The “Continuum,” The “Spectrum,” and Another Assumption That Needs Debunking

Filed Under (Autism and Employment, Autism and Intelligence, Autism and Learning, Communication, Sensory Differences) by Estee on 30-08-2010

I really like what Temple Grandin is doing in many ways. I like that she supports different minds and describes very simply and concretely what autistic people need and might be able to do as work.

There is one thing I’d like to point out to Ms. Grandin, if I may. It’s the assumption about the autism spectrum or “continuum” as she puts it. It is tricky because it has been an easy way to describe and try to understand autism. Yet like most things easy, they are not fully descriptive.

It is the point at which she, perhaps inadvertently in order to simplify the description, lowers the intelligence level of non verbal autistic people to the bottom of the “spectrum,” to the “verbal” autistics who are “brilliant.” For all the non verbal or partially verbal autistic people out there, many of who comment here and/or write their own blogs and even do their own presentations, I’d like to add that non verbal people can also be of “normal,” “bright,” or of “gifted” intelligence. Of course verbal and non verbal people can also be more cognitively challenged. There is no way we can use the “continuum,” really, to effectively describe autism and intelligence and I think we need to talk about this more.

Temple Grandin talks a lot about thinking in pictures and she can verbalize this well. For many autistic folks who cannot, like my son Adam among others, I can say that verbal ability does not equal intelligence. I hope that Temple Grandin can speak a little bit more on that in the future so as not to cast another stereotype that she perhaps does not intentionally mean to cast.

In this blog, I speak a lot about the visual — visual data and the potential for many autistic people to translate so much data into the visual so that we can better understand it. There could be many opportunities for our children if we look at this seriously and nuture the skills. As for her segment on visual perception, I once posted a drawing by Adam, who has motor planning issues, but clearly had an advanced perspective, demonstrated in some of his artwork, over his same-aged peers. I have always noted and recognized Adam’s visual abilities. It’s still incredibly difficult to find teachers who recognize and are able to nuture this ability. It’s incredibly frustrating, in fact.

I do thank Temple Grandin for being out there to discuss the need for mentors and the contributions our children can make to society, if given the chance and opportunities.

In keeping with this post, Tyler Cowen, author of Create Your Own Ecomony also writes another piece on autism, ability and autism diversity.

Watch her now on TED:

I Have A Few Dreams

Filed Under (Joy) by Estee on 23-08-2010

Watching me these days and I think you will find me deep in thought. I’m dreaming, thinking. Not the kind of dreaming where I’m floating (well, okay, sometimes), but the kind that I think is important for all parents of autistic children. Maybe this comes at the right time — right before Adam begins his new school.

Usually when we speak of the future, there is fear in our voices. We believe that there will be fewer services, aides and opportunities once our kids turn twenty-one. This is the case for many people. While we must work on the programs and services that autistic people may need throughout their lifetimes, I also want to think about all that is possible. I believe that the more we do this, the more likely we will achieve the kinds of supports and opportunities for our kids that we fear we will lose.

I dream about riding a bike with Adam. Kristina Chew’s stories about Charlie and her husband James has motivated me to teach Adam how to cycle better (he has a tendency to always be looking where he has been rather than where he is going…a rather ironic notion).

I think about taking Adam around the world, and if not entirely around it or entirely with me, I’d like to think he will see the world in any event. I think of Horseboy and recently the travels of Larry Bissonnette and Tracy Thresh as part of the film Wretches and Jabberers (great title). I think that if we’ve come this far, we can likely go farther both physically as well as mentally. I took Adam to Mexico last year, and lugged him deep down into Mayan caves, and there will be more. Sure, we’ll have to endure some discomfort along the way, some rude comments, leering eyes and possibly some meltdowns with delayed travel and other frustrations, but I consider when the time is right, it will be worth the try. I mean, Adam is already an explorer. He will find every nook, every cranny, every inviting pathway that I, in my perpetual goal-state-of-mind, will miss far too often. Even with the liklihood of some discomfort, I can’t help but wonder if moving around and seeing new things may be the best education of his life, and quite likely, of mine.

