More information, links and interview transcript for Estee Klar-Wolfond
Estee Klar-Wolfond is the mother of a six-year-old autistic child named Adam. She is the founder and Executive Director of the Autism Acceptance Project, and writes a blog called The Joy of Autism.
Q. WHEN AND HOW DID ADAM COME TO BE DIAGNOSED WITH AUTISM?
KARL-WOLFOND-W: Adam came to be diagnosed with autism, I would say by virtue of the fact my husband had four other children and noticed some, some idiosyncrasies there. And Adam wasn’t running up to Henry, my husband, and saying Daddy, Daddy, Daddy. He wasn’t really looking that much. At first we thought he was a genius. We really thought we had a genius on our hands – and I’m his mother, I personally think that he’s a wonderful child. And he was reading letters and numbers at 11 and 12 months of age. And then soon after that, he was reading words and he was reading words off the bookshelf which was beside his playpen. And he could barely pronounce the words, saying things like goh, which was Gotham, as you know, things like that. So we really didn’t have him diagnosed til about 18 months because of Henry’s concern. And he had this conversation with another parents who has an autistic child. And he thought it sounded a lot like Adam, and it started a process by which we got him diagnosed. And we had him diagnosed by three different practitioners.
Q. HOW DID YOU FEEL ORIGINALLY WHEN ADAM WAS DIAGNOSED WITH AUTISM?
KARL-WOLFOND-W: That was a really difficult weekend because I didn’t know what autism was. I had very popular media images of what autism was, which was a person banging their head against the wall, institutionalized. You know, we’re not exposed to a lot of autistic individuals in the first place, so those were naturally my images. And going online was a very scary process because you would read testimonies from parents saying this is just basically the end of the world. You know, your kid is always going to be autistic and locked in their own world. It was a very scary weekend. I was crying a lot the first weekend. By nature I’m a person who reads a lot, so it started a process and I’m a person who likes to act. So you know, immediately got into this type of therapy that was promoted, is promoted in Canada and started to get that process underway. So it wasn’t, it wasn’t an easy process. It was a sinking feeling. When I first found out that Adam could have been autistic, this was before we had him diagnosed, my heart sank because I didn’t understand what autism was. And I had popular media images in my mind of, of kids who were mentally retarded, mentally handicapped, who were rocking themselves back and forth and complete dissociated with the world. So those were my images and I didn’t understand it. So I was very frightened and I remember spending the entire first weekend really crying a lot, but by nature I read a lot and I started a process very quickly to get him diagnosed. That was subsequent to our suspicion. And following that, following a popular therapy that everybody was telling us to do.
Q. YOUR VIEWS ABOUT AUTISM HAVE CHANGED, ESPECIALLY YOUR NEGATIVE VIEWS, YOUR VIEW OF IT AS BEING THIS TERRIBLY CATASTROPHIC THING. HOW AND WHY DID YOUR VIEWS CHANGE AND HOW DO YOU FEEL ABOUT ADAM TODAY?
KARL-WOLFOND-W: My views about Adam changed since that first weekend. I think part of it was because he’s my only child. You know, there’s a certain level of commitment that you know, he is my be-all and end-all. I really waited a long time to have him. That’s part of it. My love for him is endless. But also when I started to bring people into our lives, I noticed this really prevalent pathological view of him and that made me just feel very uncomfortable and it made me feel uncomfortable for him, that they were trying to change him and they were trying to tell me how to be a mother to him. And it was just so antithetical to, to how I wanted to parent him. And the idea of separating him for, for so many hours a week behind a closed door was, was really, really very difficult. And I decided I wanted to be more part of that and I started to read and study and seek out autistic individuals and what they wrote and later came to meet autistic individuals. And my commitment to learning more about autistic – autistic individuals through the eyes of, eyes of them really changed my view about Adam. But most of all it was Adam that always changed my view because he was, he’s – he never fit the images of what people said he had to be like as an autistic person. He was, he’s very affectionate, he’s very outgoing. He is intelligent. He’s curious. He’s able to learn without a particular methodology. You know, as soon as we – I learned how to follow his lead a little bit more. Things started to happen that were very positive. So I decided to stay along those lines.
Q. YOU ACCEPT ADAM. WHAT DOES THAT MEAN? I MEAN DOES THAT EQUATE TO ACQUIESCENCE OR DENIAL? WHAT DOES THAT MEAN?
KARL-WOLFOND-W: Adam has a very rigorous school day and Mum is very involved in his teaching and learning. And I don’t think there’s any other child who’s involved in learning as much, you know, really as Adam. And I don’t mean that in a negative way. Learning is, we try to make it very positive. Acceptance is definitely not acquiescence. Acceptance means that I accept my child has a disability and I accept my child needs to move his body in certain ways that look atypical from other people. And the reason why he has to move his body in that particular way is to organize himself. Once I begin to understand how he organizes himself, I am better equipped to accommodate his needs and then we’re ready to learn. Or I’m able to better follow his lead and discover through him what he wants to learn, rather than imposing what I think he should be learning. So it’s, it’s an important thing to turn it on oneself as a parent, to say now, this isn’t about what I want right now, this I about this child has to be learning, for instance, a literacy program or learn how to read or learn how to spell, whatever the case may be, we, we have our goals. But it’s not about my expectation about how he’s going to respond. I have to find the way that he can respond best. Can he point? Can he look at something to communicate with me? Can he type it out? Can he use a computer? You know, these are the kinds of things that we have to find out and it’s a process of discovery to find out which child responds in a particular way, and it’s not always typical.
