What qualities does the parent of an autistic child need to have?
Acceptance is the most important quality that a parent of an autistic child needs to have, according to Bryna Siegel, director of UCSF’s autism clinic at the Langley Porter Psychiatric Institute. Suzanne Leigh, the reporter who wrote the August 19th San Francisco Chronicle of Siegel, notes her surprise at this:
…… I ask her which parental qualities work best with an autism diagnosis, expecting persistence, advocacy and resilience to be on that list. But Siegel likes to surprise.
“Parents who do well just accept their child for who they are,” she says without pause. “That doesn’t mean you don’t try to do the best for your child. But it means you have to have a cup-is-half-full approach. Because when the cup is half empty, you’re always going to be agitated. You’re never going to find peace.”
Acceptance is often, I suspect, thought of as a passive quality: A parent simply “accepts” a child being autistic and “lets go” and “lets be” and does not, in “warrior mom” (or dad) fashion, “fight” against autism and seek to do everything she or he can do to make the child better, even to “cure” the child from autism. But acceptance can rather be active and even harder than waging a “war against autism”: To truly understand how one’s child is different—differently wired neurologically, disabled—-one has not only to learn a lot of information, but about the different ways in which one’s autistic child communicates and thinks, and the different ways that one has to go about doing things—to change one’s life and oneself.
What do you think is the parental quality, or the parental qualities, that “work best with an autism diagnosis”?
89 opinions for What qualities does the parent of an autistic child need to have?
Darryl Tang
Aug 22, 2007 at 1:51 am
Acceptance is important because it allows a parent to be constructive and move on with the role of being an effective manager of the treatment program for their child. Achieving the right combination of strategies for your child that optimizes prospects for a recoveryc an be long, arduous process requiring tremendous dedication to self-education and a willingness to change course if you need to. There will be dead ends, so find another way. What choice do you have? It’s your child.
Karen
Aug 22, 2007 at 1:57 am
I agree that acceptance is key. With that comes love. I’m not saying that less-accepting parents don’t also love their kids, but I think if you can accept your child as he is, the capacity for love increases so much. With love, anything is possible.
VAB
Aug 22, 2007 at 3:56 am
Flexibility is up there. Kids change, so what is required of parents changes. Likewise, options change, educational environments change, etc. I find being flexible a real challenge at times.
diane
Aug 22, 2007 at 4:15 am
Are you kidding me? What kind of QUALITIES do we need to parent a child with autism? Get real…people do not sign up for this because they have certain qualities. Oh gee, I’m a really generous person and I love to follow currents events, so, yes, thank you, I’ll take an autistic child. This was inflicted on our children (yeah, you know what I’m talking about) and now we have to deal with the fact that they might not have friends, may not fall in love or might not ever use the potty appropriately. I love my diagnosed child more than I have loved anyone in my life, but this has nothing to do with qualities or choices. Kiristina Chew…you have way too much time on your hands.
Kristina Chew, PhD
Aug 22, 2007 at 5:22 am
Diane, thank you very much; when was your child diagnosed, if I may ask? (Please don’t feel that you have to answer.) I was struck by the reporter’s surprise at Bryna Siegel’s answer—-flexibility is a must (and a sense of humor……..).
Darryl Tang
Aug 22, 2007 at 6:14 am
Whoa ! Ease up Diane, maybe the choice of words may have struck a sensitive cord. Maybe the word “Qualities” should have been replaced by something like ” skills, attitudes and perspectives”. Often third parties who try and write about autism find themselves stepping on egg shells when it comes to dealing with parents of autistic children. I do not believe Kristina was naiive or trying to be cavalier about the issue. She was just trying to provide an opening for parents like yourself to share what you have learned from your experience. I am asking you nicely now, and no, I do not have lots of time on my hands. In fact I am swamped trying to help my son. I am , however, interested in learning from your experience anything that might improve the outcome of my recovery efforts.
daedalus2u
Aug 22, 2007 at 7:11 am
I think they are the same qualities and attributes that any “good” parent has to have to be a “good” parent. Being a parent when everything is going exactly the way you want is easy. Just like life is easy when everything goes the way you want.
Being a good parent is helping your child to live the best life that your child wants to live. It is not to live vicariously through your child and force your child to live the life that you want for them. This is tricky because many good things in life require learning which takes long term effort which some people would rather avoid.
If your goal as a parent is to do your best to help your child live the “best” life that your child can live, that goal can always be accomplished. If your goal is to have your child win a sporting contest, academic honors, beauty contests, and the like because you wanted such things and were unable to attain them, those are your goals and not the child’s goals.
Many parents of NT children get into the trap of living vicariously through their children. It isn’t a good way to parent for them either.
Kev
Aug 22, 2007 at 7:22 am
Diane misses the point. Whether or not we ’sign up’ for this or not is irrelevant to our child. At some point post-diagnosis there is a choice to make - do we continue to rail against strawmen causes (yeah, you know what I’m talking about) or do we get on with the job of allowing our children to experience that which is most important to their self-confidence and development - a sense of value of regarding who they are.
Harold L Doherty
Aug 22, 2007 at 7:46 am
Diane
I don’t think you missed the point at all. Acceptance can mean many different things. Kev and Ms Chew are from the joy of autism perspective which holds that autism is not a disorder. Accepting that your child is autistic, as I think you suggested, is what more reality grounded parents tend to do, and with THAT type of acceptance we then we fight for service, treatments, cures, with the goal of helping our children function more fully in the world and live a more enriched life.
Caroline L.
Aug 22, 2007 at 7:53 am
Flexibilty is so key, and a positve attitude, and living in the moment while keeping an eye on how best to prepare a child with a disabilty for a good life…the ability to effectively advocate for services that a child needs to enjoy life…being calm and loving in upsetting public situations.
I have to say I repeatedly fail at all these qualities-but I keep trying and thank you Kristina for reminding me.