I dream about Adam in higher education — be in college or university, exploring what he loves and being assisted if he needs it. So many people delay their entrance also into higher education. So the timing just doesn’t matter. There are many stories of autistic adults in universities right now and thanks to them, it keeps my dream alive.

I dream of Adam having his friends and people he loves around him. He likes people. Although we are addicted to social networking (you can find me everyday twittering and FB’ing and blogging — I’m torn about the whole matter), I had written for the TAAP exhibition in 2007 how technology really assisted the social connections between autistic individuals. Adam also uses the computer (although not yet for that) and he has a friend he goes to school with. I see no reason, as he is helped along the way, why the wouldn’t have people he loves to have around him. The many autistic friends I’ve made along the my journey of learning how to support my autistic child has helped me keep this dream alive.

I was also thinking of the dreams I had for Adam when he was newly diagnosed and a toddler — how I had hoped he could go to a good school, become more independent and begin to communicate. Although he is still challenged on the latter, he communicates far better than he used to. The autistic teenagers and adults who use Assisted and Augmentative Communication have helped keep this dream alive.

I dream of Adam cooking his own food because he seems to enjoy helping me out in the kitchen. Although this is not always possible for all autistic people, for others, it is. Susan Senator and her family write a lot about cooking (or is it that I’m especially alert to Susan’s food postings?). She and her son Nat have helped me keep this dream alive.

I dream of Adam continuously enjoying self-expression. He has shown a particular fondness towards art. Those of you who know my passion for this subject will know that I have many autistic artists to thank and who have kept this dream for Adam’s happiness in self-expression, alive. It would be difficult for me to list everyone here.

I realize that since before I started writing The Joy of Autism blog, I have so many people to be thankful for in helping keeping dreams alive. There are many stories on the web now that weren’t when I began writing in 2005. The daily successes are worth reading every day.

Although Adam is still quite different, he has accomplished so much. As his parent, my dreams for him as well as myself are thriving. I think this is what we most fear as new parents — that the weight of unknown responsibilities will take these dreams and hopes away — not only for our children, but for ourselves. While I have not written the entire list of my dreams here today, I see that dreams, as we adjust our views and expectations of our autistic children, really do come true.

As for Adam, I’m quite certain he’ll have many of his own dreams to share one day.

What are yours?

——–
There are so many autistic people and parents who have helped keep many of my dreams alive that I have not listed here today. I’ve been writing about many of them for a few years now.

My Endearing Little Cat

Filed Under (Adam, autism) by Estee on 20-08-2010

Sometimes a simple photo inspires me. This one was taken over a year ago. The gal Adam is holding hands with is the daughter of my most beloved girlfriend in the world. Life got a little hectic for everyone and Adam didn’t get to see T (the girl) too often this past year.

T was here with her mom about a week ago and in Adam’s way, he swam at his own pace, doing his own thing. The water calls him to dive under, I imagine because the feeling around him makes him feel secure. For Adam, tight spaces and squishes are an essential part of living well. T was diving into the pool with such enthusiasm, asking her mom to “look” as she demonstrated the various poses while jumping and then plunging into the water.

In the picture above, we had spent a weekend together in the same hotel room. Adam got cozy with T, although in Adam’s way it always takes some time. Last week, Adam watched T closely, sometimes doing his thing, gazing out of the sides of his eyes, sometimes watching her straight on. Unlike other children, however, Adam cannot yet consistently initiate play or “get in there” at the same pace. I know that if T were around a whole lot more, he would be following her around, or at least he might go along with what she wanted to do.

It’s just that way with my little autie. He is like the proverbial cat circling and scoping. Eventually he’ll just snuggle in your lap.

Wretches and Jabberers

Filed Under (Acceptance, Activism, Advocacy, Autism and Intelligence, Communication, Inclusion, Travel) by Estee on 19-08-2010

 

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

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

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

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

That’s for certain.

The Eight Year Old

Filed Under (Acceptance, autism, Development, Parenting, Safety) by Estee on 18-08-2010

Lately I’ve used this term: “the normal path of autistic development.”  I use it because I do believe that the path of autistic development seems to take on familiar patterns like later acquisition of language, motor planning skills and social skills, to name some. So, although we recognize that while autistic people are similar they are, like all people, also very unique. For the purposes of this post, however, let’s just say, it’s often more elegant to compare apples to apples.

