this reason. There is little understanding of why an autistic individual is often dependent, in various degrees, and perhaps too much value placed on the myth of independence — at least the value of it. With new technologies, I see autistic individuals better able to respond and contribute to our university programs, but our institutions of higher education are not quite prepared, and still lack understanding of what assistance means for the disabled to be able to participate as they are in our society.

Huh. As I write, this thought lept into my mind: the typewriter was originally invented for the blind. As a result of this accommodation, I too have benefited.

Onward ho!

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Adam will be at home. He’ll work on his computer, I on mine. We’ll play piano and a few games. I still haven’t had time to complete his art studio. My work will have to go on hold.

Life’s changing here. Being a single mother has new challenges. I look for time to get things done, as it’s just Adam and I and there’s no one to help me in the early mornings if he’s up too early, or sick. That’s a big difference I’m sure many a single-parent will relate to. Time has become more limited when one has to rebuild, and even learn, from scratch.

So, I don’t like problems thrown at me all the time. I’m impatient. I expect those who say they are experts to help us, not throw the problems back in my lap. When it comes to Adam and talking with those who help him out, I’m not certain they realize that’s what I hear. Sure, we’ve got challenges. But it becomes overwhelming when things are constantly presented as a “problem.” Hearing this for seven years now since Adam’s diagnosis, and maybe this will make sense.

If you are a therapist or a teacher or aide, consider this: that’s all we hear from the time our children are very young. From a parent’s perspective, it’s not only very scary in the beginning, but later, it’s just plain exhausting. In the beginning we scurry like there’s no tomorrow becasue we are trying to find the best program or school placement, and that’s not easy. Perhaps if you are going to present a challenge, offer a solution. I’m fortunate in that I do have people with whom I can strategize. Yet, there are few options out there for autistic people, and even therapists are hard-pressed to be able to find places for us to go. Schools are scarce. Inclusive schools are scarcer.

There are few adaptive services. I spend hours each week not only filling out forms and getting on wait-lists, but also phoning to find suitable sports and other programs for Adam. This begs the question: why are there so few of them? Why can’t Adam learn how to play baseball? I remember how easy it was for my step-kids and all the programs they had to choose from. I’m trying to reach Special Olympics, Boyscouts, ski programs…it takes a while to hear back. For Adam, his options seem so much smaller than they were for his half-siblings. It’s not equal and it’s not fair.

Why should he have to go to an autism school if the autism school doesn’t fully integrate a vareity of tools to support Adam’s strengths? Perhaps I’d go to the autism school if I felt it treated him like the magnificent person he is, addressing the challenges he has, and training him as an autistic person to prepare for college, university, or some other vibrant future. Believe me, if I could find an autism school that was as robust as those belonging to the deaf community, I’d consider it. At least there, using the deaf community as a model, autistic people would be allowed to act autistic, and build their own strong community. Instead, I see schools addressing “autistic defecits” in an ABA format, which I don’t believe works that well for Adam, as it escalates his anxiety. (Side note: and can we hire autistic adult teachers, pleeeze). Repeating skills in that format is good (belonging to ABA and other methods), sometimes positive reinforcement is good, but it’s not very creative because it teaches not so much content as much as it is a way to teach someone how to answer and respond. It’s not necessarily a “bad” thing, it’s just not the only way to teach, and I fear it lacks the engaging content my son needs. It doesn’t foster creative behaviour.

You see, I think discipline is really important. It’s an art to teach a very young, challenged child to be focussed without also inspiring him and building his confidence. With Adam, this is especially difficult. Despite his communication challenges, he has pride, will avoid tasks that he thinks he likely will fail, and is very aware of his inability to communicate like other people. Force him to “put the puzzle” piece in for the 1000th time, and I don’t think that’ll do it. Offer him a candy to do a task, and he knows that if he avoids the task, he’ll get a candy. It works sometimes, but he’s outsmarts us. Still, breaking down tasks into smaller pieces, and repetition is a key to fluency and competence. Marry that with exploration activity and keeping the topics and materials moving along (he’s not a baby anymore), and that’ll keep his interest. I wonder if we just expect too little from him. An inspiring person/teacher, and tapping into Adam’s innate need to be proud of himself, and I wonder…

