Estée KlarThe Joy of Autism

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

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

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

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

That’s for certain.

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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.

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Tune in 10:00 a.m. Central Time as I will be speaking on The Autism Acceptance Project on blogtalkradio.

Also posted on their website is a video I made several years ago regarding autism represented in the media:

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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.

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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

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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.

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The Autism Acceptance Project is the subject of an upcoming program with myself and blogger/Professor Kristina Chew on Voice America’s Family Caregivers Unite with Dr. Gordon Atherley. If you are so inclined, it airs August 3rd. Click here for the link

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Using the title from Kat Kelland’s article in today’s Globe and Mail, she suggests that experts are worried that, with the extended array of defined disorders in the soon-to-be-released DSM V (Diagnostic and Statistical Manual), no normal person will continue to exist.

“Citing examples of new additions like ‘mild anxiety depression, ‘psychosis risk syndrome,’ and ‘temper dysregulation disorder’…many people previously seen as perfectly healthy could in future be told they are ill….’It’s leaking into normality. It is shrinking the pool of what is normal to a puddle…

Dr. Wykes and colleagues, Felicity Callard, also of Kings Institute of Psychiatry, and Nick Craddock of Cardiff University’s department of psychological medicine and neurology said many in the psychiatric community are worried that the further guidelines are expanded, the more likely it will become that nobody be classed as normal anymore.”

Well, it’s about time. Perhaps ironically, I’m not one for self-help aisles and a belief that we all suffer from some made-up ailment that can be remedied with expensive quackery. At the same time, I also understand that there is a widespread concern that if we simply dilute human differences and challenges we do not address serious  medical and practical needs. In other words, some people fear that a complete distillation of humankind will take away much needed work towards attaining the services, medical attention, and accommodations that we continue to need in order to replace the treacherous world of asylums. This article in The New York Times, cites some of the other concerns specific to the autism diagnostics proposed for the new manual.

What the Globe and Mail article assumes quite simply, however, is that there are only two kinds of people: normal and abnormal. We know that in history that it is this whitewash, this binary, that is the most dangerous because it has  subjugated individuals with differing needs, thinking ability and functioning levels to not only the margins of society, but to maltreatment and exclusion of all kinds.

Until  recently, disabled people have had no rights. Still today, seen as non-persons despite legislation and the ADA, disabled and autistic individuals continue to struggle for their right to have a voice at policy-making tables, and to be accepted and accommodated for their needs while contributing as autistic and disabled people. Not a day goes by that the notion of cures and getting “better” (that is “more normal”), underlies the purpose of teaching autistic people at all, as opposed to teaching them to their strengths and abilities as well as with a regard to the value of autistic contribution.

As a committe works to redefine the characteristics of autism, the questions that the committee ask in the panels are well worth reading.  I cannot help but wonder how getting an autism diagnosis may change for parents and autistic people, and consider that the future could be brighter. In my view, we seem to be asking some of the right questions with regard to the spectrum of autism and the fallacy of the association between intelligence and functioning levels. So I guess I’m saying that as I read the Globe article this morning, I was sort of nodding my head. Yes, there is no normal….that’s right. Why fear that? What is it that we must do and how must we think differently in order to finally obliterate that binary?

It is here that  I have to refer to Wendy Lawson’s book Concepts of Normality: The Autistic And Typical Spectrum (Jessica Kingsley Publishers, 2008). In it she states,

“Currently the debate about ‘what is normal’ is causing some heated exchange; this is not new. In particular the debate concerning autism, disability, neuro-diversity and typicality poses some ongoing challenges. Disability presents itself in a variety of ways, and for most of us living with disability, who we are is normal for us. For many people on the autism spectrum, which is certainly very disability in a world that does not accept, value or accomodate ‘difference,’ being handicapped is an everyday reality…Having a respectful understanding of one another should include accessibility to appropriate resources, support, safe places and sincere appreciation of difference. Anything less is not acceptable.” (Introduction)

Recently, Thomas Armstrong released his book, Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia and Other Brain Differences, (De Capo Press, Cambridge, 2010). In his first chapter “Neurodiversity: A Concept Whose Time Has Come,” he has cleverly quoted Margaret Mead:

“If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so eave a less arbitrary social fabric, one in which each human gift will fall into place.” (from Sex and Temperment in Three Primitive Societies).

