Autism debate

[Midnight_Fairy]

I ALWAYS say "This is my son Matthew, he has autism" not, "my son is autistic". He is still a person in his own right. It is not a debate. Autism exists end off.

 

[Menelly]

From: https://www.cafemom.com/journals/read/436505/

Why I dislike "person first" language

Jim Sinclair

I am not a "person with autism." I am an autistic person. Why does this distinction matter to me?

1) Saying "person with autism" suggests that the autism can be separated from the person. But this is not the case. I can be separated from things that are not part of me, and I am still be the same person. I am usually a "person with a purple shirt," but I could also be a "person with a blue shirt" one day, and a "person with a yellow shirt" the next day, and I would still be the same person, because my clothing is not part of me. But autism is part of me. Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works.
2) Saying "person with autism" suggests that even if autism is part of the person, it isn't a very important part. Characteristics that are recognized as central to a person's identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about "male" and "female" people, and even about "men" and "women" and "boys" and "girls," not about "people with maleness" and "people with femaleness." We describe people's cultural and religious identifications in terms such as "Russian" or "Catholic," not as "person with Russianity" or "person with Catholicism." We describe important aspects of people's social roles in terms such as "parent" or "worker," not as "person with offspring" or "person who has a job." We describe important aspects of people's personalities in terms such as "generous" or "outgoing," not as "person with generosity" or "person with extroversion." Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society. It even affects how we relate to our own bodies. If I did not have an autistic brain, the person that I am would not exist. I am autistic because autism is an essential feature of me as a person.
3) Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person. Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral. We talk about left-handed people, not "people with left-handedness," and about athletic or musical people, not about "people with athleticism" or "people with musicality." We might call someone a "blue-eyed person" or a "person with blue eyes," and nobody objects to either descriptor. It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person. I know that autism is not a terrible thing, and that it does not make me any less a person. If other people have trouble remembering that autism doesn't make me any less a person, then that's their problem, not mine. Let them find a way to remind themselves that I'm a person, without trying to define an essential feature of my personhood as something bad. I am autistic because I accept and value myself the way I am.

 

[Midnight_Fairy]

I do believe they can be separate. I know when my son is behaving as a neuro typical 8yr old and when it is his autism.

Sorry but the above does not make much sense to me at all. Its like saying someone is a cancer person not a person with cancer. Its just odd.

 

[Menelly]

That's because you see autism as something bad that should be separated from them as a person, and we see autism as intrinsically part of who we are and NOT as a bad thing, just as a DIFFERENT thing. You see autism as a cancer. We see it as much a part of our identity as being male or female.

The problem with seeing autism as cancer, rather than as an innate part of who we are, is someday your child will grow up. And when he grows up, he will eventually reach out to the rest of his community. He'll have known he was different, he'll know the term autism, and as an attempt to feel less alien in an alien world, he'll try to find more of his kind. And when he finds the autistic culture (and we are a culture, and there are lots of us online!) he will find that we don't consider ourselves broken. We consider ourselves a unique part of the human spectrum, and we embrace ourselves exactly as we are, and we shout to the world WE ARE NOT BROKEN.

And this? This will HURT HIM when he realizes he spent his childhood being "broken" to his parents. When he realizes that who he was wasn't good enough because he was never normal enough. He will feel angry and betrayed. How do I know this? Because nearly EVERY autistic has the same story. Growing up less than what your parents want is painful.

Another Jim Sinclair article. Please read and try to understand. THIS IS HOW ADULT AUTISTICS FEEL. Some day, your son will be us. You can either embrace who he is or you can make him angry someday when he realizes you still wish for the son you never got.

