Wednesday, November 19, 2008
Here is the outcome of his efforts:
Since J's handwriting is a bit shaky, here is the translation:
"List of Ingredients"
4 cups of sugar
First find a turkey then put corn in it. then put 4 cups of sugar on it. put it in the microwave and cook it for four seconds.
Mmmmmmm.... I sure am looking forward to Thanksgiving dinner this year!
Tuesday, October 21, 2008
Aside from simply enjoying the exchanges, and from learning copious amounts about what living with autism may be like from an experiential standpoint, I have perpetually searched for meaningful things that could, hopefully, cause me to become a better parent to my son by their knowing.
Firm conclusions that are somehow specific to autism have been elusive. In fact, and as a polar opposite to the Jenny McCarthys of the world, I have found that parental approaches effective for autistic children are remarkably similar to parental approaches for neurotypical children. Be patient. Be kind. Teach in a way that is effective. Sublimate your own needs for the needs of your child. Form a supportive community. Roll with the proverbial punches. Be prepared to lose a little sleep. Maximize the fun moments, but know when to calm things down. Expect yourself and your child to be disappointed and frustrated sometimes. The list goes on, and is certainly familiar to anyone who has done their best to raise a child.
But ... there is one thing that seems to be incredibly impactful in improving the quality of life for the autistic child/person. This thing is debated from a tremendous number of angles, but in the endgame most folks agree upon its importance. This thing is communication. If I could wish one thing for all autistic people, including my own two sons who are on the spectrum, it is that they find satisfying ways to communicate that expand the boundaries of their interpersonal environments.
My oldest son is an atypical communicator. He is a boy who, upon casual observation, does not move or behave in such a way as to lead someone to believe he may not be neurotypical. But, all it takes is a brief conversation with him to know you are dealing with someone special. Community members who are strangers (ie. cashiers, librarians, friends' parents) are often "thrown off" by J's interactions - they simply don't know how to take him. Still, he communicates effectively if not typically.
My youngest son, however, is not communicating verbally. Developmentally, this is not shocking as he is only 21 months old. Lots of 21-month olds don't speak. At the same time, he is not even showing the vaguest signs of verbal communication yet. Knowing what we know about the importance of communication, we started C on a sign language program a full month before he was even diagnosed with autism. That was in July. It is now October and, guess what? Baby C is signing reliably! Only two words, but they are really important words for a 21-month old to know. The first one is "eat".
There could be no more fitting end to this post that taking Baby C's second sign and directing it right back at him:
Sunday, October 12, 2008
REINS has one simple requirement for its riders - that they experience a disability. For this reason, our middle son T has not been able to participate. No matter, as he is well known around there for his wit and shiny attitude, and loves to go as much as his older brother. His younger brother is not yet quite sure what to make of the place, but his most recent session went just a bit more smoothly that the prior ones.
It was our great pleasure this year (my company, my family) to donate the fresh flower arrangements for all of the guest tables at the Hoedown. I am fortunate enough to be in a leadership role in a company that is in the business of wholesale fresh flower distribution, and it occurred to me that providing bright, cheery flowers for the all-important, annual fund-raising event is one way that we can give back after all the wonderful experiences we have had there over the years. So for a few days leading into the event, several of my employees who have arrangement-design experience, led by their wonderful manager Leticia, prepared two different designs - one for the expensive "Sponsorship" tables, and another, smaller design for the other tables. Keep in mind that this is an all-outdoor event, western-themed, with an Autumn twist due to its occurring on October, complete with a riding demonstration by some of the students/participants. After having spent that Saturday morning working, I hopped in the big ol' work truck - loaded with fresh flower arrangements - and drove it over to the site of the event, which is right on the grounds of REINS.
With the help of Kaitlyn and Jessica - two lovely ladies who have not only taught J to ride horses but also have helped J and T with swimming lessons over two summers, and have generally become dear friends to our family - we placed all of the floral arrangements on the tables.
I must admit, they did add a certain amount of charm to the whole event.
Flowers aside, the main event of the Hoedown is the riding demonstration. I'll tell you, once the demonstration is underway, there is rarely a dry eye in the place. The lengths that some of these riders go to in order to participate here(not just for the Hoedown, but every week, all year long) is just ... inspirational.
The first rider provided a fascinating counterpoint for our family, in particular. You see, during this rider's introduction, it was mentioned that the youngest rider is under two and the oldest rider is 93 years old! Of course, the "under two" rider is our own son, Baby C. The oldest is Millie, who also has the challenge of Scoliosis. At 93, Millie is the epitome of inspiration for all us young whippersnappers who feel a little bit beat up after a long day of raising kids or conducting business.
The next rider prompted Debbie, the emcee of the riding demonstration and owner/operator of REINS, to bring us all the way back from age 93 to age 5. In spirit, anyway. This rider suffers from Progeria, and her body is already experiencing many of the physically degenerative characteristics that typical people might undergo in their 50's. And there she was, with she and her supporters encouraging her horse to a lengthy trot to finish her part of the demo. And what a great moment to experience the synergy created by an engaged audience and a rider who is so genuinely and rightfully proud of her achievement.
I realize that Hippotherapy (the benefits of riding horseback) lacks any data to support its use as a "remedy" for what ails people. We can talk about core strength and balance, we can observe the bond that develops between some horses and riders. We can call the riding routines "life skills" or "positive reinforcement". All that is predictably clinical, despite the decidedly non-clinical setting, and utterly belies our lack of imagination in understanding what really happens at REINS.
This is a community. No one gives a darn about disabilities here. Nobody is trying to cure anyone of anything. I don't think "warrior mothers" like Jenny McCarthy would find very fertile ground here for convincing people that autism is some sort of tragic circumstance. Everyone loves horses here, as well as people who may not be just like themselves. Work gets done. Funds are raised, without a lot of pomp and circumstance but with the help of the local community. Young, angst-ridden adolescent volunteers who harbor the thought of complaining about the heat and the dust are silenced by self-comparisons to people who have much more than today's climatic conditions to worry about. Adults and children alike find a deep-seated thrill in their mundane tete-a-tetes with their equine compatriots.
Even Dads who are feeling pinched by the responsibilities of raising three sons and trying to navigate a business through a difficult economic climate find reasons here to spread some Sunshine!
Monday, September 29, 2008
In this campaign, currently propagated via billboards in Newark, NJ, the following message is delivered:
Yes, that's right, this ad campaign chooses to associate autism with a frowning face in a cereal bowl. The entire ill-conceived concept is based on the ridiculous concept that drinking cow's milk causes autism.