Thomas goes on: “In 1952 the first edition of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association listed one hundred categories of psychiatric illness. By 2000 this number has tripled. We’ve become accustomed as a culture to the idea that significant segments of the population are afflicted with neurologically based disorders such as ‘learning disabilities,’ ‘attention deficit hyperactivity disorder,’ and ‘Aspergers syndrome,’ conditions that were unheard of sixty years ago. Now, even newer disabilities are being considered for the next DSM in 2010, including relational disorder, sexual behaviour disorders, and video game addiction.”

“How did we get here?” Thomas asks. He cites things like a greater knowledge of the human brain and research into the area, a growth of advocacy movements that push for “awareness,” (alas, is it no wonder why most of us shudder at “Autism Awareness Month?). Mostly, the need for the advocacy marketing plan is the way to raise money for things like remedies and therapies. No family wishes to envision their children in asylums and mental hospitals (another topic because they were set up with all of the good intentions we have today for many of our “centres,” but ended up so overpopulated that the patients within them were neglected and abused). While there has been a valid reason for advocacy movements, perhaps an acknowledgement that all humans are interdependent and need different supports (no matter the severity of their handicaps), may be a very welcome change.

While we keep tripping over the question of what is normal, I wonder if we need a supplementary manual that cites abilities, suggestions for inclusion, education, and the like.  Perhpas we need not define handicaps as disorders, but very real challenges and acknowledge them against the social stigma of having any kind of disability. I have to question that if the stigma didn’t exist, would we also be a society that tends towards over-medicalization? For I do acknowledge that heading into a doctor’s office these days one wonders why so many meds are offered so readily for what I feel to be the way in which we respond to life — anti-depressants and meds like Ritalin come to mind.

To me, this need not be a question of what is the right or the wrong way to be human, but how to support all ways in which to be human. A DSM can only do so much. It is up to us to ensure that we cultivate the society that treats and regards each person individually, for although we are united in our lack of normality, we are also unique. It’s a complicated matter indeed, but in the end, all we wish is to be seen and loved…blemishes and all.

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We talk a lot about healing in our day. “Healing autism” is the idea that we can get rid of it rather than letting it be. In this video from York Institute for Health Research, Holly Small discusses how dance enables healing by re-integrating our experiences with our bodies and emotions.

As we discuss the idea of healing, I’m wondering if we are able to view autism in this way — to not just create a revisionist view of autism, but even to reintegrate the experience — being a parent or a person with autism. The following video made me consider how we process experience as both typical and the neurological minority. Assume for a moment, based on our assumptions about rates of autism, that autistic people are the minority. I phrase it in this way because I am in the arts. I come across traits in “typical” people who are able to discuss their atypicalities and sensory abilities that seem outstandingly similar to autistic people, although some more major handicaps may not be present in some of these artists such as motor planning issues or an inability to talk. Yet the atypicalities are certainly present.

What I like about the following video is the way healing is discussed by integrating experience. Acceptance is like an integration of experience, and the expressions we make both scientifically and creatively become manifestations of how we re-integrate the understanding of this into our consciousness. The video speaks of other interesting things too which I could of gone on about (schooling for instance), but I’ll leave the rest of the video to speak for itself. Copy and past this address to your browser:

http://www.yorku.ca/yihr/Research/miniDocs/holly/index.html

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It is said that one should write something that they would like to read. In those early autism years, as I was in that period of coalescing my arguments and thoughts about autism, I have enjoyed writing about Adam, motherhood, and our “journey.” There is a sense of therapy to writing and that can be beneficial for many people undergoing a similar situation. Writing can help us transcend the feeling that we are “all alone.” Yet I have the feeling after being a few years in this, that filtering autism down to miracles and gifts as well as horrors and tragedies has just become naïve. It’s time for all of us to up the ante (I am turning the finger towards myself here).

