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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Tuesday, March 28, 2006

 

Open Arms

Recently, I’ve been writing about how friends and family had treated us, with good or innocent intentions, however thoughtless, in an honest vein. I’ve been talking about acceptance to the point where advocacy pools us all into two camps: the curabies versus the neurodiversity types. Sounds like teams for a Harry Potter quidditch match.

The term acceptance is being interpreted as a do-nothing approach in a culture that needs to do something for just about everything. Depressed? Take a pill. ADD, take another pill. Epileptic? I’ll continue on that one in a moment. Pills are a matter of choice. I do believe that there are people who really need them. I also believe that we live in a culture that over-prescribes them. I’ve listened and respect people’s choice to take them temporarily, permanently, whatever. I ask you all, however, to consider the bigger picture for a moment.

All parents (I say this loosely – there are parents who abuse their children), want the best for their children. When confronted with the term autism, there is little chance for a parent to trust themselves and not be swathed in fear. There is an entire culture and history out there that has helped construct that, so I understand that it is extremely difficult for parents to steer away from wanting to “help” their children.

When Adam was first diagnosed, I was confronted by one type of “scientifically proven therapy.” I joined an organization that funded research in support of a cure because I believed, at first, that autism was an illness that masked my son’s true potential. At least that was how autism was presented to Henry and I. Once we enter the “stream of autism,” as parents, there is little choice to believe these messages as sole choices in a culture that does not accept acceptance for people who are different.

I hired therapists who viewed Adam as a pathology and that didn’t feel right. After two months of being in “the autism stream,” I decided that something was horribly wrong with this view. It took a while to trust myself, after hundreds of hours of reading and attending conferences. I really believed that the answer to Adam’s autism, to his progress, was out there somewhere, extrinsic of me. I believed that we needed to impose forty hours of therapy and usurp our family life, and that the pay off would be an end to his autism, or at least make him “indistinguishable from his peers.”

It wasn’t until I read books by people with autism that I began to view autism differently. I agonized over all my choices and prejudices about autism. In this world that also doesn’t support parents very well, it is very difficult to stand on one’s own and not listen to all the things other parents are doing and think you are not doing the best for your child. A parent tends to worry about what they’re not doing.

The odds are really stacked against parents. Our idea of “normal” is an historical construct (see previous posts on this) beginning in the mid-1800’s with Charles Darwin’s survival of the fittest theories. Karl Marx supported ideas of the perfect man in outlining ideal physical attributes of the worker, which was the basis for socialism – an average. We began to construct hierarchies of preferred traits as history continued with its evil side culminating in the Holocaust. Today, these ideas carry over into a consumerist culture, with a billion dollar industry invested in ideas of human beauty and perfection, leaving us otherwise in debt and continually miserable. We fight fat, we fight disease, fight ourselves, and what? Fight disability? There is a lot of effort in fighting and it leaves parents empty and exhausted, not to mention consigns our children as innocent victims -- there is always an innocent victim in a war. How do you think this has effected our quality of life? Isn't it time -- and perhaps we are on many levels now -- to re-define what quality of life is not only for us all, but for people with disabilities?

The anonymous commenter of yesterday's post, who believes autism is the evil taking away her son, feels that acceptance is synonymous with doing nothing. She further makes a fundamental mistake in believing, as a result of a culture that supports her in this false-belief, that autism is the enemy. For the rest of their days, her child will feel that there is an enemy within, and both of them will be forever miserable. People will offer diets and pills, but the autism will still be there.

False-beliefs need to be corrected, and parents who feel this fear might just need our open arms. This is not an attack by any means. It is a comment that there is a prevailing attitude that is harmful to all people with disabilities. There is a marketing machine of research and pharmaceuticals that need to take more responsibility for their ethical mistakes.

This afternoon, I met with JoAnne Dahl fro Uppsala University and Dr. Emanuel Shapiro a psychotherapist from New York who has written books on relating to patients. JoAnne was giving a presentation in Toronto today about,Acceptance and Commitment Therapy (Stephen Hayes, Kelly G. Wilson, Kirk Strosahel) and I received a call to go and speak to these two scholars today. The idea (and I haven’t yet read the book), is that when we have to understand our preconceptions in the way we look and judge people, overcome them and accept others as they are. Once we accept ourselves and others, we make a commitment to support them. I learned from Joanne that some epileptic seizures can be controlled without medication, that children often have seizures because it is a way to avoid physical abuse, a way to stay home with their parents, or a means to feel good. Through acceptance, and working through the barriers to it, the seizures can be controlled by the epileptic person. If this is true, it is an interesting study about non-acceptance and frustation and anxiety. Please note that I am not supporting this theory before investigating it,but want to mention it as an interesting piece of information that was given to me today, and we can all investigate it further. I know little about epilepsy and in brief investigation, have come across papers about techniques for self-control of seizures. I invite others who know the science better, to comment.

I was asked at Adam’s school today by another parent who reads this blog, “How do you do it? How do you just not listen to all the diets and therapies out there?” Did I manage to look at things differently in my art-history classes when we turned paintings upside down to see what we otherwise couldn't right side up? Or was it my philosopher-father who taught me that for every belief, there is an equally compelling other that taught me to question everything? Whatever the reason, this is not about keeping up with the Jones’ anymore. I really care about my son’s wellbeing. I read as much as I can, with whatever energy I can muster in between playing with Adam, and lately, teaching him on the computer – something he has lead me to. I have chosen to view his so-called “behaviours,” as functional needs, his “obsessions,” as interests, and remember how Dawn Prince-Hughes had to repeat words of things so that she could absorb them, or how Zilari’s father fostered her interests by feeding them even more. Adam’s latest “obsession” with calendars has enabled him to type the months out on the computer, and soon, I’m sure I can teach him more about the calendar and how he can use it. If I had viewed all of these obsessive interests as dysfunctional, or strange, I could never nuture Adam's potential.

