Comments on: Exactly who is unresponsive here?

By: Alyssa

Alyssa — Thu, 29 Nov 2012 17:19:40 +0000

Laura Daigle, I like your response. I am just starting to work with autistic children as an OT assistant and I really am looking for some guidance/feedback from parents as well as professionals. I am trying to find the balance between letting the children interpret and relate to/experience the world in their own way and giving them the tools they need to function to their full potential. It seems as though you share this perspective as well. I would love to exchange emails with you to ask you more about your son and the different ways you try to accomplish this. My email is alymicfern@gmail.com if you would be so kind as to share some of your experiences with me. As it has been many years since your posting, I hope that you will still be willing to share. Thanks!!

By: Rodentfancy - Autism Awareness Week

Rodentfancy - Autism Awareness Week — Thu, 02 Apr 2009 01:11:03 +0000

[…] caused much grief in the autistic community by bullying autistics into silence, and presenting autism in a way that dehumanises us. I will discuss these issues in depth in upcoming […]

By: Phillida Phoenix

Phillida Phoenix — Mon, 13 Aug 2007 22:24:18 +0000

This post reminds me of a story I once read in some trashy women’s magazine; the story was sent in by a woman whose husband was diagnosed with Asperger’s sometime after they got married and she was relating how she “taught” her husband to “be more romantic” and to “give her regular compliments”. If I remember correctly, she set up a card index file with a “compliment” written on each card, such as “I love stroking your hair, it feels all soft and silky”, “you have the most gorgeous emerald green eyes, I love looking into them”(!), or whatever. And she’d regulary pull out a handful of these cards and tell her husband to choose one, and then he’d have to recite whatever she’d written on it like a bloody script or something. I think she even had a system of “rewards” to encourage him to polish his performance. If MY partner tried to put some crap like this onto me (he’s not at all likely to, ‘cos I’ve been lucky enough to meet someone who loves me just the way I am) my response would be something like: “I’ll put on a silly little paper hat and jump through a hoop for you, if you like!” – I certainly hope that that woman’s husband has, by now, had the sense to divorce her and that he’s met a female version of my Andrew.
I don’t understand this obsession with eye contact, either. As Andrew has pointed out to me when I told him about an incident when a Buddhist leader was patronizing and verbally aggressive to me about my lack of eye contact when shaking hands with the UK general director of Soka Gakkai (a lay organisation of those who practice Nichiren Buddhism), in some cultures it is considered very rude to look someone directely in the eyes.

By: Henry Emrich

Henry Emrich — Mon, 13 Aug 2007 16:47:15 +0000

There’s a good anecdote illustrating this principle about “responsiveness”:
There was this study (dunno the exact date or details), where they were testing whether people would “talk to machines” — such as voicemail and suchlike. Evidently, people were very freaked out when the machines were just silent…but when the researchers programmed the speech-synths to emit semi-random, non-verbal noises (“A-haaaaah!” etc.), the people became far more receptive to “talking to the machines”…..sorry if I don’t provide much detail here, but it’s anecdotal, as I said, but you could probaly do a google search if you can figure out what to search for. (Sorry I don’t remember it more solidly.)

If this study actually happened, I find it rather sad, in that it really gives creedence to that godawful presumption that most of ‘communication’ consists essentially of grunts, groans and grimaces (“body language” and nonverbal noises), and only a small amount of it is actually intellectual, in the sense of carrying coherent ‘meaning.’). This terrifies me for some reason….probably because the idea of having nuclear weapons run by people who react more to “how you say it” than to “what you say” is…..damn frightening, actually.

By: Tera

Tera — Fri, 19 May 2006 13:32:24 +0000

Please realize that if you think it is “gross” for us to refer to our children with autism as “like babies”, what we mean is that they need constant supervision like a baby or toddler.

Laura: I don’t have a problem with saying “so-and-so needs constant supervision” or “so-and-so has trouble knowing when he has to use the bathroom” or any other discription of someone’s needs. But having different needs than other children (or adults) your age does not make you a “baby” or “childlike.”