Q. YOU DON’T WANT ADAM NORMALIZED OR CURED. CAN YOU EXPLAIN THAT?
KARL-WOLFOND-W: Normalization to me is a very negative concept because it puts the onus o the disabled person to change rather than rethinking the way society looks at disability. And I think that that’s a very – that’s the challenge that we have right now in our world is that we’ve 80 million people in North America who are currently disabled. We’re living longer lives. We may all become disabled at one point, long term or short term. And we have to reframe the way we look at disability and autism - autism is a disability – so that we can accept, include and better accommodate and not see that as a part of human weakness, which we tend to look at. Oh my goodness, you’re, you have an inability in this area. That must be awful for you, right? Many autistic people don’t feel that way, I learned. Many autistic people find that what seems to be a weakness for other people or a deficiency from another person’s perspective can also be turned into a strength. This remarkable ability to adapt or to see something in a different way has benefits for us to learn about what it even means to be human. So normalization to me is, is a negative. If I were to extinguish Adam’s hand flapping or jumping up and down to make that behaviour look more appropriate, that’s taking away a movement that he needs to feel his body in space and the way he learns and perceives his world, right? So if I take that away, I’m almost impairing him more. Instead, I’d rather use that and just build from what he needs. If he needs to be squished, he’s gonna be squished in order to neurologically organize himself. I don’t see those things as negative.
Q. HOW DO YOU FEEL WHEN YOU HEAR OTHER PARENTS DESCRIBE FINDING OUT THEIR CHILD IS AUTISTIC OR THINKING OF THEIR AUTISTIC CHILD AS CALAMITOUS, AS A QUOTE, UNQUOTE ‘DEATH IN THE FAMILY,’ AS A TRAGEDY AND YOU KNOW SOMETHING THAT MUST BE CURED? HOW DO YOU FEEL WHEN YOU HEAR PARENTS AND PARENT GROUPS SPEAK OF AUTISM IN THIS WAY?
KARL-WOLFOND-W: When I hear people catastrophize disability, I’m at a, I’m at a stage now where I find it offensive, to be really honest, because I don’t see anything wrong with Adam. I see him as a delightful child. He’s capable of learning. Myself as a person who’s had to learn along the way and to accept him, but without targeting parents, I also very much understand what the media, what our medical community feeds parents and what history has brought to the table in terms of disability. How many of us grew up with disabled people in our classrooms and in our neighbourhoods? My contemporaries were institutionalized. We never saw people with disability. We were taught to fear it. So we have to recognize that we have a history of this viewpoint and we have to now overcome it because disabled people are speaking out and they’re saying you know, I just want to be accepted for who I am. I have many challenges that need accommodation, absolutely. But that shouldn’t – you shouldn’t judge me based on that, just that your life is better than mine because I have a disability. We have to look beyond the disability and look at the person, and still recognize disability has inherent challenges within it.
Q. HAVING SAID ALL THAT, DO YOU EVER HAVE MOMENTS WHERE YOU SAY, I MEAN HONESTLY, "I WISH ADAM WERE LIKE A TYPICAL CHILD? I WISH ADAM WERE NOT AUTISTIC." DO YOU EVER HAVE THOSE MOMENTS?
KARL-WOLFOND-W: Moments where I wish Adam was not autistic, hm. I can’t say honestly that I wouldn’t lie in bed and worry about his future by being a disabled individual and how he’s going to be judged. I don’t think there’s any parent that isn’t concerned with how their child is going to be treated. If a child is severely in pain, they’re more vulnerable to abuse and all kinds of things. But that’s the challenge. And you know, if I sat around and wished for that every single day that my child wasn’t autistic, I’d be missing so much of his life, you know. And I’d be wasting time really. And there are aspects to autism that are extremely challenging, you know. Sometimes a child will forget themselves and run into a street or sometimes a child will have severe anxiety issues that we’ll want to solve. These are the challenges of the disability but it doesn’t mean that I don’t accept him for who he is, right. So I’m not extinguishing behaviour. I’m not seeking out – I think the cure, to prevent and cure has many more complex issues around that concept because it’s a black and white way of looking at disability. It means oh my gosh, you’re sick, we have to cure you. It must be terrible to be disabled, right? It’s like a cancer, you know. Autistic people have been around since forever, you know, that’s the argument. We’ve had autism in our diagnostic statistical manual only as recently as 1993. We have maybe people who are being diagnosed autistic who aren’t really autistic, you know, who show traits of autism. I can say for certain my son is classically autistic. Where was I going…. So anyway, I wanted to talk about cure being more of a – it’s just too pat, it’s just too general. This isn’t about a cure. It’s about choice, it’s about addressing society’s attitudes towards disability. I think many disabled people are very worried about this concept of prevention, you know, whether it be Down’s syndrome, whether it be autism. Today as a parent, when I heard in the media that Down’s syndrome, you know, we can prevent it and it’s a big news story, it affects me now like it’s never affected me before. Before Adam, I wouldn’t have thought twice about it. This is sort of a normal thing. You go into a genetic counselor’s office, they tell you your risk factor. But nobody ever tells you what kind of life is possible with a disability. You know, now I have, Adam has friends with Down’s syndrome. I know autistic people. My concept of life has completely changed, now meeting happy disabled people who yes, have challenges and would like to overcome them. And one of the biggest challenges is the way society views them because then they have less accommodation and they’re not as included as much as they could be.
Q. BUT THERE’S SOMETHING VERY BASIC HERE: ISN’T IT NATURAL - MORE THAN NATURAL - FOR PARENTS TO WANT THEIR CHILDREN TO BE PART OF THE MAINSTREAM, LIKE MOST OTHER CHILDREN, JUST BECAUSE – AND YOU’VE TALKED ABOUT THIS – THEIR LIVES WILL BE EASIER. THEY WLIL FACE LESS CHALLENGES. WHAT PARENT DOESN’T WANT THEIR CHILD TO BE HAPPY, SUCCESSFUL, RICH, FAMOUS, WHATEVER? I MEAN THAT’S WHAT YOUR AVERAGE PARENT WANTS FOR YOUR CHILD.