Okay, lets begin with the "science". The brilliant minds at PETA have apparently been hearing as much as the rest of us recently in the major media about how the GFCF elimination diet can initiate a recovery from autism (hey, thanks Jenny McCarthy!). While I am not going to cast aspersion on or otherwise debate what parents will attest to as they put their kids on this elimination diet, I will take my usual position and refer you to the science. Yes, this theory has been put to the test. Here are some direct results, as well as results of some academic reviews:
J Autism Dev Disord. 2006 Apr;36(3):413-20.And of course the most recent study, which accentuates the risk of the assumed-to-be-harmless GFCF diet:
Excerpt from abstract: "Group data indicated no statistically significant findings even though several parents reported improvement in their children. "
Cochrane Database Syst Rev. 2008 Apr 16;(2):CD003498.
Excerpt from abstract: "Research has shown of high rates of use of complementary and alternative therapies (CAM) for children with autism including gluten and/or casein exclusion diets. Current evidence for efficacy of these diets is poor."
Pediatr Nurs. 2007 Mar-Apr;33(2):138-43.
Excerpt from abstract: "Dietary treatment of children with behavioral disorders has had wide public appeal and been a source of controversy since the 1920's. Yet, to date, there is little empirical evidence supporting the effectiveness of dietary restrictions in treating child psychiatric disorders, in particular, autism and attention deficit hyperactivity disorder (ADHD)."
J Autism Dev Disord. 2008 May;38(5):848-56.So what the he**, you may ask, is PETA doing? Have they gone mad? Well, we all know they were never sane to begin with and are basically just a charicature of an important socially-conscious movement. But they lead off their press release about the campaign with the following statement:
Excerpt from abstract: "Bone development, casein-free diet use, supplements, and medications were assessed for 75 boys with autism or autism spectrum disorder, ages 4-8 years ... The 12% of the boys on casein-free diets had an overall % deviation of -18.9 +/- 3.7%, nearly twice that of boys on minimally restricted or unrestricted diets (-10.5 +/- 1.3%, p < .04) .... Our data suggest that the bone development of autistic boys should be monitored as part of routine care, especially if they are on casein-free diets.
"In light of two scientific studies that link milk consumption to autism in children and a third that establishes that the Newark metropolitan area has the highest rate of autism among 14 regions studied by the Centers for Disease Control and Prevention, PETA has just unveiled in the city a brand-new billboard parodying a ubiquitous milk ad."Whoa! They sure have done their homework! Or ... have they?
It took a bit of digging to come up with the two studies they are referring to. Here is the first, conveniently linked to from the PETA blog:
Panminerva Med. 1995 Sep;37(3):137-41.Lets discuss that for a moment. Oftentimes, we hear people in the autism community with the rallying cry "Science has ignored us!" or "Let us see the science!" I hold the opinion that the scientific method is alive and well - and generously funded - in autism etiological research. It simply has not delivered clear-cut, easily digestible results to date. This study may be a good case of that. As the authors at the University of Rome state, the results are good for the formulation of a hypothesis. They are not, and the authors never claimed them to be, conclusive.
Excerpt from the abstract: "Our results lead us to hypothesise a relationship between food allergy and infantile autism as has already been suggested for other disturbances of the central nervous system."
Since the study was completed - 13 years ago - the hypothesis has been put to the test. To date, we can only say that the data do not support the hypothesis that dietary intake of casein is a causative factor in the development of autism.
Here is the second study they rely on:
Nutr Neurosci. 2002 Sep;5(4):251-61.First off, this was a single-blind study. Secondly, the control group and subject group had all of 10 kids each. The general research/treatment community was willing to set this one aside 6 years ago when it was released, so its hard to figure why PETA wants to dredge it up now.
Excerpt from abstract: "A randomly selected diet and control group with 10 children in each group participated. Observations and tests were done before and after a period of 1 year. The development for the group of children on diet was significantly better than for the controls."
Or is it?
You see, it is really quite clear what PETA is doing, and there is a word for it - EXPLOIT:
ex·ploit /ɪkˈsplɔɪt/ Pronunciation Key - Show Spelled Pronunciation[ik-sploit]
1. to utilize, esp. for profit; turn to practical account: to exploit a business opportunity.
2. to use selfishly for one's own ends: employers who exploit their workers.
3. to advance or further through exploitation; promote
As the father of two boys on the autism spectrum, I am deeply bothered by the callous exploitation exhibited by these self-righteous people.
How, as an autistic adult, would you feel as you saw this ad for the first time? Would you feel marginalized? Degraded? Would the "sad face" build your self-image, or chip away at it? Would you feel like a valued contributor to society, or a "burden" who need not exist were it not for kids drinking milk?
Perhaps in a future post I will get into the issue of how bogus the New Jersey prevalence figures are in relation to other states (an important aspect of their ridiculous campaign). Or maybe I'll jump into the dubious - no, discredited - nature of the opioid excess theory of autism that the entire casein house of cards is built upon. Or maybe I'll just discuss the basic concepts of causation v. correlation. In any case, I cannot reach nearly as many people as the fools at PETA will this week in Newark. Shame, PETA, shame.
I dunno, folks. At times it seems that the idiocy gets ahead of us and I feel like not much we can do will really create a better world for autistic people. I hope the Autism Hub, ASAN, and like-minded folks will remain aware of travesties such as this PETA embarrassment and provide a united front to counter open bigotry of this nature.
More on this topic from Kristina at Autism Vox and from Orac at Respectful Insolence.
Thursday, September 25, 2008
Ask Jenny McCarthy a Question!
(Steve Raises Hand, a la Horshack of "Welcome Back Cotter" fame)
"Ooh!, Ooh!, Ooh!"
I have a question for Jenny McCarthy! I guess this one applies to Jim Carrey as well, as he has assumed the fatherhood role for young Evan McCarthy.
(Jenny and Jim are Mom and Dad. Good for them, and I wish all three the very best in all things. But I certainly wish Jenny and Jim would stop promoting the ideal that Toxic Autism is Bad.)
My question is this:
"Jenny, have you considered the impact of your publicity-driven actions on the future self-image of Evan?"
(Consider: Green our Vaccines rally, Oprah Winfrey appearances, Generation Rescue Board of Directors, etc)
Let me explain why this is of concern. Evan is a growing boy. If we take you at your word, Evan is a recovered autistic. He was autistic and now he is not autistic - he is typical. Through your actions as a Mother Warrior, you have pulled your son from the brink of the abyss, and he is now free to pursue his life's dreams as a non-toxic, normal person. Okay.
