Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly,
mother of Adam -- a new and emerging writer.
Thanks "Aspie" for this charming video, inspiring enough to begin the year anew. Children light up our lives, our days, and for me anyway, are the engine that drives me on my most difficult days.
May it be a good 2007 for all parents and children everywhere.
More often, I receive a call from a parent with a newly diagnosed autistic child. I remember my first weekend, when I first heard the word "autism" outside of Hollywood context. All I could picture was the doom, the life now "limited" to "dealing" with disability. The weight of the perceived "restricted" life felt so heavy I could barely breathe. I know that every parent reading this remembers the day when the word autism was actually uttered like remembering where you were and what you were doing at the time of 9/11; the moment when time stands still and we catch a glimpse of mortality.
Now three years later, I am far enough removed from that place that I can look back objectively and consider the journey we've taken, but not so far that the pain is far from memory, or the tears of worry still don't occasionally trickle out of an eye. In the world of dis-ability, the shape of pain changes.
So what do I say? I first ask what they understand about autism. I ask what they've heard, and what they have done thus far. I then begin to tell them that autism is different for many people, and like any family, decisions about care, education and therapies will be individual. I like to refer them to other autistic writers and advocates, because they are the real experts in autism and teach me so much. I talk about our personal experiences (some of which you can read in this blog). I urge parents to explore what works best for their child, and of course, to trust themselves and trust the people they are working with. (I have, finally, a good relationsip with a woman who is fomerly trained in ABA and a Ph.D in psychology with whom I can discuss issues constructively and to help me organize Adam's teaching at home. I like a healthy, benevolent argument that keeps everyone learning for Adam's best interest. In fact, it took nearly three years to achieve the kinds of relationships with therapists I've developed today, through experience and gathered confidence).
So why the tear I mentioned earlier? Do I wish Adam was not autistic? Do I wish for what I don't have, what he is not? Or do I focus on what is and what I can do and rather than what isn't our reality. Even more than that, what I feel I can't seem to express well enough here tonight, is that there are gifts in the very things that we orginally think are not gifts at all. There is beauty. There is joy.
In finding all of that good and sweetness in the child that I do have, I care strongly about the way people view him without knowing him, without taking the time to look and SEE beyond the "category," and the way people put the onus on this little child to FIT IN, instead of thinking about what he needs and how he needs to be accomodated in order to be a successful little boy. Most importantly, I want him to feel good about his life and, ironically, that he be provided the accomodations so that he can FIT IN if he so chooses, and in his own "size." At four and a half, I have been able to provide the supports that seem to be given to the little children more readily than when they become older. Soon, as he enters an integrated primary school, the blows will come. No parent can protect a child from everything. That fine balance between advocacy, protection, and accepting our children's right to be individuals and figure it all out...well let's just say I don't expect to be the perfect parent.
So what can I say to a parent of a newly diagnosed child with autism? It's an uncomfortable place to be, actually, because I do not like to appear as all-knowing as many "experts" like to appear. I still await more years, more experience, more scars and of course, many more successes. All I can offer is the information that we, as a society, do know, state the issues, list the therapies. All I can state is my own messy journey in autism, as messy as any family's and as trial-and-error based as parenting can get. And then I want to say...carry on! Life with autism can indeed carry on, even joyfully. Indeed, it could carry on much more easily if we lived in a more tolerant and accepting world.
On that note, it is heartwrenching to watch a society march heartlessly on with messages that do nothing but spend precious human lives to justify their own incompetencies, their research, or their need for pity. As happy as I am with my son who is autistic, we live in a world that is not very easy for autistic people -- for those whose disability appears so visibly on the outside to the person whose disabiltiy is "invisible" so that a family or society does not think enough about accomodation.
Also, while it is perfectly okay to work through feelings of confusion, grief and worry as parents, it is simply not okay for people to go out in public and talk about autistic people as if they are nothing, have nothing inside, know nothing, or have nothing to contribute and that if they do, they are anomalies, or "not autistic," in order to receive pity or support. I consider all the worry and tears I shed in my first days, when I realized that Adam was autistic but didn't really understand what that meant. All of those messages are incredibly pervasive -- they infiltrate the media, they propogate research projects that get publicized by the media and get funded by some charities, they get purported by some families in order to receive funding for their preferred type of therapy, they go to Hollywood and then presto -- they enter mainstream consciousness, or ignorance, about autism.