There is no new take these days on writing an autism and this in and of itself seems to me that either I’ve become over-saturated with the type of material, or I’ve simply reached a new parenting stage and where it takes me with writing here, I am not yet sure. I have tried to post a few interesting presentations on the blog the past couple of weeks. There are so many performances and exhibitions, and art is a segue to complex ideas often then used and analysed also by science as much as science can influence art. Of autistic performance and exhibition, please don’t label them as “miracles.”

I’m fatigued by references to miracles. Autistic achievement, as is discussed so often here on the blogs, is so often referenced as gifted or miraculous. There are no miracles. There is only what we wish to believe.

We’ve noted what a detriment to the autistic community such stereotyping can be. Even if it’s true that autistic thinking is different, and of benefit to our society in many ways, this is no reason to call it gifted or a “miracle.” When it comes to a play, or an autistic child typing, or a group of autistic children performing for an audience, I’m really taken aback at references to the achievements being “miracles.” However, if we are referring to all of us as being “miracles,” I sort of get that — I get that embrace of the miraculous state we call human. Miracles are a short-cut answer and resolution to that which is unresolvable. Try to tie it up with a convenient conclusion, and we will all fail.

Acceptance is as acceptance does, and in all likelihood, the name is too simple while embracing everything. “Simplicity embraces exactly the right details, the right difficulties, the right complexity,” but it also requires am effort in learning, observing, studying and yes, striving to argue well here in this contentious autism community. Acceptance is not simple. Autistic achievement is not a miracle, although it has been so unrecognized in human history that it is not surprising that we have labeled it as such. This is humanity we’re talking about. It’s messy, difficult, wonderful, full of frustration, anguish and yes, joyful.

And this may be the only miracle.

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I was doing a little mother’s day research this evening. When I saw Sophie, I was really happy. I was happy because I know Adam thanks me for all of these things that I do every day and I do not need him to say it just because it’s Mother’s Day. I can see his appreciation everyday when he sees me, grabs my face to look at me, when he snuggles with me, when he jumps into my bed, when he comes to me when he’s sad for comfort. We have the same connection.

All I need is this, and Adam needs my unconditional love.

It’s great being an autism mom, as it is any other kind. Happy Mother’s Day to all the autism mothers and grandmothers today.

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Thanks to a friend who passed along this paper (titled above) by Dawn Eddings Prince (formerly known as Dawn Prince Hughes) published in ETHOS. It is an endearing story of a mother with Aspergers to her autistic son.

Unlike Dawn, I am not a woman with Aspergers nor a primate anthropologist who has garnered much of what she has learned about humanity through primates. If you have not read her book, Songs of A Gorilla Nation it is a must-read. It has left its imprint upon me for years now. No, I am a mother of an autistic child, similar but not just like, her child, relating to my son in unexpected ways, finding my points of context from art and my own awkward experiences growing up — trying to overlay those in helping me understand Adam’s path. My stress has mainly come from outsiders who have put the pressure on us to change and be something other than what we are. I am glad to understand this stress and pressure in order to better help Adam chart his course.

From the time I began The Joy of Autism blog — and been downright attacked for it when it first started in 2005 (see right margin for the archive) — I was incapable of viewing Adam as that “blight” and “burden” that autistics were named. Everything Adam did was a downright miracle to me. Today, Adam — a kind, affable, giggly boy, has developed a curiousity and way of learning that never ceases to expand my own world and way of seeing things. Like Dawn’s son, however, Adam is changing, developing tics. He is growing into a world that he is beginning to understand in ways that I knew (and feared) he would. One could say it happens to all parents. Yet Dawn’s essay, however, cites a few exceptionalities to the growth.