Q. AND WHEN YOU HAVE A DISABLED CHILD, WHEN YOU HAVE A DISABLED AUTISTIC CHILD, THE CHANCES OF THOSE THINGS HAPPENING ARE CONSIDERABLY LESS. SO I MEAN CAN YOU TALK ABOUT THAT?
KARL-WOLFOND-W: I now see Adam’s chances of success in this life – I’m very optimistic about his future. I see them as greater. And the reason – that’s why we’re working towards inclusion. That’s why we’re working towards changing society’s attitudes. That’s why we’re making sure that no child be turned away from a school, that a child is allowed to bring any, an autistic child into the classroom, of the family’s own, you know, family appointed aide. To me a family appointed aide – remember, having an aide, having somebody assist you has no bearing on your intellectual abilities, right? It’s just a way of helping you navigate. We don’t expect somebody with cerebral palsy or Stephen Hawking not to be in his wheelchair or to have a device, right? So, and he’s a very successful example of somebody who, who is disabled and able to, to be part of the world. And I have the same expectations of my son, that he is going to be similarly successful. But we as parents have to insist that we have a systemic problem and teachers and teachers college need to be taught how to accommodate needs of special needs children. We have to recognize special needs does not always mean intellectual deficiency and how do we bridge those gaps. We have to recognize that our future generations of children need to see disabled people and be their peers. And this way we’re not going to marginalize and ghettoize individuals with disabilities.
Q. I APPRECIATE WHAT YOU’RE SAYING ABOUT HOW WE WANT DISABLED PEOPLE TO BE BETTER ACCOMMODATED. BUT NEVERTHELESS, CAN YOU NOT APPRECIATE THAT IT’S A VERY UTOPIAN VIEW THAT WE’LL HAVE A WORLD WHERE EVERYONE’S HAPPY AND EVERYONE’S SORT OF ACCOMMODATED? AND THAT MANY PARENTS OF DISABLED CHILDREN – ESPECIALLY PARENTS WITH CHILDREN MORE SEVERELY DISABLED THAN ADAM - JUST WISH THEIR CHILD WAS LIKE ANY OTHER CHILD BECAUSE THEIR CHILD WOULD FACE LESS CHALLENGES IN THE WORLD?
KARL-WOLFOND-W: How should I start this answer to that question?
Q. I DON’T KNOW.
KARL-WOLFOND-W: There’s so many things within your question, I’m trying to answer it. Help me, help me get started.
Q. ISN’T IT NATURAL FOR PARENTS TO WANT THEIR CHILDREN TO BE PART OF THE MAINSTREAM BECAUSE THEY’LL FACE FEWER CHALLENGES?
KARL-WOLFOND-W: I think the utopian idea was kind of a neat idea that I’d like to follow up. You know, is it a utopian view that all people accept autism or all people accommodate disability? Well could we say that of the black civil rights movement, you know, does everybody disagree – does everybody agree? Can we say that about anti-Semitism? I mean we still have anti-Semitism in our world. We don’t have universal agreement about anything. And I think that what’s really important here is that we begin to reflect on ourselves as a society and how we’ve typically come to view disability because we’re so far behind in how we view disability. And what does – and listen to what disabled are saying, listen to what autistic people are saying, listen to autistics non-verbal and verbal, and put them on policy committees with our Toronto Board of Education or wherever board of education. There are no autistics participating and if they are participating, there might be one, there might be two. We need to – it’s a difficult discussion. Not every autistic person even agrees among each other what is, what is the best route to take. But I think we have to start with an attitude change. I think that would definitely make everybody’s lives living with disability a lot more pleasant, a lot more – a lot easier really. I mean if there’s any challenge that makes me cringe for Adam it’s this idea that people are just going to judge him, based on the fact that he may flap his hands, you know. And he already recognizes that his difference is viewed in a certain way by others, and this is going to be his challenge. And as a parent, the best thing I see myself doing for him is equipping him for that challenge and making sure that he is a strong self advocate and exposing him to other self advocates. I think that’s really important gift that maybe I can give him right now.
Q. I’M GOING TO JUST ASK YOU A COUPLE OF MORE QUESTIONS ABOUT THIS AND THEN WE’LL MOVE ON. I WANT TO TALK FOR A MOMENT ABOUT THE LIVES OF THE PARENTS: SURELY IT’S MORE CHALLENGING TO RAISE AN AUTISTIC AND DISABLED CHILD THAN TO RAISE A TYPICAL CIHLD. SOME PARENTS MIGHT CONSIDER IT A HARDSHIP. SO ISN’T IT UNDERSTANDABLE THAT PARENTS WHO -FROM THEIR POINT OF VIEW ARE SUFFERING A HARDSHIP - WOULD WANT A CURE TO MAKE THEIR LIVES EASIER?
KARL-WOLFOND-W: Again, I think that’s systemic of how we view disability. If parents were more supported, if our children were better understood, you know, if we had educational systems that took our kids in and assisted us, we wouldn’t be feeling so lost in the desert. You know, I think about that question a lot, is it hard to raise Adam? You know, there’s definitely a lot of challenges that are universal, that you know some people will catastrophize disability, parents who do that, you know, I have the same challenges but I refuse to catastrophize my son. I just don’t think that that’s a positive way of moving forward. It’s not a positive way of providing the accommodations and acceptance that our kids need to be part of the world. I think if we’re part of the world, and we feel a little bit more like we belong and we can be, we can self-determine, that makes us feel better. And – you know.