The popular image of autism is dark and "mysterious." The image of autism is dehamanizing to the point that those very parents who want to get that funding, who want desperately to BE RIGHT, will say that a person is not autistic if they can speak or read or write. No -- those people MUST be savants!! If they are not dysfunctional enough, they are even less human than autistics because they do fit into the "devastation criteria." If they are not savants, (and those who read and write are not savants, btw), they fall into an abyss. They are the supreme nothing, unworthy of this pitiful pity, and then publically besmirched. We are witnessing the most horrific arguments about humanity ever -- these dangerous attempts to categorize humanity and worth, all while these same groups will use the statistics which lump these very "categories" of human in order to bolster their epidemic numbers.
The real autism is diverse. It feels, it speaks, it has a voice and an opinion...it is like all of us -- so utterly human -- the same, while different, indeed what being human is all about.
Christchurch made another poignant video, about the effects of what the devastating messages about autism create.
THE CONSEQUENCES OF DEVASTATION RHETORIC
You can read a news report about the Gravelle case here.
To all my fellow bloggers and readers, have a very Happy Holiday. This is The Autism Acceptance Project's Card to you:
May we all appreciate the life we have, and never disregard the dignity of others. In appreciation, I direct you to Lisa Jo Rudy's What Do You Love Best About The Autistic Person In Your Life, now at 88 comments last I checked. It is a wonderful way to celebrate our autistic family members, and appreciate the lives we have with them.
Also, in appreciation, if you want to feel uplifted, visit PosAutive for more inspiring autism stories.
Here are some of the clips I could get from the Joy of Autism: Redefining Ability and Qualtiy of Life event and The Autism Acceptance Project. What's missing here is Gill Deacon's beautiful introduction of me prior to this interview, in which she uses the story by Emily Pearl Kingsly: Welcome to Holland. It was a lovely introduction and did put a tear in my eye. You might also want to read this story Farewell to Holland, a response by another parent to that story,which is also terrific.
Also missing is the ten minute interview on CP24 with Anne Rohmer.
I am borrowing the title of this blog from Dr. Rita Jordan and Stuard Powell, from their book Autism and Learning: A Guide to Good Practice. I hear it used in references to teaching methods that still remain unproven as "effective autism" teaching methodologies -- preached like gospel. Repeated over and over again, the term has become a meaningless cliche. So if we are going to use it, how do we define it, as we continue to know little about autism? It seems we all want good practice, but in advocacy and "fact sheets" the term is used abitrarily and no one can truly define what it is with regards to teaching autistic pupils. As Jordan and Powell note, however, it is governments that want to hear it. I appreciate this book and how it gives some practical and sensible answers to re-evaluating ourselves in how we approach and think about autism, and respects the learning style of the person.
I have summarized some of the first chapters for those who have not yet read the book, in hopes that educators will pick it up:
"With increased public awareness of autism and the proliferation of one day courses and seminars, many teachers are developing at least a cursory knowledge of autism and its implications. This is a positive step, if it leads to an awareness of the complexity of the condition and a recognition that there is more to be known both in terms of understanding the condition, and ways of meeting the needs that arise from it. It is less positive if, as is sometimes the case, just the difficulties are emphasized, so that the teacher is left feeling that intervention is pointless or needs to be left to the 'specialists.'...teachers need the knowledge and the support to know when and how to intervene and how to make that intervention effective....there are still numerous examples of where teachers, especially perhaps in the mainstream, either do not fully appreciate the nature and extent of the child's difficulties or are unwilling (or perhaps unable) to alter their own approach to teaching to accomdoate those difficulties. Parents of children with autism are still often told by mainstream teachers, even when the child is academically able, that, if his or her problems are that severe they do not 'belong' in a mainstream school. Ironically, it may be the very wish not to separate and segregate children that leads to educationists refusing to 'label' a child or to see the value of a diagnositic category such as autism, which in turn leads to interpretation of behaviour as wilful adn the subsequent expulsion when the child fails to conform. We would suggest, therefore, that recognition of autism as a condition with important educational consequences is a first step to creating good practice. There has to be some understanding of the kinds of difficulties that [that autistic people exerience] so that behaviour is not misinterpreted and the children's difficulties and strengths in particular contexts (their special education needs) are understood. Yet it is here that there must be an INTERFACE with good teaching. Without the skills of observation, the capacity to motivate and involve,the knowledge about autism will not translate into good practice. The art and science of teaching has to be informed by the knowledge of autism, but also has to exist in its own right. Without it, pracitioners are reduced to following set routines and recipies and some home treatment programmes are indeed based on this, so that they can be performed by paraprofessionals and parents. Such programmes have some value (and indeed extensive claims are made for their success), if only that they offer intensive early positive intervention, but they are also limited. 'Good practice' should involve professional judgement and the capacity to adjust the programme to meet the changing needs of the child and the situation." (pp.16-17)...