People fear each other. The flavor of distance seems to me to be how a community organizes itself. The codes of distance constitute the law—for the living and the dead, so people close the lid on the toilet when they sit down to talk to someone else in the bathroom, signaling that they don’t intend to dominantly mark their territory in the midst of the other; and men can’t pick up and hold a crying child who is a stranger. This is why people always smile and say hello more often when they are on a trail in the forest, far from help, than when they are on a city street.

Unfortunately, the chief danger and distance he was learning is that people can tell you that what you are isn’t what you should be. I knew that the children at school were teasing him for talking to plants and bugs and rocks. His teacher told us he had a learning disability and had some attention deficit problems. He was starting to not be able to sleep at night and had anxiety attacks. Where he had always been an easy child he started to throw himself to the floor and scream over the smallest challenges. He started to be unable to go to restaurants because the lights hurt his eyes and the normal noise of conversation hurt his ears—he would cover them with his hands and rock, trying to get under the table. He developed strict routines and would fall apart if something unexpected happened. He started to develop tics. He was becoming contextually autistic.

This essay is beautifully written. Remembering Teryk, her son, playing in the prototype sensory room set up at The Sheraton Hotel in Toronto, where I introduced myself to Dawn and received such a warm hug from her, I feel we share a bond beyond that introduction by way of this piece on the special privilege of raising an autistic child. It is the bond of easing ourselves into the world as both autistic people and as their parents amidst the deluge of questions, quandaries and challenges that continue to face our children all the while loving them and getting them for who they are. And who better than Dawn?

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At Toronto’s Sick Children’s Hospital, we got Adam’s EEG done today, I’m relieved to report. Adam, Grandma and I went together and I’m glad we shall get some information after the few months we’ve had (see previous posts on body jerks/spasms). I’m too tired to write too much at the moment — the sedative was so strong I could not leave Adam’s side all day — but, I do have to say that I get asked a lot of questions about autism when I go to Sick Kids. As I try to soothe my son from a stinging needle in his muscle, I get asked

When was he diagnosed?
How did you know?
How did it look?
Was he detached from you from birth?
Did he line his toys up?

Yada yada.

Please don’t get me wrong. I do not mind answering questions, but I also need to attend to my son. I suppose I should say I do not mind in the appropriate context. I would rather come in and answer any question on another day rather than be asked with Adam listening as if he’s not in the room. Indeed, I did mention something as politely as I could.

It’s a bit of an issue for us parents and for autistic people, this having to answer all of these questions all of the time. Yes, I mean every time we step out the door. Yet others have to understand that part of our willingness to answer such questions is also an attempt to be able to move on in our lives without having to explain ourselves — “us” being parents of autistic people or autistic people themselves.

Sometimes I wonder how far we’ve come in autism “advocacy” — if we are doing more harm than good. If people were not classified in the first place, if a statistical norm was never invented (indeed it was in the nineteenth century by the medical and legal communities in order to deem who might be dangerous in society — all based on possibility, not on facts…read Foucault), if autism and autistic people were not as targetted in the media as “abnormal,” if we were truly a more accepting society of all forms of human, we might not have to live our lives constantly having to answer how we exist and how we came to be.

Isn’t this what we’re aiming for — to live without question?

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Here in Toronto, I sit on Inclusion Committees. My son has been included in a Montessori classroom but we are going to leave after June. The school gave Adam loads of acceptance and enabled him to bring his aide, his adapted programs, his computer laptop and the like. The school was wonderful in that it was a calm environment that had concrete Montessori materials for him to use.

We had to adapt his program, ourselves, while staying within the structure of the classroom. He worked alongside the other kids and the other kids loved him. He learned how to engage with them and they learned how to engage with him. It was very important at the time we made the move to a Montessori school that Adam be with peers and be able to learn to tolerate them, the noise, and being able to play and learn with others. It was the right move for him. My wish is that schools would provide more education about people with disabilities: how to be more patient, tolerant and accommodating, and there are programs in Toronto that are attempting to achieve such goals. Last night, I attended Inclusion Awards night in Toronto and spoke briefly with The Honourable David Onley (Governor General of Ontario) who is himself disabled.