So what happens - now that you have staked your professional reputation on his being absolutely "typical" - when he has some struggles at school? If you take him to a birthday party with other kids his age and he is sitting off to the side, not really interested in their collective social excitement? Or maybe a kid approaches him and asks what class he is in, only to be met with a very animated stream-of-consciousness about his preferred topic of conversation. In that same setting, maybe the noise and excitement are a touch disconcerting and he begins to jump-spin (a combination of jumping and spinning that is somewhat "dangerous to self" and nearby "others").
You see, Jenny, most of us parents of kids who are on the autism spectrum have little ways of dealing with situations like this that fully allow for our kid's neurological/perceptual uniqueness while capitalizing on "teachable moments". Jenny, we can do this because we have not staked our personal dignity or professional reputation on the expectation that our child will not exhibit autistic behaviors.
As an example, just today - after work - I myself took J to a local pizza place for a classmate's birthday party and managed the jump-spin and sitting-alone scenarios. I then took him to soccer practice where the sensory/lying down drive was dominant and lack of desire to play with the team was blatantly obvious. All this with a boy who most casual observers would consider to appear as "recovered" as Evan may be.
Fast forward a few years. Evan is really growing up now. He's hitting puberty, and is contending with all of the challenges that come with it. Now he is really expected to fall in line with his peers. Pack mentality rules. Awkward or non-conformist behavior is met with derision. Especially for a kid with such high-caliber social parents. Especially for a kid whose Mom has been a professional "Babe". How is Evan going to be dealing with the wrinkles of his (formerly) autistic neurology then? Will his very publicly announced transition from the world of "autism" to the world of "typicality" (as documented by his "warrior mom" in books, magazines, and TV shows) cause any consternation at that point in his development?
I don't know the answer to any of these questions. I'm not really expecting to get the answer here. I do ask the reader of this blog to consider the term "autism acceptance " in the light of this post. This term can be reduced down to admitting that a diagnosis is correct, but can also be utile in considering the overall set of factors that influence quality of life at various points in a person's development. I wish Jenny McCarthy had factored in this second definition before deciding to exploit her beautiful son, Evan, as the First Child of autism recovery, and thereby set the stage for intense internal conflict in him for years to come.
Sunday, September 21, 2008
As Dads have done for untold generations, I took great pleasure in trying to find a few trinkets to bring home for everyone in the family. For Baby C, I found a pop-up hand puppet of a raccoon in a lidded trash can. Great fun for the little guy. T got a little treasure chest with three Pirate puzzle games. Arrrr. J - our little bibliophile - got a book. Keeping in mind that October is just around the corner, I got him "13 Monsters Who Should Be Avoided" by Kevin Shortsleeve.
J was enthralled as I read him the book this morning. He had laughed his way through the rhyme about the Three Toed Albanian Snoring Sock Bats, who nest in our sock drawers and are generally responsible for all the missing socks of the world. He gasped as I read to him about the stinky Sissyfoos that dines on wet sneakers and unlucky toads. He stared wide-eyed at the illustration of the Doohickeemajiggers - spidery little robotic creatures that are so complicated that they are born with instruction manuals. Unfortunately, they can't read, so "They mix up their parts till the mess is so muddled, they end up cross-eyed, confused and befuddled."
But the best moment came when I read to him about the Mess Monsters:
After reading this, I turned the page (to the one about Snurps that eat parked cars), but J stopped me and turned the page back. He looked from the words to me. Back to the picture, then back to me. "Daddy," he said, "is Baby C a Mess Monster too?"Mess Monsters, in general, should not be let in,
Because once inside, Mess Monsters begin
To tip every lamp and spill every mug,
Tilt all the paintings and rumple each rug,
Topple the trash can down the front stairs,
Replace every light bulb with sticky peeled pears,
Load the dishwasher with sport-fishing gear,
Drape soggy spaghetti from the brass chandelier,
Paint pudding-pie murals depicting a pig,
Stick bubble-gum wads in your aunt's silver wig,
Cut paper dolls out of your dinosaur poster,
And pour maple syrup right in the toaster.
Then the Mess Monster will suddenly shrug,
Say, "Sorry 'bout that," and give you a hug.
But before the Mess Monster can help you to clean,
He leaps on his scooter and flees from the scene!
(Anyone who has seen C in the last 4-6 months would answer a resounding "YES!")
And to think I left my wife alone with a Mess Monster for 6 days!
Saturday, September 20, 2008
I can state with certainty that my understanding of autism - formed from the perspective of a non-autistic parent - has been enriched greatly by having met and gotten to know Bev Harp, an autistic woman and all-around great person. Likewise, I have seldom been more moved to consider my own shortfalls of understanding than I am when I spend time with Peyton Goddard. I have also had the great pleasure of getting to know Camille Clark in person.
Online, I have also benefitted from exchanging ideas with Michelle Dawson and Amanda Baggs.
I have not spent much time considering the skewed male:female ratio in terms of autism. In light of that, I found the following paragraph from the article very interesting, especially in the context of our understanding of prevalence of autism today (and the supposed 'epidemic'):
"When the first of my two autistic sons was diagnosed in 1994, someone told me that autism was more prevalent among Jews (my sons' father is partly Jewish). This notion probably arose because many mid-century psychiatrists and psychoanalysts were Jewish, so interest in and awareness of unusual mental states was higher among Jewish families, who were therefore more likely to seek consultations for their children. Similarly, Asperger believed autism to be more prevalent amongst the professional classes, failing to see that it was simply more likely that such a parent would seek his advice. We now know that autism is not related to ethnicity, income or social class. Are we about to find that it is not as strongly linked to gender as has been supposed, that there are more autistic women out there than we imagine?"Anyway, its a well-written but brief article that I would recommend. Read it here.
Tuesday, September 9, 2008
Over on the daily embarrassment known as Age of Autism, editor Dan Olmstead has decided to launch a personal attack against Kathleen Seidel. In the hit-piece, he attempts to draw imaginary lines between Kathleen's career path and resulting ethyl mercury exposure, with the fact that she is the parent of an autistic person.
It is de rigeur to find this type of (poorly done and factually erroneous) attempted character assassination on AoA, as past "victims" have included anyone from respected researcher Nancy Minshew, to vaccine expert Paul Offit, to Drs. (and parents) Joyce Chung and Roy Richard Grinker, among many others.
Kev has already explained the foundational level of ineptness displayed by Dan Olmstead in writing this most recent diatribe, by explaining that the supposed ethyl mercury exposure that Mr. Olmstead has 'accused' Kathleen of never actually happened. No need to rehash that point again, as I'm sure Mr. Olmstead is appropriately ashamed of his blind leap to conclusions by now. Or perhaps not, since Mr. Olmstead seems to have made a career of this type of dot-connecting without fact-checking.