"Some of those involved in developing the processs of accreditation began to have doubts about its validity on the grounds that 'good practice' could not be defined. Indeed, early attempts to reduce the task of the peer reviewers to the ticking of checklists of certain behaviours, did prove abortive as these quantitative assessments seemed to bear little relation to perceived quality. What they did do, however, is highlight the fact that professional and experienced judgements are just that, and their subjective basis cannot be disguised by attempts to provide quantitative ticklists. The objectivity must reside in the selection and training of those making the judgements and hte value of the judgements resides in the quality of those making them. In effect, while it may not be possibel to define good practice, it is possible to recognize it and it is the experience and knowledge of the observers that determines the validity of that recognition." (pp.18-19).
The Lure of the Recipie
"We have already mentioned the dangers that may arise from knowledge of autism that stops with a knowledge of the characteristic difficulties and we have shown that good practice must incorporate both knowledge of autism and good teaching techniques. We would like to mention here another source of danger in the way that some teachers and some authorities adopt training in one particular approach as the training for autism. The particular training packages that are marketed in this way are of variable quality, but our worries do not stem from the adoption of any particular approach, but from the notion that training in any one method will be adequate for developing expertise in working with people with autism." (p. 19)
"Thus, we would want to eschew adherence to any one approach, especially when followed as a set recipie. We recognize that teachers would sometimes wish to know exactly waht to do with Johnnie on Monday morning, but we also know that most teachers recognise this as an unsatisfactory solution to their difficulties. An outsider may be able to offer something useful to resolve a particular situation with a particular child (and there will be times when all of us get stuck in our approach to a problem and it helps to talk it over with others and gain fresh insights and suggestions) but most teachers do not want the sense of being de-skilled, which comes from having to follow someone else's package without being able to adapt or extend it. In our experience, what teachers want is to know what strategies there are available and to understand both the potentialities and the limitations of their use. They want the time and resources to enable them to observe and make their own evaluations of the child and the situation, and they want sufficient flexibility within their work situations to enable them to apply the strategies and approaches their professional judgement dictates.
Many teachers, then, describe the approach they use as 'eclectic' and will go on to elaborate to the effect that they 'take the best from a range of different approaches.' This could represent as teachers suggest, the best of all worlds, or it could be chaotic with the benefits of one approach being negated or unrealized because another approach has a directly contrary effect. It may also mean that no one approach is given a chance and that the teacher does not really understand the rationale for each approach, but only uses some technique that has a difference meaning and value divorced from its proper context....[For example: Option and Lovaas style] On the one hand, they [the children] are being encouraged to make spontaneous moves towards interactive play with an adult and to enjoy rather than fear the experience. On they other, they are being made to conform in a very set way, there is stress in having to identify and produce the one correct response on cue and the adult may dispense spoonfuls of jam but may also dispense sharp reprimands which may even be shouted (from witnessing some Lovaas style programmes). It may seem as if we are suggesting that one of these approaches is better than the other; it is true that Option is more easily accomodated without our approach than Lovaas, but that is not the point we are trying to make. The point is, that to employ both approaches would be confusing and the aims of neither programme are likely to be fulfilled." (pp. 21-22)
"It is not only important, therefore, that what is done fits together into a coherent whole and that each part of the curriculum contributes to the overall aims for the child, but also that there is a prinicipled rationale for teacher one thing rather than another or in one way rather than another. These principles should reflect what is known of autism, what is known of the child, and hte overal educational philosophy of the school. They should respect and incoroprate where possible, the views of the parents and of the child. This may involve elements that come originally from an eclectic trawl of different approaches, but the dangers of this are avoided by the principles guiding their inclusion and the way in which they fit together to serve the overall educational aims for that child." (p.22)
I have taken the liberty of summarizing Jordan's and Powell's "Curriculum for Autism,' on pages 24- 27. "A curriculum for pupils with autism, therefore, may or may not incoporate the National Curriculum, but it should have the following features:
