If You Could Make Your Autistic Child "Normal", Would You?
We as parents of autistic children have so much to learn from other disabled "communities." I am considering showing this film, The Sound and The Fury at The Joy of Autism: Redefining Ability and Quality of Life event this October with a follow-up discussion.
The film is over the debate about implants to make deaf people hear. We see the debate concerning isseus of identity, community and how those in the hearing community view the deaf and how deaf people feel with these views. I'm not going to say much else here, other than this film is important to watch in the context of the autism debate: to cure, to normalize or to accept autism, and what acceptance means for each of us. I look forward to your comments.
CLICK HERE TO WATCH CLIPS FROM THE SOUND AND THE FURY
The film is over the debate about implants to make deaf people hear. We see the debate concerning isseus of identity, community and how those in the hearing community view the deaf and how deaf people feel with these views. I'm not going to say much else here, other than this film is important to watch in the context of the autism debate: to cure, to normalize or to accept autism, and what acceptance means for each of us. I look forward to your comments.
CLICK HERE TO WATCH CLIPS FROM THE SOUND AND THE FURY
27 Comments:
I imagine this will generate a lot of heated discussion. I know there are autistics out there who wish they were not autistic. My own son has said to me, "I don't want to be autistic," and he has also asked me to chop off his hands so that he will not be able to pinch people anymore. He pinches a lot. I would not change my sons into nonautistic sons, but my husband would jump at the opportunity, because he doesn't know what I know about autism. He doesn't really want to know. He's too busy and too beaten down on his job, and too much in denial about our slightly autistic traits to even see himself in his children.
A few years ago, I posed a similar question to AutAdvo, but from a Christian standpoint. I wrote in something like, What if Jesus were on the earth today performing miracles, healing the blind/lame/deaf/etc., how many would hop on a plane to the Holy Land to touch the hem of His garment?
How many would take their kids over there?
The way I see it is this way, as a Christian: If God wants my kids to stop being autistic, then He can do it. Short of that, I think they should remain the way they were born, the way God created them to be.
If I try to play God by altering their brain chemistry with meds or chelating them, or playing all kinds of other Russian roulette with them, then it's kind of like slapping God in the face and telling Him that He made a mistake when he created my kids.
That's why I believe that my kids should have the best nutrition I can manage to get them to eat, take their vitamins and fish oil supplements (because they don't eat any fish), and that's about it. I give them waaaaay more free time than I'm supposed to according to the experts.
I know that they like that because whenever they are done doing whatever they are doing for long stretches of time, they will come up to me and give me a great big hug as if to say, "Thanks for leaving me alone and giving me my space, mom."
What will you say when it becomes common knowledge that thimerosal caused the epidemic? Won't you feel foolish that you had people who wanted to help your kids and you ignored them?
I know too many "normal" kids. The majority are slightly to severely detestable.
No way would I change any of the autistic kids I know into anything other than themselves.
Next question:
It is evident from this film that a child adopts its attitudes and view-of-self through the parents.
It is also clear that the hearing parents jumped on the implant bandwagon and for the deaf parents, the issues of self-identity, acceptance as one is as a deaf person and accepting that identity and reality was very important to them. There was also a poignant scene where hearing parents were suggesting that the deaf ones were inferior.
By the end of the movie, it was very clear, to me anyway, that acceptance meant different things to hearing and deaf people. To the deaf, it was accepting deafness as part of their identity. The hearing believed that only the best opportunities could be sought after by being able to hear -- by joining the majority. To them, that was acceptance -- accepting the future -- that technology would eventually make hearing impariment a thing of the past. The deaf found "mainstreaming" challenging, but also found their solace within the deaf community. It was clear that the push to be "normal" put a great deal of stress on them.
Moving forward with the argument, I like to think as a parent, that I am not autistic -- I will never know the depth and breadth of my son's experiences as an autistic person. I can come close to it by learning from him and others like him. I can accept him, empathize, and learn much from him, but I am outside of his experiences. He will have to learn to also cope with me and others like me. His effort will also be to also accept my shortcomings, my non autism. I possess some sadness that I cannot share everything that he experiences.
