Autism Speaks is an organization devoted to funding and lobbying aimed a finding a cure for autism and/or finding genetic markers that would allow fetuses with autism to be aborted before birth. At an Autism Speaks event, Hillary Clinton said that we need to, "cure or prevent anything along the autism spectrum." I wrote the following long-winded diatribe to explain to a friend why I think Hillary Clinton is wrong, but it also sums up a lot of my thinking about autism and how we react to it.
Autism is a collection of related traits. They can each be present to differing degrees. Like most traits, depending on circumstances, these traits can cause difficulties, or be advantageous, or both. For example, most autistic people have a propensity to abnormally high levels of focusing and concentration. This can result in great pleasure and great achievement, but it can also cause social difficulty and get in the way of being what we like to call a well rounded individual. Other traits include a higher than average perceptual sensitivity, which can result in both great distress and great awareness. Most autistics have an unusual way of processing language, and many autistic people have trouble talking, but there are also many who excel at it and some great autistic poets. As with handedness and sexual orientation, to give just a few examples of
easily noticeable traits of the same general class, these traits are underpinned by hardwiring in the brain.
I would expect these differences to take the shape of a larger or smaller concentration of a particular type of neuron in a particular part of the brain, or a difference in neuron length, or a physical difference in tissues that up-regulates or down-regulates certain types of signaling. I am fairly sure that several different differences result in similar traits, so autism can be caused by
different types of wiring differences.
These traits may also be co-present with other traits, such as those we label as ADHD, OCD and various cognitive impairments as well as those we label as drive, talent, genius, etc. and all the other run of the mill traits such as laziness, heterosexuality and what have you. However, it is particularly worth noting that what we are currently calling autistic traits often show up together with what we tend to see as mental or intelectual impairments. My guess is that they often share common causes. For, for example, the same wiring difference that produces intelectual impairments may also produce autistic traits. At the same time, a person can also be very intelligent and very autistic, reinforcing the idea that there are most likely many causes of autism.
Some people take it for granted that autism is always a bad thing, but I cannot agree. Famous people on the autistic spectrum include Steven Spielberg, David Byrne, Bill Gates and, though he lived too early to have a psychologist say so, almost definitely Albert Einstein. It is unlikely that these people would have been who they were or achieved what they achieved without their autism. Many autistic people have wonderful lives because, in part, of the great pleasure that their autism allows them to take in things that non-autistic people might find boring. Science is the classic example, but it is certainly not limited to that.
Some say that the social problems that these folks encounter, especially as kids, outweigh any positive effects, and therefore they would not wish it on anyone. I think a good analogy is homosexuality. If you are gay, you are going to have a more difficult (or at least more complicated) time, especially as a teenager. But that does not make me want to say that we need to find a cure for homosexuality.
I don't think that anyone thinks that being autistic presents no problems, though I do think that we often go overboard in pathologizing differences. Having problems is part of life and just because people with some traits may need help in specific areas, it does not follow that we should seek to eradicate those traits. Left handed kids often need extra help with handwriting as well as requiring specially strung guitars (except Hedrix, of course). Should we abort left handed fetuses? Jocks tend to suck at poetry. Do they need to be cured, or will education -- and where that reaches its limits, acceptance -- suffice?
I am a died in the wool social liberal (but a fiscal conservative with libertarian tendencies, in case anyone was interested) and I think that mothers should be legally able to abort on any grounds. So when I say I am against eugenics targeting autistics, I don't mean that this should be illegal. If parents are aborting because it turns out the kid is going to be blond, and they wanted brunette, that would be legal, but I'd say they were acting badly. When deciding whether screening for traits such as autism is acceptable, it might be useful to ask ourselves, if there were a prenatal IQ test, would we use it? What would be our cut off? Would let our kids grow to term with a projected score of 100+, or hold out for 120? What about tests for height, breast size, lung capacity, early cancer, etc. Would we favor all of those, or would we say que sera sera?