Every once in a while, however, I go check out the oranges. Perhaps it’s because I’m a first-time mother to an eight-year-old boy. I’m quite familiar with that path of autistic development as I find stories in common with other autistic individuals and the parents of them. Yet as a parent of a young boy, I’m curious about the typical eight year old boys. Aside from the speech, the social skills, the sports (among other things),  I notice that Adam is becoming a, for lack of a better word, typical eight-year-old.

Case in point:

He is curious.

I can’t keep up with him in the house.

He wants to be independent and doesn’t want my help.

If I tell him to stop doing something, he gets angry with me.

He climbs and moves and climbs.

I tell him not to.

He does it anyway, even though I know he understands.

He thinks disgusting things are funny.

I don’t like it.

He thinks that’s funny.

I feel out of breath trying to keep up with him.

He thinks that’s funny.

He seeks out attention.

He likes attention.

I find myself sounding like a nagging mother.

I don’t find that at all funny.

He knows things.

He figures people out.

He can manipulate people.

He is becoming more aware.

He is becoming self aware.

That makes me short of breath….my list goes on…..

Are we getting the point? Adam is a boy full of beans. He is growing and maturing and often gets frustrated because he wants to be so independent. That sometimes gets me frustrated as well because I wonder why I feel so ill-prepared.

After climbing upside down into his trundle bed and tearing off the guard rail (I guess he means to say he no longer needs it), I decided to pull out the old Alphasmart Neo keyboard that is so handy to carry around because it is so light weight. Even though we are practising on the Vanguard, a much heavier AAC device, I find the Alphasmart still useful in a pinch. Adam has been practising writing stories on his computer independently. We write them out together, then transpose them, if you will, onto the computer to improve his typing skills. I was quite pleased today to see how his spontaneous communication via typing has also improved. It helped us calm down before bed time this evening and he told me about camp, his counsellors and his day. His body calmed and he was not just the active eight-year-old, but a more empowered one this evening.

Adam wants what he wants when he wants it, sometimes. For the most part, he listens, puts away his things, is now more inclined to get his own things. Then I wonder why I am so out of breath. I mean, it’s what we’ve been working towards for so long. He can put on his own shoes, is beginning to dress himself (okay not perfectly, but I don’t care), and wants to give himself his own shower (I am fearful of the hot water). For certain, I must worry about safety and must always try to stay a step ahead of him. It was this boyish progress that prompted me to check out the oranges. I realized that really, all kids are the same. Just because some can or cannot do certain things, it doesn’t take away the will or desire to do them. Just because Adam can’t talk fluently or initiate play with other kids regularly, does not make him any less of an eight-year-old.

I’ve known that, but to live through our autistic kids’ development just be different for us parents, after all. For so long, we worry about what our kids will not do, and we spend inordinate amounts of time and resources trying to teach them how to do things. There is nothing wrong with this!! Yet when it happens  we sometimes speak about our kids as a series of behaviours instead of noticing that they are growing and maturing as they should — as they should differently, autistically and at the same time, very similarly to any other same-aged child.

I must consider to stop running out of breath and learn to just breathe.

Blog Talk Radio Today

Filed Under (Acceptance) by Estee on 17-08-2010

Tune in 10:00 a.m. Central Time as I will be speaking on The Autism Acceptance Project on Blogtalk Radio.
Also posted on their website is a video I made several years ago regarding autism represented in the media:

More on BlogHer

Filed Under (Acceptance) by Estee on 16-08-2010

Thanks to Shannon who wrote more on the BlogHer conference Autism Panel here, which I also wrote about in Isolated No More. I particularly liked this quote from Amalah:

“There is joy and happiness and laughter in our homes, just like in yours. We have dreams and so does he. We go out for pizza and play on playgrounds and drag our children on boring errands for back-to-school clothes. We bribe and scold and lose our temper and make mistakes and start over the next morning. My son is “lucky” because his father buys him eleventy hundred Star Wars toys every month, and because sometimes I make a pan of chocolate brownies before dinner, and because we live in an area with well-funded, progressive early intervention and special needs programs … not because the stars aligned and blessed him with two perfect, sainted parents who are uniquely suited to drive him to occupational therapy.”