Q. I APPRECIATE ALL THAT. BUT THE POINT I’M MAKING HERE IS THAT THERE ARE PARENTS OUT THERE LIVING DIFFICULT LIVES. MANY DON’T HAVE A LOT OF SUPPORT. THEY’RE RAISING CHILDREN WHO HAVE BEHAVIOURAL AND OTHER PROBLEMS AS A RESULT OF THE AUTISM. IT STRIKES ME THAT THOSE PARENTS MAY LONG FOR A CURE AND PUT THAT FORWARD AS A POLITICAL GOAL THAT SOCIETY SHOULD EMBRACE. I’M ASKING YOU TO DEAL WITH THAT ISSUE.
KARL-WOLFOND-W: You know, I don’t think we’re – I don’t think everybody’s going to agree about whether or not an autistic person should be cured. I don’t think that every autistic person agrees whether or not there should be a cure for autism, okay? There presently isn’t a cure for autism. We have many autistic people and disabled people on this planet. We have to find a way of moving forward. With the behavioural issues, I’m, you know, I know many people with more than one disabled person in the home and there are respite services that people can apply to. You know, these people are entitled to have help. Behavioural issues are often the result of not being able to access a child’s innermost thoughts because we’re always imposing what we expect on a disabled person, a normal response, a typical way of behaving, making sure they sit still, making sure that they give eye contact, whatever it may be. What often happens is aggression or complete shutdown, and we know this about autism and autistic people. So we have to work harder to understand autism and how to access and take ourselves out of it and our expectations out of it and ask more to the autistic person what’s going to enable you?
Q. HOW DO YOU DRAW THE LINE BETWEEN ACCEPTANCE OF ADAM OR ACCEPTING A CHILD WITH AUTISM, AND ACCEPTING THEIR BEHAVIOURS LIKE FLAPPING AND NOT MAKING EYE CONTACT…WHEN DO YOU FEEL THAT YOU’VE KIND OF CROSSED THE LINE BETWEEN ACCEPTING THEIR BEHAVIOURS AND SOCIALIZING THEM - NORMALIZE THEIR BEHAVIOURS TO WHAT SOCIETY EXPECTS? HOW DO YOU DEAL WITH THAT LINE IN THE SAND?
KARL-WOLFOND-W: In terms of socialization with Adam, I believe it’s a compromise. It’s a compromise on all people’s parts. It’s Adam and disabled people are intelligent people and you can say you know, people expect you to say hello when you walk in a room. And if a person can’t do that, you know, the other party has to understand that maybe that person can’t do that. Sometimes what I’ll do to Adam is "Can you say hello," or "Are you able to look at this person and say hello?" but I don’t force it. In terms of his socialization, we used to try the facilitated way of peer interaction. You know, giving him time, he’s been observant and we have to kind of – he goes to children now on his own. And it’s interesting. He’s more of an observer, very shy because he can’t talk very well. Learning how to say "Hey guys," and it might stop there and he might not know what to do with it. But given time and exposure and patience and teaching other children also to interact with him, and sometimes facilitate. So a little bit of everything. So I say it’s a delicate balance every single day, you know. And you have to kind of know as a parent when to move in and when to gently facilitate. When to explain that you know breaking the glass in the house is not something that I would prefer you to do. You know, maybe I’ll give you this to drop and look at rather than that because I don’t want you to do that. Maybe that’s not going to sink in for a little while and the temptation to play with the glasses, which is way too strong, I have to figure it out. As a parent, I just have to do it because it’s not about again normalization. It’s about teaching the best way I can and where I have difficulty trying to accommodate, trying to accommodate the issue.
Q. NOW THIS IS A VERY IMPORTANT POINT AND I WOULD LIKE YOU TO EXPLAIN IT. WHAT YOU’RE SAYING IS THAT AUTISM IS A DIFFERENCE AND A DISABILITY? AS OPPOSED TO A DIFFERENCE NOT A DISABILITY? WHAT ARE YOU ARE SAYING?
KARL-WOLFOND-W: The problem is with terminology. Autism, which strikes up images in one’s head or disability strikes up images in one’s head, which is, aren’t always right, they’re not always correct. But labels are much more complex than that. And neurodiversity was a term coined by a woman in the states from neurodiversity dot com named Kathleen Sidel. And she, because we embrace diversity theoretically in our culture, there was a different kind of diversity here and she coined it neurodiversity and she thought that that sounded like a very lovely term. Often that’s mis-characterized and politicized, which is very unfortunate. It’s really – what it means is people are different, everybody’s different. Some people are disabled, some people are autistic, some people are of different skin colour, some people are of different ethnicity, whatever. And it’s not denying the disability. Some people would like to like mask over that. Oh well, you’re just saying it’s a difference, it’s not a disability and therefore our kids aren’t going to get the services that they need. Absolutely not. We’re trying to get better services. We are trying to get recognition from our governments that our children are entitled to those family appointed aides. Our families are entitled to support. Society has an obligation to wrap its head around these differences and be more accepting and tolerant. Our schools have an obligation to include, let siblings stay together and adapt their curriculum. There’s a lot of systemic issues that we have to be dealing with and it’s not about taking away, it’s about adding and giving more choice. Autism is both a difference and a disability. If you deny the disability it’s like you’re still saying that disability is a terrible thing, you know. And what we’re trying to say is disability and autism is not a terrible thing. You know, if we can put different attitudes in place and different understandings and accommodations in place, the world can get a little bit easier, one step at a time, and that’s what we have to be striving for. Just let’s make the world a better place one step at a time.