Acceptance for me is not changing my son, but loving him as an autisitc person. Giving him every opportunity, in my mind, is a compromise. Despite my quest to accept and understand autism, I still have to acknowledge my bias' and beliefs and adjust them while helping Adam to also cope in my world while being in his. Autism and non autism -- a compromise -- a meeting, and respect, between two worlds. Perhaps this is the best we can ask for.
Oops. The question in response to something Autiemom said:
When a child says they "do not want to be autistic," where is the desire coming from? From the parent who says it, eminates it, believes that autism is something terribly wrong that the child picks up on that?
I think The Sound and The Fury can answer that question for all of us.
Estee wrote:
"When a child says they 'do not want to be autistic,' where is the desire coming from? From the parent who says it, eminates it, believes that autism is something terribly wrong that the child picks up on that?"
I take great exception to that on a number of levels. The most obvious one being that you have just implied that I have done that to my child.
Do you believe that it is impossible for an autistic person to have an independent thought, even if you don't agree with it? Do you believe that parents are the only ones capable of influencing a person to have an opinion about themselves, or isn't it possible that peers or lovers or coworkers or bosses or healthcare professionals or psychiatrists or any other types of people to drive a person to declare that they wish they were not autistic? Parents are only one part of many factors.
When he said "I don't want to be autistic," I heard him out and did not dismiss what he said, but I also reiterated for him that it is okay to be autistic. I said it is not okay for him to bite me, and I tried to explain that "biting me" is not the same thing as "being autistic." A particular autistic behavior might be wished away without autism being wished away for some, but my autistic twelve year old, cannot always see the difference between the behavior and his entire neurological makeup or identity as an autistic. By saying "I don't want to be autistic" and also expressing "can you chop my hands off?," what he really seems to be saying is, "I'm distressed by my inability to control my rages that cause me to act out and hurt the people I love."
For the life of me I cannot understand why you would imply that a child or adult who says "I don't want to be autistic" is merely echoing thoughts imposed upon him by others. I find that offensive because I believe that autistic people are able to formulate opinions and conclusions about things and themselves independent of outside influences. I also believe that a parent can be completely tolerant and accepting of autism and autistic behavior, and a person can *still* decide that they don't want to be autistic.
I might not *at all* agree with that view (and I don't), but it is not up to me to tell someone else "You don't really mean that. You are just echoing someone else."
I have never met a person on the planet who is independent of outside influences, and probably never will.
"Not independent of outside influences" is not the same thing as "not able to form an independent thought or make an independent decision."
I have always said that there is no such thing as an unbiased opinion, so I agree with you: we are all influenced by the beliefs and opinions of those around us, but we take bits and pieces of those things and synthesize them. We accept what we agree with, and we reject what we don't.
I am offended when people dismiss the thoughts and opinions of autistic people when these thoughts and opinions do not fall in lock-step conformity to the core values of the autistic advocacy community. It has been said that internet autistics make up only a very small minority of all autistics, who have not yet been exposed to our influence.
It is important to hear and take seriously the thoughts and opinions of all autistic people, even if we don't agree with those thoughts and opinions. It is one thing to try and dissuade an autistic person from saying "I don't want to be autistic." It is another thing to assume "I don't want to be autistic" means "I hate myself" or "my parent hates me." It is another thing to assume "I don't want to be autistic" is just some echolalia of something else.
I have read on several occasions autistic people writing that if they could cure themselves of being autistic, they would do it. I didn't like reading that, but I also thought that I need to take that statement seriously and maybe, if I knew them better, find out what is behind that statement.
It could be that for some people "I don't want to be autistic" is a genuine, original thought that actually means "If only I weren't autistic I could [get a job, get promoted, meet someone, get married, be happy, etc, etc]." Sometimes the statement actually means that the person is misattributing whatever is missing in their lives to their autism, when we all know that "lack of autism" will never in and of itself make a person happy. No more than "not being fat" or "being rich" will make someone happy.
So, again, even though everyone is influenced by everyone and everything around us, this is not the same thing as saying "nobody is capable of forming an independent thought." An independent thought is a creative process that happens when people synthesize information. They may form a faulty conclusion in my own biased opinion, but that doesn't mean that they didn't form it all on their own.