If I have to rely on the DSM IV, I would otherwise view all of this “stereotypy” as dysfunctional because it seems foreign to me and what other children do. Aggressive behaviour is always a function of non-acceptance and often, frustration. When Adam becomes angry with me, it is usually over something that he can’t do when he really wants to – like writing when his hands are not mature enough to hold a pen well. If I choose, as I’ve learned from autistics like Dawn Prince-Hughes, Zilari or Donna Williams, to understand Adam’s learning style, his perceptual differences, he processing differences, and his sensory differences, and respect them, I come to learn how unique he is and this stuff doesn’t seem that odd at all anymore. Sometimes, we just have to go into someone else’s world to understand them. I try and do this with Adam every day and I believe it can be done in every world, one that seems even more foreign than Adam's.

Acceptance is a commitment to your child. To love them forever, to find joy in them, to believe that they have every ability to learn. If we believe this, we can begin to build and provide the supports they need to achieve. Without it, our children will forever be subject to discrimination and closed doors. A pill won't open them, I assure you. Autism is forever.

To walk in another man's shoes always leads us down the road of compassion.

42 Comments:

Blogger Estee Klar-Wolfond said...

Anonymous,

I just noticed your post after I wrote this and know that you are supported. Read my comment after yours in "Awakenings."

I had similar feelings that you had. This takes time. Process is good. Support of others even more so.

Keep writing!

7:15 PM  
Anonymous Lisa said...

I agree with so much of what you've said, yet I'm baffled by the person who said that children deliberately have seizures to feel good, avoid abuse, stay home with families, etc. There would need to be some extremely strong scientific evidence to back this up, otherwise this assertion is quite irresponsible and potentially harmful to families. Are parents with epileptic children now to be accused of physically abusing them? (And are the children with "epilepsy" actually dissociating, which is a completely different phenomenon than a true seizure?)

I certainly have never experienced this with my work with children - especially not on the day that one of my little ones had his first identifiable seizure in front of a group of 50 people during a play rehearsal, or another child had seizures in her sleep. I know one child who faked a seizure in front of her parents, to see what the reaction would be, and quickly learned never to do it again. But apart from learning to identify the body sensations (aura) that occur shortly before the seizure begins, I can't imagine how someone would be able to conclude that they were doing the seizures purposefully. I also can't understand why, if seizures can be controlled so easily, I've known folks to spend months in the hospital and to suffer irreparable brain damage from their epilepsy. One friend from high school will never be able to drive and almost didn't graduate from school because of her epilepsy. (She's doing fine now, and is managing the symptoms successfully.)

Kind of went off on a tangent there. I just think there is so much misinformation out there and am questioning how this person came to the conclusion that she did.

7:49 PM  
Blogger Jannalou said...

A pill won't open [closed doors], I assure you.

Very true.

I often have to remind people that the meds we take for ADHD don't magically give us the skills we are lacking. I still lack social skills, I still perseverate, I still have trouble keeping my house clean, etc. The difference is that now, on medication, I am able to focus more on learning these skills.

Once I've learned them, I won't forget them, and I may be able to stop taking meds. But you know that. :)

7:55 PM  
Blogger Estee Klar-Wolfond said...

Lisa,

Yes I question it too -- but like any blanket statement, I'm sure it isn't true for everyone. Her name is JoAnne Dahl from Uppsala University and I will be looking this up. Notice the caveat I wrote later: "If this is true..." I mentioned it so we can all investigate it.

8:06 PM  
Blogger Kristina Chew said...

Or perhaps to walk where another woman's calloused feet left their mark?

8:36 PM  
Blogger Dr Chan said...

Hi,
I have an interest in A.D.D. I look at the "disorder" with a different set of lense than my allopathic cohorts. No matter the label, the solution is what's meaningful. Please check out my website: www.helpmyadd.blogspot.com.
Thank you.
Dr. Richard Chan

9:12 PM  
Anonymous Anonymous said...

"For the rest of their days, her child will feel that there is an enemy within, and both of them will be forever miserable."

I find that extremely upsetting and very harsh considering I'm trying to do everything I feel is BEST for my son because I love him so, so much.

I wonder how you felt in the first six months to a year after your son was diagnosed? Did you accept it immediately? Consider it a "joy"? Or did you try to figure out what may have caused it and researched ways to be rid of it?

I'm sorry that my opinion on this matter doesn't match yours but please don't assume that my child and I will be miserable for the rest of our lives. I love him immensely and I do everything in my power to nurture and protect him.

9:39 PM  
Blogger SquareGirl said...

Today I bought the book "Natural Cures 'they' don't want you to know about". Not because my mind was on the subject of "cures", but because I was again becoming frustrated with societies tendency to over-perscribe. Western medicine has never seemed to sit well with me.