Q. LET’S MOVE ON AND TALK ABOUT THE AUTISM ACCEPTANCE PROJECT. WHY DID YOU START IT? WHAT’S ITS PURPOSE?
KARL-WOLFOND-W: I started the Autism Acceptance Project following an exhibition I did of Jonathan Lerman’s work in 2005 here in Toronto. And I did that exhibition because – there were two things I was seeing, the way my son was being treated in a therapy session. Everybody pathologizing him and telling me he had to learn this and he had to learn it this way and he had to respond this way and he had to 80 (unclear) a day, which means requests, yadda, yadda. And then looking at autistic people and how, what they were producing with and without speech, what they were doing with their handicap. And I thought well this is a side that we need to see. And I have a tendency to think that art is a very human way of relating to one another. You know, it builds an ineffable bridge between people. And it was a really successful exhibition and in 2006, we decided to do a bigger event and incorporate the Autism Acceptance Project, and we got a lot of supporters for that. And we called that event the Joy of Autism, Redefining Ability and Quality of Life, which was intended to shuffle some minds about how we view autism and demythologize it and bring autistic artists to Toronto. One was Larry Bissonnette. He’s a nonverbal autistic individual who types. Jonathan Lerman and many people from the disability community came out from, from all different factions. And since then we’ve been doing our monthly newsletters, and just really informing people that this exists. You know, autistics writings exist, autistic art exists, autistic people exist and are talking for themselves and they are a part of a greater disability rights movement, just trying to be a part of the world and to contribute to it and to be regarded as anybody else would want to be regarded.
Q. I’D LIKE YOU AS PART OF THIS TO TALK ABOUT YOUR BLOG AND I’D LIKE YOU TO BEGIN BY SAYING I HAVE A BLOG AND MY BLOG IS CALLED AND – THE JOY OF AUTISM, AND WHY JOY? WHY THAT WORD?
KARL-WOLFOND-W: I have a blog called the Joy of Autism and when I started the blog, I was – I started it in 2005 and I was going all over the blogosphere and I saw kind of dour names for autism. And intuitively I thought that my son was a joy, not a catastrophe. He didn’t make me sad, even though I felt it challenging or I may have had sad moments through the journey. He was a joy and I have this determination within me that you know, everybody has a right to be viewed in a certain way, everybody has, has to find the joy in their daily existence in order to have a certain quality of life. And it’s that quality of life we’re after and this quite simply put, he’s my joy.
Q. NOW YOU ARE PART OF THE NEURODIVERSITY MOVEMENT. FOR THOSE WHO’VE NEVER HEARD OF THE NEURODIVERSITY MOVEMENT, CAN YOU GIVE ME AN OVERVIEW, EXPLAIN ITS POLITICAL AIMS AND OBJECTIVES.
KARL-WOLFOND-W: I have been thrown into the category of being part of the neurodiversity movement by default, and it again was all of these intuitive feelings that I had that we had this huge gap in society that wasn’t going to regard Adam fairly. And thusly, through my blog, I got part of this neurodiversity movement and basically it’s a number of individuals who – autistic and some are parents – who do feel that society has a job to do in understanding disability and autism, and that job isn’t being done by our major charities who don’t have autistic people at the forefront and speaking for themselves. And if that be the one important thing I have to say, I that autistic people need to be the ones speaking for themselves. And I sit here as an ally to autistic people or as a comrade, you know as a man would to a woman’s rights movement, for people to speak for themselves is on of the most important things that we can be doing right now. So if I’m part of a neurodiversity movement, that’s my stance. I believe for Adam’s sake and his future, I would want somebody to stand beside him and support him and say you do have a voice.
Q. AS YOU UNDERSTAND IT, WHAT IS AUTISM AS IT IS CURRENTLY DEFINED AND VIEWED BY CLINITIANS AND HEALTH- AND WHAT DO YOU ACCEPT AND WHAT DO YOU NOT ACCEPT ABOUT THE WAY IT IS DEFINED AND VIEWED?
KARL-WOLFOND-W: Well, autism is defined in the diagnostical statistical manual as thee areas of impairment. Communication, social and characterized by repetitive or obsessive movement. I don’t think any of those are incorrect.
Q. PSYCHOLOGISTS AND CLINITIANS ALSO CHARACTERIZE AUTISM AS A MENTAL "DISORDER". I’M WONDERING WHETHER YOU ACCEPT THIS? KARL-WOLFOND-W: So autism today is characterized by several impairments and it’s social impairment, social communicative impairment, impairments in communication and also characterized with repetitive or obsessive behavior. And I would say none of those are incorrect. But as people, autistic people do not like to see themselves as impaired because we’re looking at kind of the whole person. I don’t think inherently to say that somebody has a disability or a handicap is wrong, or has a difficulty in. But I’m finding that by reading more work from autistic individuals, they prefer to be referred to as atypicality. Because once you refer to people as disordered, ill, sick, impaired, it discounts a – the side of ability number one. It can be reduced to this idea that you’re less than me because I am not impaired. You are less worthy, you are less valuable, you are less able, right. So that’s where the sensitivities from different autistic people come from, you know. We have to just recognize again terminologies don’t characterize things completely and we have to explain why there’s difficulty and why people will say I am not disordered, you know.
Q. SO DO YOU THINK THEN THAT AUTISM SHOULD BE REMOVED FROM THE DIAGNOSTIC AND STATISTICAL MANUAL OF MENTAL DISORDERS IN THE SAME WAY AS HOMOSEXUALITY (ONCE INCLUDED AND REGARDED AS A "DISORDER") WAS SUBSEQUENTLY REMOVED? SO THAT, LIKE HOMOSEXUALITY, IT WOULD COME TO BE REGARDED AS A VARIATION OF NORMALITY?
