Autism Street

Under Pressure

May 25, 2006 by Do'C  Printer-Friendly Version

17 Comments

1. Comment by Jannalou — 25 May, 2006 @ 10:47 pm

   Those questions you asked at the end of this post are the same questions I had in mind when I wrote my latest post.

   I still find it amazing when we of the Hub coalesce like this without planning it ahead of time…

2. Comment by Camille — 25 May, 2006 @ 10:55 pm

   What would one do if one found oneself being the outsider tomorrow? All it takes is some unexpected accident, a stroke, a near drowning, a crash, massive stress that makes the personality break -perhaps temporarily - something like fugue or amnesia. A badly burned face a loss of limbs, being poisoned, catching a disease … any of those things and more could make one suddenly the outcast, unemployable,unable to speak, pitiable, worthless, ugly.

   We are just a breath away from being disabled, that’s what I find so fascinating. And we all get old. What did Hitler say to old people when he was busy killing off the “useless eaters”? Some powerful leaders still around had to be gray headed when he decided to go after the “disabled.” Did they think that they’d get good treatment when they were no longer continent and needed soft food and to have someone yell in their ear to get a message across? What about when they’d get so annoying and keep repeating the same things over and over again, “what day is it?” “do I know you?” What about when they can’t remember where they are? Not so different than autsitics.

3. Comment by Dad Of Cameron — 25 May, 2006 @ 11:04 pm

   Hi Jannalou, great to hear from you. It is kind of cool to know that such themes may be more universal than we are aware of. I’ll make sure to get to reading your Physics post soon!

   Hi Camille, my thoughts exactly and the reason for my post. Also my opinion is that acceptance is enjoyed by society’s masses for the most part. What is even the purpose of denying it (subconsciously or purposefully) for the “people on the streets” or “people on the edge of the night”?

4. Comment by Sharon — 26 May, 2006 @ 12:59 am

   Those are important questions.
   What Camille says is so true, I used to never think much about disability issues, much like most people probably. It never occured to me that I could be disabled someday too or that my child would. I suppose it’s selfish that I had to have an autistic child before opening my eyes to the way society treats disability.
   But I’m glad it has happened now anyway. I feel privilaged that my son has been able to help me learn and grow.

   DOC, the photo in your previous post is beautiful. Your son looks a lot like my 4yo, same big brown eyes, same wide smile!

5. Comment by Not Mercury — 26 May, 2006 @ 6:06 am

   Excellent post! Thank you

6. Comment by Rose — 26 May, 2006 @ 6:08 am

   Reading Gettingthetruthout changed me. Totally changed my heart–although I was on my way beforehand, it sped up the process 100X.

   Great Post!

7. Comment by Estee — 26 May, 2006 @ 7:03 am

   No it’s not easy. That’s why celebration is important.

8. Comment by Kent — 26 May, 2006 @ 7:41 am

   Thank you DOC. I’m going to share your thoughts with my wife. I’m still struggling with the intervention and acceptance model and where the “line” is drawn everyday. Not accepted on the Autism Hub and not accepted by the “cure” crowd.

9. Comment by Joseph — 26 May, 2006 @ 8:23 am

   We are just a breath away from being disabled, that’s what I find so fascinating. And we all get old

   That’s so true. Everyone is disabled or dead eventually.

10. Comment by Dad Of Cameron — 26 May, 2006 @ 8:26 am

    Hi Sharon, thanks for sharing and the kinds words about Cameron’s photo.

    NM - a blogger with a knack for relating meaningful music. Don’t miss his post 4 Songs.

    Hi Rose, me too.

    Estee, you are so right and I don’t think it’s been done better in the blogosphere than Kev’s Beautiful Autism video. Day to day it’s up to us.

    Hi Alexander’s Daddy. You’ve pointed out something important with your second sentence. Each day does present a new opportunity to redraw that line in a new place or not even draw it at all. Regarding acceptance, how would a group like the Autism Hub treat your son as compared to the “cure” crowd?

    Hi Joseph, sounds like you are in touch with reality/mortality.

    Any readers:
    “Acceptance” does not equate with “absence of intervention”. Acceptance is understanding and loving unconditionally. Understanding often includes intervention, especially when it comes to education and communcation (which both can require approaches and tools different from “typical”). Acceptance is not “buying in” to devastation rhetoric, epidemic hype, and devaluation in the form of pity.

11. Comment by Bonnie Ventura — 26 May, 2006 @ 9:40 am

    Anyone could look around tomorrow and find that he or she was “disabled,” even without any physical or mental changes whatsoever, just because society’s view of disability changed. This happened to many autistic adults who grew up before the recent broadening of the diagnostic criteria and therefore weren’t considered “autistic” as children. Definitely a huge shock (and a wake-up call) for those of us who never gave much thought to disability issues before.