Love that.

I also really enjoyed reading about the IPad lately and Shannon has written a great article about it here with some videos. I’ll definitely be checking it out for Adam.

It’s 3:00 a.m.

Filed Under (autism, Safety, Sleep) by Estee on 16-08-2010

I am writing this at 3:00 a.m. I left Adam’s room at approximately ten o’clock hoping he would go go sleep. I know I did, but I suddenly woke up at two. I was hoping to fall back to sleep but decided to heed some sage advice and not fight it. I’ve heard that if you cannot go back to sleep, just get up and do something else. The sleep will come.

Sleep is a huge issue for many of us. I remember three years of complete sleep deprivation after Adam was born: three hours of soothing and rocking him alone in a dark room, creeping out of his room on all fours because the floors were creaky and would wake him, only to have him wake up every hour and a half anyway. I remember feeling tired, frustrated and this certainly had an effect on the way I interacted with Adam in the early years, and I didn’t even get a reprieve by way of a naptime. I tried to “Feberize” him to no avail.  I was always flabbergasted that Adam could keep on going on such little sleep. Later on, we discovered Melatonin  which is the only thing that usually helps him fall asleep when he is particularly wired, except for these monthly anomolies where it has zero effect, and I have not discovered the reason specific to Adam.

As I began to quietly descend the stairs in what is typically called the dark night of the soul, coined by F. Scott Fitzgerald,  I hear Adam mumbling softly to himself — quite a change from the infant and toddler days when he would cry.  In fact, my office is directly underneath his bedroom and I can hear him moving about contentedly right now.

I write this because it’s another feat in our coexistence as two different kinds of people. It used to be that Adam would make much more noise and I would spend hours trying to settle him. Perhpas because of experience, knowing that autistic cicadian rhythms have been reported to be different in autistic individuals, I have decided on an alternate strategy: not to fight it. I am teaching Adam how to stay alone in his room quietly and do other things. It still requires some of my effort, my reminding (and perhaps some dark circles under my eyes in the morning), but I know it will be worth it as he is growing and maturing.  As he grows older, he will be able to use this time to read, study, work on the computer, but right now I would hesitate putting him on the computer because he will gear him up rather than wind him down.

This happens to Adam about once a month, I’ve recorded. He seems to wake at 2:00 a.m. and he goes to camp or school and has, usually a fabulous day while I am otherwise dreary-eyed. Still, I am discovering that I too am developing a remarkable energy that I didn’t think I had before. It’s amazing how things don’t feel as difficult if we try to work with the circumstances. In fact, I planned on reading and writing a bit before I realized that Adam was awake.  I’ve ensured that the house is safe in the event I do doze off and he decides to roam, and this might be in large part why I can relax.  So far, Adam stays in his room.

I suppose the only thing is my sensitivity to Adam. I didn’t think I  heard him at two, although I must have. It would be nice to know thatI can sleep through the night while he does what he has to do….safely. We’re getting there.

I sit here writing sort of amazed at how far I’ve come in this. Another milestone, perhaps, not for Adam, the autistic child, but for Estee, the autism mom. It’s past three a.m. now. The dark night will quickly turn to dawn.

Repost from 2007: A Review of Autreat

Filed Under (Acceptance, Advocacy, Organizations/Events) by Estee on 13-08-2010

Last weekend, I attended my first conference in over two years. It was the Blogher Conference in New York City where I met up with fellow autism-mom bloggers. I remarked on how I noticed the positive attitudes towards autism among parents that wasn’t so prominent a few years ago.

In response, I got a comment stating that I should attend Autreat. Well, I had in 2007. Back in my earlier days, because the climate among parent communities was so negative, I sought out autistic individuals who shaped my view of autism and assisted Adam and I on our journey. I thought instead of having people sort through 800 pages of archived Joy of Autism blog (on the right margin), I’d dig this up. It’s a copy and paste job, so  I apologize in advance if the formatting appears off. No matter how I tried to fix it, it just kept reverting into a mess.