KARL-WOLFOND-W: That’s a really great question. I mean we have to learn to understand the disability and accommodate the disability. Nobody’s denying that. So I hope that that’s really clear. Homosexuality was removed from the diagnostic and statistical manual. There’s – I don’t know if you’ve ever flipped through it, but if you flip through it you’re going to find something, something with yourself. You are going to have some kind of syndrome. I mean we’re in a, in an era where we’re just putting a label to just so many things. And eventually perhaps we’ll – I think autistic people have to be part of that dialogue more than even myself. And I’d like to be part of that dialogue as well to discuss how we want to characterize it. And should it be part of this manual? Would it be helpful to be part of a manual? Or is it again pathologizing a number of people and does that pathologizing help or take away from? And I think those are the bigger issues.
Q. IT WOULD BE BETTER IF YOU ANSWERED THESE QUESTIONS RATHER THAN ASKED THEM.
KARL-WOLFOND-W: I know that there are presently autistic individuals working to change the way autism is characterized within that manual. What I am saying is whenever we characterize something, is it helpful or is it over-pathologizing? In the case of homosexuality, you know, looking at it as a pathology and a deviance, it’s a problem. It’s a problem to look at individuals that way. If we’re going to begin to characterize what autism is, let’s have autistic people involved in that process, not non-autistic people who already have the notion that autistic people are abnormal, ill, deviant, etc.
Q. WHAT IS THE ONE THING THAT PEOPLE MOST MISUNDERSTAND ABOUT YOUR POSITION?
KARL-WOLFOND-W: I find that the biggest challenge when I talk about autism is overcoming just the grandiose view that because we hear from Autism Speaks a lot and the media presents it as autism is terrible, horrible. These kids are locked in their own world, and that kind of thing. That’s the biggest challenge that we’re trying overcome, you know, as a mother at the Autism Acceptance Project and my autistic friends. It’s, it’s a bias that colours one’s view of another and you know, I can walk into a bookstore with Adam, and I remember this very succinctly. He was going towards some books and I don’t know particularly what he was doing, but I remember that there were two women and they stared at him and they said he’s autistic. You know, and whatever flapping of the hands or whatever, it’s just like did you have to stare, did you have to whisper that? In fact who cares? And when I go into a school setting, Adam’s school for instance, and I said well you know, Adam is autistic and they yeah, so. Now I wouldn’t want that to over-generalize him either and think that well he’s just different and he’s gonna be – he’s gonna be like everybody else. No, it’s, it was – kind of want to live in a world where it’s just understood. And people make maybe more of an effort to just be with him on his terms sometimes because he has to work more than anybody to be on everybody else’s terms, right.
Q. YOU WERE PART OF THE CAMPAIGN AGAINST "RANSOM NOTES". FOR PEOPLE WHO DON’T KNOW ABOUT IT, TELL ME WHAT "RANSOM NOTES" WAS AND WHY YOU BECAME PART OF THE CAMPAIGN AGAINST IT.
KARL-WOLFOND-W: Ransom Notes campaign was a study by the New York Child Study Centre, a media campaign that used ‘we’re holding your child for ransom’ to describe ADHD, ADD and autism. And when they described autism we have your child, we’ve stolen your child. Again this image of the child is stolen. The real child is somewhere else, hidden behind the mask of autism and we’re gonna get, you know, we’re gonna seize that child back in whatever manner possible. And it was such a derogatory campaign that offended so many autistic people and my stomach turned when I saw that campaign. And the Autistic Self Advocacy Network in the States took the lead to write the letter against the ransom notes campaign in New York, to which we signed on. I said this is not an appropriate way to describe autistic individuals. It wouldn’t be an appropriate way to describe any child. And that’s the benchmark. Would you allow this for any child? Then why on earth would you allow it for an autistic child?
Q. TELL ME WHAT KINDS OF THINGS YOU DO AS PART OF THE AUTISM ACCEPTANCE PROJECT. GIVE ME AN OVERVIEW OF YOUR ACTIVITIES
KARL-WOLFOND-W: The Autism Acceptance Project right now has a thousand, at least subscribed members. We don’t know how many people come to our website. We’re trying to get that mechanism embedded. But we get a lot of responses, largely from people in the United States and it’s catching on in Canada, which I find very, very interesting. We keep the website up to date with events that are, we feel are more neutral and more respectful of autism and autistic people. We really try to let people know of conferences like you know, Autism, Working With It Not Against It. We do a monthly newsletter and we try to educate our readers about what disability rights means. You know, you say rights and people’s kind of – people’s backs get up against a wall. So there needs to be an educational process about you know, what does this really mean. And we put artwork on from autistic individuals. We’re really looking to build that mechanism. We’re looking at putting more artwork on and more performance art type videos that challenge the status quo thinking about autism and disability. This is sort of a wish of ours to do. We’re doing it slowly right now. We have essays on the site that are written by autistic people. We do book reviews. We have a forum for parents on the site and we keep people apprised of all the events again that are respectful to autistic individuals and\or that are helpful to parents. Sometimes we do support groups for parents that are led by autistic individuals. We have a speakers bureau of autistic individuals and we get requests from schools for them to come out and speak. So more and more, you know, I saw this gap where autistic people didn’t have a voice. I want my son to have a voice and I’d like to work together, non-autistic and autistic people working together and making sure that autistic people are at the forefront of the dialogue. And I wanted to say that we are affiliated with the Autistic Self Advocacy Network. We supported Au-Treat this year so that we provide financial assistance to autistic individuals who cannot otherwise afford to go. We are also members of the group Posautive, which is created by Dinah Murray in the U.K. And she has created a channel of positive autism videos created by parents and autistic people. So we’ve really built a community.