Mekei
Aug 22, 2007 at 8:16 am
Diane,
You lost me at “inflicted.”
LOL, I have to be honest and say that I often wonder where Kristina finds time to write such thought-provoking posts.
It probably took Kristina all of 2 minutes to compose this brief post. She doesn’t need a lot of time, she’s a gifted writer and educator. Kristina’s mind, obviously, is geared toward challenging herself to be an informed parent of an autistic child and she enjoys challenging others.
Where your time and energy may be spent on running from biomed therapy to biomed therapy, some of us are freed from that burden to enrich our “inflicted” childrens’ lives and the lives of our families.
bullet
Aug 22, 2007 at 8:45 am
I accept that my son processes language differently than most other children his age, so I don’t rely just on talking to him, I use pictures, objects and sign language as well as verbal speech to help him communicate and understand.
I accept that he responds well to music and singing, so I make up songs to help him understand what is going on sometimes.
I accept that he can learn just as much about the world helping me bake, playing in the dirt and watching insects, climbing and jumping, splashing in water and pouring water, giggling with his younger brother, painting, looking at picture books, going to look at museums and churches and going on walks than he can spending hours in set therapies. That’s not to say he has no therapies, but they take up only a small part of the time.
I accept that as each year passes he will learn more, understand more and be able to tell us more things and that whilst he will never be typical, there is every chance he will find his own niche in life. For him to be happy, for him to realise that a different way of learning is not a bad thing, for him to find his own way of doing things if the methods taught to him don’t help, that’s what I’d like.
candy
Aug 22, 2007 at 8:46 am
“What qualities does the parent of an autistic child need to have?” Hmmm…Kristina, you give me pause to think. I don’t think it’s the “qualities” I HAD…I think it’s the “qualities” I GOT while on the journey. I am way more patient, flexible, empathetic and non-judgemental than “before” Matt.
mommy~dearest
Aug 22, 2007 at 9:03 am
I absolutely agree that acceptance, flexibility, and a sense of humor should be in the top ranks. I think the “acceptance” part goes further though. Yes, you would accept your child because this is your child, but I think to fully embrace the disability, it helps to have a general acceptance of diversity. My child is different, and that’s okay. He’s different, but he’s still a kid, and entitled to everything any other kid is entitled to. Who’s to say that our NT kids are going to go down the “right path”, fall in love, or hold a job? I think it’s about the choices we offer our children, and the lessons we instill in them.
I think another key to parenting ASD kids, in my opinion, is communication. We have to learn how our kids communicate, how to get things through to them so they understand, and be an active listener when they try to make communication breakthroughs in whichever manner they use. Communication is more than words. It’s noticing the subtleties of body language. It’s developing a feeling for your child, and with your child.
Estee
Aug 22, 2007 at 9:03 am
Harold Doherty sounds ridiculous in claiming that he is more “grounded” than other parents. He does it only for one purpose: in order to get governement funding for ABA in Canada. It’s rather a cheap approach — those “accepting parents are in the clouds, but I, HAROLD DOHERTY, am grounded. I KNOW what autism is all about.
How ridiculous is that? Accepting parents are no less grounded. I agree with Bryna and Kristina that this is all about perspective. It is about the cup half full or empty kind of thinking.
Acceptance is really active. It engages one to self-reflect, to get involved with other people with disabilities and autistic individuals. It requires study and reading in order to understand what is involved in not only teaching, but the disability discourse that continues to evolve our social view of disability.
It requires active listening to the very communities we seek to assist. We do not bemoan the fact we have disabled children. We do not go in the media and say “autism is a living nightmare.” We acknowledge that there is a consequence not only to the very self-esteem and identity of our children, but also to the other individuals we then come to represent as a result of publically speaking about autism.
It is not denying the challenges, the “devastating moments,” either. But a “grounded parent” does not have the right to deny the years of disability literature and studies that are coming to form the way we view autism, either. Such a parent does not have a right to proclaim that autism is a horrible fate for everyone.
We will get beyond this. Other disability communities have gone through similar debates.We will always have varying opinions as to “treatment” options, and as long as they are humane options respecting the individual, every family has a right to choose their path and autistic people have a right to debate all those choices.
The other point I think to be one who “sees the cup half full” kind of parent is the ability to self-reflect as I noted above. What were my preconceptions as a parent? How did I transfer those to Adam? How am I perceived as an advocate? What is my responsibility to the community to which my son belongs and may some day want to take a more active role within? What is my responsibility to the dignity of others? This is a constant discourse that I have with myself. I have been going through this for almost four years now, and I never stop thinking of my actions, my words, and I try never to stop listening and learning.
One of the greatest injustices that we may be doing at the moment, is not listening enough to autistic individuals that we go on and on about here.
Kathy
Aug 22, 2007 at 9:16 am
You need to chill out a bit Diane!
Acceptance, is I think paramount.
When my hubby and I received Mark’s diagnosis, we decided that educational intervention was the appropriate course of action. Mark had OT, Speech Therapy, (on going) And precision teaching(two years).
Progress is steady, if somewhat slow.
But , you know, we don’t stress about it.
Mark is who he is.
We love him, and accept him for who he is.
An integral part of our family unit.
I am not a competitive person by nature, so have never compared Mark to his peers, nor anguished about his progress.
He attends a wonderful school with an aide who is second to none. Can’t ask for more than that I reckon.
Not worth wasting one’s life pining after something that is unrealistic.
Best to live for today and appreciate what you have, while you still have it!
For none of us knows how long we have left on this Earth.
” I’d rather learn from one bird how to sing
than teach ten thousand stars how not to dance.”
E.E. Cummings.
mcewen
Aug 22, 2007 at 9:30 am
I am glad that Ms. Chew squeezes her time into her fluent posts.
I am surprised and delighted that Ms. Siegel’s response was so forthright.