What I want to address is the common content of the comments on that post. Aside from the expected "GO DAN!" style of comments, there is a recurring theme there of agreement on something that Mr. Olmstead brought up in his attempt to discredit Kathleen.
Mr. Olmstead's piece uses the following quote from Kathleen Seidel:
"Excuse me. Did it ever occur to [vaccine mercury critics] that someone might object to having their family members labeled as inherently toxic?"
as a springboard for his counter-argument:
"Well, they might object, but that doesn't have any bearing on the truth."
And the commenters to the piece really dig in to this concept, with comments like:
"There is absolutely no logic in saying that it is offensive to imply that a child is poisoned. Poising is something that happens to someone.Poisoning is not a trait one is born with. How can you "offend" someone by stating or hypothesizing that an event happened to someone? Ridiculous!"
"And "toxic" is not an insult -- it is a possible explanation which, when treated, can sometimes result in substantial improvement in quality of life -- health, social skills, cognition..."
"What an ostrich attitude, construing concern over treatment of a medical malady instead as a social gaffe. I know toxic people, myself among them, and have no problem applying or wearing that label."
"Is Kathleen Seidel Toxic?
What else could explain her aggressive, obsessive, hateful demeanor.
Somebody toss this woman a DMSA, please!"
I had to throw that last quote in as a perfect example of what connotations the word "toxic" carries in today's vernacular.
Having read these comments, I think perhaps I can offer One Dad's Opinion - not to be confused with "the Neurodiversity movement" (if anyone has a membership list for the ND's, I'd love to see one) - on why it is so important to not refer to our children as toxic when they are not.
Toxic is defined as:
k s k)
1. Of, relating to, or caused by a toxin or other poison: a toxic condition; toxic hepatitis.
2. Capable of causing injury or death, especially by chemical means; poisonous: food preservatives that are toxic in concentrated amounts; a dump for toxic industrial wastes. See Synonyms at poisonous.
This, then, is the set of parameters folks at Age of Autism are setting for our children. They would have you believe that, in the immortal words of JB Handley, "There is no such thing as autism. Autism is just a mis-diagnosis for mercury poisoning." Words that JB - founder of Generation Rescue and Age of Autism - has never retracted.
The logical extension of this statement is quite simple:
Toxic is bad
Non-toxic ("cured" or "recovered") is good
Since they also take the position that autism is condition resulting from toxicity, then of course:
Autistic is bad
Non-autistic is good
Now I'm not going to sit here and say there is nothing bad about the condition of being autistic, as different individuals experience the challenges and disabling aspects of autism in different ways and it would be foolish to sugarcoat those aspects. And it is certainly not my place to speak for anyone else on this topic. But I have a serious problem with autism being approached from a de facto position that it is a lesser circumstance.
This position requires the view that autism is inherently negative, and that elimination of the condition of autism (i.e. toxicity) is the only worthy goal. Recall that autism is defined as a life-long disorder. There is documented improvement in some young children - some even "moving off" the spectrum altogether - but no "treatment" oriented toward resolving the hypothesized toxicity component has been shown to have been more effective than placebo. So often it has amazed me that, among the parents who go down the road of hard-core buying into the "toxic child" mythology, so little thought is given to the life-long impact of their particular brand of PR on those people who will remain autistic and require community supports throughout their lifespan. The mantra seems to be, "I recovered my kid, aren't you ashamed that you haven't even tried?" Which equates in my mind to, "My kid is better off than yours because he/she is less autistic than yours".
Are these people unable to conceptualize how the "toxicity" view of autism would dictate how educator and service providers may view the individual? Imagine an IEP meeting - "How is Kim this year? Still poisoned? Oh, that sucks ... I guess we'll have to support her again. When do you think she might be detoxed?"
And let's just say that the PR machine (all style, no substance) that is GR and AoA succeeds in their very expensive and cult-like "selling" of the toxic child paradigm to the general public. What, then, of the autistic teens, young adults, and adults that are out in the community - participating as is their God-given right? Will they be met with sad looks, hushed conversations just out of earshot about the poor "toxic cesspool" that is the autistic person? How, exactly, does this world-view engender dignity for the autistic person? You know what? It doesn't. It just doesn't. And it saddens me that people like Mr. Olmstead - himself a person who is NOT a stakeholder in the autism community - devote their efforts to entrenching the public in this erroneous and harmful paradigm. And it saddens me that, as he spirals downward into the rabbit hole of quackery, bad journalism, and harmful mythology, he feels the need to try to drag good people - the latest being Kathleen Seidel - down with him.
Shame, Mr. Olmstead. Shame.
Thursday, September 4, 2008
This blog has never been intended to be a platform for discussion of "party" politics. This post, though it may smack of such politics, is not intended as such.
I have stated before and I will reiterate now that I am socially and fiscally of a Conservative mindset. I realize that many of my real life and online friends do not share my beliefs and determinations on such matters, and I have been fortunate enough to have encountered some good souls who can provoke serious thought and deliberation on various topics in this arena without rancor and strife.
I do, however, draw a few hard lines. One of them has to do with abortion. This is the first reason that I am feeling pretty darn positive about Governor Sarah Palin's nomination as Vice-Presidential candidate on the McCain ticket. In case you haven't already heard, Governor Palin is the proud mother of a 4-month old boy who has Down Syndrome.
Are you aware that, according to at least one review of the available scientific literature, up to 92% of children who are prenatally determined - typically via amniocentesis - to have Down Syndrome are terminated prenatally? Do you ever wonder how close we are to having a prenatal test for autism, at least one that could determine statistical likelihood? What concerns does the possibility of such a test cause you to consider?
Perhaps Sarah Palin had an "amnio", perhaps she didn't. If she felt, as my wife and I did during all three pregnancies, that the results of an amniocentesis would not result in our deciding to terminate our unborn child, then I'm guessing she declined for health reasons. As we declined.
Regardless, we now have a vice-presidential candidate whose gender - she would, of course, become the first female VP in American history - is being, if not overshadowed, complemented by her role as the very-new parent of a child with special needs. And this role is what caused her to assert the following statement during last night's candidacy acceptance speech:
This is music to my ears, and provides an incandescent spark of hope that perhaps, if Governor Palin does indeed become the Vice President of the United States of America, the disability community will have an important ally in Washington.
"And in April, my husband, Todd, and I welcomed our littlest one into the world, a perfectly beautiful baby boy named Trig. From the inside, no family ever seems typical.