I always appreciate it when the idea of overgeneralizations is called on, especially since as an ABA consultant, I find that people tend to assume all kinds of ideas about the way I see autism and how it should be "treated" and most of those assumptions are wrong. Especially the one about not accepting autism. I often joke that the behaviors that need the most work are the ones of scoiety who can't seem to listen to, attempt to understand or relate to people with autism...it is often amusing to me how much everyone thinks that it is everyone else who needs to change.

9:41 PM  
Blogger Do'C said...

Squaregirl,

Please tell us you bought that book already knowing all about Trudeau's background as a con man.

http://en.wikipedia.org/wiki/Kevin_Trudeau

10:34 PM  
Blogger Zilari said...

First, I'll respond to the following sentence because something about it seemed very familiar...

When Adam becomes angry with me, it is usually over something that he can’t do when he really wants to – like writing when his hands are not mature enough to hold a pen well.

I read this, and then got my "baby book" (a record my mother kept detailing my actions and behavior between the ages of birth and about four years). Sure enough, my mother had written in my baby book, You (Zilari) get frustrated and cry easily because you cannot yet do all that you would like. That was an accurate assessment, as is yours, I'm sure, in regard to Adam.

Secondly, a response to other things you wrote:

I have also observed the confusion between the true intent of acceptance and that of a "do nothing" approach.

I think that part of the reason for this confusion stems from the notion brought up in, and in response to, your previous post: that of there not being much in terms of a concise explanation of what "acceptance" means in the case of autism.

The only real way for definitions of complex things to make their way into a wider swath of consciousness is for people to keep writing about them, to keep talking about them. Which you're definitely doing.

One thing I truly believe is that it is possible for parents to help AND accept their children. At the same time. This can be as simple as recognizing that one's child has a different learning style, or as complex as coming up with a dynamic plan for structuring each day so as to help prevent overload.

It is sometimes difficult for me to point out when people are exhibiting prejudice, since I do know that most prejudice is borne of correctable ignorance rather than malice.

I don't want people to feel "judged" or bad when their preconceptions are pointed out -- but I realize I can't control how people feel, and some people are going to feel slighted no matter what.

But the fact of the matter is, when I see people saying things like, "I just want my child to be normal!" it is just as hurtful and confusing as when my classmates in elementary school told me that they would be nice to me if I change my interests and clothing to more closely match theirs, or when some other seventh-grade girls informed me that they were picking on me in order to "prepare" me for high school, where everyone was going to hate me anyway.

I don't understand why there isn't more focus on curing ignorance rather than curing autism. My being autistic isn't what made those girls make their comments -- their prejudice, and perhaps their parents' prejudice -- was.

What parent would want their child to become "indistinguishable" from peers who gang up on children with disabilities -- differences -- what have you, and make ignorant, hurtful comments?

You've basically pegged the reason for all this drive toward normalcy, with its accompanying plethora of treatments and weird therapies and quackery and confusion: fear.

Parents, by and large, seem to be terrified that there will be something they COULD have done, something that would have given their child a better life than they ended up with. The thing is, nobody can really plot the course of human development.

The future is also shrouded in uncertainty -- I see time as something that unfolds incrementally, and the future as something that can only be predicted to any reasonable extent within minutes or hours of something actually happening. Hence, trying to extrapolate from a child's apparent skill set and appearance at age five what sort of adult they'll become is, in a word, impossible.

However, one thing I would like to remind people of is that doing "too much" can definitely be as harmful, or more harmful, than doing "too little". With this pointed out, it becomes clear that no extreme can be considered "the answer". It is good to see someone advocating a sort of dynamic approach that avoids extremes.

12:01 AM  
Blogger SquareGirl said...

Dad of Cameron, thank you for the info, I didn't know that. I am always interested in alternatives to perscribing more drugs in a culture that seems to be plagued with excessive perscriptive medications. I have purchased several books on alterrnative healing, some good and some not so much, but by reading some of the bad ones, I have learned something as well, if only what resonates true for me. So I'll read with a grain of salt.

12:27 AM  
Blogger Estee Klar-Wolfond said...

Anonymous,

Yes, it was harsh, but I asked her to read my comments first in Awakenings since I wrote this post after hearing how confused you felt. As such, I acknowledged the confusion and my own in the early days. I do feel however, that we have to overcome our ideas of making our kids "normal," as if as is is not good enough and autism is an enemy. This just sets everyone back and no one can ever move forward.

Joy comes, believe me. I wrote a post called The Lonliness, The Struggle and The Profound Joy of Autism. If you read earlier posts, you may be able to relate more. My views have evolved with time and research and I acknowledge that it takes everyone time in a society that bombards us with the idea that we all have to be something that we are not...better.

7:09 AM  
Blogger Jannalou said...

DrChan said, "I have an interest in A.D.D. I look at the "disorder" with a different set of lense than my allopathic cohorts. No matter the label, the solution is what's meaningful."

I went to the blog and looked it over; it's all about homeopathic methods, of which I have tried a few.

I prefer taking medication once or twice a day, thanks.

10:14 AM  
Anonymous Anonymous said...

I think our disagreement on this centers on the fact that we have different definitions of "acceptance" and what we find "joy" in.

Acceptance...I accept the fact that my son is autistic. But I will get him as many services and therapies as I can to help him learn and grow. I think my confusion stems from hearing so many people say "Accept your child for who he is!" To me, that means...don't put him through various therapies and supplements to try and ease the autistic tendencies and characteristics. To me it meant, if he's going to be who he is meant to be, therapy (especially behavioural therapy) will change his core being. Maybe...but my son has learned so much through his behavioural therapy. Left to his own devices during the day I'm sure he would spend a majority of it spinning around in circles or lining up his cars. I work with him as much as I can but I have other children and he needs more focused, one-on-one attention.