I am relieved that there is a community of parents who all share the same goal, a happy and successful childhood experience.
Best wishes
Joseph
Aug 22, 2007 at 9:40 am
Diane knows that autism is man-made, and Harold knows that he’s more “grounded in reality” than other parents. Neither of them can provide sufficient evidence to justify these claims, but there you go. Some people are pretencious that way.
I do believe that some day science might find that acceptance (and the neurodiversity worldview) benefits autistic children. But even if no clear differences in outcome are found, I still think they are the right approach for a number of other reasons.
emily
Aug 22, 2007 at 9:44 am
Maybe mindsets or skill sets rather than qualities? I don’t know, I understand Diane’s frustration to some extent, b/c I have trouble with the notion that God doesn’t send you anything you can’t handle, or that I was somehow “chosen” for these circumstances, and we’ve all read those would-be inspirational stories.
I do think acceptance in the sense of embracing all aspects of the child helps a lot, getting away from the mindset of fixing my kids. Other things that help me personally: sharing w/other parents; learning how to advocate; being informed. Those aren’t things I brought to the table–those are things I had to develop or do on the way that have helped me the most.
Re the whole neurodiversity argument: isn’t there an article by Dennis Debbaudt to the effect that sometimes autism can be seen as a disability and sometimes a difference? That’s how I balance it in my mind, though given my kids’ particular strengths and challenges, I ted to fall into the neurodiversity camp–they’re like other kids, only more so.
Sorry I keep coming here and babbling: you’ve written some very thought-provoking things.
Julie
Aug 22, 2007 at 10:38 am
I do not think that acceptance means that you do not try to help your child. I have accepted that my daughter is different but that does not meanthat I do not work everyday to help her to be the best person that she can be. I think with every child it is important to accept them with the strenghths and weaknesses that they have. Knowing and accpeting that things will be different for them does not make me less grounded. I think Kristina was trying to share that attitude and staying positive is the best way to help our children.
Cliff Clavin Wisdom
Aug 22, 2007 at 10:40 am
Maybe the question is when Charlie needs you, does he always know to go to the computer to find you?
Seriously, how many times a day do you update your blog? What is that number on a weekly or monthly basis? Your feed is always at the top on the hub page!! Always!! How much do all these minutes add up to? How much time do you spend reading the different autism newsfeeds before you even make a decision that this newsfeed is worthy of blogging on or this one is not worthy of blogging on?
You need to slow it down. You are missing time with Charlie. I am sure Charlie could care less who Bryna Siegel is or even what she thinks!
The internet can be an addiction. No different then drugs or alcohol. Can you walk away from your blog for a week? And maybe it’s not the seeing the glass half full or acceptance but spending time with the person who actually eats in your kitchen then the people on the internet who will never be eating in your kitchen.
Kev
Aug 22, 2007 at 10:45 am
“Kev and Ms Chew are from the joy of autism perspective which holds that autism is not a disorder.”
I am? I would ask you to back that up Harold but as this is not the first time you have made untrue statements about others beliefs and then ran away it seems pointless to do so. However, for the record, I do think autism can be a disorder. I just don’t think its just a disorder.
Acceptance is not, as Kristina points out, a passive thing. It is not capitulation. It is about seeing the reality of the situation and working within that reality. Its benefits are firmly established.
joycemocha
Aug 22, 2007 at 11:37 am
Acceptance of what is needs to happen before you can truly make significant progress in discovering what your child’s strengths and needs are. Otherwise, you’re just projecting your own desires on that child.
People with autism are different. Yeah. But that doesn’t mean we throw away the need for high expectations, or the need to understand what their strengths and weaknesses are.
For myself, I’m very glad that my son’s ability to function without a lot of emotion in a scary situation happening to someone else allowed him to help me get to the hospital yesterday when I got stung by a bee. He later told me that yes, he was very panicked by it, but I sure as heck couldn’t tell it. Then again, his role models all along have been hypercompetent male leaders (and when he was echolalic, he was echoing Star Trek).
Now it doesn’t mean he doesn’t panic when it happens to him.
Acceptance of the syndrome is a critical part of finding good, lasting solutions. Since I’ve been living with autism for twenty years, I’ve found that moving past denial and anger to trying to work with what I’ve got has gotten me a lot further.
Harold L Doherty
Aug 22, 2007 at 11:37 am
Kev
I am pleased to see you acknowledge that autism is a disorder. Maybe you could be less judgmental on those parents who seek to help their children overcome their disorder.
And you missed my central point, again, Kev. You do not own the concept of acceptance. Acceptance for me is accepting that your child has a disorder, in my son’s case a severe version of the disorder. Acceptance for me is not giving up on him and doing my best for him. That is why I do not subscribe to the Neurodiversity ideology.
Harold L Doherty
Aug 22, 2007 at 11:38 am
Estee
That was quite a rant. Thank you for that.
Joseph
Aug 22, 2007 at 11:42 am
“Acceptance for me is not giving up on him and doing my best for him. That is why I do not subscribe to the Neurodiversity ideology.”
Because neurodiversity is about giving up on children? Harold: Do you have to work hard at misrepresenting others or is that a natural talent?
Shari
Aug 22, 2007 at 11:53 am
Over the years, I’ve learned that, for us, “acceptance” is defined by a special kind of learning that comes with accepting the big-picture of the situation we were dealt with (while ushering-in change for a better future); respecting the incredible forces emitted from the realities that keep us from moving forward as quickly as we would like (even if I don’t like them at all); engaging in the possibilities (showing seemingly-endless appreciation for the good-guys); and constantly searching for that which can maintain optimism for all, especially for my sweet beautiful son.
erkolos
Aug 22, 2007 at 12:01 pm
I think it’s a shame that quackery can live on the “lack of acceptance” as people here call it - The idea that autism is like an imperfection that just has to be fixed, its really just how the kids are.
passionlessDrone
Aug 22, 2007 at 12:03 pm
Hello friends -
Has anyone noticed how hilarious it is that a disorder invovling communication problems gets people so bunged up over semantics?