In the video clips we saw the children seemed to be following whichever adult seemed they seemed to be talking to at the time. It's hard to say how common that might be, but I think Estee's point is probably close to correct, that deaf kids probably reflect the belief system of their parents.
Some deaf young people (teens) go off and live in boarding schools for the deaf, so they only see their parents on weekends or less... I would say if they were in a Deaf culture school, they'd probably tend to go with what their peers were saying.
http://www.pbs.org/wnet/soundandfury/culture/voices.html
My concern is, yes, you can see the successful cochlear implants, and they sure look like a great idea, but how many children have died from the surgery? Maybe none. But how could one live with oneself if one's child died in the process of trying to give them hearing?
Autism and deafness are not analogous, cochlear implants are somewhat a reversible surgery. It would be possible for a person to get the implants and then go back to full participation in Deaf culture by not wearing the hearing aid part. It is totally impossible to undo autism, can it be prevented??? Maybe, but once autistic, there are only various kind of learning and maturing that happen, the person is always autistic.
It is closer to the analogy of gender.... some people want to switch their gender, but apparently many end up unhappy with the change... I think that as much as a transgendered person may be more happy as their new gender there is no way for a man born a man to experience being a woman the way a woman born a woman does. ??? That's my opinion.
As for you not being able to share parts of your son's reality because he's autistic and you are not, Estee, no one really shares another person's reality... and a mom can never know what it is to be a little boy, a dad can never know what it is like to be a little girl.... so? We appreciate what we think it might be like, and we say, "it's probably pretty great to be a little boy... but not the same as my experience as a little girl..."
I just wonder sometimes, whose side people are on?
Jesus healed because Jesus had something to demonstrate, read the account in John Chapter 9 that is most interesting.
Jesus had the power to heal everybody in the Holy Land, but he did not.
To heal the land is something different again, that is to say to heal the attitudes of a nation.
That is the healing we need today, to heal those in autism speaks from there desire to denigrate those of us whom God made autistic and I am not for healing because who would I be then?
Yes if the hard herted of Autism Speaks and CAN were to get on a plane to the Holy Land for a spot of hem touching, they might also be faced with a few harsh truths and rebukes as well.
What Camille said. It's never possible to share another person's reality. There are so many variations in the way all of us perceive our surroundings. I don't agree with the popular stereotype of autistic people being in a different world. As I see it, we all live in the same world, and we all have different perspectives on it, whether autistic or not.
wow. going out on a limb here since i don't see my view expressed in any of the above, but i continue to see autism as something my son has, not something my son is. i see it as an, as-yet not understood neurological difference that affects my son's ability to process information, creates more confusion and discomfort that the typical person struggles with in the world, and compromises his feeling of safety, all things i care greatly about helping him to deal with and in some cases, overcome. in other words, his autism presents him with challenges that ask for and need more than the typical teaching approaches to help him actualize, help him express more of himself in the world. would i take away his autism? i don't know if that's possible. would i do my best to teach him things so that his autism wouldn't stand in the way of him having greater choices about how to live his life? absolutely. i'm doing it now. through my love, attention, caring, respect.
the issue for me is more about choice. creating the possilbity for more CHOICE for my son.
i don't think the film, which i have seen and found to be very powerful, can be a good analogy here. one can find countless others that would counter it. for example, wilma rudolph, who was crippled and thought to never walk again but who, through incredible hard work and the vision and perserverance and dedication of her mother, not only took off her braces, but went on to become the first woman to ever win three gold medals in the olympics. running. she became the fastest woman in the world. was it because her mother rejected disabled people? those who use braces or assistance in walking? or was it because her mother rejected the notion that others knew what was possible for her daughter, based on her diagnosis: polio. now, obviously this isn't a perfect analogy or even an analogy i'm presenting for autism. kids with autism are individuals with beautiful brains that hold more mystery than anyone can even begin to imagine or describe,just like all kids, just like all people. trying to cure them is just as offensive as viewing neurological growth and change as impossible or wrong or disrespectful. it's a birth right.