I’m 26 years old. I get easily lost in places that are not my house (because of a spatial disability), and need an assistant to leave the house. Some of those assistants have been children who are much younger than I am. That does not make me a child.

I’ve had imaginary friends for long past the age when most people give them up. That may be something more associated with children than adults, but that doesn’t make me a child.

My uncle has multiple sclerosis; he doesn’t speak, uses a wheelchair and is incontinent. Those things don’t make him a child.

I don’t think the difficulties or needs disabled people have are gross, or anyone’s fault. I certainly don’t think describing those needs is wrong. But those needs can be described without saying someone is like a child or a baby.

By: ballastexistenz

ballastexistenz — Thu, 18 May 2006 17:30:37 +0000

To Laura: I don’t think it’s your fault, I have a lot of those problems too. I was going to write about that in a separate post that never made it out. I don’t fault parents for how their kids are (well, okay unless they spoil them or something, but I don’t generally think that about parents of autistic kids), but I do have a problem with how some parents portray their children.

And to me, the “childlike” shorthand is not okay unless you’re talking about children. I need help getting to the bathroom, I have one of the crappiest senses of time I’ve ever known in someone my age, etc, and I also have brain scans that “proved” all of this to my parents. But I’m not a child, I’m 25 years old. I also don’t need the realities of autism explained to me, I’m autistic, I live with this all the time, I’m quite aware of these things because they happen to me too constantly. And that’s not at all where I have a problem with what parents are talking about.

If a 50-year-old paraplegic is incontinent, that doesn’t mean they have the “bowels of a child”, and if I function differently than other people, it doesn’t mean I have the “functioning level of a child” or the “mind of a child” (although I have plenty of tests that put my “functioning” at below the floor of tests of “functioning level” in various areas).

What I do have a problem with, is the way some parents (not all) portray their children for wide public audiences.

And no, I’m not like a baby just because I’m not like a standard-issue non-autistic adult. Wearing diapers doesn’t make a person a baby, being a certain age makes a person a baby.

By: kyra

kyra — Thu, 18 May 2006 17:02:52 +0000

i just watched the film and had many reactions, not all of them negative, but these were: i was disturbed by all the parents who spoke in front of their kids (not just the one about killing herself and child although that was very upsetting in particular). it shocked and saddened me that they didn’t think their kids could hear them. my son hears everything i say; he doens’t need to be stock still or staring at me to hear. the other thing that bothered me was an overall sense that these kids needed to DO such and such, an activity (like the puzzle at that particular time. why? when she said he’d do it later in seconds when he felt like it. why not let him do it when he feels like it? is doing puzzle so critical?). there was much prompting and directing and moving and manipulating of these kids without their consent. why is everyone so obsessed with EYE CONTACT? it doesn’t signify anything. i wanted the parents to slow down, to try and understand their kids and what they needed at the moment. (maybe they do most of the time. maybe we are just seeing these tiny snippets of particularly hard moments. there is no way of knowing how they are with their kids most of the time.) i wanted them to see their kids behavior as meaningful and purposeful and not dismiss it as sad or ‘tuned out’. i was mostly struck, though, with how scared the parents were. i remember feelng that way and i still struggle with stress and loneliness (but what mother doesn’t from time to time?) but i don’t feel panicked or heart broken or devastated. i wish the parents were getting more support, were feeling less frightened, were given more of what they need so they could relax and slow everything down. i guess i’m for remediation, not cure or recovery, and i guess many would take issue with me for that. but i want to give my son what he needs to grow into himself, whoever that will be, just like any other mother wants for her son–the ability to provide affectively and appropriately and lovingly for their child, for the unique individual they are. doing that for kids on the spectrum is harder than for neurotypical kids. it just is.

By: Laura Daigle

Laura Daigle — Thu, 18 May 2006 13:44:00 +0000

Please realize that if you think it is “gross” for us to refer to our children with autism as “like babies”, what we mean is that they need constant supervision like a baby or toddler. My 9 year old son cannot remember to go to the bathroom because of some of the physical issues that come with autism. He has no sense of time or danger. I cannot ask him to get himself a drink because of coordination issues. I cannot ask him to dress himself without a timer and constant reminders, because he will become very distracted between his underwear and his shirt. Don’t try to tell me this is my fault, please – I have MRI’s that say differently. His brain is wired differently. His “bad” behavior in public – which we avoid at all costs – is not a result of my “bad parenting” it is a result of his neurological difficulties and simply the way his brain is wired.