Kachow!
- pD
notmercury
Aug 22, 2007 at 12:03 pm
I’m not sure Harold is being sincere with his thanks, but I’d also like to thank Estee for what she wrote above.
Kristina Chew, PhD
Aug 22, 2007 at 12:05 pm
Estée, thank you for the “rant”; the issues under discussion here are part of a larger discussion about disability and community.
Cliff Clavin Wisdom, Your wrote:
“I am sure Charlie could care less who Bryna Siegel is or even what she thinks!”
On a related note, it might be wondered:
-What does Charlie care about how to form the ablative absolute in Latin, and the various types of participles in ancient Greek?
-What does Charlie care about what Plato or Sappho thought about love?
-What does Charlie care about the reasons for the fall of the Roman Republic?
Charlie has learned not only to go to the various places around the house etc. that I am in, but also to call me to come to him.
emily
Aug 22, 2007 at 12:23 pm
Not that Kristina needs my defense, but I can’t believe the nastiness of some of these comments. What, someone who enjoys writing (and does it well) is ergo neglecting her child?
Feh.
Harold L Doherty
Aug 22, 2007 at 1:18 pm
Joseph
Even Kev acknowledges that autism is a disorder. Most parents try to cure their children of disorders. I do not think it is misrepresentation to say that those who do not want to cure their children of a disorder have given up on their children.
You may disagree, and this being a neurodiversity site, I do not expect agreement with my views, but you are only diminishing your own credibility, outside the confines of the Neurodiversity Hub, by making such unfounded allegations.
emily
You have a point but when you post a blog in which you invite people to express their opinions on the qualities that are best for parents of autistic children, as Ms Chew has done, you are inevitably inviting personal judgments involving how other people raise their autistic children.
Julie
Aug 22, 2007 at 1:26 pm
I do not think it is misrepresentation to say that those who do not want to cure their children of a disorder have given up on their children.
I can not even begin to say how much I disagree. I do not try to cure my daughter of her disorder I try to help her learn to live with it the best way she can. That is not to say that if there were a proven cure I would not want to make her life easier. Right now the only cure I have heard of for autism is to remove metals from her body, which she does not have a problem with. What she has is not mercury poisioning but autism, a developmental disorder. My accepting that when she was developing that happened differently and this causes her to have problems socially and with communication is NOT giving up on her at all. I resent the implication that a dfferent view than your own means bad parent.
Joseph
Aug 22, 2007 at 2:29 pm
“I do not think it is misrepresentation to say that those who do not want to cure their children of a disorder have given up on their children.”
Well, it is, and that is clear. The neurodiversity movement is certainly not about curing autism, but it is about helping autistics in other ways. I realize that you believe changing autistic people is the only way to help autistic people. The neurodiversity movement believes that changing the world is another way. “Giving up” is your straw-man version of the neurodiversity movement and it is a misrepresentation.
(BTW, was it not a misrepresentation when you said that Amanda “chose” not to speak?)
Furthermore, if you consider some acceptance/accomodation/neurodiversity proponents, say, Michelle Dawson or Morton Ann Gernsbacher, you’ll find that they do promote scientific ways of helping autistic people. I’m sure you have Dr. Gernsbacher’s paper on reciprocity.
People I’m familiar with in the neurodiversity movement generally respect the scientific method. I’m sure that if effective, safe and ethical cures were found for autism (backed up by proper clinical trials) they would be considered, or at least autistic people would be given to choice to pursue the cure or not. That’s really not the point, is it? The fact is that no such cures exist, and it’s possible that they can’t exist. The best evidence available to date points to many different kinds of genetic variations.
I personally don’t believe autism is a disorder, but that’s basically a debate about semantics. If you define disorder as something that is not normal, then yes, autism is a disorder. But if anything that is not normal is a disorder, then all kinds of things are disorders. Michael Jordan clearly must have some kind of disorder, given that his basketball playing ability is not “normal”. The words disorder and disease should be reserved for things that are best understood under a medical model, in my opinion. I have yet to see evidence to the effect that autistics are well served by the medical model. That’s what I base my judgement on.
Harold L Doherty
Aug 22, 2007 at 2:38 pm
Julie
Your points are valid. But I am not sure that we disagree.
I accept that my son has autism and that it is a developmental disorder but it is not clear what the causes are or how they interact. I also agree that there is, at present, no biomedical intervention that has been proven safe and effective at treating autism, or the deficits associated with autism. And by autism I am referring now to Autism Disorder not Aspergers.
I educate my son using ABA because that is what works for him as an educational intervention and ABA IS an effective proven evidence based intervention call it educational or medical. 40 hours of intensive early intervention was not an option for my son when he was diagnosed in NB 9 years ago. Many parents today are trying to have their children meet the 47% who are indistinguishable from their peers by age 5 through the Lovaas 40 hours. Others do not have the means or access to the services.
But there are others still who do have the means but do not believe it is right to use ABA to treat their child through Lovaas EIBI and claim they would not do so even if an effective biomedical treatment is developed and proven effective. Those parents have embraced their children’s autism disorder to the point in my opinion that they have given up on their children and they urge others to do the same with their projects and internet commentaries.
If a proven effective and safe biomedical intervention emerges that cures my son of his autism disorder and renders him capable of living a fuller independent life I would do so in a hearbeat. That is the difference between me and other parents who accept that autism disorder should be cured if and when it becomes possible to do so and those who embrace their child’s autism as the essence of who they are.
If you wish to see my perspective more fully fee free to visit my site Facing Autism in New Brunswick.
passionlessDrone
Aug 22, 2007 at 2:53 pm
Hello Joseph -
“The neurodiversity movement believes that changing the world is another way. ”
This is a noble, but I believe, fatally flawed belief.