I called this post:

Are We Listening?


The audience waved their hands in the air – the deaf sign for waving. There were others who

rocked back and forth, some other adults who gracefully flapped their hands. Drake sat in

the front and squealed in acknowledgment when the speaker said, “just because you

don’t cry, doesn’t mean you are not sad,” in acknowledgment to how many autistics take time to

process their emotions. The squeal was a “yes yes!” to the speaker’s comments, and in any other

setting, this highly intelligent, non verbal autistic eleven-year-old may have been

asked to leave, or others might have stared, thinking that he didn’t

think of anything at all. Yet Drake kept doing this. He sat longer

than any other eleven-year-old I’ve ever met and made his noises

in acknowledgment of the important points.

“I am fortified by being here,” he wrote on his Lightwriter, a keyboard with a small

screen that speaks for him after he types his sentence.

I sat in the room and wished Adam was with me, his soft fiveyear-

old hair brushing my jaw, snuggling up to me as he always

does, and then taking breaks to jump up and down. Yet, I felt

comforted in knowing that he would be there next year, and the

year after that. I felt comforted that all of these people are him

years from now, and how privileged I felt that they were paving

the way, for it is a tough way, like swimming up a rapid flowing

stream.

It is rare to sit in a room with so many other autistic people, some

walking back and forth in the lunch room humming to themselves

in a heightened perhaps even ecstatic state, where I can only

imagine in other less accepting settings, would be frowned upon.

When I came to squeeze into the small space where this young

man hummed to deposit my lunch tray, he politely moved away to

make room for me, extremely aware despite the fact that some people

might believe otherwise.

When I saw him next time in the leisure area, he was asking others

to play a board game with him. Other autistic kids were hanging

out together, and sprawled themselves out on couches in front of

the TV, not unlike other teenagers. Around the grounds, people

wore badges that indicated if they wanted to talk, if they would

only talk to people they knew, or if they did not wish to talk at all.

There were many times I wanted to flip my own badge that

indicated the latter – as I am a person who likes to absorb and

observe, yet have been taught to socialize and be diplomatic and

suffer from a compulsion to keep that impression going. Although

it’s a skill I’ve acquired, I still find it exhausting. I wished that

those badges existed at the many functions I have attended,

where most people pretend to be something that they’re not, or

interested in things that others say that they actually have no

interest in at all. I consider all the wasted time I’ve had to spend

doing “small talk.” and all the time I spend in explaining life as we

know it to people who don’t have the time to understand.

The heat was oppressive this time of year. Yet, we were shaded by

trees. My hair unkempt and my skin moist from the humidity, I

unraveled. I could do what I needed to, to think. We were free to

lie down during lectures, or roll up and be comfortable on the

otherwise uncomfortable frayed wool couches — remnants from

the 1970’s. No lights were on in the summer heat, the hardworking

garbled hum of old air conditioners tilting precariously in

the windows of the lecture room.

The atmosphere was as honest as the discussions were. We tried

to figure out how to manage all the issues confronting autistic

people today, how to give another message to parents that there

are more options than they are aware of – because they don’t hear

it when all they hear about is ABA (in Canada specifically). The

atmosphere was welcoming, where fear and confrontation were

strangely absent. Strange because it is a sad reality of autism

politics these days – where some non autistic people never get

exposed to disabled people to hear the real views and issues. It

was strange as it was relieving. This was autism, and it was

comfortable. I didn’t have to be appropriate, I could say when I

had to leave without a guilty fuss. No one will judge me here. And

no one will be judged.

It’s called Autreat. It’s a place I’ve never felt or experienced

before, and I will want Adam to come again so he too can be

fortified. Adam’s fortification is what’s tantamount here, as I try to

raise him so that he knows who he is with autism, amidst a world

that doesn’t understand it or explains it inappropriately. It is

important that he understand himself as not a defect, but as a

person. It is why we as parents cannot accept misery rhetoric,

because no matter what level of “functioning” (that term means

nothing as it has no bearing on either intelligence or awareness), no

autistic child should have to grow up in an inhospitable

environment that threatens their self-worth. Inhospitable and

unsafe environments are those in which we seek to normalize and

reward normal responses to tasks where the autistic response is

never acknowledged, rewarded or accepted, thus valued. By never

rewarding an autistic person for being autistic, we threaten their

self-esteem and identity. Most will grow up being confused

because every well-intentioned therapist was so “nice” to them.