1. It's content should be determined by the needs of the child rather than cultural values in respect to academic subjects adn so it needs to be pupil centred and not subject centred;
2. It will need to give priority to communication and interpersonal areas including the specific teaching of cultural norms and meanings;
3. Functional life skills should be involved from the start (there is no reason why the child should not be sorting knives from forks or socks from pants, rather than plastic bunnes from plastic Christmas trees), although we would be wary of having too low expectations and teaching children of 12 to clean toilets (as happens in some curricula) on the grounds that they will be expert by the time they are ready to take a job;
4. We would also take an eclectic leaf from the Higashi approach (Quill et al., 1989), as well as from British primiary school survival tactics and inlcude a period each day of sustained physical activity;
5. a) All centres should look at ways of encouraging integration and teaching the child with autism skills that will help to make this successful;
5. b) There will need to be education for integration into the community and reverse integration where mainstream pupils go to the specialist setting [this] should at least be a possibiltiy;
5. c) There will need to be training in imitation and observational skills, and then a way of providing access to normally developing peers to practise skills, and to have them prompted and drawn to the child's attention in real life contexts;
6. There nees to be some form of structure to minimize stress and promote learning and , in most cases, this is most appropriately provided through visual structure, as in the TEACCH programme;
7. In accordance with our own views of the fundamental difficulties in autism, the teaching approach should be one that provides opportunities for learning to learn. This will involve addressing eachof the areas of difficulty and providing direct teaching in areas where intuitive understanding is lacking. [please note, that there are autisitc people who do not agree with the prinicple of having to "learn how to learn" and this should be understood as there is research going on with regards to autistic cognitive ability and differences in learning styles/intelligence. So I suspect, as we continue to learn about autism, we will become more sophisticated in accomodating autisitc learning styles] Bold Mine.
8. Most children will need some access to 1:1 teaching, although there are some who cannot tolerate this kind of confrontational contact (especially if the teacher sits across from the table from the child) and will respond better in small groups. Note that we merely access to 1:1 teaching so that in some cases, the time allocation can be used by the teacher to observe rather than teach. Although childrne wiht autism will have particular difficulties in learning in and from groups, this does not mean that they should be shielded entirely from group teaching...difficulties need to be seen as a challenge and an opportunity, rather than an indication that this aspect of curriculum work should be denied. [bold mine]
9. It is important that schooling for children with autism does not become a succession of activities devised to address their difficulties; their strengths also need to be developed and encouraged so that we can maximize potential in all areas of development. In the same way, difficulties should not be a barrier to experiences, but rather the teacher should ask of a desired goal 'What support will this child need in order to participate in this activity?';
10. Teachers should try and engender an atmosphers of trust and high expectations, with the trust including an understanding of the child's real difficulties rather than a misperception of them as resulting from laziness or aggression, or whatever. Parents are important partners throughout education, but tyhis is even more the case in autism where there needs to be consistency across all settings if the child is to progress, and where communicative and early interactive skills are often best fostered in a home setting;
11. [It is important] that teachers [know] about autism and the kinds of differences in thinking and learning that can be expected as a result, the curriculum should include policies of staff development in understanding autism;
12. We would make a plea for education, not containment or training. We have already stressed how much there is for the pupil with autism to learn and how dependent such pupils are on being taught explicitly. They cannot afford to spend time on occupation tasks, unless there is a specific educational goal of teaching the child to perform the task in a social group independently or faster than before. We have sometimes seen classes arranged and resourced so that the child as 1:1 time with an adult, only to find that it is wasted by the adult not quite knowing how to use this tiem. The teacher may get the child to perform a task they can already do (mere occupation) or may interfere with the child's spontaneous behaviour, not to extend the play or teach a new procedure, but seemingly because this is the time allotted for 1:1 work. Teaching 1:1 should not be assumed to be like group teaching only easer; it is not! Teachers will need training themselves on how to observe and interpret what the child is doing and, as we point out later in the book, when to intervene and when to hold back.