The day I accept a future for my son where he will never drive a car, flirt with a girl or cook a meal is a sad, sad day for the both of us. These are goals that simply cannot be achieved by changing societies view about autism. If I become complacent with the idea that my son will never cook a meal, I have given up trying to help him, haven’t I?
Take care.
-pD
Joseph
Aug 22, 2007 at 3:34 pm
“The day I accept a future for my son where he will never drive a car, flirt with a girl or cook a meal is a sad, sad day for the both of us. These are goals that simply cannot be achieved by changing societies view about autism. If I become complacent with the idea that my son will never cook a meal, I have given up trying to help him, haven’t I?”
And you know that your son will never drive a car because…?
I would think that the main goal should be to help autistic people to live happily, within life’s limitations. (How many people are truly happy?) I don’t believe specific requirements solely based on your personal and cultural biases are that important, e.g. flirting with girls or cooking. Other parents will say “tea parties” or “sleepovers”. You do see that a large number of people in the world don’t experience these things, right? So?
Would you believe I can’t cook basically at all? I can fry an egg. That’s the extent of my cooking skills. Is that relevant in my life? Not at all. I’d probably be able to learn to cook if I wanted to.
I probably didn’t flirt with a girl until I was 21 or so. I’m married, BTW. But there are celibate people who don’t think any less of themselves because they are celibate.
What would happen to the “flirt with a girl” expectation if your child happened to turn out gay?
Your expectations are similar to those of a father who believes it is imperative that his kid become a lawyer or an engineer, except you think your expectations are reasonable because “most people” do those things.
passionlessDrone
Aug 22, 2007 at 4:04 pm
Hi Joseph -
“You do see that a large number of people in the world don’t experience these things, right? So?”
A large number of people in the world don’t learn to drive because there are no cars where they live; not because they lack the motor skills or cognitive ability to safely operate a motor vehicle.
“I’d probably be able to learn to cook if I wanted to.”
That’s the kicker, now, isn’t it? What if you couldn’t learn to cook if you wanted to? [Cooking can be pretty fun]
“But there are celibate people who don’t think any less of themselves because they are celibate.”
Are these people choosing to be celibate, or is celibacy forced upon them because they cannot interact with potential mates? There is a world of difference between the two and you know it.
“What would happen to the “flirt with a girl” expectation if your child happened to turn out gay?”
I want him to be able to flirt with whoever he wants to.
“Your expectations are similar to those of a father who believes it is imperative that his kid become a lawyer or an engineer, except you think your expectations are reasonable because “most people” do those things.”
Using the broadest brush possible you have grouped together engineering degrees with the abililty to use a stove without starting a fire. You prove only that no analogy is too absurd as long as it you can avoid admitting that not having basic living skills means there is something wrong.
If the reverse was true; and “most people” [i.e., 99.99% of people] weren’t able to cook their own meal, drive a car, or flirt with a potential mate, the societal constructs that have made the notion of neurodiversity possible would never have been constructed; nature would have handled the problem in its own way.
- pD
Harold L Doherty
Aug 22, 2007 at 4:05 pm
Joseph
What about parents who would like to see their autistic children live independent lives rather than in institutional care supported and cared for by strangers?
Joseph
Aug 22, 2007 at 4:22 pm
“What about parents who would like to see their autistic children live independent lives rather than in institutional care supported and cared for by strangers?”
I completely share your hope that our kids are never institutionalized. As long as I’m alive and my wife is alive and some other relatives are alive, my son won’t be institutionalized. And I’ll do whatever is in my power to ensure he doesn’t end up in an institutional care facility. “Independent living” is not a bad goal to have (culturally, I understand that’s quite important in the US and Canada, although not so much in other parts of the world). If he’s able and willing to live independently, that’s great. If not, we’ll manage.
Patrick
Aug 22, 2007 at 4:22 pm
40 hours 40 hours, don’t you mean 40 hours per week? And for how many years?
Misrepresentation by the hastily typed rebuttal artist runs deeper than at first appears.
And what exactly was wrong with asking “the question” in the first place?
Methinks someone earlier was just waiting for a reason to rant, and dove in without much thought that asking a question is what we are supposed to do in order to gather information.
Joseph
Aug 22, 2007 at 4:28 pm
“If the reverse was true; and “most people” [i.e., 99.99% of people] weren’t able to cook their own meal, drive a car, or flirt with a potential mate, the societal constructs that have made the notion of neurodiversity possible would never have been constructed; nature would have handled the problem in its own way.”
If that is the criteria, you would have to admit to yourself that you think homosexuality is a disorder. After all, if 99% of the population were homosexual, nature would’ve taken care of the problem in its own way.
You see, neurodiversity doesn’t say that everyone could be autistic, and all would be fine. What it does say is that broad diversity of skills exist, and that’s life.
Regan
Aug 22, 2007 at 4:37 pm
A slight shift, but given that Dr. Siegel herself does not have a child with autism, derives a great deal of her income as an expert witness against families in court cases and does not live with the results of any of her recommendations first-hand, I might take her expert opinion with a grain of salt. This was a fluff piece that to me seemed to spend at least as much time on Bryna Siegel’s wardrobe and lifestyle as anything about families or children with autism. Acceptance for her might mean something very different than for any of us…
What are the qualities that a parent might find useful? Those have changed for me depending on circumstance, but striving to see the positive and a sense of humor have always been useful.
Kristina Chew, PhD
Aug 22, 2007 at 5:11 pm
It’s not only “severely” autistic persons who might live lives in institutions surrounded by strangers: What about elderly relatives in nursing homes or assisted living? My own in-laws have had several live-in nurses in the past year—-the turnover rate has been high, the nurses go on vacation and substitutes who are “strangers” come to the house. (This has been a lot for Charlie to have to manage with, and he has been remarkably flexible—I would say, the most flexible.)
