Being Autistic, Being Human

1 Oct

I am not a religious man. I don’t believe in any sort of god. However, I have lots of friends and family who do.

I also note from time to time that religious groups can be very ‘neurodiversity-friendly’ to use an awful, clumsy phrase. At the moment I’m downloading what looks like a very interesting Podcast from Speaking of Faith entitled Being Autistic, Being Human. It is described thusly:

One child in every 150 in the U.S. is now diagnosed to be somewhere on the spectrum of autism. We step back from public controversies over causes and cures and explore the mystery and meaning of autism in one family’s life, and in history and society. Our guests say that life with their child with autism has deepened their understanding of human nature — of disability, and of creativity, intelligence, and accomplishment.

Now _that_ sounds good! Admittedly I haven’t finished download it yet – my download status bar says 88% – and hence haven’t listened to it and there is a slim possibility its some guy shouting ‘CHELATION! LUPRON!’ over and over but I doubt it.

Give it a go – wouldn’t it be nice to hear autism being used in a context of deepening peoples understanding of human nature?

9 Responses to “Being Autistic, Being Human”

  1. Elissa October 1, 2007 at 10:11 #

    Wouldn’t it be lovely! Thanks, Kev.

  2. bullet October 1, 2007 at 10:29 #

    I hope this is the case :).

  3. Mat October 1, 2007 at 16:25 #

    When I first saw that title I was skeptical (blame one too many discussions I’ve been in/essays I’ve read which attempt to define ‘humanity’ by looking at what is ‘inherent in the human condition’ that autistics lack) but randomly googling I’ve discovered that apparently the main person interviewed is Paul Collins, who wrote Not Even Wrong (and keeps a wonderfully weird blog I read when I remember to)

    http://weekendstubble.blogspot.com/2007/09/putting-voices-and-faces-to-story.html

    So.

  4. Ms. Clark October 1, 2007 at 22:35 #

    It’s an interesting interview. It’s too bad they were talking about ASD people and only had a recording of Temple Grandin as a voice of autistic people. They could easily add an autism spectrum person, or at least plan on another interview with some ASD people.

    They said some dumb things, but most of it was good.

    Collins touched on the idea that **maybe** the really profoundly autistic should be eliminated or cured or something … without realizing that the “profoundly autistic” are not necessarily wanting to be cured and that some of the scary looking stuff associated with any sort of autism is a result of the emotional abuse or bullying or a bad environment, it’s not intrinsic to “autism.”

    They didn’t really challenge the idea of institutionalization.

  5. Ian MacGregor October 2, 2007 at 01:00 #

    I listened to it over lunch. I don’t think any of the suppoters of this site will have any problem with it. I also imagine most of you when you listen will be saying how like my child. My child is nothing like the child on being discussed. There is a passing reference to children, especially girls with low-functioning autism, and understanding how different that struggle.

    Autism is a defined disorder. The relevant parts of the DSM-IV manual are on line. In the current Journal of Autism and Developmental Disorders there is a list of things to be checked for in a child of 12 months. A list that anyone who thinks their child suddenly became autistic should be given.

    My daughter I’m convinced was autistic from birth. She at one time had language. She knew the name of nearly everything in the house. At 18 months she knew the alphabet, not to recite it, but to recognize the letters. She loved sitting in my lap while I played Scrabble with her mother and revealing, “got the Q!” She generalized well. Show her a daisy and her its a flower, and she would know that roses, and fuschias were flowers as well. She had however no social language whatsoever. No Mommy, no Daddy, no bye-bye. She never mimicked anyting we did, she never babbled, never exhibited any sign of separation anxiety, never bonded to us. She exhibited nearly all the traits mentoned in the journal article metioned above
    She however was curious about the world.

    Shortly after her second birthday, no long after she had begun to make verbal requests, she started to withdraw. Eventually she lost all her expressive language, her behaviors deteriorated she scratched and bit, perseverations became pervasive. We thought surely this will pass. There were times when she say a word or a phrase, always appropriate, by the way. I’m sure we waited more than we should have, at about 30 months we took her to her pediatrician. He told us to wait. After a few more times asking for his help we went to see a doctor at Children’s Health Council who confirmed waht we had suspected.

    We read the book on the Maurice children, and thought ABA would b e the trick. I think ABA was helpful, in stopping here from sinking further down the spectrum, but nothing happened to our daughter like happened to the Maurice’s kids. My wife found the ABMD group and thought that was the way to go. We went to someone who recommended NAERT, one of the most ridiculous therapies I had ever heard. We had one visit with him. We flew to Baton Rouge to see Amy Holmes. We started GFCF, epsom salt baths, Nu-thera elixir. Gave her medicine to kill off the yeast, gave her probiotics. No improvement. We did everything short of chelation. We also took her to see a DAN doctor in Salt Lake City . Paid for the lab tests, then did’t follow through with the DAN treatments. Living in a world where my mind told me it was hogwash, but my heart telling me, if there’s a scintilla of a chance to do so.