None of it is easy.....BUT IT IS REWARDING [CAPS MINE], especially if we sometimes manage to 'get it right.'" (Jordan and Powell)
I would love to talk about IQ and overall testing in light of the above. Consider this conclusion to an article in the November issues of GeneWatch, Intelligence and Genetic Determinism, A Brief by the Council For Responsible Genetics:
"Based on findings from current research, further study on brain plasticity and neural development, improvements in learning environments and teaching techniques, and policies which emphasize support for disadvantaged populations [in reference to ethnicity here] are likely to yield more positive outcomes in school achievement. Contrary to what authors of The Bell Curve suggest, key social policies have demonstrated strong positive effects on IQ scores, particularly for disadvantaged groups. Unfortunately, however, a new educational climate is forming. Increases in all kinds of academic testing have overtaken more balanced approaches to learning. Possibly the largest shift occured in 2001 with the "No Child Left Behind" Act implemented by the Bush Adminstration. Research has shown that self-esteem directly effects motivation to learn. We will continue to see that performance on IQ and other standardized tests has an effect on the way students are treated and on their self-esteem. Low scores affect the attitudes of teachers and other adults as well, so that this approach may ensure that students who struggle with testing will end up in classrooms and categories in which they won't be expected to improve. Int his way, performance on tests, rather than helping children to learn and improve, can become self-fulfilling prophecies or failure for both the children and the adults who are expected to teach them."
We know that there are plethora of tests out there unsuitable for the autistic learning style (Mottron, Dawson), which is why we must continue this drive to support autism and insist on a dignified response and approach to teaching and accomodating autistic people.
I'll end with some videos by "Christschool". They remind us that no autistic person should be deemed "a finanicial burden on society," and to get on with accepting autism, working to carefully understand it, and by listing a person's needs before resources and before politics. We can accomodate everyone if we break the barriers of bias, misrepresentation and misunderstanding.
Here is the first video which cannot be embedded. You can view it by clicking here. And then this one:
Tis the season to be joyful and thankful for the many people I've come to meet over the past year and the achievements made in promoting, with the help of so many others, a better understanding of autism.
We enjoyed a concert by autistic musician Michael Moon and enjoyed a month long exhibit and critical analysis of how autistics are represented and viewed by society. Kevin Leitch of Autism Hub was so helpful to me personally in streaming in video from YouTube about Autism advocacy so it could be broadcast to the Toronto Community. Thanks to Dinah Murray, Kevin Leitch and Dr. Darold Treffert for writing endorsements for the project that were posted at the exhibit.
The Autism Acceptance Project is publicizing PosAutive.You can find the press release by clicking here. We also have our video on the PosAutive Project's YouTube Site:
The Autism Acceptance Project
Redefining Autism became part of a the media's theme in covering The Joy of Autism: Redefining Ability and Quality of Life event. We received national coverage in the following:
CTV's report on the myth of vaccinations causing autism on October 4th
CTV's nightly report on the opening of The Joy of Autism exhibition with Larry Bissonnette, Jonathan Lerman, Mukibaum Treatment Centres and Brian Henson on October 5th CP24's interview with Anne Rohmer, October 4th
and more -- there were smaller radio interviews and coverage by Erica Ehm and others. Some of these clippings and video footage will soon be available at www.taaproject.com.
Thanks to Ralph Savarese and Roy Grinker for two wonderful books that have recently come to market and to Ralph, for supporting the project as well as Autism Diva, and the many wonderful bloggers I have listed at the side bar of my blog that I read regularly.
Okay...my list of gratitude is longer than you'll want to read, so I'll stop there. I could thank Henry, my family, but they know how grateful I am for their support...I think! I thank all the bloggers, writers, and researchers out there who have done so much to promote a greater understanding of the complexities of autism, but who also believe in accepting autistic people -- conducting research by including autistic people and doing so with respect. Those who participate with a spirit of cooperation have inspired me to do more with The Autism Acceptance Project and our list of supporters is growing. Even when parents and autistic people disagree, it is vitally important to discuss issues with a sensitivity to Personhood. If you want to register for news and information, go to www.taaproject.com and "Get Involved."
Which leads me to the season's greatest blessings of all: my son Adam:
I endearingly call this photo "Adam and the Nutcrackers." This is a recent photo and soon, Adam will be five.
An older photo of Adam when he was nearly three.
It is lovely to have Adam in my life. There have been challenges, yes, but without Adam, I would never have garnered the positive outlook I currently have. I've come to learn that being positive comes in the strangest packages. Without Adam, I would have been stuck in my old box of meaningless expectations and a frenzied life. Adam has lead me to a life that is blessed with appreciation, and purpose. He has taught me to consider other's perspectives, and he is teaching me more about empathy for others. He is teaching me that there is never one answer, or one way of doing something, but instead, a life of possibilities. As Jonathan Lerman says "there's no such word as can't," and I know that Adam would agree.