Regan, thank you for pointing that out. The SF Chronicle piece is very much centered on Dr. Siegel’a person, lifestyle, her new book…….. One of our very lovely houseguests down here at the beach was Jim’s cousin who is a screenwriter (of comedies) and I was reminded again and again, laughter is the best solvent.
joycemocha
Aug 22, 2007 at 5:47 pm
You know, back when my son started preschool, his teacher then said “he’s hyperactive and he’ll flunk kindergarten.”
No, he wasn’t hyperactive and he did quite well in kindergarten.
Another teacher said he’d never be a better than “C” student in Language Arts. He’s earned “A”s in Language Arts.
Other professionals advised against him studying a foreign language “because he won’t do well and he’ll find it hard.” He graduated high school with honors in French.
Folks, don’t rule anything out for your kids. I am not one of the cure advocates but a neurodiversity supporter. However, I also strongly believe in teaching kids how to play the neurotypical game and learn the skills they need to survive in society.
And another thing–for those of you who worry about your child being able to live independently, you’d be surprised at what is possible especially through Life Skills training. When I was going through my professional training (I’m a sped teacher), one of my teachers who focused on transition development and career development for people with disabilities talked about finding the right job for the right person. It does exist.
passionlessDrone
Aug 22, 2007 at 7:40 pm
Hi Joseph -
“If that is the criteria, you would have to admit to yourself that you think homosexuality is a disorder. After all, if 99% of the population were homosexual, nature would’ve taken care of the problem in its own way. ”
Red herring argument. I wasn’t making an argument as to the criteria for determining if autism is a disorder or not (though clearly it is), but rather, illustrating the obvious fallacy in your argument that
“I don’t believe specific requirements solely based on your personal and cultural biases are that important, e.g. flirting with girls or cooking.”.
It isn’t ’soley my personal and cultural biases’ that make me want my child to be able to use a stove without starting a fire; rather, it is a universal trait of humans of all cultures. If this is not correct, perhaps you could point out to me a culture that does not have this bias, and indeed, does not find it important that people have this kind of ability. This should be a simple task if your assertion is correct.
- pD
passionlessDrone
Aug 22, 2007 at 7:55 pm
“It’s not only “severely” autistic persons who might live lives in institutions surrounded by strangers: What about elderly relatives in nursing homes or assisted living?”
If someone compares an autistic child to a train wreck, they are villified. If someone else compares them to people who must live in assisted living after having a full life, they are somehow defending diversity.
That is some serious doublethink.
- pD
Kristina Chew, PhD
Aug 22, 2007 at 8:25 pm
pD, I might wish it were “doublethink.” I am describing my mother-in-law who has had psychiatric issues for much of her life (including hospitalization in psychiatric hospitals), has never lived “independently,” and many (including her own daughters) would say has not had “a full life.” I think it is helpful to compare Charlie’s situation to hers, and that keeping in mind a broader understanding about disability (physical, cognitive, neurological, mental) is important. I think more of such diversity might have helped my mother-in-law lead a life that drew on her intelligence and her curiosity, and might have led many to appreciate her, rather than writing her off as “crazy.”
I think we overestimate “independence” and sometimes seem to talk as if there is some kind of ideal “independence” that the normal (autism-less) individual might attain. I do wish that my mother-in-law had been able to achieve more “independence.” Alternatively, in my Chinese American family, the feeling of community and familial solidarity and loyalty runs very deep, and has been extended very much to Charlie.
Joseph
Aug 22, 2007 at 8:28 pm
There are few universal traits of all humans. Being human is one. Having a functioning heart is another. Cooking is not one, nor is flirting with girls or boys. Nowadays, especially, cooking is not that necessary a skill. (Not to mention that human beings probably survived without cooking for a very long time). Flirting with the opposite sex is necessary if you’re going to procreate, which is a good thing. Not everyone procreates nor do they have to.
As to examples, the Inuit apparently ate raw food until contact with Western culture.
Nowadays there’s a modern raw food movement (probably a sort of woo).
I think this is all beside the point, but it says something about cultural expectations.
Is there evidence that autistics in general can’t learn to cook or drive or find a mate? I don’t think so, even though some or most might not be able to.
Is there evidence that most autistics end up in institutions? There’s evidence of the opposite actually. I’m not sure why Harold, for example, has the a priori assumption that this is the inevitable fate for his son.
Either way, I’m not sure what you’re saying. Does your child absolutely *need* to have certain skills and desires in order to become fully human?
Leila
Aug 22, 2007 at 8:39 pm
Diane, grow up. When you decide to have a child, you are always signing up for the unknown. Wonderful and/or tragic things can happen. Being an adult, a responsible parent, means to be able to handle those hardships and giving your child the best that you can offer. They do not want a parent who cannot love them for who they are; they do not want a parent who is depressed and freaked out.
AnneC
Aug 22, 2007 at 11:23 pm
Hmm.
As near as I can tell, there are some people who define autism purely in terms of weaknesses and deficits. These people see autism as potentially separable from a child — that is, if you could somehow “cure the autism”, you would have a typical child who would be the same child minus a few pervasive weaknesses.
The thing is, the question of whether you would, in fact, have “the same child” is extremely relevant, and seems to be one of those things lingering under the surface of all these discussions. My impression is that pro-cure folks either don’t spend much time pondering the concept of what makes up a person in the first place (and how the idea of “curing autism” might impact this concept), or they make a utilitarian calculation, deciding that it doesn’t matter whether you have “the same person” or not, so long as you have a person who is not “suffering” or limited in particular ways according to your perspective.
I guess whether or not you accept the idea of acceptance comes down to whether you are willing to acknowledge just how pervasive and complex autism is.
If you continuously think of it as something that can be “removed” from someone, you either don’t believe or don’t care whether it is fundamentally tied to any of that person’s positive aspects, personality, or strengths.