It's a matter of what we consider acceptable. And people in Autism Speaks in general, and Hillary Clinton is specific, do not see having an autistic child as acceptable.
But it's not so much the the actual eugenics that causes problems, it is the implication. If you say, as Hillary does, that we should "prevent anything along the autistic spectrum," then you are saying that it would have been better if no one on the autistic spectrum had been born. How much importance do we attach to those who society says would be better off dead? How likely do you think we are to respect the rights of those who we say do not even have the right to live?
As for the issue of cure, it's a false issue, but one which presents very similar problems. I say that it is a false issue because, not only is there currently no cure for autism, but there will never be a cure for autism. You will get cures for a number of discrete conditions that also cause autism, you may also get pharmaceuticals that make certain things easier for many people with autism, but you'll never get one pill that removes all autistic traits from everyone who has them. You cannot rewire the brain with a pharmaceutical. But the idea that such a cure is possible (and the folks at Autism Speaks, who have as much understanding of science as John Kerry has of showmanship, are actively promoting this idea) is in itself damaging.
The thing is that you then see the autistic individual as a "person with autism." That is, you see them, not as a person whose personhood includes various traits, but as a person whose true personhood is obscured or hijacked by a disease. The autistic traits, which are now seen as parasitic, are repressed and given no respect. So, "look at little Johny, he is totally into dinosaurs, he knows more about them than anyone in the school," becomes, "Johny has a dinosaur fixation. Hopefully he can be cured at some future date. In the meantime, be sure not to encourage it."
Another sad fact is that many of the parents of autistic children who are involved with Autism Speaks also engage in a wide range of quack cures. Rather than say, "This is our kid, how can we help him to make the most of who he is," they say, "A disease has kidnapped our kid. We've got to cure him now!" They are not willing to wait until the cure is available in the drug store. Some of the stuff they do is fairly harmless diet based stuff. Other quackery is more dangerous and a number of kids have been killed by it. The real damage is, however, that each time these parents see their kids grow up, make progress and master things that they could not do before, the credit goes to the quackery. How sad for both the kids and the parents. Of equal concern is the fact that, having only limited resources, parents who listen to Autism Speaks may spend those resources (money and time) on quackery rather than education. So instead of two hours of speech therapy a week, the kid gets twenty sugar pills a week at ten bucks a pill. Instead of signing up for a special needs summer camp, they sign up for a two month hyperbarric treatment program.
Now, when people hear about the autistic community rejecting the notion of a cure, it is often assumed that they mean that nothing should be done to help autistic people have an easier time of it, and realize their full potential. Nothing could be further from the truth. Those who see autism as traits are usually also those who see the greatest potential in autistic folks, and who focus on the positives. These people, having high expectations of autistic people, tend to provide more opportunities for growth. Those who see it as a disease that we need to wait for a cure for, are more likely to have low expectations and to focus on managing autistic people as they are.
The bottom line is that the folks at Autism Speaks don't like autistic people. They want to rid the world of them. That's not cool.
Monday, February 11, 2008
Saturday, January 19, 2008
Less alarming alarms
I'm the waker-upper in our house. My wife could sleep the clock around so it's up to me to get everyone up. Usually this is not a problem, but I have been known to be a little behind schedule in the wakeup calls, especially if the papers bear particularly engrossing news in the morning and I forget that I have a family to wake. Once, a few weeks back, I even slept in, and MK was late for school as a result.
As a fan of routine, rules and order, MK has voiced his dissatisfaction, at various times about my slipshod performance. But when we have suggested that he get an alarm clock he has always refused and retracted all his complaints. Last week we pushed him on the subject and he let us know that the reason he did not want an alarm clock is that they are -- oh, yeah -- alarming. He has a point. If it's hard to integrate sensory stuff like that when awake, how much more shocking would it be to have a buzzer go off when you are asleep, unsuspecting and unprepared.