I've been thinking about writing a post about an agreement about what not to say about autism. Because there is so much disagreement, lack of scientific evidence and understanding about autism, I am always struck with the "assurance" of some people on how they can speak about autism. Be in so-called "Fact Sheets" created by parent groups, or some professionals who speak about autism as a disease or condition, with lack of substantial understanding, we have to agree at least about what NOT to say about autism, until we know otherwise. Based on what we do know, I suggest we begin by creating a list that we can all reference when speaking about autism and further, put pressure on the Ministry of Education and others to impose an anti-ableism policy as much as we enforce anti-racism. While the drive towards inclusion is there in words (in the Ministry of Education's Special Education Transformation document submitted on May 6, 2006) we can't enforce autism acceptance, it seems, without an enforcable policy, and a means by which teachers and schools cannot turn away any child, no matter what the disability. Turning away children with autism is happening far too often in both public and private settings. "We don't take autistic children," or "we don't want to look like a speical needs school," is something I hear almost daily. Or "we are far too verbal a school. Your child may have difficulty here." Or my favourite: "we don't have enough space in our school for shadows." While there is intent to accept, there is still a great amount of hesitancy.
Words are not enough. Bad words are even harmful. Semantics plays a role in how people are viewed. So, I've started a list of what we might agree on as a society in how we reference autism, that I thought everyone could contribute to, so this is just a stab at it. It's a draft about what we might agree on, which may lead to a list of what NOT to say in light of lack of evidence, about autism:
1. Agree that murdering an autistic child is not excusable simply because the child is autistic. Therefore, although living with challenged kids is just that, "a challenge," let us not excuse violent acts in our reference to autism;
2. Agree to refer to autism as a disability that requires accomodation;
3. Agree to refer to autism as an ability as education needs to cater to the unique learning needs and abilities of autistic children who are as learning "different" as any child;
4 Agree to reference autistic people as people, not people "afflicted" with a disease or illness;
5. Refrain from referring to autistic people in pejorative terms: "autism is a living nightmare," horror, etc. as it does not connote any respect for the living autistic person;
6. Agree to invest in Understanding Autism and become less fragmented in terms of investigating appropriate teaching methodologies for autistic children;
7. Refrain from using "Autism Treatment" to "Autism Accomodations and Education" in order to respect the fact that we do not yet fully understand autism and the manner in which autistic people learn;
No parent should find it necessary to speak about their children in pejorative terms in order to receive effective accomodations which should be backed up by accurate science. There is a way of acknowledging struggle without spotlighting children in a miserable way. I will quote here from Peter Szatmari, from his testimony to the Senate Committee on Social Affairs, Science and Techonology on November 22, 2006, in which Eric Fombonne and Michelle Dawson also testified:
Szatmari: "The first thing is we do not know enough. [bold mine] As Ms. Dawson pointed out, there is only a single randomized control trial of the efficacy of early intentsive behavioural intervention. There are not many programs in this country that have such a large investment that are based on only a single randomized control trial. It works. However, there is a lot of misinformation. I would argue that the 40 per cent cure rate that is often quoted is not really consistent with the data. It is not based on teh best-quality study that is available. There is no question that some children with autism spectrum disorder do need intensive early behavioural intervention. It is very expensive. However, not everybody needs it. There are other forms of ABA, if we think of it in the sort of broadest sense of the term, that are less expensive, less intensive, can be delivered in a more naturalistic setting and which are very effective for those children. There are some children who will not respond to any form of intensive behavioural intervention no matter how much you give them for how long a period. They need another form of intervention, and they deserve the right to have that intervention. The key is that we have to match the type of intervention to the type of child."