We have to train our therapists and clinicians to understand

autism – because most of them currently do not. They do not yet

understand how an autistic person learns. They turn to

operationalized methods that all seek at this time to make the child

not autistic, without valuing the autism. DRI and RDI are also

designed to “create a mind,” or have a child “play normally” to

which the autistic audience gasped in disgust. What are those

“gurus” implying? That the autistic people who could sit and listen,

and contribute, either verbally or in writing need to re-create their

minds in a fashion that suits the rest of the so-called “normal”

population?

I surmised that many parents are and are reluctant to give up

ABA becasue they may not understand that there ARE so many

options and so many opportunities to educate and for a great

quality of life. The latter is what hopefully unites us. What

disunites us is the definition of what that quality of life entails – a

life with or without autism. I seek the former because I have seen

that we can live a good life, thank you very much.

Quality of life is not determined by whether or not you drive a car,

but rather, what you make of your life, and your attitude. Autistic

people are capable, and how can we express to parents who only

see — particularly those whose children who are more profoundly

affected by the disabling aspects of autism – sensory issues,

anxiety, no spoken communication – that their children are there

and aware.

How can we express that the most important thing – our

children’s right – is to be who they are, but to provide AC

(augmentative communication) in the absence of speech, instead of

trying to force them to talk when they cannot.

How can we express that it is the teachers and clinicians who must

learn how an autistic person learns, and not expect a typical

response that can render an autistic person a robot. (All an autistic

person ends up learning is to respond the way the instructor wants

so that they can get the hell out of there).

How can we express the dangers of therapies that try to teach in a

way that is not natural – for our benefit so WE can feel satisfied

that the child has responded – that the child may in the future as a

result of such approaches, not understand who they are?

This is the most important aspect. Know who you are. Accept

your autistic child for who they are because this will allow

them to know themselves. Pave the way for acceptance and yes,

teach. But learn first. Learn how an autistic person learns and keep

trying to adapt until you find the method that clicks with your

child. That will constantly change.

Be a parent, not a therapist. Do not treat your child as a project,

but rather, treat them and raise them as a child. Model actions so

that a child can learn. Do not expect typical answers to “what is

this?” and other typical questions. Find out ways to pull out what

the autistic child does know. Do they know and answer better on

the computer? Then use that. Accept all forms of communication,

for they are valid and real. We are all obligated as parents to find

the AC that works best for our children. That is their right to have

over and above all those other therapies and monies wasted on

“behavioural therapies.”

Allow breaks for autistic children to re-focus. Truly seek to

understand their sensory needs. Do not offer artificial

reinforcements, like “good talking!.” They are fake and the child

will know it. Accept echolalia as sometimes the only language a

child can retrieve, particularly in moments when they are

overwhelmed, and then listen to what their body language and

faces are telling you.

Most parents want the best their our children. The difference is in

how we regard autism – a medical disease, which it is not, or a

disability with social implications, in other words, we have to deal

with the societal barriers that obstruct the opportunities for our

children. We cannot accept the latter. We must accept autism and

move on with the real barriers – the attitudes that will continue to

proliferate segregation.

We need to be advocating for inclusion in the school system and for

the accommodations that need to be made to acquire that. We

need to educate others as to the value of doing this – for all

children, not just the disabled ones – in cultivating sensitivity and

understanding. We need to teach our children how to advocate for

themselves – yes, even the non verbal ones. And for those who are

more profoundly affected by the more disabling aspects of autism,

we can seek the help of other autistic individuals to be mentors

and to advocate for the services that do not degrade and oppress

others.

The one thing we must do is to make other parents aware that

there are so many options about which they hear little or are

belittled by an ABA movement that continues to espouse

inaccurate facts about ABA under the guise of false scientific

“proof.”