And joy...I will never find "autism" joyful. It was a devastating diagnosis for us to hear. All of the dreams we had for our son vanished. The long work towards helping him to lead an independent life seemed exhausting. But I love my son and HE is joyful to me. Autism isn't. And I've realized that although the dreams we had for our son (dancing with him at his wedding, playing futbol (soccer) with his dad, having a close, tight bond with his siblings, traveling around the world with him) may not come to fruition, other dreams have now replaced them. I want my son to be happy, to learn and grow and thrive to the best of his abilities.

As for your comment that we're going to be miserable for the rest of our lives, I understand that you wrote it before you saw my second comment. A simple edit of your post would have prevented a lot of hurt feelings. I try my best every day to be a good mom. To tell me that I may be making my son miserable was uncalled for.

10:22 AM  
Blogger Estee Klar-Wolfond said...

Hi Anonymous,

Thanks for your comment. I had to keep that in for others. I do not agree with charities seeking cures that peg autism as an evil, an enemy. I stand by what I say in principal.

My post says it all. Sure, a lot of parents love their kids -- they believe they are mercury poisoned and subject them also to dangerous therapies like chelation, which has killed some.

Vitamins and all that jazz are not scientifically proven to affect autism. Neither are diets. There is so much misinformation and people pulling on our heartstrings, so one has to be discriminatory when it comes to "help."

As for ABA -- whew -- I could go on about that one. I do a lot of watered down stuff for Adam -- which means I have learned to cull from other "operationalized" methods. Behaviourism is a form of psychological therapy. It is not a teaching method, if you want to get technical. We use behavioural methods everyday for every child, for sure. But pure ABA is swathed in misinterpretation and really bad teaching, and those "teachers" who call themselves behaviourists, stop looking at the child and unfortunately, many of them, look more to their charts and data and pedantic curriculae which ceases to keep paces with the child's lead and often, intelligence.

I often look at behaviourism as "teaching your child how to respond." So it is only one small fraction of the whole here. RDI focusses more on the social issues and self-regulation and coordination stuff which is very useful. But there is a lot of "teaching methods" one has to be versed in to teach well. Do I need to say that the best teacher is someone who ends up following the child's lead and develops a plan to help that child, and is someone who can stay in the moment to take advantage of learning opportunities? I'll say it over and over. Often I find the best teachers for Adam are those who know nothing about ABA, but who are very flexible. With flexibility and an open mind, these people can work in tandem with the parent and the child to make it work.

So, what you are doing is normal. I did 1 1/2 months of ABA and dumped it. I see value in some of its principals, but, personally, in our experience, RDI principals made more sense. Even with that, we use the checklists only as guides and do our own activities.

The important thing to note that every child, even those with autism, is different, so a parent and a team have to find the methods that work for that child's learning style. Blanket approaches fall short, in my experience.

It takes a lot of work on behalf of the parent to find this out. No one is going to give this information to you. Everyone has something to sell.

12:21 PM  
Blogger Joseph said...

I think my confusion stems from hearing so many people say "Accept your child for who he is!" To me, that means...don't put him through various therapies and supplements to try and ease the autistic tendencies and characteristics.

That's really the essense of the confusion. Acceptance is not the same as doing nothing. Parents can and should help their children, regardless of whether they are autistic or neurotypical. Now, much of the debate is over what is actually helpful and not harmful in the long run, the scientific knowledge that backs up the approach, attitudes and expectations.

When autistic advocates say they are anti-cure, people assume they are anti ABA (when they are) because of this. This is not the case. ABA is not considered an actual cure, so that's not the reason it's opposed. It's opposed on its coercive nature and its unknown adverse long-term effects. (Additionally, the evidence that supports it is not completely solid).

12:27 PM  
Anonymous Bonnie Ventura said...

Anonymous, in response to what you wrote about dreams vanishing:

Any child, whether or not autistic, may grow up to be a lifelong bachelor. And autism doesn't necessarily mean that a child will never be married. (I have three generations of autistics in my family, all born to married parents.)

Any child, whether or not autistic, may lack interest in sports. And autism doesn't necessarily mean that a child will never play sports. (My aspie son wasn't interested in soccer, but he is a varsity athlete in both wrestling and cross country running.)

Any child, whether or not autistic, may not get along with his siblings. And autism doesn't necessarily mean that a child will be unable to form a close, tight bond with his siblings. (My kids are the greatest of friends, and they always have been.)

Any child, whether or not autistic, may find travel uncomfortable or distressing. And autism doesn't necessarily mean that a child cannot be taken on long trips. (I remember traveling by train from New York to Los Angeles when I was a small child, and I loved it. Many autistic children enjoy trains.)

I am certain that neither Estee nor anyone else in this discussion was accusing you of not being a good mom (or making any personal accusations at all). Because we live in a world so full of prejudice and stereotypes about autism, it's not surprising that your first reaction was to see autism as a "devastating diagnosis." It's hard to get past all the misinformation out there.

I respect you for reading about different views and seeking to learn more.

12:31 PM  
Blogger Estee Klar-Wolfond said...

Well said, Bonnie. Yes, I am also very impressed that mom anon is questioning all this. It has taken me two years from Adam's diagnosis to come to where I am today.