Dr. Eric Fombonne: ..."there are techniques that can be very harmful to the child. Children have died from correction therapy based on the notion that mercury poisoning is causing autism, which is completely untrue. Therefore, we need to provide evidence-based information to Canadian families in order to inform them of what works and what does not...."one approach has been the TEAACH method [showing slide]. This is a patient of mine who is nonverbal, Jacob, but he has been using these pictograms so he can communicate. He does not have any words but he communicates in his family using these pictures. This has been around for many years. The evidence for the efficacy for this method has not been as good as we like, but we have techniques like this that work....What are the factors that will explain the response of a child to a particular treatment approach? ...There are different approaches which may work for some children; others work better for other children. However, we do not know that much yet. [bold mine]
8. Agree that we "learn to do by doing," meaning, that you won't know how to accept an autistic child into the classroom until you bring him/her in. We don't have to wait to accept people with evidence;
9. Agree that there are many ways to teach an autistic person;
10. Agree not to use CURE in reference to autism. Agree to invest in Understanding and Accomodating Autism, and indeed celebrating the lives of autistic people as a means to humanizing instead of dehumanizing people; (we cannot use the word CURE for many reasons: first being that many autistic people are taking offense and the idea of a CURE does not lead to Acceptance of people. It connotes aberration. Second, like Cerebral Palsy and Deafness as only two examples, autism may not likely "curable.") Look up the history the history of "behavioural treatments" used to "cure" cerebral palsy, which we understand today to be uncurable. Use history as a guide to how we regard people and use our powerful language to support people while we continue to study to understand autism;
11. Change the name of the "Combating Autism" act to "Understanding Autism" act and the language therein;
12. Agree that all parents handle disability differently and that parents require more support as we continue to understand autism;
13. Agree that "being different" is as unique as being human.
I invite more people to add to this list. I intend to make it longer and more detailed. If you want to contribute via your blogs, it might just be a positive step into appropriate representations of autism, and might also be worthy of a press release.
Finally, I want to share a anecdote with you. I was watching the news for a brief ten minutes last night, and there was a commercial, I wasn't paying attention for what, with kids playing karate. In that commercial, there were a number of children kicking and doing their "karate chops," and the camera flashed to a girl with Down's Syndrome. I didn't notice it in the beginning. She was just there with the other kids and I truly didn't think anything of it until about two minutes after the commercial. I thought to myself, "I didn't even notice that she was different," but the moment I realized how unremarkable it was, how she truly belonged in those scenes I thought that this is the place where we all need to be. When we realize that disability is not such a big deal, and that providing accomodations is much easier than we think, we will be a lot further ahead. We only just yap much too long about it that it SEEMS big.
Yesterday, I linked a You Tube video showing Imus criticising CBS's "Jewish Management." About an hour after I posted that video with subsequent anti-semitic supportive comments (supportive of Imus' own anti-semitism), the video and comments were taken down.
Here is a link to Imusblog where some other commenters noted his racism. He is accusing "Jewish Management" of boycotting a The Blind Boys of Alabama on his show.
Does this make any sense? Accusing the Jewish people by virtue of stereotyping them and by accusing them of intolerance of disability? It doesn't make any sense to me. Firstly, two wrongs do not make a right. You can't stereotype a people and say you support tolerance of people with disabilities. Secondly, it doesn't make any sense that a people subjugated to hatred themselves would forbid another group of people who do not receive equal rights and tolerance in the world. Certainly, this is only one side of the whole story and Imus seems to have control of the mike.
I was recently disgusted when I heard this comment about CBS:
Imus Talks About CBS
I am more terrified at the comments that are on regarding hatred of the Jewish people that you can read below that video: click here to read. We all know where stereotyping leads and has lead.
Is this the kind of hero and advocate that autism needs? Someone who hates Jews? Someone who one might deduce, "hates" autistic people? Is this the right way to promote tolerance of our children?
We should all be skeptical about who is talking for whom.
What have we learned about tolerance in allowing such intolerance?
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UPDATE:
In the last hour, the comments I referred to above (the antisemitic comments and video) have suddenly disappeared. I saved the following comment sent directly to me from my email box from someone named "fullstemahead." This was one of the many antisemitic comments on the YouTube comments section under the Imus video where Imus was targetting CBS's "Jewish Management." Here is the one comment I saved directed at me:
This coming from a semite. You proud of yourself? Anti-semitism is a moral imperative. Semitic-supremacism must be challenged at every corner. Semite-supremacism will not stand when good people speak up. Thankyou, Mr. Imus for taking a stand for the world. You're one of those fake conservative Harper kooks, likely, like our neocons, insanely pandering to jewish-supremacist cells. How do you like your Adlers, your western standards and your global TV, run by jews, and that spew more hatred for every gentile on the planet. Those semites who have turned the once beloved Canada into a globally ostracized hatefest. Who are you to talk about "hate"? Hate is what were stopping...You Nazi...Shame. Shame!