With a little hunting we found a technological work around -- an alarm clock that plays sound effects instead of buzzing a buzzer. MK opted for the birdsong sound effect. It was a bit loud in his opinion, so we taped cardboard over the speaker (reminding me of how I would have to dismantle all of this toys when he was a tot, so as to find and snip the speaker wires) and the end result is suitably subtle.
I guess this would count as adaptive technology of the very lowest order but now, at least, MK no longer has to rely on the vagaries of his father's coffee and newspaper routine.
As a fan of routine, rules and order, MK has voiced his dissatisfaction, at various times about my slipshod performance. But when we have suggested that he get an alarm clock he has always refused and retracted all his complaints. Last week we pushed him on the subject and he let us know that the reason he did not want an alarm clock is that they are -- oh, yeah -- alarming. He has a point. If it's hard to integrate sensory stuff like that when awake, how much more shocking would it be to have a buzzer go off when you are asleep, unsuspecting and unprepared.
With a little hunting we found a technological work around -- an alarm clock that plays sound effects instead of buzzing a buzzer. MK opted for the birdsong sound effect. It was a bit loud in his opinion, so we taped cardboard over the speaker (reminding me of how I would have to dismantle all of this toys when he was a tot, so as to find and snip the speaker wires) and the end result is suitably subtle.
I guess this would count as adaptive technology of the very lowest order but now, at least, MK no longer has to rely on the vagaries of his father's coffee and newspaper routine.
Friday, January 18, 2008
I have to say it
I am pretty sure that many people will not like me for saying it, but I have to say that I am greatly disturbed by the blogosphere's handling of the Katie McCarron tragedy. A woman killed her daughter. Sadly, it happens quiet often. There are several hundred cases of filicide each year in the US. One person killing another is always a miserable business, but in the case of a parent killing a young child, it is particularly horrific and always indicative of deep mental disturbance. I don't mean to say that the legal standard for insanity (which is to say, lack of responsibility) is met, but in almost all cases the perpetrators are mentally ill.
Because, in this particular case, the motivation for the crime was the fact that the victim was autistic, much of the autism community has taken it up a cause célèbre. My perception is that the perpetrator has become a stand-in for all those who see autism as a disease to be eliminated, rather than a grouping of traits to be understood and respected. This is not a legitimate substitution. The level of vilification clouds the issues and makes it harder communicate with the supporters of associations such as Autism Speaks at a time when communication is very important. Further, by treating filicide as an extension of a common (and I believe misguided) approach to raising autistic children, the act is given a perverse legitimacy and brought within the realm of the conceivable. That is not beneficial. It adds to hysterical thinking, which we already have too much of in relation to autism.
To be frank, and more psychological (or, if you prefer, spiritual) than political, I feel that focusing excessively on such unnatural acts is unhealthy for us as individuals and as a community. There can be, for me, no celebration, no satisfaction, and indeed no justice when a child is killed. The situation is beyond repair. There can only be sadness.
I know that my views are not representative of society at large or the autistic community. It is normal that philosophies differ. That said, I encourage my fellow bloggers to move on from this tragedy without unnecessary public lingering. The blogging community is part of an important battle ground for public opinion on autism. This was recently shown by the success in changing the NYU Child Studies advertising campaign. It is ongoing in regard to the Judge Rotenberg School. There is much to talk about, let's get on with it.
Please note that, while I felt that making my opinion known was worth the risk of perhaps loosing the respect of some of my friends, I have no desire to engage in debate nor certainly to start one. I have, therefore, turned off the comments for this post.
Because, in this particular case, the motivation for the crime was the fact that the victim was autistic, much of the autism community has taken it up a cause célèbre. My perception is that the perpetrator has become a stand-in for all those who see autism as a disease to be eliminated, rather than a grouping of traits to be understood and respected. This is not a legitimate substitution. The level of vilification clouds the issues and makes it harder communicate with the supporters of associations such as Autism Speaks at a time when communication is very important. Further, by treating filicide as an extension of a common (and I believe misguided) approach to raising autistic children, the act is given a perverse legitimacy and brought within the realm of the conceivable. That is not beneficial. It adds to hysterical thinking, which we already have too much of in relation to autism.