This is why I am speaking up about my experiences. Wouldn't it be much better if parents didn't have to sift through this mire of misinformation and confusion? To have schools that accept our children and are committed to creating educational plans that help them be the "best" they can be? Wouldn't it be great if we can just say "autism" to our friends and still be invited to playdates or not worry about constant comments or stares? Wouldn't it be wonderful if we didn't have to worry about bullying or social stigmas for our kids -- and just relax and take their lead and have that be okay to everyone?

Ahh...again, I remind myself why I do this.

12:44 PM  
Blogger Do'C said...

Anon,

But I will get him as many services and therapies as I can to help him learn and grow.

Insert the word "really" before help, otherwise any old service or therapy (or possibly so-called treatment) will do.

I think my confusion stems from hearing so many people say "Accept your child for who he is!" To me, that means...don't put him through various therapies and supplements to try and ease the autistic tendencies and characteristics.

I think Joseph addressed this well, but I would add that it could be emotionally difficult. "Belivers" in the various wacky (by wacky I mean not based on real or good science) will use every emotional appeal and support they can to offer "cures", treatments, and therapies. Therapies aren't necessarily "putting him through something" in order to bring about change. I'd argue that the most beneficial therapies are aimed at the family and seek to enable interaction and learning based on communication being a two-way street. If you're not involved and learning as part of it, you might be missing some important points. Yes, this can be a challenge with several kids at home, I understand, as I have three.

I work with him as much as I can but I have other children and he needs more focused, one-on-one attention.

Anon, I'm with you on this one. This is definitely a challenge - all the kids need appropriate attention and this is work for sure.

1:43 PM  
Anonymous Kassiane said...

Anonymous,

How many autistic people do you need to hear/reasd saying that being autistic IS joyful because it opens us up to a whole other world that NTs just don't see, our strengths (yes, I say that we do have relatively stronger strengths between perseveration and our natural wide skill scatter), and a near inability to get bored, among other things? Id rather be full blood autistic than NT, or worse, the hybrid they made a good friend of mine into. In the first Lovaas study. He has the worst PTSD *ever* and doesn't fit into either world. Now THAT'S sad. Autism itself isnt, it's just how our brains are wired.

As for epilepsy--I think the researcher in question owes all us epileptics one HELL of an apology. I've been on every anticonvulsant out there, they don't WORK (bullying me into faking one because you don't belieive in adult autistics or epileptic bipolars doesn't work either. Theres a doctor you can ask about that....). To avoid physical abuse is the stupidest reason in the world to turn on the strobe and seize, seeing as then you're home with the abuser. Duh? More and more neurologists are proving themselves incapable of logic every day...

Hating junk science,
Kassiane

1:50 PM  
Blogger Kev said...

Anonymous:

"Acceptance...I accept the fact that my son is autistic. But I will get him as many services and therapies as I can to help him learn and grow. I think my confusion stems from hearing so many people say "Accept your child for who he is!" To me, that means...don't put him through various therapies and supplements to try and ease the autistic tendencies and characteristics.

Acceptance to me is more than accepting that my child is autistic. Its accepting that fact as neither a positive nor negative thing but simply a different type of thing.

However, as Joseph said, acceptance of someones neurological state is not the same as doing nothing. My daughter has speech therapy. We are currently researching a TEAACH based system, she's trying to learn PECS. No one is saying that its good to leave your child without an education - that would be stagnation.

On the other hand, its simply a fact that autistic people learn differently to NT people. They percieve differently. In order to try to understand as much as we can, it beehoves us as parents to go to them instead of expecting them to come to us in my opinion.

Some of the 'autistic characteristics' you talk about as wanting to 'ease' might be very important coping mechanisms. My daughter seems to require a few minutes stimming when entering our front room. It helps to 'acclimatise' her we think. I wouldn't want to take that comfort away from her.

"And joy...I will never find "autism" joyful. It was a devastating diagnosis for us to hear. All of the dreams we had for our son vanished. The long work towards helping him to lead an independent life seemed exhausting."

I hope to say this without coming across as harsh but please try and imagine how your child might feel to hear his existence described as 'devastating' - this is exactly how we felt and I'm sure why the first year or so was so difficult. Autistic kids are not the 'empty vessels' they are portrayed as. I assure you that he will be taking everything in. You will get evidence of that yourself as your son begins to progress :o)

"I try my best every day to be a good mom. To tell me that I may be making my son miserable was uncalled for."

Its the burden of NT parents to not be equipped with the knowledge to understand their autistic children straight away. It requires the ability to stop treating and start joining in with your child. Take a few steps towards their world and they will do the same. I know that at one point we probably were making our childs life miserable. We were so fixated on a cure that we forgot that there was a person involved. Since we altered that position our child is happier, calmer, more curious, learns easier and is more confident. There are still bad days but we work on those.

1:50 PM  
Anonymous Anonymous said...

Everyone - Thank you for your comments. Despite the confusion and frustration (on my part), I appreciate you all taking the time to tell me your views.

I must say, I thought ABA was the answer but after reading these comments, I'm beginning to question it. Did I mention I'm confused? :)

Bonnie - I know that the dreams I had for my son may or may not have come to fruition. But I think every parent would agree that when their children are born they envision certain possibilities taking place in the future. And I'm not saying that just because my son is autistic that he won't get married or play soccer (a family tradition), but when he was first diagnosed, I assumed those dreams were over. I now realize that autism is not a death sentence. The dreams I have now are so different though...right now I dream of the day when my son will (hopefully) talk. When he can say Mommy or tell me that he loves me. When he can tell me when he's sick, hungry, tired, happy or sad. When he can understand a simple command like - bring me the blue ball. Those are my dreams now.