12. Comment by Kent — 26 May, 2006 @ 5:54 pm

    “Acceptance” does not equate with “absence of intervention”. Acceptance is understanding and loving unconditionally. Understanding often includes intervention, especially when it comes to education and communcation (which both can require approaches and tools different from “typical”). Acceptance is not “buying in” to devastation rhetoric, epidemic hype, and devaluation in the form of pity.”

    I believe in the above 100%, however, to some Hub members and the administrator, that doesn’t seem to be enough. I would challenge anyone to find a post of mine where I’m buying into “devastation rhetoric, epidemic hype and devaluation in the form of pity.” What you’ll find is quite the opposite. However, it seems to me that devaluation in the form of animosity and scorn for parents coming to terms (all most all of who are new to the “diagnosis”) and the inevitable learning which that encompasses is what the Hub is all about. Maybe I have it wrong, but as someone whom is likely on the spectrum himself I’m beginning to understand where my son begins and where I end. According to Joseph, my 38 on the Autism Quotient puts me in the more severe area of HFA/Aspergers. It’s very clear from my kindergarten (1st attempt at kindergarten) picture posted on my site that I was not typical. It’s clear from my memories that I was “hated” by adults as a child. It’s clear that I wasn’t interested in friends as a young child. It’s clear that I have verbal stims. It’s clear that I have many of the ritualized behaviors. It’s clear that I have many of the unusually intensense preoccupations. It’s clear that I grew up in an era where I was able to pass as active but odd. However, its unclear that my son will have those advantages. Its unclear who will be friend or foe to my son. It’s clear that I have a strong dislike for people bigoted of autistics (see my profile for additonal blogs such as Autism Bigots, Autism Pride and so forth). It’s also clear that the Hub, or rather certain members and the administrator teased out one post to show that I didn’t follow the dogma and thus “erased” me. Its clear that this has happened to me all my life. Its clear that it is currently happening with my son ( the first preschool wouldn’t accept him because of his diagnosis). Its clear that my son will be marginalized by others. Its clear that we are all marginalized to some extent. Its clear that even in this supposed community of acceptance that you will be marginalized depending on whether you tow the party line. Its clear that this post should have ended a long time ago.

13. Comment by Dad Of Cameron — 26 May, 2006 @ 7:37 pm

    “It’s also clear that the Hub, or rather certain members and the administrator teased out one post to show that I didn’t follow the dogma and thus “erased” me.”

    Alexander’s Daddy,
    I have no idea what to make of the above - I’m not familiar with the post you’re referencing and I have no idea if or to what degree you’ve already discussed any of this with the Hub admin directly.

14. Comment by Dad Of Cameron — 26 May, 2006 @ 9:35 pm

    Alexander’s Daddy,

    I think I found the post you are likely referring to.

    I looked back through your blog and found the following recommendation at the end of a post about NAA and the CDC:

    “For more information, go to nolinkhttp://www.nationalautism.org”

    Let’s take a look at some of the recommendations from them (NAA):

    Treatments
    Chelation Therapy - they claim that many autistic children suffer from heavy metal toxicity.
    HBOT Therapy - not safety or efficacy tested, and a link to Dr. Bradstreet follows.

    Reading:
    Evidence of Harm, David Kirby
    Children with Starving Brains, Jaqueline McCandless, MD

    An “Escape The Hopelessness” Campaign

    A “Think Autism, Think Cure” Slogan

    I understand why the Hub doesn’t want supportive affiliation with such content - It has little to no scientific basis, and the recommendations are heavily invested in the autism as a defect, a source of hopelessness, in dire need of cure, etc.

    If I have the wrong post let me know. That being said, I’m curious if you discussed the content of this post (like modification, follow-up post, etc.) with Autism-Hub admin. I think the content of that post is objectionable. That doesn’t mean you are objectionable.

    If you think “acceptance” of content for the hub, and “acceptance” of a person for who they are, are the same thing, I’d recommend reading up on equivocation. If you’d like to discuss this further, you’re a) welcome to continue to comment here, b) e-mail me privately - see comments note at top of page, or c) I’d recommend to take up this issue with hub admin, but if you just want to talk about it here that’s fine too, just remember I don’t run the hub.