I don’t think that typical families understand the extent to which we have to hunt for places for our kids to belong, and I believe Adam has the right to be fully integrated and included into our community. I feel I am met with resistance, and I knew this would take a long time. I hope it doesn’ drag on well into Adam’s adulthood. This is a systemic problem. We simply don’t know how to teach autistic people, despite ABA being the purported solution. All we know is how to use a few PECS, schedules, and accommodate sensory differences. Sure, this is a big change from even a few years ago, but I’m becoming impatient. I have not seen any creative programming for autistic people. Is it because we don’t believe enough in autistic people to invest in fully inclusive programs that train facilitators in a vareity of methods that must then be uniquely applied to each individual? Instead, it might be easier to say that an autistic person has this defecit and apply a one-size-fits all solution. As I used to work in public art galleries, and also used to teach young children art through music, I’m thinking a lot lately of helping schools use an art program to teach other topics such as math and science. And if you want to see another extremely creative parent, check out Kyra and Fluffy at thismom.com. Kyra completely blows me away with her boundless energy and ideas. I’m not as creative as she is. I just hope people take a look at some the projects she works on with Fluffy (she homeshools him). I hope, using them as one positive example, that we never give up on autistic folk.

I meet wonderful teachers. I wonder why I don’t see the programs to place them because autism seems of great interest to many. When I consider Adam, I think of just last night as we practiced piano and how he became enamoured with the low G. As he continued to play it, I improvised. He smiled and we made music for over 30 minutes, coordinating together. I think of how he can get so focussed in art-making and all the things we can learn from making it. Art can be therapeutic, sure, but what of all those lost learning opportunities because our teachers are not trained in using these tools so easily accessible for Adam? If Adam is any example, he does well when we find a patient person who listens, who wants to learn how he learns, and who can accompany him in the community that he’s so interested in. I have a boy yearning to try new things. Thank goodness for his camps. There is has learned to climb walls, archery, and many other wonderful skills. He seems happiest at camp, learning from physical activity to quiet art and loves drama and creative movement — hmm.. we hear autistic people can’t do the latter, right? Not so for my guy.

I just thought I’d write this because we have huge scarcity in Ontario and I keep looking to autism websites here and don’t find much. Social skills groups are always full and I wonder what they teach anyway? How to say hello? Play with the plastic doll? Okay, that’s a skeptical comment, but what creative programming exists within the skills that autistic children need to also learn? We can inspire our children. People think we need autism schools, but that’s not necessarily the solution. It seems easy because at least that’s a place to put autistic kids. I like it that Adam sees everyone and that he be seen, and where he can feel competent as he is (this is a problem if we stick our kids in typical schools where they then remain on the sidelines). I still see people wanting to change him and fill in his “gaps.” Certainly, they exist; Adam has challenges. Yes, I hear about them all the time. I see them everyday. I am supposed to be teaching him at home more too — the onus is always on us. How much more time do we have?

Okay, just so this post doesn’t come off as a rant (I hope), here’s a link to Hopeful Parent. Maybe it’s the snowstorm coming, the large piles of paper I have to get through, and a team meeting coming up tonight.

I am hopeful. Maybe I can help out through teaching again. Just one of my many thoughts as I figure out the future these days.

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Yesterday, The Globe and Mail published, For A Child, It’s All About Control. The premise of the study, conducted by researchers in New Zealand followed 1,000 children for more than thirty years. The findings, published in the Proceedings of The National Academy of Sciences stated that “those children who demonstrated strong self control skills as early as age three were less likely to abuse drugs, and develop health problems, experience financial difficulties or be convicted of a crime.” The ability to control one’s own behaviour is an indication, therefore, of future success. I guess that makes most of us the doomed portion of the population.

I’m not just writing this because I felt like I was reading a paper in 1900, not 2011. I’m writing because I have an autistic child, where the controversy in his way of being is primarily described as behavioural — difficulties with attention, focus and impulse control. Children diagnosed with ADHD, ADD share similar impulse control “issues.”

It’s an odd time we live in. We diagnose every possible human way of being under the sun, while also being able to appreciate, paradoxcally, the creative contributions and potential of people with, as we say, “different kinds of minds.” Despite all our best efforts to use medications to control behavioural issues, the individuals we medicate are often incredibly able, talented, and have been, in fact, insanely successful. An official ADHD website proudly lists successful people with the disorder, the list including Albert Einstein. And this list. In keeping with funny little lists, here’s one that cites some successful autistic people. And another one.