I'll stop stirring up drama on your posts now Estee. Thanks for taking the time to answer my questions.

2:07 PM  
Anonymous Camille said...

Sorry, coming to this late. It's nice to see the give and take here.

I just wanted to add what I think is part of the source, if not THE source, of the confusion over "acceptance" supposedly meaning "neglect".

Lenny Schafer deliberately set out to demonize the beliefs of autistic adults when he realized that we weren't on board with his way of seeing autism, that we had cogent lines of reasoning that opposed his effectively. Instead of trying to accomodate our view, he attacked it with lies (I think he knew he was lying). He's said multiple times in his newsletter that autistic adults are mentally ill or evil rather than autistic. He says we have no say in this even if we have autistic kids of our own. I think that those who repeat, "acceptance is evil" "acceptance is neglect" are actually repeating Lenny Schafer, or they are repeating someone else who is quoting Lenny Schafer, you know, like 6 degrees of separation from Lenny Schafer....

I don't think that there is anything inherently scary in the idea of "acceptance" and yet so many parents seem to go immediately on the defensive when they hear it... if I am right, Lenny's plan to discredit autistic adults is working.

4:28 PM  
Blogger so much for mercury said...

Hi Anonymous,

I thnk you are on the right track, and I completely understand how you feel/have felt about the autism diagnosis.

I come from a somewhat different background, but even so, my reactions somewhat mirrored yours. But I have some personal history with "shattered parental dreams" myself. While I may or may not be "autistic" (I don't bother pursuing it anymore because I am now a successful, married, professional adult), I was acutely aware of the disappointment my father, in particular, felt when I just didn't get into sports like he expected me to, and when I failed to be socially adept. And I can assure you, my father's disappointment in those failings was the last thing I needed, in those darkest days of bullying and depression I lived through in adolescence. What I needed then was my father to be a friend, and to understand what I was going through, even if I couldn't. And to his credit, he mostly did. But not without first letting slip the disappointment. And that's all it took for me - one slip, and I remembered it forever.

So I, for one, do believe it is crucially important for every parent to fully accept their children for who they are, let alone the parents of autistic children. Moreover, that acceptance must be 100% - the parents should be the child's strongest ally in the world. But just as importantly, I also believe the parents should do everything they can to help. If the services that are available today for Asperger's Syndrome had been available when I was a kid(such as conversation skills & maintaining friendships), I would certainly have appreciated the help. But I would not have appreciated therapies or drugs that would have affected my mind or my "special interests", which really were the only things that gave me any enjoyment out of life for many years, and were the very things that led me to develop the skills that enabled my present level of success and happiness.

5:32 PM  
Blogger Ian Parker said...

I don’t view acceptance as meaning ‘neglect’ or ‘do nothing’. I also do not interpret it as the opposite of ‘treatment’, although my interpretation of others’ use of the word is that they do see the two as opposites.

I’m not convinced that all autism is entirely naturally occurring. I’d suggest that while there is pretty clear mainstream evidence that autism has a strong genetic component, there are cases, perhaps many, in which something else is also required (and just to be clear, I’m not saying that this ‘something else’ is a vaccine). If correct then for these cases autism may be a part of who one ‘is’, but it is not necessarily part of who one was meant to ‘be’.

It further suggests, at least for these cases with an exogenous component, that investigating and potentially treating autism is not automatically violating one’s natural neurological state of ‘being’, but is rather an attempt to return to that natural state. Note that this is not an endorsement of any and all treatment options as being valid, effective, or ethical.

My 2 ¾ year old daughter is autistic, and I accept her unconditionally. I have no issues with autism as a different cognitive approach to the world. As I interpret it, cognitive differences per se are not even part of the DSM-IV criteria. My issues are with the difficulties that my daughter faces that are part of the DSM-IV, plus sensory integration issues that are not part of the criteria. It is this collection of issues that we are working to overcome. (For the record, we do not interpret stimming as an issue, but rather as a means of adjustment and communication.) We do not describe these issues as devastating or in any pejorative terms, but we do help her learn to deal with them, through many of the same means that others are using, e.g. PECS, speech (I prefer “communications”) therapy, OT, etc. Our daughter also does IBI five mornings a week, but a) this is called ‘school’, not therapy, b) does not use or ration food as a reinforcer, c) does not “drill” our daughter, d) does not use aversives, e) has the teaching of PECS and communications as a major focus, and f) is in no way even remotely aimed – by us or her teachers - at enabling our daughter to ‘pass’ as NT.

I like Kyra’s comment on Monday’s blog:

“i've said it before and i'll say it again, it is entirely possible to love and accept and still try to change. the issue is more about where the desire to change (help a child grow) comes from: fear and the need to fix to relieve the fear? or love and the need to provide for a future which is truly unknown and wide open.”

6:39 PM  
Anonymous jparker624 said...