To be frank, and more psychological (or, if you prefer, spiritual) than political, I feel that focusing excessively on such unnatural acts is unhealthy for us as individuals and as a community. There can be, for me, no celebration, no satisfaction, and indeed no justice when a child is killed. The situation is beyond repair. There can only be sadness.
I know that my views are not representative of society at large or the autistic community. It is normal that philosophies differ. That said, I encourage my fellow bloggers to move on from this tragedy without unnecessary public lingering. The blogging community is part of an important battle ground for public opinion on autism. This was recently shown by the success in changing the NYU Child Studies advertising campaign. It is ongoing in regard to the Judge Rotenberg School. There is much to talk about, let's get on with it.
Please note that, while I felt that making my opinion known was worth the risk of perhaps loosing the respect of some of my friends, I have no desire to engage in debate nor certainly to start one. I have, therefore, turned off the comments for this post.
Wednesday, January 16, 2008
Books and Bookish Things
MK is 12, but I still read to him before bed. Actually, it is more accurate to say that I read with him before bed. He likes to keep his eyes on the text and correct me if I misread something, but mostly he likes to comment and discuss. It can often take fifteen minutes to get through one page, as we stop three or four times to discuss motivation, ramifications and a host of tangential facts. It has always been the case that MK is at his most loquacious, and is most interested in, and capable of, narrative, at the very end of the day. For years, 80% of the things he said in a day were said in the 30 minutes before sleep. I have no idea why this is. Nowadays he can wax talkative at all times of the day -- though not reliably -- but the before bed slot is still special.
Recently, MK and I read The Thing About Georgie. It's a pretty good read. One of the things about Georgie is that he is a dwarf -- by which I don't mean that he is a fairly tale creature, but that he is affected by dwarfism. It good story about being in the fourth grade, learning to share affection and making new friends. It's also a story about being a kid with a handicap and how that makes Georgie feel about himself and his place in other people's eyes. There are no saccharine ugly-duckling moments. Georgie just gets on with life, faces the same obstacles as other kids, as well as some unique to dwarfs, and gets over enough of them that everyone is feeling good about life by the end. It's interesting to talk to MK about this different kind of disability. He sure does give good advice when its for someone else.
Now we are on to Elijah Of Buxton, which is actually a bit hard because it is written in dialect, so it's not ideal for folks with language issues, but MK so loved Christopher Paul Curtis' other books, The Watsons Go to Birmingham - 1963 and Bud, Not Buddy, that we are sticking with this one, dialect and all.
We also read a little bit of non-fiction (usually just ten minutes) before bed. We did a kid's atlas a while back, which was good for all kinds of discussion. As an offshoot, MK has now moved on to memorizing what he considers to be the most pertinent facts from the CIA World Factbook. Other than flags, the most pertinent facts are the populations of the countries and languages spoken there. He seems to be very concerned as to whether or not English will turn out to be a good language to have learned. It's an obvious worry that it is only the third most popular language on the planet, and so MK is constantly looking for more information that reassures him that English alone is enough to get by in most places. It's something like how buyer's regret can cause us to spend all kinds of time looking up expensive products we just bought so as to convince ourselves we haven't shelled out for a lemon. He can tell you every place in which English is an official language (there are a lot more than I ever imagined that use it for at least one of their official languages) as well as those places where it is widely spoken. Did you know, folks, that only 89% of the US population actually speaks fluent English. Meanwhile, French, which all good little Canadians are forced to study, is only spoken by 23% of the people. This laughably small percentage has led MK to suggest that, when he grows up, he will work towards having it banned. I think I felt the same way at his age.
Currently our non-fiction book is The Kids Book of World Religions, which is a very good read, even for non-kids.
At the adults-only end of the spectrum, I recently read The Curious Incident of the Dog in the Night-Time, which was very good, but I felt that, if you already know about autism, it can be a bit like reading a tourist guide describing the place you grew up in -- nice, but a bit obvious and oversimplified in places. I read his other adult book (A Spot of Bother) first. I think it is much better. I really enjoyed that.