Most of us have heard and read about Donald Treffert’s work in giftedness and autism, although not every autistic person possesses exeptional gifts (even though everyone is exceptional). The real issue seems not to be that the ability to exercise self-control makes us more successful, but in how we learn to work within the frameworks we’ve got. The most heralded people of our culture are the ones who are able to think out of the box; in other words, differently.

Another issue is one of pedagogy. The study insinuates, for me anyway, that all children should be alike: focussed, sitting at their desks and compliant with their teacher. A child like Adam is a sure candidate then, to be banned from schools that use these criteria as a series of prerequisites. Sure, we all have to learn the rules, but the rules also have to bend for the accommodation of individuals so that they can learn. One example is having children move throughout their day in order to think. As physical programming gets slashed and Canadians, in a recent CBC report, are getting fatter, it might be no wonder how children have difficulty concentrating. There are many different ways to learn. Most autistic chidlren need sensory stimulation throughout their day, similarly, to be able to focus.

“Self-control is a vital skill for scanning the horizon to be prepared for what might happen to you, for envisaging your own future possibilities, for planning ahead to get where you want to go, for controlling your temper when life frustrates you,” says Terrie Moffitt from Duke University, quoted in the article. Really? Can we truly plan ahead? I mean, a few years under my belt and I’ve been stimied over and over at the universal joke: that life never ends up the way we plan. Nevertheless, we’re all supposed to have a good one. While it’s not the entire point of my post here, some of the reasons cited as necessary for being in control of oneself in the study seem a little silly.

How many of us have had behavioural issues in our lifetime, or a real diagnosis effecting our ability to control our impulses? Have the researchers considered the contributions made to our society by individuals who have severe difficulties with it? How many of us might have to use many accommodations throughout our day in order to be “successful” — the very word raising many other questions on what success really means?

“You’re training people to think about long-term consequences of their behaviour,” Professor Piquero was quoted.

Indeed.

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“You can’t say your child is great,” I was told when looking into services for Adam. As part of our growing process, we have to know what is available to us. I was discussing how Adam has many challenges and is also:

-affable
-affectionate
-likes to be social but has difficulty at times…

“He sounds great,” interrupted the woman I was speaking to on the telephone who had asked me what Adam was like. “Just so you know, I have a child with Down’s syndrome. It’s a drag to have to paint the worst scenario, but in order to get services, you just have to.”

Why subjugate our wonderful children, young and old, to terminal fates? You remember — the ones “worse than cancer.” Why must we have to paint a dimsal picture, or view people with disabilities as something horrible and devastating to us and society? This is the very reason why we’ve had such misrepresentation that hurts autistic people, and why parents are literally forced to represent ourselves as desperate, our children as hopeless without certain types of services. People with challenges have a right to support. At the same time, we have a right to love and cherish our children and believe in them. We have a right to think our children our terrific, great, a joy, even. It’s not sugar coating anything (back in the day, I was accused of this). My child needs lots of support. I do not wish to embellish anything. I simply want to tell people what he needs as his inherent right. As it is, the services and supports for autistic people here in Ontario are neither diverse nor robust.

If there is a thing called fate, I think it’s terminal for all of us, isn’t it? I sure wouldn’t call autism a fate worse than cancer and to be honest, I find it really hard to speak about my son in a way that I find demeaning to him. There are facts, and there are exaggerations. We all want to make the best of the lives we have, and so we should — with the support we need, and the love in our hearts that we just need to express.

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I never bought into the “recovery” model of autism — that the onus was on us and our children to “become normal.” To blame the autistic person or a family for a child not being able to talk is ludicrous and unsupportive. Rather, I believe we have to keep aware of the many cases where vulnerability lies, and provide the finanical support so that families can hire the aides they trust. While nothing is fool-proof and many of our children can be susceptible to abusers, autistic or not, it is helpful when parents have the right to choose a school aide or any type of support worker. A parent or primary caregiver should have the right to turn down someone they do not feel comfortable with. I say this because many children are ascribed workers and Educational Assistants here in Ontario. It might be assumed that if one needs financial support, then one must accept the individual ascribed to them. If it’s an issue for the family, that is if they want to change the worker, there seems to be a lot of red tape. I want to reiterate that the right to a support worker, that both the autistic and the family are comfortable with and trust, is an accommodation and should therefore be a right for autistic individuals.