We need to stop participating in genetic research studies which

determines only “prenatal risk” and threatens the existence of

autistic people. This research is done under the guise of providing

“better and earlier interventions,” which are non existent. What

babies need is love, support and engagement like any other baby.

The only purpose of this research is to determine genetic risk

factors. We do not hear about research that seeks to help autistic

people be the best autistic people they can be.

We need to redirect our attention to merging help (with the more

disabling aspects of autism) with respect (respecting the autistic

person’s right to exist) and realize that there is life beyond an

over-simplified “cure.” Further, helping the more disabling aspects

of autism (anxiety, sensory issues) can exist outside of a “cure” for

autism.

I urge every parent (but for those who visit this blog, I bet I’m

preaching to the choir), to actively seek out the alternatives and

become proactive in not accepting strategies that change your

child to “appear normal” because they will ultimately be very

damaging to their self-image as teenagers and adults, and we will

have greater problems to contend with later. There are options

outside of ABA which takes time from you to actively watch and

listen and respect your child.

Above all, as Anne Donnellan said in 1984, “make the least

dangerous assumptions” about your child. Or as Douglas Biklen

said, “presume competence.”

“The least dangerous assumption states that in the

absence of absolute evidence, it is essential to make the s

assumption that , if proven to be false, would be the least

dangerous to the individual.” (Zach Rosetti and Carol Tashie

from the Communicator, Autism National Committee Newsletter,

Inclusive Education edition.)

The constant banter that autistic or non verbal people who do not

look you in the eye are “not there” or “not aware,” or “cannot

speak for themselves” is an extremely dangerous assumption. All

people can speak for themselves in many different ways.

Are we listening?

PERM ALINK POSTED BY ESTEE KLAR-WOLFOND AT 6/29/2007 09:20:00 AM

23 COM M ENTS LINKS TO THIS POST


Another Lesson In Single Autism Mom Land

Filed Under (Single Parenthood) by Estee on 11-08-2010

We hate it when we see our children get sick. When we watch them suffer, all we say is that we wish we could suffer for them. Honestly, watching Adam be ill is one of the hardest things.  Yet I know what to do. I know how to take care of him. As a single mom who becomes ill herself I am more at a loss.

After that wonderful weekend in New York with my fellow autism bloggers, I seemed to be functioning fine. Then on Monday evening,  all of a sudden, I began to shiver uncontrollably. In the middle of one of Toronto’s hottest summers, I began layering myself with winter socks, sweaters  and six blankets. This began to happen when Adam came home from camp and from time spent with his dad and I hadn’t seen Adam for a few days!  I had to pull myself together long enough to get food on the table, and ready him for bed. I could hardly read the books and play the games I had planned for his homecoming. Adam’s face was beaming at seeing me and I felt like I was cheating him, even though I knew it couldn’t be helped.

After I got him to sleep, I went to my own bed, layering myself with more blankets and a heating pad, knowing full well I must have a raging fever.  Then it suddenly began to hurt when I was breathing in on my right side. I knew I was getting a kidney infection after having one when I was a kid. I have never in my life shivered like that and I knew I should probably go to the E.R. Yet with Adam sleeping, I had to consider if I could make it through the night until I could see my doctor in the morning. The shivering was so bad my muscles began to hurt.  I had to start considering my options.

I am an only child. I don’t have siblings to call on for assistance. I have friends who I would call if it really was my last option, as I’m the type who doesn’t like to ask for help unless it’s critical. Instead, I have parents — the loving grandparents of Adam who take him on long walks in our beloved city or some forest path in the country, for subway rides and to places I’m certain I’ve never been.  As long as they are here, they are always  ready to help Adam and I, always on call, and this is a gift I don’t take for granted. They were eager to come over but I waited a little bit until I could wait no more (because I am stubborn). Dad took me to the E.R. while my mother stayed at my home for Adam. Yet I wonder how I would have gotten to the hospital  if I did not have anyone to call in the night for help with Adam. If I was single without children, I would have just called a cab and made it to the hospital myself. It’s not like that when we have children. With autistic children, if this were the daytime, I would also need extra assistance because Adam would have difficulty playing quietly in a room for hours and hours.