That's a tough one, because I don't know where Ben begins and the autism ends, in a way.
Let me explain...
Are those parts of Ben that I love so much, those parts that are different from what I see in so called "normal kids", because of autism, or are they part of who Ben would be regardless? In "healing" his autism, would I lose Ben?
I know "autistic tendencies" have caused him pain in the past...But if I could be assured that Ben would be who he is (the kid I love so desperately) if he was "cured", I would do it. But I can't know that Ben isn't who he is because of his autism. I know this paragraph is confusing.
Ben's autism is mild, and he has no self injury, and never has. That is the part I would change because I see it in my students and it is difficult to accept.
His oppositionality? We've learned how to work with it, and my prayer is that he and the people he will work with will find a way to get around it also. When you do, he is a pretty dang good worker for a kid his age.
I just told him last night that I would not trade him for any kid in the world. In this confusing, circuitous tome, I would have to say "no", I guess.
RB SAID: I know "autistic tendencies" have caused him pain in the past...But if I could be assured that Ben would be who he is (the kid I love so desperately) if he was "cured", I would do it. But I can't know that Ben isn't who he is because of his autism. I know this paragraph is confusing.
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My husband says that too...if curing Adam would not take away his Adam-ness, then, well, hmmmm....
I guess for me I deal with the cards I've got. I consider Adam and autism intertwined and I respect that. I really do believe he is the greatest kid on earth...that's my right as a parent. That's why the word "joy" in all of this.
KYRA SAID: kids with autism are individuals with beautiful brains that hold more mystery than anyone can even begin to imagine or describe,just like all kids, just like all people. trying to cure them is just as offensive as viewing neurological growth and change as impossible or wrong or disrespectful. it's a birth right.
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I got the impression from the movie that "you can impede progress...the future" thing was A REASON to accept the implant and thereby the annhilation of deaf culture (sorry, I know...strong word).
I believe that we have to consider this our arrogance. Our arrogance in believing that as hearing people, our way is the better way. I do not accept that. I acknowledge the challenges that being different bring to every person with the handicap or the family that deals with that person and watches them face discrimination and isolation, but I still believe our society is incredibly arrogant in its ideas of what is normal or that "normal" or homogenization is easier.
As you can see from TAAProject, I don't believe in easy.
AUTIEMOM SAID:"When a child says they 'do not want to be autistic,' where is the desire coming from? From the parent who says it, eminates it, believes that autism is something terribly wrong that the child picks up on that?"
I take great exception to that on a number of levels. The most obvious one being that you have just implied that I have done that to my child.
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No, I didn't mean to imply this that you are doing it. I raised it because you said the sentence and that was similar to what they made apparent in the movie -- the deaf girl was influenced by her parents, in this case, to NOT get the implant because her deaf parents felt that would threaten her identity as a deaf person.
Ergo, I had the thought that as very young children, how do our attitudes influence our children? If we view our children in need of a cure, does that influence how they view themselves? I believe it does. The family is the mirror from which a child derives their first self-image.
ABFH SAID: I don't agree with the popular stereotype of autistic people being in a different world. As I see it, we all live in the same world, and we all have different perspectives on it, whether autistic or not.
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I agree with you. What I was referring to was the point in the film when the deaf parents could clearly relate to their 4-year-old daughter's feelings and experiences as a deaf person. This is what I meant.
The hearing parents could not relate in the same way. It was vitally important for the hearing parents to get that implant for their child, so they could all relate "as hearing people."
So, I will never fully know Adam's experiences as an autistic person as I was not subjugated to the same (if in fact this even happens) isolation and discrimination from being different.
Another way to think about all this is that it might be as well to not even talk about "normal"----or to change what "normal" is.
In the film, "normal" is used a lot. Another way that people think of "normal" is "the majority."
In the film the parents felt that their children "would have more and better opportunities," if they were like the hearing world.
I don't believe in "normal." I cringe at "the majority rules" attitude. But the attitude exists.