In among all this book reading, I have actually started writing again. At various times in my life I have put my hand to a fair bit of fiction (though I have never tried to get published). I was too distracted to do any for the past few years, but recently, with things on the home front going so smoothly, I find my enthusiasm rekindled. I even joined a writers group here in my new city and went to my first meeting tonight.
Recently, MK and I read The Thing About Georgie. It's a pretty good read. One of the things about Georgie is that he is a dwarf -- by which I don't mean that he is a fairly tale creature, but that he is affected by dwarfism. It good story about being in the fourth grade, learning to share affection and making new friends. It's also a story about being a kid with a handicap and how that makes Georgie feel about himself and his place in other people's eyes. There are no saccharine ugly-duckling moments. Georgie just gets on with life, faces the same obstacles as other kids, as well as some unique to dwarfs, and gets over enough of them that everyone is feeling good about life by the end. It's interesting to talk to MK about this different kind of disability. He sure does give good advice when its for someone else.
Now we are on to Elijah Of Buxton, which is actually a bit hard because it is written in dialect, so it's not ideal for folks with language issues, but MK so loved Christopher Paul Curtis' other books, The Watsons Go to Birmingham - 1963 and Bud, Not Buddy, that we are sticking with this one, dialect and all.
We also read a little bit of non-fiction (usually just ten minutes) before bed. We did a kid's atlas a while back, which was good for all kinds of discussion. As an offshoot, MK has now moved on to memorizing what he considers to be the most pertinent facts from the CIA World Factbook. Other than flags, the most pertinent facts are the populations of the countries and languages spoken there. He seems to be very concerned as to whether or not English will turn out to be a good language to have learned. It's an obvious worry that it is only the third most popular language on the planet, and so MK is constantly looking for more information that reassures him that English alone is enough to get by in most places. It's something like how buyer's regret can cause us to spend all kinds of time looking up expensive products we just bought so as to convince ourselves we haven't shelled out for a lemon. He can tell you every place in which English is an official language (there are a lot more than I ever imagined that use it for at least one of their official languages) as well as those places where it is widely spoken. Did you know, folks, that only 89% of the US population actually speaks fluent English. Meanwhile, French, which all good little Canadians are forced to study, is only spoken by 23% of the people. This laughably small percentage has led MK to suggest that, when he grows up, he will work towards having it banned. I think I felt the same way at his age.
Currently our non-fiction book is The Kids Book of World Religions, which is a very good read, even for non-kids.
At the adults-only end of the spectrum, I recently read The Curious Incident of the Dog in the Night-Time, which was very good, but I felt that, if you already know about autism, it can be a bit like reading a tourist guide describing the place you grew up in -- nice, but a bit obvious and oversimplified in places. I read his other adult book (A Spot of Bother) first. I think it is much better. I really enjoyed that.
In among all this book reading, I have actually started writing again. At various times in my life I have put my hand to a fair bit of fiction (though I have never tried to get published). I was too distracted to do any for the past few years, but recently, with things on the home front going so smoothly, I find my enthusiasm rekindled. I even joined a writers group here in my new city and went to my first meeting tonight.
Saturday, December 22, 2007
I can do this!
Last winter, one of the few bright spots in my life was skiing with MK. We'd just moved to a new city where the teachers had decided to reenact the 1950s, and nearly every day in their period-piece involved the new kid crying. There were also meetings in which people who had found their Teaching Certificates at the bottom of cereal boxes told us that MK (who had got all As and Bs in his last school) could not be taught in "a classroom setting," and certainly could not be given marks of any sort. He couldn't even be given a gentleman's C in gym, because he "cowered" when people threw balls at him and his teacher was only trained in teaching gym to "normal kids."
I must admit that our adventures in skiing did not start off particularly smoothly. I know that they do offer adaptive lessons for folks with developmental differences, but MK was understandably not up for learning anything from strangers at that point so, after 20 years away from the mountains, I became a ski instructor.