    Meanwhile, we have friends who swear by their DAN doctor and attribute to him the progress their children have made. I’ve stopped tryig to argue against them. Their child is exhibit b and mine is exhibit a. Post hoc ergo proctor hoc has a dull ring when they see an engaged child having a great time with freinds versus a child who is not.

    Seven plus years since the diagnosis. I don’t care if she comes of the spectrum or not. I would like her to move up it at a faster rate than she is doing. In case your wondering, my child is definitely not soulless. She has much more spunk than I had at her age, and through the opaque glass of her autism her personality shines through. I’d like that window to be clearer and would not mind a bit if it disappeared completely.

  6. Ian MacGregor October 2, 2007 at 07:57 #

    I listened to the interview, At no time did Collins suggest that profouldlly autistic be eliminated. He did intimate that his positve view of autism would be hard to extend to people who are a low-functioning autism.

    On this site people apologize before using words such as high-functioing. People are afraid to say that my daughter is mentally retarded. Not for any insult they may cause her or me, but it’s a part of autism which needs to remiain unmentioned if we are to take a universally postive view of the disorder. For goodness sake, retarded just means she’s late in her mental development. Does anyone really think that’s untrue?

    Yes, mental retardation is a bad thing. I wish she didn’t suffer from it. That doesn’t mean ny daughter is worth less than any other person on this planet. It doesn’t means she’s soulless. Her impact on us has been nothing but positive.

    There is a great list of autistic traits to be looke for at 12 moths of age in the Journal of Autism and Developmental Disorders. I wish we had access to the list nine yearrs ago. We would have known what we were dealing with.
    She had so many of those traits

    She also however, knew the names of everything in the house. She knew her alphabet. At 18 months she like to point out the letters om my sweatshirts, and loved to sit on my lap when I played Scrabble and reveal, “Got the Q”. She generalized well. I remember showing her, a rose, her fist flower, and her identifying a daisy as a flower as well. Show her a picture in a book, and when she saw it in real life she would makje the connection.

    Wr dismissd her autistic traits because she was accomplished in other ways. An aunt of mine said she’d never seen a baby who wouldn’t make eye contact. My parents said it was unusual for her not to have separation anxiety. My sister suggested autism just after she was two. Just around that time her language started to leave her. In a couple of months it was gone. Our pediatrician told us to wait. Her conditioned worsened perseverations became pervasive, she became very aggressive. It was apparent our HMO was going to help. We took her to Children’s Health Council in Palo Alto, and she exhibited every autstic trait except those which are language related a she had no language.

    She had just turned three. We entered the world of IEP’s the school distric, not Palo Alto, wanted to wait a few months before holding the IEP. I was feeling guilty of having waited so long, before taing action. I reminde dthem that the law says 10 days. We hirde an ABA therapist on our own. The school distirict was willing to support an in-home program for her. They gave us the hours we wanted. Surprisingly, the Regional Center representative who repeatdly told us he was her advocate, argued for fewer hours, and fewer therapies.

    We read the Maurice’s book about how wonderfiul ABA is. I believe ABA helped stp her slide, but she never grew to look forward to her sessions.

    We tried various biomedical therapies. Even took her to see Amy Holmes in Baton Rouge. I coudn’t however bring myself to chelate her. I guess you could say our endorsement was tepid. We gave her epsom salt baths, gave her something to kill off the yeast in the intestine, gave her probiotics, vitamins, but not in the large does recommended. All that time I was was wondering of it could harm her. ABA held no magic neither did anythng biomedical arena. Of course thr biomedical fans will say the problem was that we didn’t chelate her.

    We soon found that nearly all the folks on the biomedical lists had fairly high-functioning children. If our daughter could do thse things, we’d know our prayers would be answered. We couldn’t understand what they wwre complaining about. Also any therapy no matter how ridiculous from NAERT to homeopathy had it sdvocates. Questioning their efficacy was forbidden.

    My daughter has made great progress over the seven plus years since she became profoundly autistic. I think she’s just seriously so now. Her progress has been very much slower than other children we know. Studies show children more heavily affllictd tend to progress further. Also if they don’t make signiificant progress isoon chances are their progress will remain very slow.

    Mr. Clark, how is your son, I presume, doing. Can he express hmself. Do you placed a bolt on your front door to high for him to reach? Doe he know his way home?. Does he lack any concept of numbers. Is your home still child-proofed for a ten-year old?