It was a successful experience and I have to admit, we’ve not had any problems with our school choices like so many other families who must endure the public school system, the IPRC process and assigned E.A’s. In addition, too many “special needs” schools ironically turn down autistic children with behavioural challenges or children like Adam, who have difficulty talking. I understand that that is very difficult, heart-wrenching and it seems we sit on pins and needles waiting to see if we either get the luck of the draw or if we have to endure another heart-wrenching process as I have also been privy to it. This is the most unjust process I can think of as no child should be turned down from any school, let alone the “special needs” schools, but this is the reality right now. Here in Ontario so far, Inclusion is only as successful as the person who is leading the process within the school. A teacher is only as good who understands the child as a unique and whole human being, and is willing to go the extra mile. But for those of us who live through this daily, I’m not saying anything new.

Although I am thankful for our successful early years, our weekends were left struggling to find play-dates from many of these children. Adam always gravitates to the other students with special needs anyway, so it became easier to enroll him in social programs for special needs children. It’s a common story: like attracts like. We feel more comfortable with the people who may understand us and with whom we may understand, and we have to allow room for all of this in the Inclusion process. Adam’s school was a brilliant jumping board for Adam to graduate to the next level, so he will be attending a school that will be able to accommodate his learning needs more appropriate to his new found curiousity. Or so I’m hoping.

Inclusion is nascent in the Toronto community. Still, there are attitudes to hurdle, not to mention a reluctance to invest time, money and training, perhaps because these attitudes are not really up-to-speed. If a question I received yesterday from another parent with a child with another disability was any indication (“is your son violent?” ),one may begin to understand the many general assumptions that exist out in the world about autism and wonder if fear is the biggest barrier to Inclusion. I certainly don’t blame anyone for asking such questions — there are people with many challenges out there. Adam is not violent. He is affable, social (for an autie — he just does it differently but often craves being with others even if he may engage in the “Adam way”), and he wants to learn, even if he struggles with what appears to us like distraction (or should I rephrase that and say it is also us as the parents and teachers who struggle with it because it challenges us to have to learn and see the way our children might?). Adam is talking more now and he was approved for a new device which will enable him to communicate even more. He is bright, able in so many ways. He has a handicap in a world where his style of being is the minority, mind you, but this doesn’t stop him, or me, from moving ahead.

This is the first year I’ve engaged Adam in more special needs programs — for social skills, life-skills and general leisure. He is still Included in a “regular” summer camp, but Adam now needs a different kind of support as he grows into the world. I am very happy for him that he will be gaining these new skills and looking forward to his ability to help others, as I believe it is crucial in life that we all find our areas in which to swagger. In fact, as I’ve sat with it for a few days now, I’m thrilled. I still have no doubt that he will be able to do contribute and go on to further education in his future. It’s not an outrageous expectation: I’m basing it on the person I see in front of me who is utterly capable and who is a privileged boy in that he is being given two healthy, willing parents who enable opportunities for him in his life. I still work in Inclusion because I want to see more opportunities for Adam by the time he reaches his twenties. We have to work at all angles — both in Special Education and Inclusion. The trainings co-exist and are not exclusive of each other.