That's how it is with us.
Our family has the same ups and downs as any other — the same challenges and the same joys.
Sometimes even the greatest joys bring challenge.
And children with special needs inspire a special love.
To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters.I pledge to you that if we are elected, you will have a friend and advocate in the White House. "
Here is One Dad's best wishes that, whatever the outcome of this political contest, Trig Palin will thrive at all stages of his precious life, and that he will touch us all and in turn be touched by us in ways that promote our ... well ... our humanity.
Go Trig! Go Sarah!
Note to readers: Please take the time to read this important post by Joel Smith - "An Open Letter to Sarah Palin".
Wednesday, September 3, 2008
More specifically, this study looked at the long-held position that (follow me here) Measles/Mumps/Rubella vaccine causes autism by creating a persistent measles-virus infection in the gut of the affected individual - termed "autistic enterocolitis" - which, in turn, causes the individual to manifest autistic behaviors, perhaps due to the opioid excess theory. This is the entirety, and half of another, of the three causation concepts being advanced in the Autism Omnibus Proceeding currently (and for the past 2 years) underway in the VICP in our nation's capitol.
To offer a brief summary, the study adds to the body of knowledge that the MMR vaccine has no relation to autism.
A couple of things make this study somewhat more palatable to the broader autism community than the numerous others that have arrived at the same conclusion. One is that a major contributor to this study - indeed half of the presenting research team - is one Dr. Mady Hornig. Dr. Hornig is (in)famous for her studies on "SJL Thim" mice in which she supposedly induced autism via thimerosal exposure. The mice literally chewed through each other's skulls, which was construed as being an "animal model" for autism. Go figure.
(Author's note: Neither of my two autistic children have attempted to chew on anyone else's skulls, including each others'. Knock on wood.)
So Mady Hornig - a veritable "celebrity" of the vaccine/autism research pantheon - is now stating with certainty that the MMR is not to be considered a culprit in autism causation. Of course, one hero of the autism/vaccine movement turning to the "dark side" as a result of this study is easy to explain away if the resulting cognitive dissonance is too great to bear. But two?
Yes, two. Rick Rollens was present at the press conference. Although his comments (which I can only reference in a limited context, as I did not have access to the presser itself) do not directly address what the study authors have found to be the most significant findings, they instead are intended to perpetuate the controversial causation hypotheses.
The following quote, a real "study finding", is by study co-author Ian Lipkin of Columbia University:
"We found no difference in children who had GI complaints and no autism and children who had autism but no GI complaints,..."Rick Rollens' presence - especially considering his personal, political, and financial largesse in directing funding away from needed services and toward the vaccine causation hypotheses - at the press conference certainly implies a tacit approval of the findings. Few people have more personal or emotional investment in the erroneous, yet dominant, theory. As opposed to arguing against the study results, Rick redirects the topic away from vaccines which, frankly, may be the appropriate thing to do - even if it is a dodge.
Let's please remember that this is not "new" information, per se, but instead is a further confirmation of what has already been accepted by the broader scientific community after numerous studies achieving the same (via different methods) result. Here is, in contrast to the above quoted statement by Ian Lipkin, one of Mr. Rollens' statements from the teleconference:
"No longer can mainstream medicine ignore parents' claims of clinically significant GI distress," said Rick Rollens, a parent and autism research advocate.
He commended the researchers for their work but said, "This study by itself does not exonerate the role of all vaccines."
Well, no, this study doesn't exonerate all vaccines - it was not designed to do so. But seeing as the theories espoused by the vaccine/autism crowd have been centered on two theories (MMR or TCV's/Mercury), that not one shred of good science has supported these theories, that little tangible benefit to a single individual with autism has resulted from these theories, and that the whole topic doesn't amount to a hill of beans in the quality of life for my two autistic sons, I am of a mind to continue to focus on whatever will create the best likelihood of positive outcome for all autistics and not let the festering vaccine causation theories prevail.
Lets all understand that this ongoing and falsely contrived crusade against public health, regardless of what is motivating it and who is perpetuating it, is drawing crucial resources and attention away from the truly pressing issues that the autism community should be addressing. Issues such as housing for adults, societal inclusion, promoting ways and means that autistics can be impactful in a positive way in their communities and microeconomies, identifying and implementing appropriate means to ensure physical and mental health at all stages of life for autistic people. So I ask about the autism/vaccine connection - NOW is it over?
Edit: And here is a link to some audio from the conference.
Friday, August 29, 2008
Baby C, on the other hand, has never hugged me. He is dealing with some developmental anomalies that are probably causing some sensory integration issues that make my kind of hugging not so pleasant for him. It is also possible that my hugs are too unpredictable in their occurrence or intensity. Perhaps my voice or posture is not copacetic to his way of thinking. Whatever it is, its not working for him.
That's not to say he doesn't hug in his own way, though. He does.
When I want to have some time with C, or just let him know I'm interested in getting down to his physical level, I kneel and spread my arms out wide. This is a fairly universal gesture, I think. He will notice me, and cruise over to me. However, once he is approximately arm's length he will stop, rotate in place until his back is to me, and take tiny backwards steps until he backs into me. I, in keeping with the routine we have developed, will squeeze him by pressing his shoulders towards each other, will apply pressure to his crown, temples, and forehead, and will do some other deep pressure stuff and joint compressions as long as he will let me. Its not a typical hug, but C is not a typical kid.
Tonight, though, for the first time, I received a Full Frontal Hug! And once he decided it was okay, he grabbed on tight and we were able to hug for a good 12 or 15 seconds. Once I put him down, he motored right past me as if nothing had happened. But he and I both know that a small barrier has been broken. Next time I kneel down, he will have options. If he wants to back into me, then fine. But I'm ready for another Full Frontal Hug whenever he is.
And again I am reminded of one of the wonderful aspects of parenting. Its the little things - the things that no person outside the immediate dyad could ever know - that makes the parent/child relationship so special. Things like the Full Frontal Hug.
Wednesday, August 27, 2008
This article tells the story of 19-year old Evan Delaney Rodgers and her quest to earn a spot on the Carlsbad, CA City Council. She is running her campaign absolutely free of any donations from anyone, an expects to do it all for less than $1000. Oh, and she has Asperger's Syndrome.
From the story:
“If you meet a person with autism,” she likes to say, “you've met one person with autism. I'm not like Rain Man, not like Einstein. I'm not like Thomas Jefferson.” (It's been speculated that Einstein and Jefferson, socially remote geniuses, had Asperger's.)