Estee,
I have just recently discovered your blog and enjoy it immensely. I am a parent of a 16 year old autistic son and have spent 13 years advocating his differences and defending my parenting choices. I think of myself a neurodiversity type even though if they had a club, they’d probably kick me out for some of my beliefs on vaccinations and scientific validity.
Anyhow, what I want to say regarding this particlar topic is that when a brain is wired to perform differently and lining up cars, trucks or trains and spinning shiney objects all day appears fun, fascinating or calming – why is that tragic? Is wanting my child to sit aimlessly in front of a televison all day better? So many parents that advocate for that certain form of therapy that touts a 40 hour work week because of it’s scientifically proven mantra (I ask where are the child labor law enforcers) seem to believe that what a neur-different brain does is aimless and useless. I just have always felt that my child was accomplishing something with his form of play. He would spend great lengths of time lining up his toy trains and rolling them past his eyes. What I noticed is that he was enjoying himself, meeting milestones appropriate for him and not acting like anybody else his age. Now I will admit having a child that has differences has its challenges but I work everyday to alter my insecurities about his differences.
I have always supported and accepted my child for who he is. ( Can I exclude the teen years with that sullen teen attitude) Any time I can help him be the best he can be, I help. Which is why we deligently and to tremendous gain, worked with speech therapists, an occupational therapist that should rule the world, a Homeopathic doctor that taught me more about acceptance and joy than I could have ever hoped for. All help and support, therapy if you choose to call it that, has been fantastically helpful. Not to cure, but to enhance and help.
But the conclusion that I have reached is that it all boils down to parenting types. Just as some parents believe in corporal punishment or church every Sunday or sports to enhance character, homeschooling to promote love of learning, allowance to use for fun or allowance to save for special purchases. So to do we parents with autistic children have our believe system such as only floor play is best or ABA is the proven way to help or being normal is essential and to attempt chelatan therapy, etc, etc, etc.
I believe deeply that to cure autism is to hurt human kind. Autism is essental to us all and in fact I believe that a continuum of autism exists within us all. To me it is essential that we save autsim for the sake of saving human kind. But I know that people think I am a freak for such thinking and as long as people can’t accept the differences that our existance needs to thrive, we should at least make sure that all children in this world are safe and well tended. Including autistic children who have fallen prey to therapists who preyed on vulnerable, loving caring parents attempting to do what they think is right. Parenting styles will always be different and there will always be parents that will want their children to fall into a normal continuum. So let’s accept that and try to regulate predatory therapies claiming cures, scientific purity, metal reduction, etc., etc, etc.
Thanks for a great and thoughtful blog and kudos to all.

7:04 PM  
Blogger Estee Klar-Wolfond said...

Anonymous,

No drama stirred -- you raised really important issues that keep my mind reeling. I am trying so hard to look at all the angles, including my own experiences, how they have shaped my views, my bias', my parenting style with or without a child with autism, if I am too hard on my "friends" or if my expectations of them are too high considering they are untouched by all of this, how we impose our ideas of perception, even, in the way we interpret our children and what "therapies" address this...it's a difficult topic that needs our constant dialogue about our presumptions, history and ideals, and credible scientific research.

I am a drop in the pond in this dialogue and there are times when I wonder if I should just take a break and concentrate on Adam. Then, a few hours later, I feel all this continually beating at my door and realize that there is something I must still go and find out, question.

Thank you, anon, for your "drama," as you call it, not I. And thanks to everyone who raised so many interesting points to mull over some more.

8:37 AM  
Blogger Kev said...

jparker I really enjoyed your comment - I wouldn't blackball you at the mythical Neurodiversity club just because you probably have a different opinion than me on vaccinations :o)

My main issue with some parents attitudes to vaccinations is where that belief takes them (chelation, lupron, vitamin a injections etc etc). I'm on record as saying its a good thing that thiomersal isn't in 99% of vaccines anymore. As ballastextienz once said: neurodiversity is not the opposite of Biomed.

"I am a drop in the pond in this dialogue and there are times when I wonder if I should just take a break and concentrate on Adam. Then, a few hours later, I feel all this continually beating at my door and realize that there is something I must still go and find out, question."

Well, there's two ways of approaching that. Spending time with one's children is the chief joy of life IMO. However, its a fact that we, as parents, need to advocate for our kids rights to be and for their right to feel perfectly fine about who they are and how they present. I flatter myself that my blogging helps my child. many of my web developer colleagues have told me that they'd had no interaction with autism at all until they read my blog.Hopefully, the next time they see someone making assumptions or pushing negativity on the diea of autism they'll feel empowered to challenge it and that in turn will create more acceptance for our children to grow up into.

9:37 AM  
Blogger Kev said...

Also, I'm a really poor typist.

9:44 AM  
Blogger Estee Klar-Wolfond said...

Kev,

Yes, advocacy comes with the territory of having an autistic child. A parent doesn't expect that initially. This is why I too, write in a blog.

10:35 AM  
Blogger r.b. said...

I had a different insight today, and I'll tell you why. I could never put this on my blog, because I couldn't hurt my family.

We have a lot of "little professors" in my family. We have late talking children, vacuum obsessers, hyperactives,hyperlexics, depressives...but somehow just a couple have recieved labels...those that didn't move fast enough away from psychiatrists, I guess (I SAID THAT TONGUE IN CHEEK!)

I'll tell the truth, I became obsessed with autism the day I accepted the label for my son. I had to have made him feel bad, all that worrying and obsessing, and truthfully...I saw the autism and not the kid. The day before, he was my sweet little buddha, the day after, his autism became my crusade. I was gonna "save" this child from autism...