https://asplanet.info/index.php?option=com_content&task=view&id=105&Itemid=150

DON'T MOURN FOR US - by Jim Sinclair
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[This article was published in the "Our Voice," the newsletter of Autism Network International , Volume 1, Number 3, 1993. It is an outline of the presentation I gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]
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Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.
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But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.
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Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.
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I invite you to look at our autism, and look at your grief, from our perspective:
Autism is not an appendage - Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.
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This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say,
"I wish my child did not have autism,"
what they're really saying is,
"I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."
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Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
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Autism is not an impenetrable wall
You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.
Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.
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That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant.
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It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world.
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And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career--but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision--but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined.
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Yes, that takes more work than relating to a non-autistic person. But it can be done--unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can't relate.
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Autism is not death
Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to.
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But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives, but it has nothing to do with autism.
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What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn't happened. It isn't going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive.
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This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at the same time the child being mourned for died.
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You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you.
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This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?
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Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came.
his is not that child." Then go do whatever grieving you have to do--away from the autistic child--and start learning to let go.
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After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it."
If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.
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Reprint permission: All articles published in "Our Voice" may be freely copied and shared for personal use, and reprinted in other publications, provided the original author and publication credits are included in all copies or reprints. If you reprint any of my articles, I would appreciate being sent a copy of the publication containing my article. My mailing address is:
Jim Sinclair - P.O. Box 35448 - Syracuse, NY 13235
______________________

 

[Midnight_Fairy]

Hey? I dont ever see autism as something bad lol. I love my son and I would never change him in ANYWAY. My best friend has aspergers and I wouldnt change him. How odd, I never implied it was bad, just that there is actually a person inside and not just autism??! jeez.

 

[Midnight_Fairy]

And for the record. I have never looked at my child and wished he was anything but who he is. I love how he is and the friends I have met. He has shown me a whole new world.

P.s all your replys seem to be quotes!

 

[JASMAK]

I think autism is bad. I do not think my child is bad. Autism affects her - daily. I see her struggle. I do not let it DEFINE her though. We do not say "hey here is my paranoid pchizophrenic Nana". No, it was Nana who has a mental illness. She was Nana... Her disease did not define her, but it affected her. I can see saying someone is a 'pianist, or artist' because these are stregths....but a "Down's person" or "Autistic" is really mean, I feel. Perhaps people feel it's OK to say that about other's, or even their own children, but I do not. If you are on the spectrum and want to call yourself that...go for it. I find it derogatory, tbh. That's how I feel. My feelings are just as valid as anyone else's on here. I get offended. I actually feel sick about it. It's personal information....I would hate to be called the 'fat lady'.

 

[JASMAK]

...they aren't AUTUSTIC, they are 'people who suffer from autism'. Now for people who get pissed that *I* offend with what I just said...I dont care, because nothing could be more offensive than what I read. Good grief after ALL I went through, still go through, and watch my child SUFFER, yes...its a disordere, that can include seizures, and in my daughters case, low muscle control.....gah...too annoyed. Thats why its called autis spectrum DISORDER...its not a debate, its a FACT.

I am a "person on the spectrum". I identify as ASPERGERS, not "person with..." every single adult on the spectrum I know (and I know dozens as I'm part of groups like ASAN), whether autie or aspie, identifies as autistic, not "person with". Every single adult on the spectrum I know, from high functioning like me, to people in their 30s who need assitive technology to communicate would find it patently offensive to insist that how WE AS INDIVIDUALS choose to label ourselves is wrong and offensive and how a parent chooses to label us is OK. I am not a "person with aspergers" my son is not a "person with autism" and neither is my dad. As people actually ON the spectrum, we can damn well choose how we wish to be referred. Our spectrumness is defining of who we are as much as our brown eyes. You cannot remove our spectrumness and keep us the same people.

And we aren't "suffering" thank you very much. The only thing most autistics "suffer" from is parents who think their existance is a tragedy.

I am glad you aren't suffering, but my daughter does. I see it. I see it everyday as she struggles to hold a pencil, as she tries to understand her confusing world, and as she see she is not invited to yet another birthday party. Call yourself what you want, but my feelings are valid.

 

[Midnight_Fairy]

Sometimess I dislike autism but its who he is, struggles and all x

 

[JASMAK]

Sometimess I dislike autism but its who he is, struggles and all x

I know what you mean...it's part of them, for sure. But, I hate it too. I hate to see her struggle. I am having a bad time with it right now too, just because M wasn't invited to two birthday parties this weekend, and they were for girls who M plays with DAILY, and both came to hers. I thought they were friends, but time and time again, she doesn't get invited, and it pisses me off. She is a wonderful person who LOVES her friends, and she acts 'funny' and well, you know how it is with the behaviour, and that is when I hate hate hate it. It's not fair!