It got me thinking about single parenthood and how we all need support. As single aut-moms or dads, we need extra support in times like these precisely because our autistic children need extra assistance as well. It got me thinking about our interdependence and community and how we need to be on call for others as much as we need others on call for us. I don’t know if it’s an only-child thing, but it’s difficult for me to ask for help.  I also wonder in all of this, if  Individualism may have gone too far, and it’s something that we all know as autistic people and parents of autstic people that we cannot afford.  No wo/man is an island, although we seem to think that we should be.

There are writings out there about how we can seek extra supports. Books like More Than A Mom, for parents with special needs children. There are some good resources out there that can help us with ideas. It’s definitely important to create a back-up plan as single parents, for it really does take a  community to raise a child, and we need our support systems organized and ready. In the meantime, I’ve not only learned another lesson in my new role as single parent, but I am humbled, if not grateful, that there are people willing to lend a helping hand.

Isolated No More

Filed Under (Acceptance, autism, Parenting) by Estee on 08-08-2010

Fellow Aut-Mom Bloggers: Kristina Chew, Kyra Anderson and Me

I’ve been to a few autism conferences in my time since Adam was diagnosed in 2003. The ones I found most helpful to me in those early days were the ones where many autistic adults “ran the show.” There was nothing more helpful to me at the time in trying to understand Adam, autism and the future for us both, than in meeting adults who were living their lives successfully — non verbal typists to wonderfully verbose Aspergians. I learned from everyone that there is a future for autistic people except that the issue for autistic people was that they were often not invited to speak at autism conferences for parents, or invited to participate on policy panels regarding the treatment and services required for autistic people.

As I said, I think this helped me become a more settled, accepting parent. I avoided parent conferences after that primarily because I was avoiding negative messages, fear and stereotypes perpetuated largely by non autistic “autism experts.”

A couple of years later, interested in pumping my writing life “up” again, I attended this year’s Blogher Conference in New York City where I met many autism mom bloggers that you may already be familiar with:

This Mom
Niks Mom
Thinking Guide to Autism
Susan Senator (although we crossed paths this trip)
Stimeyland
We Go With Him
Love That Max
MFA Mama
Sneak Peek At Me
Have Autism Will Travel
Pixie Mama
The Betty And Boo Chronicles
AspieAdvocate

Squidilicious

(If I missed a blog, can someone please post it in the comments?)

At the autism panel I was really overjoyed at the outcome as I have never heard parents so contented with the state of autistic being. For me, this is a real change from parent conferences I attended in the past. Perhaps this is the next step in the history of autism acceptance within which we are all participating and creating.

There was discussion about the isolation as an autism parent — that the diagnosis of autism, we were told, is “life-ending.” Then, there was laughter in the room.

Yet, I acknowledge that I did feel in the beginning that I would be all alone in this. There is some truth that when speaking to others about autism, it is sometimes tiring in that we are always educating others and thus feeling separate from them, not to mention some missed coffee klatches because our lives are different. Feelings of isolation are very real, and yet, I was wishing that every newly diagnosed parent and child (and I will say parent and child because it effects both so deeply), could listen to this kind of presentation. Maybe newbie autism parents would feel a sense of relief that we all so deserve.

My favorite line was from a mom who described her child having fun and being happy to which she responded with ironic laughter, “oh isn’t it so sad, there’s the misery.”

There was no misery in this autism room in NYC, We’re no psychedelic dreamers. We have our feet on the ground, and we’re still smiling.

You’ll Find Me At BlogHer in NYC

Filed Under (Uncategorized) by Estee on 05-08-2010

After being a little overwhelmed with goodie bags (and I’ll note that I have no need for the stuff so if someone is here and wants mine….come and get it), and loads of women fretting in hallways that Twitter was down for a bit today (I went for a walk), I’ve settled into my hotel awaiting tomorrow’s autism blogger panel and meeting some bloggers I’ve known for years but have not yet had the honour of meeting.

I am also quite interested in the other human rights bloggers that are here.

Keep ya posted!

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.