This is not to say that my son is defined by his autism. Although not all children with Asperger’s Syndrome have genius level IQ’s, he is one of the 40% who do. He is working on 6th grade level math (in the 3rd grade), reads at a 6-7th grade level and loves science. He wants to be a scientist, and I see no reason why he cannot. But brushing off his difficulties and just letting him do his own thing will not work as he moves into society.

To a certain extent, he will go his own way. But it is my job for him, just as it is my job for his non-disabled sister, to prepare them for the world and for their future. If I just let him hand-flap until he hit someone, if I just isolate him in a classroom with other children with autism, if I just let the outbursts continue, if I do not teach him how to regulate his sensory issues and his emotions, I am not doing my job, and he will not end up contributing to society in the way I KNOW he can.

Fortunately, my son speaks and speaks quite well. But his semantic and pragmatic speech is way off. He cannot continue a conversation with anyone with give and take, although, with speech therapy, he has started to be able to initiate a conversation for the first time in his life. Hopefully, the coming years will bring more improvement and more nurturing of his gifts.

By: lordalfredhenry

lordalfredhenry — Wed, 17 May 2006 22:38:21 +0000

Also, one of the first times I met an autistic who others had labelled as “severe” were surprised that if I held out my hand long enough that she would grab my hand without looking at me or my hand. I noticed she would look, and perhaps remember it was there and then direct her hand there without needing to look again. She could also catch a ball without “looking”. This also surprised some people in her family. They didn’t know perhaps that I’m now fairly used to being around autistics. They said, “She’s never done that with anyone outside the family before.”. I was a bit upset at that point that they were talking like she wasn’t there. I didn’t reply at all and just went back to playing with her. She’s the one I’ve commented on before who has a tracheotomy and the oxygen. She has a lot of medical conditions but all the same, there is nothing so unusual about “communication” because of it. I suppose some people are worried “how to do things?” or “not causing a problem”. I typically don’t think like they do or worry about the same things they do. I worry about a lot of things they don’t though.

By: lordalfredhenry

lordalfredhenry — Wed, 17 May 2006 22:32:18 +0000

As an autistic myself, I have gotten mixed signals and habits from various environments that seem to have confused the hell out of me. In the military, one is not supposed to look at people and they must look straight ahead. This is one environment where neurotypicals break that norm and they know that this is the environment to do it in. Because I didn’t understand a lot of the unwritten rules there however, my eye contact would get me reprimanded. ie: “stop staring at me” and “stop eyeballing me private!”. In the school environment, I had the oppposite problem from kindergarten up to third grade. It was, “John is very rude, he won’t look at you when you talk to him.” and “He won’t follow directions”. Because of my hearing, the way it is, I need to know that I’m being addressed, it doesn’t mean eye contact but I need to know the voice is being directed at me, otherwise it’s stored as mere data and fact and if it is a request, I needed a signal that is clear. The best thing was tapping the desk (not me) and then perhaps repeating my name enough times so that I’d pick it up. It required that but people want to be habitual about doing it all their normal way and won’t accomodate. I think it’s laziness on their part because I’m not so lazy that I haven’t tried to accomodate their normality. So, I didn’t know the signal in a school setting. I was ok at home with how my parents addressed me. What bothers me is that no one will give me the (pardon me) friggin’ protocol or the clear instructions of what they want before they go off and start telling others how rude I am. They might need to give me things in writing but sometimes that is so full of junk that it’s hard to see that either. So, I give up and I have picked an occupation where I can lock myself in my office or stay at home to work if needed. It’s the only way I can cope now. No one seems to be able to step outside their zone for me perhaps because of my status.

I get the feeling that people are relieved to see me in person because I’m very non-threatening at first. They think I’ll be easy to deal with, maybe even push around. Then they are afraid of me after some time.

Pardon the ramble. There is so much that this gets me going on in terms of what I could relate here.