 

[YoshiPikachu]

-_-

 

[Midnight_Fairy]

Sometimess I dislike autism but its who he is, struggles and all x

I know what you mean...it's part of them, for sure. But, I hate it too. I hate to see her struggle. I am having a bad time with it right now too, just because M wasn't invited to two birthday parties this weekend, and they were for girls who M plays with DAILY, and both came to hers. I thought they were friends, but time and time again, she doesn't get invited, and it pisses me off. She is a wonderful person who LOVES her friends, and she acts 'funny' and well, you know how it is with the behaviour, and that is when I hate hate hate it. It's not fair!

I hear you hun, I know what you mean. I was meaning to the other poster who was just posting quotes saying it was wrong to describe my child as a child with autism :S x

 

[Menelly]

Sometimess I dislike autism but its who he is, struggles and all x

I know what you mean...it's part of them, for sure. But, I hate it too. I hate to see her struggle. I am having a bad time with it right now too, just because M wasn't invited to two birthday parties this weekend, and they were for girls who M plays with DAILY, and both came to hers. I thought they were friends, but time and time again, she doesn't get invited, and it pisses me off. She is a wonderful person who LOVES her friends, and she acts 'funny' and well, you know how it is with the behaviour, and that is when I hate hate hate it. It's not fair!

I hear you hun, I know what you mean. I was meaning to the other poster who was just posting quotes saying it was wrong to describe my child as a child with autism :S x

Uh, I posted plenty in my own words as well. I posted two well respected pieces from a well respected autistic author. Everything above "by Jim Sinclair" was my own.

If you do not see autism as inherently bad, you would not be comparing it to cancer. You would compare it to being female perhaps. Or being <race>. For example, being African American in the US has caused a lot of hate, discontent, racism, etc for over a century. Being African American can result in fewer chances for jobs, rude commentary, being excluded from events, as a result of racists that refuse to tolerate and embrace diversity.

But you would never say "person with africanism" or "person with decent from Africa". You say African American person, because there is nothing bad or nothing to be ashamed of, and if someone else has a problem with their race, it is recognized as the racists problem, not the african american's problem.

That's where the autism community is trying to get with autism. There is nothing inherently bad about being autistic. It is a part of who we are down to the core. The vast majority of problems are caused by a lack of understanding in society. It's just sadly still acceptable to be ableist.

 

[JASMAK]

Sometimess I dislike autism but its who he is, struggles and all x

I know what you mean...it's part of them, for sure. But, I hate it too. I hate to see her struggle. I am having a bad time with it right now too, just because M wasn't invited to two birthday parties this weekend, and they were for girls who M plays with DAILY, and both came to hers. I thought they were friends, but time and time again, she doesn't get invited, and it pisses me off. She is a wonderful person who LOVES her friends, and she acts 'funny' and well, you know how it is with the behaviour, and that is when I hate hate hate it. It's not fair!

I hear you hun, I know what you mean. I was meaning to the other poster who was just posting quotes saying it was wrong to describe my child as a child with autism :S x

Uh, I posted plenty in my own words as well. I posted two well respected pieces from a well respected autistic author. Everything above "by Jim Sinclair" was my own.

If you do not see autism as inherently bad, you would not be comparing it to cancer. You would compare it to being female perhaps. Or being <race>. For example, being African American in the US has caused a lot of hate, discontent, racism, etc for over a century. Being African American can result in fewer chances for jobs, rude commentary, being excluded from events, as a result of racists that refuse to tolerate and embrace diversity.

But you would never say "person with africanism" or "person with decent from Africa". You say African American person, because there is nothing bad or nothing to be ashamed of, and if someone else has a problem with their race, it is recognized as the racists problem, not the african american's problem.

That's where the autism community is trying to get with autism. There is nothing inherently bad about being autistic. It is a part of who we are down to the core. The vast majority of problems are caused by a lack of understanding in society. It's just sadly still acceptable to be ableist.

I disagree completely...there is nothing good about not being able to live a normal functioning life. I am not sure what kind of ASD you are talking about. Perhaps just Asperger's. Why don't you google all of them. Why don't you try telling the mother of the child who was diagnosed with Rett's or Disintigrative Disorder (also ASD) that this is good for them. My guess is you are fairly ignorant with your facts.

 

[JASMAK]

https://www.nichd.nih.gov/health/topics/rett_syndrome.cfm

https://emedicine.medscape.com/article/916515-overview

Even 'autistic disorder' and 'PDD-NOS' can be so severe that these people can never live on their own, toilet on their own, or speak.