In her campaign release, Rodgers speaks with clear-eyed candor about Asperger's:
“I wouldn't be where I am today if I were neurotypical because I would have been interested in social things. Having a little autism helped me achieve my goals and not miss what most people thought I was missing out on. I'm not really 'driven' in the sense of being a wound-up over-achiever – marching to my own drum just happens to cover a lot of ground.”
What a great line. I need to remember that one as my boys grow older so I am armed with some sage, fatherly advice. And I need to remember that I got it from a 19-year old girl.
I don't live in Carlsbad, and therefore don't have a vote in that election. But if I had, I bet you can guess who I'd be voting for.
Rodgers for City Council!
Tuesday, August 26, 2008
Let me begin by saying that the operational aspect of this is soooo much easier than last time. When J was diagnosed in 2004, it took several months for us to get our bearings. I'll never forget leaving the hospital that day. Being told that J is autistic, then being handed a packet of information/local contacts/agencies, and being shown the door. At that time, I knew nothing about autism. I wrote about the drive home here.
This time, the feeling of disorientation is there again. But it is rooted in different lines of thought. Now we are very familiar with what to do, and what not to do. We're not hitting the panic button as before, nor are we organizing our family and friends into a quasi-military command structure in order to "combat" autism or "defeat" our family's new circumstance. No, we are much more accepting of the inherent good and not-so-good that accompanies the effort to raise an autistic child. More importantly, we are acutely aware of the challenges - moment by moment, day by day - that are facing our little guy. I think we can do a better job this time of balancing his needs with trying to promote the most positive outcome in overcoming some of the disabling aspects of autism. And, unlike before, he and we have a role model for success in the first few years (his older brother). And we already have a great support-framework in place (a very supportive family, real-life friends on and off the spectrum, numerous professional contacts, and an immensely supportive online community who have already provided staunch emotional support accompanied by personal anecdotes and great advice). Let me take this opportunity to thank each of you who commented on my last post announcing baby C's diagnosis, those who felt supportive but did not or could not put their thoughts into words, and those whp sent personal emails. All messages were read, digested, and appreciated.
So that leads me back to, What's Next?
In a great coincidence, the answer to that question came in a peer-reviewed, published paper approximately 10 days prior to C's diagnosis at Children's Hospital.
I cannot link you to the full paper, but here is the abstract as listed on PubMed.
The study is titled "Properties of supportive relationships form the perspective of academically successful individuals with autism", and it was authored by Dr. Jodi Robledo and Dr. Anne Donnellan, both of the University of San Diego Autism Institute. If you need more info on the USD Autism Institute, simply look at the Home Page of the Autism Hub, and you will find them listed under "Autism Hub Friends". Or, here is a direct link.
The really important aspect of this paper is that, by interviewing autistic adults, the authors established 6 factors that were deemed as being essential to their success in building relationships. It is extremely gratifying to me to see researchers intentionally positioning autistics as a primary source of experiential information, and basing their findings on these experiential factors. This is an unfortunately rare circumstance in autism research today, and the results are - to my way of thinking - all the more valuable as a result.
Before I discuss the findings and their relevancy in my family's life, a quick note about the participants. All 5 participants are young adults who have been academically successful. 3 of the 5 are non-speaking and communicate through typing. I have personally met three of the five participants, and will attest that their autism-related challenges are as significant as a researcher is likely to find.
The results of the study essentially consist of the responses of these 5 participants, and the translation of these responses into 6 categories. The participants were asked to identify 2 to 4 individuals with whom they had a supportive relationship, the definition of supportive being left up to the participant. When the data - collected via face-to-face interviews, email correspondence, published documents, public broadcasts, and phone interviews - were analyzed, 6 major properties emerged as being essential components of a supportive relationship:
SHARED VISION OF INDEPENDENCE
THE PRESUMPTION OF COMPETENCE
Perhaps this list struck you as you read it for the first time in the same way that it struck me.
And what struck me is that it is nice to see some research-based verification of that philosophy that I have already adopted. Anyone who has spent any time browsing the Autism Hub will agree that these properties are discussed regularly, in detail, with enthusiasm, and are universally embraced as being essential components of autism "acceptance" (for lack of a more efficacious word).
So as we move forward into building a relationship with our second autistic son, we will be keeping these things at the forefront of our minds. There is no need to reinvent the wheel, here. What is called for is to listen to those who have come before (in this case, autistic adults) and emulate that which has been shown to be effective.
THAT'S what's next.
Thanks to Drs. Robledo and Donnellan for their work on this study.
Robledo JA, Donnellan AM
Intellect Dev Disabil. 2008 Aug;46(4):299-310.
Friday, August 15, 2008
Today, my youngest son was diagnosed with Autism Disorder.
C is 19 months old, so the diagnosis is "provisional". This means that his "label" may change (within the ASD umbrella) as he develops over the next year or so. But the diagnosing clinician, who has assessed around 1,000 kids during her career, left no room for doubt as to whether or not he is on the spectrum. Both the results of the ADOS and her clinical experience paint a very clear picture.
What is not so clear, and what is so difficult as a parent of a child with autism or any number of other developmental challenges is what C's prognosis looks like. I have spent a lot of time on this blog writing about Positive Outcomes, and I can't help but dwell on the mercurial nature of that subject on the day my son was diagnosed.
Of course, we knew this about C before he went to Children's Hospital today. We knew, but we didn't know, if you know what I mean. We have seen all kinds of indicators over the past 6-8 months. At the same time, we also saw things that would indicate he is not autistic. What we, as parents, lacked is the clinical experience and the lack of bias that a professional can provide. For this reason, we have been counting the days to August 15 so we could receive a confirmation or denial of what we had been observing.
I've got some more thinking to do before I write much more on this. Feel free to comment any way you'd like on this - I welcome your thoughts and insights at this time.
Tuesday, August 12, 2008
Though it could be, considering the title.
Instead, I must warn you that this is an entirely non-autism-related post and holds absolutely no scientific value or journalistic integrity.
When Animals Attack #1
My family is technologically challenged. Though I have learned my way around blogger, I am pretty much a rube in regards to all other things electronic. Oh, to be an electronic guru like my friends Glynn or Kev! No such luck.
So when I booked the install appointment for DSL (we currently run satellite internet due to our semi-rural location and resulting limited options), I just knew it would not go well. In the week leading into the appointment, we had one TV go down, baby C dropped our digital camera in the pool and thereby destroyed that, I found that many of my most recently downloaded songs are MP4 format which will not play in our little "gemstone" pseudo-Ipod thing, my wife's cell phone shuts itself down when she tries to dial out, and my company's servers are full and requiring a PowerVault for expansion (very expensive). DSL must run through phone lines, as does our satellite TV and our alarm system. Though I was assured these would not conflict, it took 3 hours of a tech being in my home to verify what I knew already - that we are living in the technological equivalent of purgatory.
