Aspies For Freedom

Walk for the incurable

"Autism means smart," said Jake Keene.
    That’s how the 10-year-old described his condition while uploading Star Wars on his desktop.
    This fall, Jake Keene has an event to look forward to - his mother Terri Keene will be rounding up a team for a walkathon event where, since 2002, the family, along with friends has been walking 3.1 miles toward Boston to raise funds for autism.
    "We call it Jake’s Team," said Keene.
    Four years ago, Keene became a member of a national nonprofit, Autism Speaks, which supports diagnosis as well as a possible cure for autism. The walkathon is one of the organization’s annual events.

Last month, the New England chapter of Autism Speaks hosted a kick-off dinner for the event at the Café Escadrille.
    "The dinner was not only enjoyable, but there were parents who had been in the same boat as me," said Keene.
    She recalled how a parent stood up to say their autistic son loved fruit.
    "It was ironically funny because autistic children lose their palette for food, especially because they cannot differentiate food texture with their taste buds," she said.
    Keene said one of the ways her son has been able to develop despite his autism is through early intervention programs. They taught him how to entertain himself, especially for when school is out of session.
    "When he was around 18 months, his behavior and verbal skills made me suspect that something was wrong," said Keene. "I was told that boys were slower to talk, but my husband and I didn’t buy in that explanation."
    Two years apart from his elder sister, Kaitlin Keene, as a parent the second time around, Keene knew that an excessive tantrum such as banging his head on his crib board was not a sign of normal behavior.
    "I expressed my concern to Jake’s pediatrician," she said.
    By age 2, her son was a diagnosed with autism. Instead of reeling under devastation, Keene decided to take action.
    "I immediately enrolled Jake with an early intervention program and by age 3 he was with the LABBB program up at the high school," said Keene.
    While she applauded his teachers, throughout his education at Francis Wyman elementary school, Keene monitored the special needs of her child.
    Constant care has become a part of Keene’s routine, "but not for a day would I change what I have."
    Because Keene and her husband Kevin Keene decided to move forward with their son’s condition at an early stage, she believes that he is ahead with his fine motor and verbal skills. Most of his unpredictable behavior has been tamed.
    Outside school, the Keenes have brought their son to resource centers such as the North Shore Arc to hone his social skills.
    Even though she prefers to take it one day at a time, Keene said she tries to prepare a for the year ahead. For instance, Jake is ready to attend Marshall Simonds Middle School this fall and his mother is currently on top of helping him deal with social issues such as puberty and peer pressure.
    The bottom line in her son’s case is that her family’s struggle will not be over. Keene is aware that there is no medical cure for autism.

Extract from article By Nikki Misra from townonline.com

i take that as false.  i have nice working tastebuds.  i'm actually eating ceral right now, feel the texture in every bite.  who told her this lie?  maybe he's a picky eater.  i wasn't really a picky eater, i was willing to try new things, but i had some limiations, but my brother is a picky eater.

so autism is a thing that prevents people from doing things...false.  autism doesn't prvent me from doing things, it helps me do things.  i would say becuase of autism, i'm going to be graduating from college...

i'm worried about this whole cure is better attidue being put forward.  it's digusting.  i don't need a cure for a good life.

They really called the article Walk for the Incurable? I mean, I can't belive it..you're serious, they actually had the gall to title it that?!

Someone should hand them a history book, and have them read over the parts discussing WW2 and Hitler. Incurable, pssh..un-be-livable. Is it like Autism Speaks was created by the most un-accepting NTs ever?

Hmm, reading the piece was interesting, aside from the purely appalling grammar.  Let's see: "whine whine whine, oh but I wouldn't change a day of it."  Is it only me who sees this as being contradictory in the extreme?

Also fascinating was the assumption that the child is "ahead in fine motor skills and learning *BECAUSE* of early intervention."  Who says that's not what would have happened anyway?  

And then there was the fact that the article starts with her son describing himself as "smart" and shows him uploading data onto his computer. The article ends with how the family (brave but still smiling - psssshhh!) will never be over their struggle.  What struggle?  The child seems to be clever and likes IT.  So what if he prefers bland food to spicy?

Alison

So, just to clarify, we want to cure him of being smart?  :grin:  At least he seems to have a positive self-concept, not like some children whose parents have given them a complex about how "defective" they are.

This is silly. I wonder where she got this information? Excuse me while I take a bite of my multigrain bread sandwich with nice crunchy pickles.

Protest theme: Walk for the incurably ignorant?  :grin:


Sorry if I'm being a bit harsh. This organization just makes me very sad and upset.

Bravesj858 wrote

You are quite right, this is nonsense. For a start, food texture is not sensed exclusively with the taste buds, as far as i know. The mouth is full of touch sensitive nerve endings.