More and more, I believe that autistic people, including our non verbal children, and parents must be central to the process in building our support teams. As I’m seeking camps and other activities for Adam to grow more independent and enjoy his life, I want to try my best to ensure he is protected. I’m not sure I can at all times, and maybe that is the most frightening part. Yet, Adam can indicate to me when he’s distressed by virtue of his behaviour. Just transitioning to a new home and a new school, he indicated to me that it was very difficult by body-jerking and losing some of his words. He was disorganized and needed more physical stimulation. He also expressed more repetitive behaviours during this time. Of course, Adam is still learning how to communicate in a typical way by typing on his computer and his devices.

These behaviours, however, were such important examples for me to see how Adam can express himself during stressful times. It is something I am tuned into now as he grows older and perhaps will express other distressing things to me where he needs more of my intervention and support.

For more reading material on autistic abuse see neurodiversity.com.

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“The news
Just came in
From the County of Keck
That a very small bug
By the name of Van Vleck
Is yawning so wide
You can look down his neck.

This may not seem
Very important, I know.
But it is. So I’m bothering
Telling you so.

A yawn is quite catching, you see. Like a cough.
It just takes one yawn to start other yawns off.
NOW the news has come in that some friends of Van Vleck’s
Are yawning so wide you can look down their necks.”

How ironic that Adam and are reading Dr. Seuss’ Sleep Book nightly, these days, and I open The Globe and Mail to find a reiteration that autistic kids are not prone to contagious yawning.

I have to yawn. While I haven’t look at the actual study itself, it seems that “The diminished tendency to engage in a contagious yawn suggests autistic kids’ may miss subtle cues that tie them emotionally to others,’ the researchers write in the Journal of Child Development.” (The Globe and Mail, p. L5, September 17, 2010).

I’ll just say this: While autistic kids may have some difficulty with their imitation skills, yawning seems spawned by something more physiological. Adam yawns when I yawn… a LOT. Perhaps he’s part of that 11 % of autistic children who do yawn according to Geraldine Dawson. Adam will not yawn, however, “on command.” Sometimes I wonder if my little autie just doesn’t see the sense of it. I mean, some things we ask our children to imitate can be kind of silly. Therefore, I would not compare contagious yawning skills to pure imitation skills.  I’m not certain if the comparison should be used in determining if autistic children can figure out those “subtle cues.” As I said, natural contagious yawning for Adam comes, well, naturally.

Science has not at all discovered the nature of yawning. I feel compelled to qualify this just in case our autistic children may be prematurely described by yet another, interesting, but perhaps not quite precise theory. Yet, that’s what we get in the autism community, don’t we? A helluva a lot of theories, and autistic kids are the prime target.

“The yawn of that one little bug is still spreading!
According to latest reports, it is heading
Across the wide fields, through the sleeping night air,
Across the whole country toward every which where.
And people are gradually starting to say,
‘I feel rather drowsy. I’ve had quite a day.”

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I was very excited when Pascal Cheng told me that Larry Bissonnette and he, both of whom I brought to Toronto several years ago, and Tracy Thresher were traveling the world to change views about autism. They travel to Finland, Japan and Sri Lanka to change minds, attitudes and debunk myths which was documented in the film Wretches and Jabberers. We have learned from anthropologists like Roy Grinker in Unstrange Minds, among others, that the views about autism around the world can be less forgiving because of cultural differences.

 Adam was diagnosed at 19 months of age as a hyperlexic, “high-functioning” autistic boy. Over the years, however, he shows ability, is very bright and intelligent, but Adam has real communication difficulties and more “classic” aspects of autism…so dx is always precarious in the early years. I think of the very different experiences between Adam and Larry — how the world has changed so for autistic people and I am grateful for the generousity of autistic adults. 

As a parent in this for just over six years now, I have to say thank you to everyone who put forth this effort. I often dream of Adam traveling the world, talking to other people, helping other people. That’s my dream, I suppose, and not necessarily his, but that’s what parents tend to do. So even if Adam chooses another path,  I am thrilled that Larry and Tracy are forging a path for all the “Adams” who will grow up very soon.

“We are more like you than not,” says Larry in the following trailer.

That’s for certain.

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“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.

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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:

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References:

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

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