Q. SOME PEOPLE DRAW LINES WITHIN LINES, LINES WITHIN DISABILITY: THERE ARE PEOPLE OUT THERE WHO BASICALLY SAY "SURE, THERE ARE SOME AUTISTIC INDIVIDUALS WHO HAVE TALENTS AS WELL AS DEFICITS BUT MY AUTISTIC CHILD IS SEVERELY DISABLED, NON-VERBAL, DOES NOT HAVE ANY OBVIOUS ARTISTIC OR ANY OTHER SPECIAL TALENTS, AND IS NOT MENTALLY GIFTED, THEREFORE MY AUTISTIC CHILD NEEDS TO BE CURED EVEN IF YOURS DOESN’T"…
KARL-WOLFOND-W: What’s my take on that?
Q. WHAT’S YOUR TAKE ON THAT?
KARL-WOLFOND-W: I’m not going to tell another parent what to think about their child, okay. I’m going to talk about my child and the people that I know and my child could be considered moderate or severely affected. I’ve chosen not to look at it that way. I’ve chosen to open my heart and open my mind and to listen to autistic individuals and to really open myself. This is my number one priority, to always question myself about what my expectations are and then turn it inside out, so that I can better accommodate and, and enable Adam. And it’s working. It’s working with him. You know, it’s working with the typing, it’s working with – you know, there’s different tactics one can take to teach a child. There’s not one, there’s many different methods. And I don’t say to any parent, ascribe to one method that’s going to cure their child. I think that that, that’s a false hope and it’s a false promise. Like you have to be very open and it does take more effort right now because we don’t live in a society that, that’s supportive of that yet. We just don’t. So we have to do the work as parents. And yes, it can be challenging to have a more severely affected child. But I also know parents who live very successfully with more severely affected children. So we have choices to make and I really, I really believe that of just life in general, that we have choices to make. We can look at dying of cancer as something horrible and tragic or we can look at it as I’ve lived a good life and this is the way life is going to go and what’s going to be the best quality of life that I can make for myself right now. It’s, it’s a manner of looking at life and a manner of how we’re going to approach it, and it’s not easy for everybody.
Q. SO TELL ME ABOUT "FACILITATED COMMUNICATION" AND ABOUT DOING THIS WITH ADAM THESE DAYS. WALK ME THROUGH THIS DEVICE YOU ARE USING. TELL ME WHAT IT’S CALLED. PAINT ME A VERBAL PICTURE OF HOW IT WORKS.
KARL-WOLFOND-W: Sure. Well Adam was always ah always gravitated towards the computer. And I noticed that responding on a computer to questions was a lot easier for him than looking at my face or anybody else’s face and responding. Similarly, Adam’s ability to read I recognized was greater than his ability to read aloud. So I stated looking at other people who had been facilitated, who had become independent, people who had learned outside of facilitated communication, how they learned to type. And I’ve sort of amalgamated my own approach and right now I did find that touching his arm – in fact if I don’t touch his arm he reaches for my arm and neutralizing his hand. So I’m not guiding his hand anywhere along that keyboard. To me that would be dishonest. And he really – it’s a pressure. I’m actually holding him away from the keyboard so – and giving him the pressure he needs. We use an "alpha smart" … It’s an inexpensive little device that’s very lightweight with a little screen on it so we can have some conversations. I have a couple in the house. They’re about $300. When he becomes a more sophisticated and independent communicator I will invest in a much more expensive device called a "lightwriter". They’re many more – they have sound outputs. Sometimes autistic people feel that ah by having the device speak for them has actually helped them to form their own sentences later on. Not always the case. It’s not a universal design here.
Q. WHAT ARE YOUR HOPES AND DREAMS FOR ADAM?
KARL-WOLFOND-W: That’s a great question, my hopes and reams for Adam. Because you know, if you would have gotten me back in the early year I would have been sad and scared beyond imagination. But I think what’s important is when I became – decided to become empowered for him and decided that, you know what, inclusion is a really important goal and that’s what the Autism Acceptance Project is going to do. And having autistic people speak is a really important goal so he can speak for himself now. And I thank all of the autistic adults who are doing that right now because they’re paving the way for him and I have a lot of gratitude. I see college courses being designed for disabled individuals who are preparing for university and college. I see different accommodations being allowed. Aides going with an autistic person to university. You see sometimes whiteboards and computers in the classroom. These things are becoming more common. People are seeing them more. So my hope is that he is going to be a self-advocate and he’s going to go to university and he’s going to be able to choose what he wants to study and he’s going to choose his profession where he wants to work and how he wants to work. And I’ll be there as long as I can to help him along
Q. IF SOMEBODY BROUGHT YOU A MAGIC WAND TODAY AND SAID, "I CAN MAKE ADAM JUST LIKE AN AVERAGE NORMAL CHILD", WOULD YOU TAKE THAT? WOULD YOU "CURE" ADAM IF YOU COULD?
KARL-WOLFOND-W: (chuckle) You know, I find that such an unfair question because it’s just not reality. Right? So like if if if, if I could be Farrah Fawcett tomorrow. It’s just not my reality and I feel very blessed that Adam has brought unique perspectives into my life. That he is the kid that he is. He’s just a really great child. And ah – I don’t know, my life is just – it sounds really corny but my life is more enriched because of him.