Autism: A "Horrible epidemic" for which we must quickly find a cure? Or rather is autism more unremarkable than what we first thought -- a pandemic proliferated by the conflation of circumstance, interpretation and dare I say it, BIG AUTISM BUSINESS, as charities, and autism cottage industries boon throughout North America, all promising to recover and cure the autistic person?
We have known for some time that autism is a modernist construct, the term invented in 1911 by Eugen Bleuler and then adopted by Hans Asperger and Leo Kanner who both observed their first "autistic" clients in their psychotherapy clinics.
Now we have Roy Grinker's Unstrange Minds , which is a anthropological view of autism. I received a copy of the manuscript a couple of weeks ago and am nearly finished it. Grinker introduces the "new" autism phenomenon this way:
"Between 2003 and 2004 the number of grant applications to the National Alliance for Autism Research, the leading private foundation for autism research, doubled. Throught the Internet, people in remote areas of the world read news stories about the epidemic. Media reports consistently refer to autism with phrases like 'hidden epidemic' and the 'mysterious outbreak,' citing the 'exploding number' of autism cases, leading to fears that causal factors such as vaccinations, mercury poisoning, or other environmental exposures (a subject I do not discuss at length in this book) might be contributing to the rise in cases of autism....But is there really more autism, or are we just seeing it more? There are lots of theories around to explain the rise in diagnoses, none of them proven. Some scientists think that the 'increase' is due to more aggressive epidemiological methods that make it easier for researchers to count the right number of cases. Others think that the broadening of diagnostic criteria over the past two decades to include more symptoms, and bigger range of severity of symptoms, has made it easier for physicians and pscychologists to fit their clients into the framework of autism...." (p.9)
Grinker's book is about how culture affects the way we view autism. His book is an interesting study of how cultures around the world view autism and how it affects parents, children and politics.
Recently, The Wall Street Journal published How Many Kids Have Autism? I need not write it again, as Autism Diva has done so nicely here in her post "Nobody's Fool." Although others have taken the time to dissect the numbers and their sources, it was done particularly nicely in this article.
Then, as parents want to exclude "higher functioning" autistic people from the autism "crisis" debate, it is this very group that can be accountable for their numbers that they use in their arguments to proclaim an "epidemic" of autism. They are brazen at including this group in their numbers on the one hand, and then having them and their parents excluded from the autism discussion altogether.
As for the serverity of autism, I've met those who would be classified under such a label. It is not a black and white label either. Recently, Amanda Baggs has been accused by the parents advocating for a cure, or to have the rest of us excluded from participating in the autism discussion, as not really being autistic. You see, if you can communicate at all, despite your disabilities, you aren't autistic according to these folks. It's all quite silly, you see. It's all quite a sensation. As long as fear continues to be promulgated; as long as those who are not affected by autism continue to listen to parents who say autism is a horror, autism will continue to be a "terrible mystery," with dire consequences for our children and autistic adults.
I've met many people on the "spectrum" of autism as a result of The Autism Acceptance Project, and there is something that ties us all together -- that is our humanity. Autistic people are no different than non autistic people. They are no more or less diverse, desirous, aware. You see, the more you look at autism, the more unremarkable it is. It is filled with challenges, yes, as the case can be with any child. It is filled with disability and ability. The worst of it all, though, is the stereotyping, the stigma and potential danger that autistic people face as schools close their doors to our children because of the very so-called "advocacy" that dehumanizes the autistic person, and as parents do not allow autistic adults to participate in discussions about autism. I've heard parents suggest that certain autistic adults "are horrible to look at." I think it is a horror that these very parents suggest that another autistic person, like their very own child, is terrible to look at. I just can't say anymore how disgusting I think that is, because I like to stay positive, and I would like to invite all parents and autistic people into a new discussion about autism and how we want our children and autistic adults to be accepted and included by society-at-large.
So today, as Adam still fights his terrible cough, I found some more unremarkable, lovely, special, autistic children. I thought how wonderful to celebrate them, their differences, the joys. Autism is just another kind of normal. Everything is "normal."
The face of autism
My Autistic Child
This celebration of difference is also featured in the kids movie Happy Feet (Warner Bros.)What a wonderful movie to take all children to as the holidays approach. Maybe a few adults too.
Adam eating his grandmother's Christmas cookie.
Adam and me in 2003
Adam eating his grandmother's Christmas cookie.
Adam and me in 2003