Or, if you think that all you need to do is “extinguish” certain external behaviors and boom, you have a nonautistic child, then you are not going to take kindly to suggestions that your child will still be autistic regardless of how they happen to be behaving at any given moment.
The reason this viewpoint scares me so much is because it doesn’t take into account that people, including children, are often capable of putting in Herculean efforts to behave a certain way without necessarily revealing the distress this causes them on the surface (and sometimes even learning to ignore distress signals in favor of pleasing/satiating those around them, out of fear of getting in trouble otherwise).
This is the sort of thing that leads to autistic people *actually* suffering — for years, with untreated pain and medical conditions (because their expressions of distress were treated as “challenging behaviors”), and with the effects of sensory sensitivities that are never acknowledged by those around them.
It took me years to figure out that I could wear earplugs or use noise-cancelling headphones, because nobody around me was as noise-sensitive as I was, and when I would show distress or “weird behavior” because things were too loud, this was assumed to be either misbehavior, attention-seeking, or some kind of deep-seated psychoanalytic issue. I don’t blame anyone for this; they didn’t know how I was perceiving the world, but I almost feel like it’s my responsibility now to help reduce ignorance about sensory differences and whatnot.
“Neurodiversity”, as I see it, is very much about helping people become more aware that not everyone experiences the world in the same way — and that this isn’t a bad thing, but rather a fact about reality.
It is not about denying that some people have serious problems, or about permitting children to eat glass or play on the railroad tracks, or about not challenging people of all neurotypes to learn and grow.
As far as I can tell, the “acceptance”-minded parents are perfectly aware of the difficulties their children have, and want to do whatever they can to help their children — though without the assumption that “helping” necessarily means “making them not autistic”. But if you are someone who defines “autistic” only in terms of bad things, you aren’t going to understand the acceptance viewpoint, period.
So there’s a very basic communication barrier here. I don’t normally participate in threads like this because I see this barrier but don’t know what to do about it.
The one thing that gives me hope in all this is that while I’ve come across a fair number of parents who have moved from the deficit model to the complexity model of autism, I have *never* come across anyone who has gone in the opposite direction. I have never come across even one example of someone who comes to the mindset that their child can be whole, healthy, *and* autistic who has subsequently decided that they need to go back to the disease model.
Casdok
Aug 23, 2007 at 4:10 am
Love, acceptance and patience.
Kev
Aug 23, 2007 at 6:21 am
“And you missed my central point, again, Kev.”
Again? You’re responding to my first comment.
“You do not own the concept of acceptance. Acceptance for me is accepting that your child has a disorder, in my son’s case a severe version of the disorder.”
Uh-huh. I get that. However, as I’ve tried to illustrate to you countless time, the world is not black and white. Neither is autism. It is both disorder and difference. Can you accept both?
“Acceptance for me is not giving up on him and doing my best for him. That is why I do not subscribe to the Neurodiversity ideology.”
Really? That pretty much is the neurodiversity philosophy. Weird.
Kev
Aug 23, 2007 at 6:25 am
“Those parents have embraced their children’s autism disorder to the point in my opinion that they have given up on their children and they urge others to do the same with their projects and internet commentaries”
Just curious Harold - what exactly leads you to that conclusion?
Kev
Aug 23, 2007 at 6:35 am
“Even Kev acknowledges that autism is a disorder. Most parents try to cure their children of disorders. I do not think it is misrepresentation to say that those who do not want to cure their children of a disorder have given up on their children.”
Tsk, tsk Harold. Here you go with that black and white stuff again. I actually said that autism can be a disorder. Not that it was - always and for all time and in all cases. Thats just not the way the world works.
There are certainly aspects of my daughters autism that could be thought of as ‘disordered’ in that they are not NT. There are also aspects of her autism that could be considered disabling. Do you seriously think that we just sit back and do nothing about those things? How do you know what we do? On what basis do you make these judgements?
However, on the other hand, there are aspects of her autism which are abling. Aspects which are positive. Aspects which need no amelioration.
You get rid of autism you throw the baby out with the bathwater. Neurodiversity, as I understand it, is about enabling kids where it is needed based on an acceptance of their state of being and a willingness to work with the strengths of that state of being. I still find it very impossible to understand what scares you so much about that.
By the way, ABA over here is pretty much non-existent. Unless you can afford a private tutor/school - which we cannot, you work with what you have.
Billy
Aug 23, 2007 at 8:27 am
I guess I can see that these neurodiversity people want to think of autism as a variation that may have accompanying deficits, and don’t like the idea of a cure because of that. So it doesn’t sound like a problem if they mean that the only thing they don’t want to get rid of is the variation within it. I wonder what this variation of autism is made up of.
The neurodiversity crowd obviously goes way farther than trying to protect diversity. What if a cure, whatever it would turn out to be, doesn’t even get rid of such variation? Then being anti-cure is not a decent idea. So being so vehemently anti-cure should not be accepted. And many of the neurodiversity pushers are against just about every form of treatment attempted, trying to use scare tactics against parents over the safety of treatments, and insults against the professionals who devised the treatments.
This is not acceptable and shows there may be different agendas tied to neurodiversity, who also like to lower awareness of the huge gap in abilities between the lower and higher functioning autistics. Although there are different types of abilities to consider, and the quantities of strength in each them come in different combinations in different individuals, the inequalities still are there.
I have heard many times that there are some who don’t have basic abilities and who don’t get to be highly intelligent, and that there are ones who are high functioning, have nearly no practical deficits in functioning, and who got extremely high intelligence. This is very unfair.
Just about every autistic spectrum disorder person supporting neurodiversity is high functioning or has a child who is clearly on the path to high functioning. It sounds like a conflict of interest. These fortunate people get lots of advantages and want to prevent the disadvantaged on the autistic spectrum from appropriating abilities.