This lead to another thought I had this morning as I still read the many pleas for money for “Early Intervention.” I wondered why, after I’ve come so far in my own thinking, the term still bothers me to the extent that it does. So here’s my answer: Adam doesn’t need intervention. I may be lucky that Adam is an only child as I have nothing and no-one to compare him to except for my own childhood. I figure we have made our own normal. Our weekends are full — yes, we do visit friends and other children, we have programs to attend, concerts and plays to see — and yes, these have to be pre-planned (but then again, what family doesn’t organize a play-date?). No, I cannot drop him off and leave him alone in someone else’s house yet, but like all things Adam, he will do things his way and his own time. I could sit here and cry and bemoan that fact that he is not doing all of the “typical” things other boys his age might do, or imagine that he is somehow lonelier for it. But is he? He has no siblings to compare himself to. He is competent in our home, a burgeoning artist, musician and cook. He enjoys other children and will likely gain a long-time friend when he is ready. Like myself as an only-child, he has learned to entertain himself or play with me or spend time with his grandparents or much older half-siblings when they return from university. For us, our normal was early engagement and we grew into acceptance. For certain when Adam was two years old, I believed all this engagement would make him more “normal,” whatever that meant to me at the time. Six years later, I can see that our life is normal. It is normal to us and aside from our personal struggles recently with life transitions, I really love our life. I figure that one of the many gifts I might be able to give to Adam is my belief in this. All I have to do to believe it, is to let go.

The idea that one has to intervene still suggests that something is wrong. The other day, my best friend’s niece was on the A&E show called Intervention. Amy suffers from aneorexia/bulimia and is in serious trouble. The family asked for the show’s help in getting Amy the help she really needed. If not, Amy would die. To me, this is the seriousness of that word Intervention: it suggests that something is seriously wrong and is akin to the analogy that autism is like “a fate worse than cancer.”

It is not. Autism is our normal. Autism simply means that I needed to engage differently at those early stages of growth, not employ the tactics of early intervention. I wish I had had someone to tell me this when Adam was first diagnosed as it has taken me time to grow into my thoughts and words. Adam was not ready for the forty hours of ABA that was suggested back in those days, and we all know that even with all that ABA and all those promises, our children are still autistic.

When I hear parents complain about autism (see this blog on Kim Stagliano and her recent tirade on blaming autism for Aiden Johnson death), I can feel myself being sucked into a vortex and I do not see how that helps us become better parents to our children. Yet I suppose if certain parents truly feel empowered by believing autism is like cancer, if that gives them some kind of hope as the walks, marathons, runs do to defeat disease, then they will work and talk hard. They will use fighting-words.

I am of the belief that by fighting, one is defeating the child, not the autism. I am of the belief that by attacking the child from every angle like a huge dose of chemo sends a message to that child with a different perspective and manner of engaging in the world, that THEY are wrong. I see autistic children as they grow older with those beliefs surrounding them, absorbing the idea that autism is a disease and that “they are more than their autism.” What does that mean other than a denial that autism has truly effected the way one perceives and engages with others and the environment? Why not be proud of that and learn ways to take advantage of it?? I’m so sad to see parents fight so hard and then become so despondent.

I propose that while we are changing schools next term, that we again look at the terms we use. Had I intervened with Adam in an aggressive way, I truly believe he would have regressed into himself and perhaps with more aggressive behaviours. Instead, I propose we act gently. We have to challenge ourselves everyday with the notion that there are many kinds of normal in this world and while the world may not yet totally get it, it is through our use of terms and our actions that will enable the rest of our communities to jump aboard.

I am very uncomfortable using the term early intervention for assisting autistic children. I believe we have to work to change not only our attitudes, but our terms have to catch up. Perhaps we can use terms such as early engagement and early promotion of the different forms of play that we can engage autistic toddlers in the same respect and presentation we promote play for typical toddlers. Of course, the earlier we can do this, the earlier parents may be able to accept their autistic toddlers, and this supports everyone.

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This is the first article published by realtorsthatcare.ca that I wrote on making safe yet attractive living spaces for autistic children. Thank you, Zeshan, for both caring and for being interested in this topic.

While safety may involve anything from picture symbol reminders to locks, I’ve also paid attention to “safe spaces,” that is, making safe sensory places where Adam can escape and learn to self-regulate. As I mentioned in the article, as I learn about what Adam needs, I like to create fun, aesthetically-pleases places and devices that both Adam and I can live with and enjoy.

Photo credits (and all good photos of Adam are taken by) Mike Klar whose work is linked here.

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