Short and sweet answer - yes. No need to lecture me on the joy my son brings to my life. But it is my son that brings joy to my life, not his autism disability and that is what it is - a disability, a neurological disorder which prevents him from being able to communicate fully or understand the world fully. My son is profoundly autistic. Without the ABA interventions to teach him methods of understanding and interacting with the world his engagement in self injurious behavior would be far greater than it now is. Without ABA interventions we would not enjoy the degree of communication with him that we know have. But even with intervention my son, now 10, will never appreciate dangers that could take his life the way "normal" or "high functioning" autistic persons will. He will never function with their understanding and appreciation of the world.
Please don't tell me about the joy of autism. For high functioning autistic persons mabybe. For low functioning persons who lack a full understanding of the world around them and who will probably live lives in residential care - get real.
I love my son immensely but if I could "cure" his autism with a snap of the fingers you would have heard my fingers snapping by now in every corner of North America.
Estee said: The family is the mirror from which a child derives their first self-image.
As someone who grew up with one "more accepting" parent (my father), and one "less accepting" parent (my mother), I definitely think I'd be much worse off if not for my father's perspective on things. There's a big difference between recognizing someone's strengths and weaknesses and trying to help them (as my father did) and trying to turn them into someone else entirely.
The hearing parents wanted to be able to relate to their child as a hearing child... but the hearing/Deaf aspect of the child's life is only one aspect.
The Deaf child with the Deaf parents--they no doubt share and understading of what it means to be Deaf and live in Deaf culture, but say the child is an artist or a budding chess master (besides being Deaf), and the parents think art is what you buy in a frame at Costco, and think chess is boring... then they would never share that part of the child's life. The child might develop a friendship with a hearing artist or chess teacher and they would share something that the child and his parents don't.
One of my children is on the spectrum and we share some intrinsic understanding of what it means to be exhausted by the presence of people in certain situations, but there are things I can discuss with my NT child that I absolutely can't with my ASD child... they are both fantastic... and let me make it clear, my ASD child is not some shiny aspie going to make it big in this world xe is quite disabled.
People assume that they know their children want something different, parents don't always know what their children really want. Many autistics report wishing they could have some reasonable and humane accomdodations, like Deaf people frequently get, so they could funtion better as autistics. If those accomodations were more available, the disabling part of autism would be less an issue. Much of the self-injurious behavior is due to tooo toooo toooo much pressure being put on autistics. Take away the pressure (YOU WILL GO TO KMART WITH US!!! YOU WILL SIT STILL IN THIS NOISY RESTAURANT!!) and the self-injurious behavior diminishes. Self-injurious behavior doesn't always come out of nowhere, though it might be more of a problem if the child can not feel pain, for instance.
Autism Reality NB said: "Please don't tell me about the joy of autism. For high functioning autistic persons mabybe. For low functioning persons who lack a full understanding of the world around them and who will probably live lives in residential care - get real."
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This is very real. Many participating in the Autism Acceptance Project's various events are parents of "severely" autistic children. Dr. Baum runs the MukiBaum Treatment Centres and only deals with people with complex, severe disabilities.
This is about the accomodations that are required in advancing quality of life for people with complex disabilities and autism. It is never assuming that a severely autistic person only requires physical care and safety as a means to a quality of life. Autistic people deserve more. Larry Bissonnette would be considered "low functioning." He is in need of constant care, however, his mind is brilliant. If we believe that an autistic person, or any vulnerable member of our society "lack an understanding" of what is going on around them, then we are assuming much. Further, we do not believe that Stephen Hawking is possible --he might never have been given the accomodation he required, hence, the chance, if we continue to believe that nothing is possible, even with "severely autistic people."
We begin by acknowledging that despite the serverity of the disability, a person is a person first. Perhaps more vulnerable, yes, but never inferior.
"Joy of autism" event is set to redefine autistic ability through science and society and to discuss very important quality of life issues for autistic people -- high and low functioning. We can't achieve that without looking at all persons as deserving that "joy" from us as their caregivers.