Secondly, if anything autistics are thought to be over-sensitive to food textures, and the extra or superior sensing abilities that autistics often have explains a lot of the idiosyncratic and definite food preferences that autstics have, but curebies like this dope-brained mom never think of autistic traits as superior abilities. :? If this know-nothing housewife had ever bothered to do some serious reading about autism/AS when her son was diagnosed, she might have read Hans Asperger's original paper about asperger syndrome (translated) and she might have noted that he observed that the aspie kids who he studied were unusually sensitive to be poked in the back of the throat with tongue-depressors by the doctor doing his daily medical rounds. She might have figured out that these kids did not have deadened sense of touch in the mouth, but instead had super sensing of touch in the mouth and throat area. Autistic super-sensing has been studied in detail by some professionals, who have labelled this set of traits as "Sensory Integration Dysfuction", and they have identified hyper-sensitivity to touch stimulus in the mouth as a feature, but I guess it is to much to expect some dumb-@#$% curebie mom to know that much.

This is just typical parent behaviour.  They moan about never having any time to themselves, how their kids are "driving them crazy" but at the end of the day, they say that they would not be without their kids.  I can't help but think that people should not have kids if they don't like them.  It's like having a dog if you don't like dogs. Go figure.

I agree with you cybermintz. Unfortunetly parents who have an Autistic child, I assume mostly NT parents, act as if their child is no more than a dog. They think they can talk disparingly behind their backs about them, and they're not going to know about it. They're Autistic, not Deaf.

As a parent, more NT than not, I would like to change the perspective.

First, the mom can't be doing too badly since the child has a positive self-image of himself, as in seeing himself as smart.

Second, news stories, especially local ones, often misrepresent things that people say.  They are trying to get complicated issues and quotes summarized into a short clip.  And they are writing about things they have little personal understanding of.  So, it is never going to be the whole story.  It may not even be THE story.  I think journalists work hard and do well within the realities of the media, but the constraints those realities create are important to remember.  I understand that all of you get frustrated by missconceptions these news stories create within the public at large, but that doesn't mean the specific individuals quoted are at fault.  Get frustrated with the inappropriateness of reporting on autism in anything so short formated, instead.  Channel that into asking the media not to print stories if they cannot have the length and depth it will take to make them useful.

That the mom overgeneralized the taste issue ... yes, parents do that.  We overgeneralize based on our experience.  We use the royal "we" far too often.  It doesn't mean we don't know better; it means we are busy and harried and not selecting our words carefully.  The mom may or may not understand the issue is more complex; there really isn't enough information in the one article to tell.

Anyway, just an opinion.  I agree with a lot of what has been posted by you all, but I think it is important to always look for the other side.

wrote

She didn't overgeneralize, she was just plain wrong, but she was obviously talking as though she had some knowledge of autism. NTs seem to think it is forgivable when they try to give themselves an image as a knowledgeable person but haven't really done their homework and don't really have a clue. When someone tries to create a big image for themself even though they don't know jack and they misinform others, I find that unforgivable. If the whole issue of autism is too complex for an NT mom to have time to read about or understand, maybe she should admit she knows nothing and just listen to what others have to say on the subject. NTs seem to have a very casual attitude towards matters of fact and truthfulness.

Why do people think the mother in question was whining? I certainly didn't get that impression - the article simply noted that care had become a constant in her life, but that she *wasn't* complaining about it.

I actually think that, for an Autism Speaks article, this was actually quite a reasonable article! Oh and Lili, getting something wrong is not 'unforgiveable' even if it does lead to the spread of poor information. That's called making a mistake.

It's no mistake when someone pretends to know about stuff that they know that they don't know about.

I guess it starts with the simple fact you and I disagree on the mom's motives.  You assume she may be trying to set herself out as an expert; I assume a journalist somehow knew her or was given her name and she agreed to be interviewed in the hopes of getting more information out there that might ultimately help her child.  I don't see anything indicating she considers herself an expert or is seeking to create an image for herself.

I wouldn't say I have an intentional disregard for facts, but I will move forward with less than perfect information when my husband won't (my husband isn't offically an Aspie but likely has more Aspie traits than I do; it is our son who is considered Aspie).  The reality is that my husband's need to make sure his facts are perfect essentially immobilizes him.  If I wait for him to get all the ducks in a row before we do anything, we would never DO anything (he agrees with this statement, by the way, and we are working together to find the best balance between our different approaches).  There are times you should make the practical decision to move forward without complete information just so that you move forward.  It's a judgement call.  Too little factual information and you mess things up completely; expect too much perfection in your factual information and you risk inaction.  So, I don't think it's that NT's have a blatant disregard for facts, although come certainly do; I think it's more that NT's recognize that sometimes imperfect information is better than no information (I'm waivering the choice of the word "recognize" as v. "believe," but I honestly believe that "recognize" is appropriate here - have I disclaimed enough, lol?).

I agree with DW_a_mom, I don't think that the mother in question was trying to set herself up as an expert. She was just expressing her honest viewpoint. Fine, she got her facts wrong. If I met her I'd explain that to her and then ask why she thought as she did. I really don't think there's malice here at all.

Anyway, the number of times that we aspies get picked up for 'saying the wrong thing' we really should know better than to start doing the same thing ourselves!