Q. YOU HAVE MADE A NUMBER OF VIDEOS THAT YOU POSTED ON YOUR WEBSITE AND ON YOUTUBE. CAN YOU TELL ME ABOUT SOME OF THEM?
I made one called "Autism and the Media". There were a number of things happening concurrently. Hillary Clinton had been listening to Autism Speaks and listened to their message "that we have to do anything and everything to cure anything along the autism spectrum". Well, I mean we have Nobel Peace Prize winners who are autistic! We have a whole spectrum of humanity that’s autistic. You know, to say that is a pretty grandiose seeping over-generalized statement that can be very dangerous! Also Jenny McCarthy’s book came out and she was recommending a number of biomedical treatments to cure and recover autism. And Autism Canada came out with a CBC interview that you could recover autism successfully. Well the whole concept of recovery is so relative and so controversial. So I decided to illustrate what was being shown in the media at that time with these examples. And then Larry King putting on Jenny McCarthy over again or Dr. Gerry … now who basically said that autism stills the souls of our children and sucks the marrow out of the family, I mean these are really terrible images that I won’t accept for my son or any autistic person or any person. I did a video actually called "What Kind of World Do We Want to Live In?" And do we want to live in a world where we have this image of perfection where really none of us are normal. Everybody has their own thing, their own idiosyncrasy, their own challenge. Do we want to live in a world like that where we have some other – grass is greener on the other side idea. Or do we want to live in a world that we can celebrate existence. And the contributions from autistic people have been enormous and that was also part of the reason of doing the Joy of Autism event, titling the blog that way, was to recognize that there are enormous contributions from this community in science, in writing, in software design, you know, in engineering. Vernon Smith is a Nobel Peace Prize Winner Some people have claimed that Einstein was autistic, that Newton as autistic, that Ludwig Lichtenstein, the philosopher of language, was autistic. We have a number of artists, you know ah –Temple Granen is autistic.
Q. SO YOU ARE SAYING THAT WHEN A PERSON HAS AUTISM THE VERY CHARACTERISTICS THAT MAKE THEM AUTISTIC ALSO GIVE THEM DIFFERENT WAYs OF LOOKING AT THE WORLD WHICH HAVE ENRICHED THE WORLD.
KARL-WOLFOND-W: I see that in Adam already, you know. When I started my blog, I had a byline that’s changed since then. And I said, a mother who’s trying to see the world through her son’s transparent coloured blocks. And these were blocks – they’re little water blocks of a colour. And he would put them up to the window and look at the world through is transparent coloured blocks. And this is really, really important to me. Like what could he be seeing? And I don’t want to say it’s a mystery, it’s a fascination or whatever. It was what was he seeing, what was he thinking? Now that he’s starting to communicate he thinks very metaphorically, you know. And by virtue of the way that he sees the world, I’ve been able to learn a lot about myself. And I think we all have a lot to learn. The question is: what does it mean to be human? That’s the fundamental question. And I think that Adam has answered that question for me a little bit.
Q. HOW DO YOU FEEL WHEN YOU HEAR PARENTS SAY THINGS LIKE "I WISH MY CHILD WEREN’T AUTISTIC"?
KARL-WOLFOND-W: When a parent writes or wishes that their child is not autistic, it’s a really hard question for me to answer. Because by no means do I ever want to put a parent off, do I ever want to undermine a parent’s feelings about a situation. That’s what makes it really difficult to respond. I really feel for that parent. I really do. I’d love to find a way maybe to assist that parent to accepting their child. And then there’s another side of me that feels offended. Because when you say you wish your child wasn’t autistic then that means my child isn’t good enough either, right? So there’s that – also that really honest response and feeling that I have. And there’s also – the idea that if your child was cured you would have a different child has always come up and that’s a great possibility. I think that’s been a universal question in some of the literature that’s been written about autism, when people contemplate a cure, you know. Would you end up with the same person that you started with, you know? Would I want to help Adam’s anxiety? Is that a medical issue? Obviously yeah. I think he would like that too if I could something maybe to assist him to talk better because he says he wants to talk. Yes, you know, but does it constitute the entire cure? I’m not sure. I’m really not sure. I think again when I talk about a cure, I think that that reduces the argument to such a black and white issue that it becomes a dangerous one. Meaning you’re autistic, you’re less worthy, you’re less valuable. You’re not good enough the way you are. You need to be cured or you need to be prevented from being born and you have to stay away from that. That’s a really dangerous assumption to make and that’s where the cure arguments tend to go.
Q. THERE ARE PEOPLE OUT THERE WHO WILL WONDER HOW ANY PARENT OF ANY DISABLED CHILD – NO MATTER WHAT THE PARTICULAR DISABILITY - WOULD NOT JUMP AT THE OPPORTUNITY TO HAVE THAT CHILD CURED OR FIXED, WHATEVER WORD YOU WANT TO USE. THEY WILL THINK IT IS COMPLETELY UNNATURAL. HOW DO YOU RESPOND TO THAT?
KARL-WOLFOND-W: I’ve been asked that question quite a lot, you know. We have parents of adult autistic children who get infuriated with that question. It’s, it’s – ah – it’s not about being responsible. Being responsible is about providing every opportunity for your child. Again you’re reducing the argument to - it’s a disability, it’s fundamentally wrong. You have to like save the life of this child. It’s akin to cancer. And it’s not. It’s just not the same as cancer. It’s not a life threatening disability no matter – or illness I should say. No matter how many people want to compare it to cancer, it’s just not like cancer at all. It’s a really difficult, almost for me offensive question. I was ambushed on radio once with that constant question: how could you not want to cure your autistic child? What kind of a parent are you? You know, I think I’m a really – I have a very healthy relationship with my child. He goes to school, he learns. We help him with his anxiety. I mean I can’t imagine much more investment that I can do for him. And ah I think to appreciate your child for what they are in my view is the best parenting, you know. You can’t always force your child to be something that they’re not.