    Despite all her problems her personality shines through. Her smile lights up the room. She also has a cat-that-ate-the-canary grin that makles me think she has begun to understand right and wrong.

    Are you saying things should not be done to help the profoundly autistic move up the spectrum?

    My daugheter has missed out on much of her childhood due to autism. She doesn’t realize that. It doesn’t bother her at all. It doesn’t bother her that she has no freinds It doesn’t bother her that her life-expectancy is significantly lower than an NT child’s. These things however do bother me.

  7. Kev October 2, 2007 at 08:52 #

    _”n this site people apologize before using words such as high-functioing. People are afraid to say that my daughter is mentally retarded. Not for any insult they may cause her or me, but it’s a part of autism which needs to remiain unmentioned if we are to take a universally postive view of the disorder. For goodness sake, retarded just means she’s late in her mental development. Does anyone really think that’s untrue?”_

    Ian, this site has been in existence for over four years. Are you really sure of the veracity of what you’re talking about? I’m most certainly not ashamed to say that my daughter is ‘retarded’. I only rarely use the word as it is not in common parlance in the UK. I would ask you to read this post and view the video it refers to and then reconsider the above paragraph.

    What people _do_ do is try and realise that the terms high and low functioning are pretty much useless and can change on a daily basis. They are purely medical it seems to me. According to medicine my daughter is low functioning. However, if they heard her sing or saw her ability with memory then they might think again.

    I found myself grinning and nodding through much of your middle section (of your comment, not you ;o) )

    _”Are you saying things should not be done to help the profoundly autistic move up the spectrum?”_

    This is an issue of profound difficulty. I don’t believe personally that the spectrum is a sliding scale to be moved up and down. I do believe children progress – which is born out by the science. I also believe (and practice – and although I do not speak for her, I know Ms Clark does too) teaching methods that aid and enhance progression and education.

    _”My daugheter has missed out on much of her childhood due to autism.”_

    Has she? From the way you describe her she seems totally happy. Is it really the case that she has missed out? Or is it more that she has not had the childhood you had or expected her to have?

    _” It doesn’t bother her that her life-expectancy is significantly lower than an NT child’s. These things however do bother me.”_

    Really? Could you cite me a source for that?

  8. Sharon October 2, 2007 at 10:32 #

    Ian, I don’t use the term ‘retarded’ because, like with Kevin, it’s not the terminology used where I live. My 7yo autistic son is developmentally delayed. He was labelled as ‘having moderate to severe autism’. Like your daughter, he is very different from non-autistic same aged peers. But he’s happy, he’s developing all the time. He’s gaining more language, knowledge and understanding at the rate that’s right for him.
    I don’t subscribe to the notion of high and low functioning. It’s more complicated than that. Everyone has their strengths and areas of difficulty.

  9. Ian MacGregor October 2, 2007 at 16:16 #

    I watched the video. I know this will sound crass, but how do you know those are her words? This is not to say, I think a person such as her incapable of having such thoughts. It just reminds me of the fraud of facilitated communications. Parents duped into thinking they had given their children voices, when it was the facilitators re doing the talking

    Autism is a defined disorder. I don’t think the DSM-IV manual is complete enough in that it doesn’t lend itself to diagosing the disorder much before three. However, it is how autism is defined. The number of symptoms, and their degree mark whether a person is profoundly or trivially autistic or somewhere in between. The definition may be imperfect, but it is the one we need to use to discuss the condition

    My daughter has days when she is more “autistic” than others. These day to day fluctuations are immaterial. They pettifog the issue on whether a child is low or hign-functioning. It’s how they are week to week. Yes eveyone has their strengths and difficulties, but that doesn’t mean these attributes are evenly allocated among our children.

    On happiness. You are right she is currently a happy child. This is a fairly new development. I don’t think she was happy when she was running around screaming and tipping over furniture, attacking us and other children. But that’s just me. She probably was positively giddy! She hasn’t upended furniture in three years. She does give us “what fors” on her bad days. For years every day was a bad day. There is a difference in things sporadic and things chronic.

    For some reason I am currently blocked from access to the Journal of Autism and Developmental Disorders. I’m failrly certain the study of life expectancy was published there. The causes of death were seizure related. It was not because of unsafe actions.

    Happiness is a great thing, but not the only thing . If you saw a child banging his head against the wall, and knew that made him happy, would you stop him? I think so, unless you are entirely devoid of compassion.

    One has to question whether actions taken are truly for the child’s benefit, or done to please the parent. This is true with NT children as well. However, children do not always know what is best for them If we don’t we are imcredibly aloof

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