But, actually, there is little difference between autism and high intellectualism. My Godson is the one who obsessed over vacuum cleaners. He is somewhat lonely, mainly because he doesn't have many compatriots at school with a 97+ average. He is looked upon as a leader...His mother did NOTHING for him but love him and encourage him. NOTHING.

Sometimes I wonder if I could go back, if I wouldn't have forgot all about the "cures", and been better off. It's just something to think about.

4:43 PM  
Blogger Estee Klar-Wolfond said...

I think about that ALL THE TIME. So many adults with autism received NO TREATMENTS AT ALL. Also, the "minds" you speak of especially did not. I think the idea of treatments often convolutes everything and only puts a lense over the way we view our children. At the same time, we leave in a culture of treatments for everything, so this option of doing nothing but "love" your child, seems reprehensible and even irresponsible by some parents, and leaves other parents not knowing which way to turn....CONFUSION ABOUNDS!

5:14 PM  
Anonymous Anonymous said...

A relative who is AS received no treatment and, perhaps due to difficulty in social interactions that might have been addressed in treatment, was both nearly raped and then got into an accident leading to amputation.

6:06 PM  
Blogger r.b. said...

Thanks...I should have known anybody with the words joy and autism in their blog wouldn't be typical.

I think rape says more about the mental health of the rapist than the victim, but that's just me, anonymous.

8:56 PM  
Blogger Estee Klar-Wolfond said...

I have the same thoughts about the mental health of the rapist as r.b.

Thanks for not calling me typical. That would be boring ;)

9:03 PM  
Anonymous Anonymous said...

what about the amputation?

9:05 PM  
Blogger jypsy said...

I want to answer this one:
I wonder how you felt in the first six months to a year after your son was diagnosed? Did you accept it immediately? Consider it a "joy"? Or did you try to figure out what may have caused it and researched ways to be rid of it?

I accepted it immediately without any difficulty.
I'm not sure "joy" was the word, "honour", "reality", "life"....maybe? I have never considered it *anything* that had a negative connotation.
I don't think any of my years of research was ever aimed at discovering the cause & certainly none done to find ways to get "rid of it".

5:11 AM  
Blogger Estee Klar-Wolfond said...

Anon,

The amputation story is very sad. I can't comment. I don't know the circumstances or if you were implying that one was the result of the other (rape or autism?).

7:43 AM  
Blogger ballastexistenz said...

I have commented on my own blog.

The gist of the entry is that if the vulnerabilities of autism are blamed for everything bad that happens to autistics, then we ought to examine the vulnerabilities of non-autistic people. And then, from there, see if they want to become more autistic to erase their (massive) vulnerabilities that could themselves lead to emotional or physical injury or death, and do lead to those things all the time (yet they're never said to be "because the person had NT disorder" or something, so people don't think of them that way).

Just as an example, non-autistic people frequently don't perceive things they're not expecting to perceive. Think for a bit about how the unexpected could injure or kill someone that way. Happens all the time. We don't try to make people autistic to prevent it.

2:46 AM  
Blogger Phil Schwarz said...

Beautiful essay, Estee, and *great* discussion.

What struck me among the things Anon said was:

"And joy...I will never find "autism" joyful. It was a devastating diagnosis for us to hear. All of the dreams we had for our son vanished. The long work towards helping him to lead an independent life seemed exhausting."

Anon, please read Jim Sinclair's landmark essay "Don't Mourn For Us" (http://www.ani.ac/dont_mourn.html). It was one of the seminal pieces of writing that turned my perspective around as a parent new to our son's autism diagnosis, a year after it was written.

The critical thing is to learn how to be open to new dreams, and how to resist the mainstream's implicit judgement that such new dreams are lesser.

And to throw "Normal" out the window. To repudiate the mainstream's implicit power to dictate timetables and norms to us.

It took our son a few years to acquire reliable speech. If he had not been on his way to doing that, we would have focused on getting him alternative reliable means of communication, whether keyboarding or something else, as quickly as possible. We paid great attention to leveraging his receptive speech and pre-reading skills, and although he is not a fluent ("at grade level") reader, he reads reliably and functionally.

If it takes our son eight years to graduate high school, so be it. If it takes him many years to complete the postsecondary education he needs in order to make a living doing something he enjoys doing, so be it. If it takes him into his 30s to be able to live in a safe, long-term, maximally autonomous living situation apart from us, so be it. One way or another, we will find a way for him to do what *he* wants to do with his life, to the best of his ability, as an adult.

That is the essence of our new dreams. And achieving them -- sometimes over the dead bodies of old ideas and recalcitrant opposition -- is just as good a challenge and just as sweet a victory as achieving "success" by the mainstream's standards.

12:43 PM  
Blogger Wendy said...

I've already come out of the woodwork and explained to Estee (in an email) why I chose to remain anonymous. Ironically, it was to stay on good terms with the blogging autism community. I never expected to receive such wonderful feedback and no one turned my comments into a controversy...and for that I am very grateful. Everyone has really opened my mind and helped me to understand quite a few things that I have been confused about lately. So, thank you everyone. I plan to cut and paste this whole discussion for my husband to read...and for me to read again. I think it would be good for me to read when I'm feeling down.

Wendy

7:26 PM  
Blogger Estee Klar-Wolfond said...

Wendy and all,

So glad this discussion has been fruitful. I've been away so I haven't been avoiding this.

Wendy, I hope you received my emails!

2:28 PM  

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