The first day was spent demonstrating that the rope-tow is a stupid invention and discovering that it is possible to slide down a hill on your bottom, even if pieces of fiberglass have been attached to your feet. The next time out we went further afield to a hill that had a magic carpet, which is sort of a flat escalator that you ride on, skis-and-all, so that novice skiers can be moved up the slope in much the same way as travelers are moved between terminals at airports. This was a definite improvement, but it did not change the fact that MK had to negotiate a sloping ice-field on long slippery sticks, using nothing more than the poor coordination and dyspraxia he had inherited from his father. On top of this his "instructor" had no memory of how people actually lean how to ski. What I can tell you is that it is surprisingly difficult to keep one's own balance when locked in a bear-hug with a sliding eleven-year-old.
When we had thoroughly exhausted ourselves, we retreated to the lodge where, having been in unusually close contact with the actual snow for most of the past few hours, we both found ourselves suffering from post-nasal drip. After taking care of my own nose I started walking MK through his paces for this activity. I had to explain about unfolding the Kleenex, positioning it, closing one nostril, blowing, wiping, switching nostrils --- you know the drill. And while I was doing this, with the odd bit of manual intervention, I noticed a girl of about MK's age watching us with her mouth agape. I could read what was written in the thought-bubble over her head: How could it possibly be that this grown boy did not know how to blow his own nose?
Her unspoken question resonated with me, and brought up another one: What kind of idiot tries to teach his son to ski when he has not yet mastered nose blowing?
At that point, I knew in my heart that I should relinquish my unrealistic expectations and stop torturing the boy. But I had said that we would have another crack at it after our hot chocolate, and it would have seemed weird not to do that, so we zipped up and headed back to the magic carpet. As we rode up the hill, I explained the "snowplow" technique in detail -- something I had omitted from our lessons so far -- and pointed out the kids who were making use of it. And that was it. MK got off at the top and snowplowed down. Then we got back on and did it again. By the end of the day we had mastered the chair lift and knew the terrain of two proper green runs.
Over the winter MK grew to be a good fast skier who was fond of jumps and even ventured down some intermediate level blue runs. It became our weekly antidote to school and, as I said, one of the few bright spots in a storm of unexpected difficulties.
Since then, much has changed. The teacher with the teaching style that I associate with straight skirts and beehive hairdos has been replaced with by a bright young man who is more interested in content than form and some very happy aides with wonderfully positive outlooks on life. MK is once again earning good marks in all his subjects and this last week made a batch of Christmas cookies for his classmates. When I asked him if there had been any left over, he replied, "Yes, and I gave them to my other friends -- the ones who are not in my class."
So things are looking pretty rosy, but there was still a special feeling yesterday as we made our first trip back to the slopes this year. We started with an easy slope in the beginners area. MK had been a little nervous and had been going on and on about his poles and how he did not remember what to do with them and how he didn't think he could ski if he had to hold them. But after we got off the chairlift and MK had cut cut his first couple of turns down the hill, he grinned and shouted over to me, "Hey, I can do this!"
For the next five hours we confirmed that this was, in fact, the case, all over the mountain.
I must admit that our adventures in skiing did not start off particularly smoothly. I know that they do offer adaptive lessons for folks with developmental differences, but MK was understandably not up for learning anything from strangers at that point so, after 20 years away from the mountains, I became a ski instructor.
The first day was spent demonstrating that the rope-tow is a stupid invention and discovering that it is possible to slide down a hill on your bottom, even if pieces of fiberglass have been attached to your feet. The next time out we went further afield to a hill that had a magic carpet, which is sort of a flat escalator that you ride on, skis-and-all, so that novice skiers can be moved up the slope in much the same way as travelers are moved between terminals at airports. This was a definite improvement, but it did not change the fact that MK had to negotiate a sloping ice-field on long slippery sticks, using nothing more than the poor coordination and dyspraxia he had inherited from his father. On top of this his "instructor" had no memory of how people actually lean how to ski. What I can tell you is that it is surprisingly difficult to keep one's own balance when locked in a bear-hug with a sliding eleven-year-old.