What I don't like, is the assumption that I should agree with someone just because they are autistic. If someone thinks that marriage, kids, etc can only happen if they become non-autistic, then I'm going to consider them mistaken. Not incapable of independent thought, but certainly mistaken. And I'm not just going to suddenly agree with them because they happen to be autistic, any more than I'm going to suddenly agree with someone just because they're non-autistic. It seems, though, that when I do disagree with people, or dislike some of the things they say, I get accused of trying to censor them, or of dishonoring them in some way, which is way the heck not the case. I actually find it much more patronizing when everyone agrees with me just because I'm autistic. I hate that. Really hate it. It shows they don't care what my opinion really is, if they're not willing to evaluate it. There are certain areas where being autistic does come into play in having certain opinions, and then there are areas where a person comes to those conclusions for reasons that have more to do with what sort of ideas they're familiar and unfamiliar with. At any rate, I hate it when people think they ought to agree with me just because I'm autistic, I find that totally insulting, and would never do that to anyone else.
Agreed with estee, except that I don't believe in high and low functioning autism, period. It's seemed to me for a long time that those words have to do with which (apparent to non-autistic people) skills are valued and which are not valued.
(And before anyone accuses me of being "too high-functioning to understand", read this all the way through, and note that I still don't believe in that division.)
Larry B. by the way is usually (possibly not always) way more skilled at a lot of practical stuff than I am, and I am usually (definitely not always) way more skilled at typing than he is.
Amanda: What you're describing -- regarding people agreeing with you in some cases just because you're autistic -- is an example of something that I've seen in other areas of classification as well. Once I mentioned on a forum that I didn't like a certain movie very much, and several other people in the forum immediately commented that my not liking that movie was "because I was a woman". (I'm one of few females on that forum). And this annoyed me, because at that point it was sort of assumed that was the end of a discussion, no explanation needed, my opinion in that case was assumed to be mysterious and somehow connected to my ovaries rather than associated with any actual critical analysis on my part.
I've noticed that when people make a snap judgement like that (whether agreeing with someone, disagreeing with them, or making an assumption about which characteristic of that person prompted an opinion or activity), it's like they completely ignore the actual person except for one characteristic they're singling out as significant, whether or not it actually is significant in that case.
And this can be dangerous as well as annoying in discussion, such as in cases (for instance) when autistic people are assumed to be "anxious" or "aggressive" because they're autistic, and forced into medication or whatnot on that basis...because for some reason, if you're autistic you have to somehow "prove" (and the proof bar is set much higher than for nonautistic people) that your actions have a good reason behind them lest it be assumed that you're just acting a certain way ex nihilo and are therefore irrational. Not all people make such assumptions, of course, I'm just noting that some people do. I've had it happen to me, and I've seen it happen to others, on the basis of everything from neurology to race.
I would like to know who is willing to fast and pray fervently to see their child healed of autism completely.
And when, and how long?
Once the holy spirit came over me and moved my mouth to say "With God All Things Are Possible" and "God Is Magnificent".
At the time I didn't know much about anything, and had no idea about fasting and praying. I didn't know how much power was in the "Word" and "Promises" of God. But not he has called me again, and showed me these things. I need parents who have at least a mustard seed of belief in Jesus to join me. He is a healer and he is the Great Physician. Parents, whom of you can forsake everything that you think you know, and everything that you have been told about your child? I don't want you to change anything...only thing I want you to do is fast and pray fervently. Let's all do it together and watch as God moves through us all. Everything that takes place in the physical realm has it's place in the spiritual realm as well.
A lot of parents are stating "God made my child this way, so it's what God wanted." What if there is no God? Would you feel differently? I'm not saying I believe or don't believe, because I'm not sure. I change my mind everyday. I do know that teaching children with Autism gives me great joy and great heartache. At first I found it strange that a parent would state that they would not cure their child if they could and then I started thinking about my students. Would it make them different, would their personalities be different? Some of them have no personality (which I blame on ABA), maybe they would develop one. Then there are the ones that I find new and amazing things about them each and every day. I couldn't imagine them being different and yet, as a teacher and someone who loves them, I think I would want them "cured" if it was possible or if it's even the correct term to use. Maybe not "cured," maybe using the following terms would help parents to say yes: lets help people with autism understand the world better and lets make it less of a hardship. Would you change your mind if it was put in those words? I'm just throwing that out to anyone.
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