During the Tech's visit, my wife noticed the dogs barking excessively on the back patio. When she went to investigate, she noticed the sound of water running, or spraying. Upon closer investigation, it was not water ... it was a rattle ... Or, to be more specific, Rattlesnake! After she hollered for attention, I helped her drag the dogs in the house (we have really big dogs and they really wanted to play with the snake) and I prepared myself to do battle with the leviathan.
Okay, as an aside, I really don't like to kill snakes. But Rattlers are territorial(they will return to the same spots repeatedly), and I happen to also be territorial (I return to my home each night). It is my responsibility to; a) protect my children from harm, and b) not kill myself in the process if it can be easily avoided. This means my options - since I have no way of picking up and removing a rattlesnake - are limited. I can't let it get out of my sight and wonder every moment if my kids or dogs will encounter it, so I have to kill it. To spare you the details, I accomplished my task and am feeling not very good about it. I am currently loking for a snake-catcher so that next time I can remove the snake instead of killing it. Maybe I should have called this post, "When Humans Attack".
The point here is that all of this happened while the DSL installer was here. He kept peeking outside to check on my raging battle with the snake.
When he left ... hours later ... defeated by the curse of the D family's electronics ... I told him, "Hey, lighten up. Its not your fault. This install was doomed before I even ordered it! You see, when we try to upgrade technologically around here it not only doesn't work, but we also get attacked by wild animals!"
When Animals Attack #2
You'd like to think the story is over at his point, right? Ummm, no.
The snake thing happened last Wednesday. Fast forward all of 2 days, and my wife has the boys down by the pool. My wife is an animal husbandry aficionado, and has not yet learned (as we cynics have) that so-called "lesser" animals can be safely ignored. As a result, she was rescuing a drowning bee from our pool. Yes, picture an exhausted, drenched bee being mercifully lifted from the cold, deathly, chlorinated clutch of the pool by L's graceful hands. Then picture the little ungrateful bastard stinging her! (Sorry Andrea for flinging epithets at the bee, but read on prior to passing judgment please).
To shorten a long story, by the next day (Saturday) her finger was turning black and her hand was swollen to a painful point. I took watch over the boys while she went to Urgent Care. She returned 5 hours later with a splint on her hand (extending up to her forearm), gauze on her opposing wrist to cover the IV tube they left in her arm. You see, she had undergone a severe reaction to the bee sting and required IV antibiotics, and she had to return the next day for another round. They had to cut off her ring due to swelling. Now she appeared to be some android-mom.
So this was a big deal! And it was not directly related to any technology installs or upgrades! Unbelievable.
She is ok now, but apparently this reaction will get worse with each ensuing bee sting. And never mind that our middle son, T, also reacts strongly to bee stings, and that bees hate T. They have some sort of bee-nation vendetta on the poor kid, and typically harass him at every turn. He's had twice as many bee stings in 5 years as I've had in my life, poor kid. So we are planning to move to Nome, Alaska where it is too freakin' cold for bees to live.
When Animals Attack #3 - Prehistoric Version
Endless thanks go to Grandma and Poppa for taking our two oldest sons to Colorado for a week-long adventure this summer. Little did we know that our pattern of animal attacks would also occur there!
Monday, August 11, 2008
I've missed you, readers - all 17 of you!
You may or may not have noticed that I have not been around much lately in the blogosphere. I was on my summer vacation - a respite from blogging and debating and advocating and conferencing and all that.
Not that it has been quiet - far from it!
I have been a keen observer, though. All kinds of things have been happening this summer in the autism communities. Some I have silently cheered, others have left me cringing and wondering when the madness would end. I do rest assured that the efforts I see on an ongoing basis in the more stable, sane corners of the world of autism are working to the benefit of my son and many others like - and not so much like - him.
Taking a step back for a while has also helped me to realize the importance of the message we try to get out here on the Autism Hub. People need to hear us - autistics, parents, professionals, researchers. When I see the sheer volume of oppressive or misguided messages that exist out there, I am resolved to continue to speak to the issues.
Now for a mini-Snippet (this becomes Snippets 3.0):
About an hour ago, J was rooting through the cupboard looking for something to eat. I peeked in there and noticed a bag of sunflower seeds - one of my favorite snacks. I buy the shelled type, as I hate shelling them myself. I grabbed about 4 or 5 seeds out of the bag and encouraged J to try some. Anyone who knows J also knows that he is extremely limited in his diet, and has very powerful sensory reactions (gag and vomit) to a huge range of textures. This is something we have only last week received funding approval to address via OT. But as he matures he has at least shown a willingness to try new things.
So I asked him to try the sunflower seeds, and promptly put these 4 or 5 on his tongue before he could object. I saw the familiar facial expression change, and he began to retch. He spit out the seeds and backed away. Knowing how these things go, and constantly feeling guilty for having to push and push for him to expand his diet in the face of real challenges, I told him I was sorry.
"I ... I just .... don't want them to grow in my belly!"
Riiiiight. Sunflower seeds.
Just when I think I know why he's doing what he's doing, I am proven wrong again.
Tuesday, July 22, 2008
Perhaps I have been slower to react to this due to the fact that I have listened to Michael Savage's talk show over the years. I have a lengthy drive home, and for the sake of diversity I often change up the listening material I garner from the radio. Someday I hope to be able to afford these products and therefore to while away the car time in a state of continuing-education bliss. In the meantime, I have spent too many hours listening to the likes of this blowhard.
So when I initially heard about the controversial statements he had made, I said to myself, "Self, this is no big deal. Savage insults somebody at this level of magnitude virtually every day. Its his shtick, nobody will pay attention to this garbage. Plus, if you put virtually anyone in front of a microphone for three hours a day, every day, foot will insert into mouth at some point."
Self was wrong. When Savage went on his little diatribe about autism diagnoses being a fraud, a play for the welfare of the state, the autism community and the greater disability community came unglued. Deservedly so.
So, Michael Savage went into damage control mode. Or at least his deranged little version of damage control, which reeks of conspiracy theory, paranoia, and a complete lack of respect or understanding of autistic people and those who love them. I maintain that Ben Stiller is a modern-day comic icon due to his ability to play roles that just make us cringe to watch. Witnessing Savage's self-inflicted, ego-driven tailspin was every bit as cringe-producing as anything Stiller has acted out on camera.