When we had thoroughly exhausted ourselves, we retreated to the lodge where, having been in unusually close contact with the actual snow for most of the past few hours, we both found ourselves suffering from post-nasal drip. After taking care of my own nose I started walking MK through his paces for this activity. I had to explain about unfolding the Kleenex, positioning it, closing one nostril, blowing, wiping, switching nostrils --- you know the drill. And while I was doing this, with the odd bit of manual intervention, I noticed a girl of about MK's age watching us with her mouth agape. I could read what was written in the thought-bubble over her head: How could it possibly be that this grown boy did not know how to blow his own nose?
Her unspoken question resonated with me, and brought up another one: What kind of idiot tries to teach his son to ski when he has not yet mastered nose blowing?
At that point, I knew in my heart that I should relinquish my unrealistic expectations and stop torturing the boy. But I had said that we would have another crack at it after our hot chocolate, and it would have seemed weird not to do that, so we zipped up and headed back to the magic carpet. As we rode up the hill, I explained the "snowplow" technique in detail -- something I had omitted from our lessons so far -- and pointed out the kids who were making use of it. And that was it. MK got off at the top and snowplowed down. Then we got back on and did it again. By the end of the day we had mastered the chair lift and knew the terrain of two proper green runs.
Over the winter MK grew to be a good fast skier who was fond of jumps and even ventured down some intermediate level blue runs. It became our weekly antidote to school and, as I said, one of the few bright spots in a storm of unexpected difficulties.
Since then, much has changed. The teacher with the teaching style that I associate with straight skirts and beehive hairdos has been replaced with by a bright young man who is more interested in content than form and some very happy aides with wonderfully positive outlooks on life. MK is once again earning good marks in all his subjects and this last week made a batch of Christmas cookies for his classmates. When I asked him if there had been any left over, he replied, "Yes, and I gave them to my other friends -- the ones who are not in my class."
So things are looking pretty rosy, but there was still a special feeling yesterday as we made our first trip back to the slopes this year. We started with an easy slope in the beginners area. MK had been a little nervous and had been going on and on about his poles and how he did not remember what to do with them and how he didn't think he could ski if he had to hold them. But after we got off the chairlift and MK had cut cut his first couple of turns down the hill, he grinned and shouted over to me, "Hey, I can do this!"
For the next five hours we confirmed that this was, in fact, the case, all over the mountain.
Wednesday, December 19, 2007
Yip, yip, yippy!
We did it! The NYU Child Studies Center listened and pulled the campaign. This shows, once again, that we can make change and it does make a difference what we say and do. I think that the Autistic Self Advocacy Network played the key role in this victory and they deserve particular thanks, but I was also amazed at how so many people came together with one voice over this. We should be proud of our community.
Thursday, December 13, 2007
Tick, tick, tick
I still haven't heard back from Dr. Harold S. Koplewicz (Phone: 
212-263-6205
) about the Ransom Notes advertising campaign for which he bears responsibility. I am going to be charitable (and optimistic) and guess that the reason he has not called me back is not that he is a coward, but that he has been so flooded with letters, calls, emails and petitions, that he could not possibly respond to us all. Let's keep it up. Letting them know this is unacceptable is good, but getting them to pull the campaign before it causes lasting damage has got to be the goal.
Has anyone posted a list of the staff at the NYU Child Study Center? I'm wondering if mailing them would be another way to exert pressure. My guess is that they are all good people and would be sickened by this campaign if they were aware of it.
212-263-6205) about the Ransom Notes advertising campaign for which he bears responsibility. I am going to be charitable (and optimistic) and guess that the reason he has not called me back is not that he is a coward, but that he has been so flooded with letters, calls, emails and petitions, that he could not possibly respond to us all. Let's keep it up. Letting them know this is unacceptable is good, but getting them to pull the campaign before it causes lasting damage has got to be the goal.Has anyone posted a list of the staff at the NYU Child Study Center? I'm wondering if mailing them would be another way to exert pressure. My guess is that they are all good people and would be sickened by this campaign if they were aware of it.