Asperger's is one of the only ones (of the five) where MOST (but not all) can live a fairly 'normal' life.

 

[Menelly]

My son will likely never live completely independently. I still do not consider autism as anything less than a part of who we are and a part of the human spectrum. I do not consider autism a bad thing.

He didn't have any functional speech till he was 6. At all. He wasn't fully toilet trained till he was 8. He is years behind in math and english in school. He is moderately functioning at most. Don't act like my disagreeing with you means I don't know what autism is. I am fully aware what autism is, in ways that you will not understand because you are not autistic.

I have an autistic child and a father who was diagnosed autistic in 1959. I am Aspergers. I am very very familiar with the spectrum, and dismissing me as "just Aspergers" because I disagree with you and will stand up for the autistic culture is ableism at its finest. WE, AS A CULTURE, DO NOT CONSIDER OURSELVES BROKEN. This includes adults who live in facilities. Who live on SSDI. Who don't have stable relationships. This includes adults who can't talk without assistive devices. This includes adults who will never drive. Ask adults ON THE SPECTRUM how they feel and nearly all will say the same thing.

Do you know there's a Deaf culture? Now, most people would consider not being able to hear a "bad" thing, but they've created their own culture, they have their own language, and to suggest that a Deaf person is "broken" or "lacking something" is offensive to them. There have been Deaf people who deliberately try to have Deaf children so they can share their culture with them. Autistics are the same. Yes, its a disability given the current neurotypical/hearing world. It's also NOT A BAD THING and defining of who we are as people. Anyone a part of Deaf culture would be infuriated by being referred to as a "person with hearing loss" when they've embraced their own culture.

 

[Midnight_Fairy]

I think things must be VERY different in the UK. I work as a networking support advisor and 90% of the kids have ASD and I am sure all of them are described as a child with...

 

[JASMAK]

things must be very different in Canada too.... Well, I suppose we will have to agree to disagree. I belong to many support groups in my community and have many friends whose children struggle with autism, and what you describe, Menelly, is completely unheard of. But, I think it's great that you are happy. I can only hope my child is, which I know, that most of the time she is, but I also see her struggles. Good luck to you!

 

[JASMAK]

My son will likely never live completely independently. I still do not consider autism as anything less than a part of who we are and a part of the human spectrum. I do not consider autism a bad thing.

He didn't have any functional speech till he was 6. At all. He wasn't fully toilet trained till he was 8. He is years behind in math and english in school. He is moderately functioning at most. Don't act like my disagreeing with you means I don't know what autism is. I am fully aware what autism is, in ways that you will not understand because you are not autistic.

I have an autistic child and a father who was diagnosed autistic in 1959. I am Aspergers. I am very very familiar with the spectrum, and dismissing me as "just Aspergers" because I disagree with you and will stand up for the autistic culture is ableism at its finest. WE, AS A CULTURE, DO NOT CONSIDER OURSELVES BROKEN. This includes adults who live in facilities. Who live on SSDI. Who don't have stable relationships. This includes adults who can't talk without assistive devices. This includes adults who will never drive. Ask adults ON THE SPECTRUM how they feel and nearly all will say the same thing.

Do you know there's a Deaf culture? Now, most people would consider not being able to hear a "bad" thing, but they've created their own culture, they have their own language, and to suggest that a Deaf person is "broken" or "lacking something" is offensive to them. There have been Deaf people who deliberately try to have Deaf children so they can share their culture with them. Autistics are the same. Yes, its a disability given the current neurotypical/hearing world. It's also NOT A BAD THING and defining of who we are as people. Anyone a part of Deaf culture would be infuriated by being referred to as a "person with hearing loss" when they've embraced their own culture.

Just wanted to point out that these bolded bits, you have come up with, as these are not things I wrote, as I am sure you can read for yourself. I am not sure why you put them in quotations, as I they are not true quotes.

 

[JASMAK]

I suppose 'just Asperger's' was though, but you have taken it out of context, and have used it in a way that I did not write it. I wrote it as in this must be the one you are talking about because it is the highest functioning USUALLY. But, again, you are contridicting yourself, saying that you are "not broken" but then get offended that I have placed Asperger's as the highest functioning. Anyways........... it's kind of beating a dead horse here...point is, I disagree. Simples.