15. Comment by Kent — 27 May, 2006 @ 5:08 am

    Oh, I found it. To me the story was about the CDC allegedly was obtaining confidential medical and educational records of autistic childrent without parental consent for a secret study which was a press release by the above association. That post was taken in its entirety off a google news search. Whatever the source is, I don’t think we want the federal government to be doing these things. I also don’t think it is a stretch to think that this executive branch currently in power is incapable of doing something clearly illegal like this. I don’t give a rat’s a** who reports or what they stand for if it is true. Its a leap of logic that because this organization was the source of this information that I somehow support the “medical” quackery they recommend. This press release struck a cord with me because my child’s medical records have been illegally used by his pediatrician’s staff. His pyschological records were released to a daycare because a nurse on his staff had a daughter at the same daycare and didn’t want my son to attend it so she copied the records and gave it to the preschool director. If that happened to your child, the above article might “strike a cord” with you as well. I’m very sensitive to these things as it has repeatedly happened to us. Just ask Estee how my child was “medically raped” by a well known researcher at Duke University involved in genetics research. However, anyone would be hardpressed to find a comment on any of the dozens of blogs, my blog etc. where I advocate for quakery, cures and so forth nor non acceptance. In fact, I’m the only one I know of who is as blunt and in your face about the bigotry suffered by autistic people. How can I be confused with someone who puts their kid in a plastic oxygen tube or rubs dangerous DMSA creme on their child or any of the other “looney” cure crowd crap? And if anyone confuses me with that type of person then it is they who needs to read up on equivocation, not me.

16. Comment by Dad Of Cameron — 27 May, 2006 @ 8:08 am

    Alexander’s Daddy,

    “How can I be confused with someone who puts their kid in a plastic oxygen tube or rubs dangerous DMSA creme on their child or any of the other “looney” cure crowd crap?”

    My guess is that this is because everything you’ve written in the comments here was not included in your post and it should be. It better expresses your true thinking on the subject, rather than potentially simply passing a new parent to NAA for information, without comment or analysis from you. I think it possible that you’ve been misunderstood (based on your blog), something I would think could be addressed by hub admin.

17. Comment by impatientpatient — 28 May, 2006 @ 12:03 am

    On the outside looking in- that IS my life right now. Love the Bowie song- one of my faves from years back.

    I just ran into one of my former “kids” with Angelmans the other day, and I was so happy, as was he. He remembered me immediately and started laughing and flapping to beat the band. I am sure it has been seven years since i last saw him. He is still one of the most beuatiful children I have ever laid eyes on.

    I realized that my babies grow up and are going to be thirty and that they are going to be living away from their moms and dads. This is how it usually goes. They are institutionalized and there are few options available to do otherwise. There are few resources for people willing to keep their children at home. Even with young children with disabilities there are very few things one can count on, and a lot of hoops to go through before one can access help. I am working for an agency right now that is desperate for staff that give two hoots.

    How can I not give two hoots? To me it is unthtinkable to not care. I take my work and my stories home with me every day as I work with vulnerable and at risk children. I work with severely disabled children. I cannot imagine not caring for these kids almost as much as I care for my own kids. Because I work with special needs children I appreciate that my own kids have a much easier row to hoe than they can imagine.

    My husband is at home now from a work injury. There are not a lot of supports in place for the middle class worker when they are disabled. Workers insurance is short term. Getting a medical pension is a months long process that takes its toll and is not very good for the bills that are still needing to be paid. I look out at the world as it goes on and am so profoundly sad and angry that he is in constant pain. I cannot fix it no matter what I do. No-one can help him. There is nothing medical or otherwise that can help. He is so young and it is so unfair, but it isn’t because it is just life. Stuff happens. I gain more of my equilibrium every day and try to do as much as I can to keep us afloat so that we do not become a statistic. I miss my old life. After two and a half years there is almost a rhythm to this new one.

    The parallels between how we treat children who have a difference and adults who are disabled are profound. It is unconscionable that we treat people as if they are dangerous or burdensome or valueless. I struggle with this sometimes. There is so much misunderstanding about how life changes affect all the people involved. There is so much more than just wishing things away and waiting for a magic solution- there is so much day to day stuff that gets left behind in the struggle to find a semblance of normal. Not the world’s normal, but some way to get a bit of a “land leg” feeling again after a tumultuous journey on the high sees.

    Feeling sorry for oneself to the point of harming another is not a good thing. No-one should kill a child because they are a burden to them. Let that child live somewhere else. That woman was terribley and horribly wrong to do what she did. Her pain should have been trumped by the rest of her families pleasure in that baby.

    What can we do to combat the fear and hatred of those who are disabled? Speak, write, talk, tell our stories. Every day I tell someone in my life the truth- good and bad - about how my life is. When I need help I know I can get it—– If I just ask. But like most I am afraid to.

    Thank you for letting me think about these things tonight- there are far worse things out there than what I deal with, and I am so grateful that I am able to help others along with their kids.

    As for false hope and false solutions- spare me from those. So far I am not seeing chelated children. I will not know what to do if I do see a parent involved in that. It will be a struggle to watch and bear witness I am sure. People need to feel they are doing SOMETHING —- I know that feeling——- it is just unfortunate that they are doing that to their babies.

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