Monday, December 10, 2007
Ring, ring
I gave:
Dr. Harold S. Koplewicz
Phone: 212-263-6205
a call today.
He was out, but his secretary seemed willing enough to connect me, so maybe I'll get a call back. I want to ask him how I should explain the Ransom Notes poster to my son if he should happen to see it. He's a child psychiatrist, so he should be able to explain the best way to lessen the trauma that reading an add like that would cause. If you know someone on the autism spectrum, why not give Dr. Koplewicz a call so you'll be prepped on how best to help if one of these billboards come into view while you are with that person. If you are on the spectrum yourself, maybe you have some ideas you could share with Dr. Koplewicz, so he'll be ready when people like me call up asking for advice.
Dr. Harold S. Koplewicz
Phone: 212-263-6205
a call today.
He was out, but his secretary seemed willing enough to connect me, so maybe I'll get a call back. I want to ask him how I should explain the Ransom Notes poster to my son if he should happen to see it. He's a child psychiatrist, so he should be able to explain the best way to lessen the trauma that reading an add like that would cause. If you know someone on the autism spectrum, why not give Dr. Koplewicz a call so you'll be prepped on how best to help if one of these billboards come into view while you are with that person. If you are on the spectrum yourself, maybe you have some ideas you could share with Dr. Koplewicz, so he'll be ready when people like me call up asking for advice.
Saturday, December 8, 2007
Chance to Change the World
OK, this is it. Your chance to make a difference. I'm talking about the NYU advertising monstrosity. You can read about it here, here or here. You can find out how to take action here. I urge you to do so. In particular, I urge you to telephone the people in question. If you can't do that, fax them. If you are rich, send them a FedEx. Ordinary letters are good too.
Fortunately, we no longer live in NYC, but when I think about how I would explain a poster like that to my son, I get very angry indeed, because I know that there are other parents who will, in fact, have to explain these posters to their autistic kids. The people responsible for need to hear from everyone, now.
I also encourage you to make this a subject of your own blog post.
Fortunately, we no longer live in NYC, but when I think about how I would explain a poster like that to my son, I get very angry indeed, because I know that there are other parents who will, in fact, have to explain these posters to their autistic kids. The people responsible for need to hear from everyone, now.
I also encourage you to make this a subject of your own blog post.
Friday, December 7, 2007
It Just Came Out
Recently MK is more fully able to explain what he is thinking, but some things that he says just don't make sense, and when I ask about them he tends to get quite upset and say, "It just came out. I don't know why! I wish it wouldn't."
Today I left him in a video game store for a while and, when I came to get him, I came up from behind and put my hand on his shoulder.
"Sorry!" he blurted.
"What are you saying sorry for?"
"I'm not sorry for anything. It just came out!"
This was really bugging him, so I explained that it wasn't that unusual to find ourselves saying things that don't reflect what we want to say. I also mentioned that it happens quite a lot to lots of very smart autistic people. So we decided that, whenever that happens from now on, MK will just have to say, "It just came out," and we will both know what it means without him having to explain any further and we'll just completely forget it and move on.
We've tried it out two or three times since then and it's working smoothly so far.
Today I left him in a video game store for a while and, when I came to get him, I came up from behind and put my hand on his shoulder.
"Sorry!" he blurted.
"What are you saying sorry for?"
"I'm not sorry for anything. It just came out!"
This was really bugging him, so I explained that it wasn't that unusual to find ourselves saying things that don't reflect what we want to say. I also mentioned that it happens quite a lot to lots of very smart autistic people. So we decided that, whenever that happens from now on, MK will just have to say, "It just came out," and we will both know what it means without him having to explain any further and we'll just completely forget it and move on.
We've tried it out two or three times since then and it's working smoothly so far.
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