Though I missed the Talk Show Tour de Farce that occurred last night as a means to defuse the situation, I did tune in to The Savage Nation for the last time today to hear this guy sputter his way through what is hopefully his Swan Song as a radio personality. I was utterly fascinated to hear him spin his web of obfuscation and red herrings as a means of deflecting attention from the ugly truth of his bigotry on this topic. Here is how the reasoning goes:
Michael Savage believes that the APA, the AAP, and Big Pharma all conspired to have the diagnostic criteria broadened in the 90's. This was done in an effort to promote the sale of more SSRI's (anti-depressants, anti-anxiety).
Pediatricians are envious of other doctors, such as plastic surgeons, due to the disparity in income (does anyone see echoes of anti-vax sentiment in these statements, hmmm?). "They", meaning the AAP, therefore conspired with drug makers to invent this new Dx so that both groups could increase their revenue and profit margins. (Apparently Savage is not aware that pediatricians are not involved directly in the diagnosis of, or treatment of, autism).
Parents are vacuous, drooling, knuckle-dragging, self-centered morons who buy this line from the aforementioned triumvirate and submit their kids to a parade of narcotics in the name of controlling their behavior. These same parents take no responsibility for the behaviors of the kids they brought into the world, allowing them to scream and carry on. Nothing a good beatin' wouldn't solve, right Dr. Savage?
Do you get the picture he is painting? As I listened today, he had the gall to say (and I am paraphrasing - this is not a direct quote):
"You should be lauding me as a hero, not reviling me - for bringing this subject to your attention. I am the defender of the defenseless!"
Can you believe this guy? He actually discounts an entire category of people, is excoriated for it in the national media, then tries to recast himself as some sort of martyr who only has the kids' best interests in mind!
Most readers of this blog (all 17 of you) have the critical thinking skills to know a Purveyor of Woo when you see one, right? Well, as further example of Michael Savage's debased version of critical thinking skills, let's just examine a few of the "headlines" from MichaelSavage.com, shall we?
BREAKING HEALTH NEWS
The Life-Saver Heart Surgeons Never Tell You About
This 23-cent miracle could save your life!
TURN A $200 INVESTMENT INTO $1 MILLION
Billion dollar drug company found a cure for cancer ... and TOLD NO ONE!!!
They hid the cure to sell you more drugs!
(or, perhaps most telling of all...)
PROTECT FREEDOM OF SPEECH!
Support the Michael Savage Legal Defense Fund
(Donations are not tax deductible)
Does this give you an idea of who we are dealing with, and why I assumed the whole thing would receive no airtime whatsoever? Nobody really takes this guy seriously, or so I thought.
I truly became outraged only today when listening to this bigot (as opposed to observing the commentary on the internet) made me realize that many of his listeners will actually buy into and support this line of crap. Autism is known as "the hidden disability", and its subtle presentation in many people can cause extensive problems in day-to-day interactions. My friend, Bev, is the best I know at capturing this aspect of autism and presenting in a fashion that makes it easy for people like me to understand. She exquisitely and poignantly describes some of the challenges and issues that my son will be facing as life progresses, and thousands of others like him.
Shame on Michael Savage for using his bully pulpit to try to make life more challenging for my son. Shame on him for discounting the struggles of autistic people. Shame on him for ignoring the existence of autistic adults (they're not all little kids, ya know?). Shame on him for scoffing at the need to accommodate and support people with special needs. Shame!
Monday, July 21, 2008
Please read the article in its entirety here. You will need to register (free) in order to access the page.
One of my main goals in keeping this blog and participating in online and real-life advocacy efforts is to try to promote the concept of supporting autistic people. I remain immensely dismayed by the overwhelming occupancy of cause and cure issues in the national rhetoric on the topic of autism. It is far too often that autistic adults and those who are transitioning into adulthood are ignored - they are victims of the autism community's unnerving inability to move beyond the vaccine and mercury causation belief systems. These belief systems pigeonhole the range of discussion and seemingly override most other concerns within the community. These belief systems result in a worldview that narrows the definition of "support" to a set of medical interventions sold to parents with still-young children. To put it in a different way, one a friend recently mentioned, the broader autism discussion has been "framed" - the narrative has been set in the public's mind - to imply that all autistics are young children who are the victims of their toxic environment.
One unintended result of this misappropriation of ongoing focus and energy on the vaccine issue is that it inevitable draws resources from known areas of shortfalls. One such area is aiding young adults with their transition into adulthood.
Let me give you a quote from Ms. Bauer's piece:
"My grown son has autism. And while I wouldn't trade him -- the person to whom I gave birth -- for any other, I wish that his disability were as recognizable as Down syndrome and that we, his parents, were more effective at helping him achieve a satisfying life. Right now, we're flummoxed by the issues that arise as a child with autism veers into adulthood: higher education, employment, independent living, romance. In all these areas, family members of those with Down syndrome have figured out a cohesive, workable system of support."I think Ms. Bauer hit the proverbial nail on the head. I think she has voiced the concerns that parents of adult autistics have been asserting for a long time now. Is this situation improving? I certainly hope so, but obviously not at a pace that has helped Ms. Bauer's son.
"Third -- and most important -- they have carved out a place in society forThank you for that, Ms. Bauer.
their children. It's a hackneyed myth that people with Down syndrome are
uniformly happy, but it is true that they have the capacity for joy and that
their community has ensured they have a breadth of options -- career,
This is what we who love people with autism must do"
You see, I have long wondered what happens when the last biomedical treatment
has been tried, and the resignation sets in that autism truly is a lifelong disability.
Or when a child who has been held out in public as being an example of a "cured",
or "recovered", by his or her parents has problems as life's stages unfold. Problems
that he or she is not "supposed" to be having.
Well, hopefully those of us who have been working towards societal acceptance,
who have been shooting holes in the "autism is worse than cancer" mindset, who
have decided that respect and dignity freight more effectively in autistics' lives
than panic and pity, hopefully we will have made enough of a difference in
society that those kids, too, can pursue their individuality in a way that preserves
their happiness and sense of fulfillment.
So how do we go about that? How do we improve services and life transitions for
autistic people? In an interesting parallel, a really good post hit the Autism Hub today
by Joel Smith on that very subject. In it, Joel - an autistic adult himself who has the strength
of experience behind his words - spells out specific areas on which supporters and
educators of autistics can focus for the most positive impact. Please give it a read.
Ann Bauer and her son. Joel Smith and the Autism Hub. My son J. Let's keep writing our
Note: Apologies for the formatting problems with this, and other, posts. Blogger's software is
just abysmal when it comes to basic formatting.