Anyone implying that independence is not that important is most likely a liar and is greedy. Such ideas are not tenable. People deserve to be equal and to get their real happiness. The neurodiversity crowd takes advantage of the emotional overreactions of some people and complexities of the condition to push their nefarious agenda, and to vilify those who are trying to make life better for the lower functioning.
bullet
Aug 23, 2007 at 10:13 am
“The day I accept a future for my son where he will never drive a car, flirt with a girl or cook a meal is a sad, sad day for the both of us.”
I cannot drive, I know other people on the spectrum can but I personally cannot. There’s too many factors involved. I’ve never fretted about it.
I cannot flirt, I’ve never chatted anyone up, I cannot do it. I don’t feel awkward, I just haven’t got a clue how to go about it. When I met my now husband he approached me because he liked the look of me and I was on my own. We talked about the lectures and about hisorical events for weeks before we even knew each others names. He was only the second person I’d dated, the first lasting only 9 weeks. Then we moved from just talking to dating and after a while got married. Today is our ten year wedding anniversary. I am telling you this so you know that sometimes things work out :).
Joseph
Aug 23, 2007 at 12:55 pm
Billy: I don’t think I have seen a post with so many unsubstantiated stereotypes as yours. But let me just address this one bit:
“People deserve to be equal and to get their real happiness.”
I’m not sure what you mean by “real” happiness, but that’s beside the point.
Of course people deserve to be equal. Equal does not mean biologically the same. Equality is about human rights, not about qualities or skills or biological characteristics.
If I say gay people or black people deserve equality, I wouldn’t mean that it would be good for all gays to be turned into straight people and all black people into whites so they can experience equaility. Do you see that?
HeatherS
Aug 23, 2007 at 1:27 pm
Wow. Popular post! Okay, I admit that I haven’t read all of the responses yet, so I may be repeating what someone has already stated, but: Patience. Patience is the biggest one. Also, a sense of humor. The latter can be applied when the patience starts to wear thin. If you can try to remove yourself from a situation and see it as though you were watching a sit-com, some of the situations to seem to really get Autism Parents down can actually be quite funny.
amy
Aug 23, 2007 at 2:09 pm
pD-
I do wish you would expand your view of what constitutes a rich and meaningfully productive life.
I am 39 years old, painfully well-educated, and yet I can count in months the time I’ve spent employed fulltime. I put off learning to drive until I’d graduated from college, and still dislike both driving and car culture so much that I’ve intentionally lived in places where driving isn’t necessary. I’m a single mother, and thanks to your posts, I see I’ve been celibate for several years now. I expect to stay that way for several more, as I don’t intend to inflict the usual dating/stepfamily circus on my daughter, and frankly I don’t have any driving need to git me a man.
It has seemed to me that my life has been extraordinarily lucky and good. I’ve done — and have felt free to do — what interests me, regardless of its social standing. I’m healthier and more fit than most people my age; I don’t sit at a desk all day, I don’t spend hours in the car, I don’t eat because it’s time to eat. Knowing I’m not made for the usual American life, I’ve found a wonderful town with good schools, low overhead, great bike-and-walkability, and high-wage part-time jobs, and we live well here.
You sound like a good and deeply loving parent who would give anything for your child. And I don’t wish to minimize the practical troubles your son faces, or the work you do to make up for them. But if you teach your son that his life is no good or a defeat if he doesn’t _______, I think you’re setting him up for unhappiness. It could very well be that he’s not interested, on his own, in __________. But he’ll be listening to you, and will get the message that not doing _________ makes him deficient and his life unhappy. If you leave that alone, and if you’re lucky, he’ll never notice that most of the world expects you to be able to cook or flirt. He’ll be busy with other things.
I’m profoundly grateful that my parents did not make a career out of pointing out the things I didn’t or couldn’t do and trying to coach me into them. Instead they — my father in particular — did yeoman work in protecting me from the school administration and its own needs. Now, in midlife, I see that I’m probably diagnosable, and also that it doesn’t matter — except in the discovery of other people who share some of my experience. There’s no good reason, and no benefit, to recasting my ordinary life and self as…miswired, somehow…unless I can’t actually do a thing that’s absolutely essential. Are there inconveniences, sure. On the other hand, I have no way of measuring my experience against anyone else’s. Frankly, neither do you.
I’d say meet your son on his own terms. If he’s not interested in cooking, if it’s beyond him, so what? Other people won’t cook? The country’s awash in food, he won’t starve. If he’s not going to flirt — are you so sure he’ll want to? (I’ve had people insisting at me for years that I need to date, and they find it very hard to believe that I’m happy on my own.)
Just don’t give him the idea that he’s not measuring up by standards that belong to you. Find the standards that are reasonable for him. He’ll have to be your expert for that.
Billy
Aug 23, 2007 at 5:56 pm
Joseph, not everything is about human rights and culture. Characteristics and traits in general and skills shouldn’t be considered the same way. Why shouldn’t there be equality in abilities and mental strength? People clearly don’t like being a lot less capable than others, and hold intelligence in high regard. Such realities shouldn’t be obscured by talk of “acceptance” and natural variation.
I have already implied that getting rid of variations or traits isn’t what is necessary or desirable. Using blacks and gays as an example is nonsensical and is changing the issue to diversity, which the issue is not completely about. People deserve to get a fair share of the qualities that people measure their lives by.
The disparities are too wide, and tend to be justified by those who don’t lack and got lots of what is wanted. It seems people want to be truly happy, not by the patronizing of do-gooders or by being just told to be happy. Happiness seems to come through getting the desirable things in life. Trying to make people equal through giving abilities to those without them isn’t easy, but could be becoming more possible now and in the future.
Patrick
Aug 23, 2007 at 6:48 pm
Back to Billy’s other point about a cure:
“What if a cure, whatever it would turn out to be, doesn’t even get rid of such variation? Then being anti-cure is not a decent idea.”
Show me a real cure and then I will decide, until then your postulation is pointless.
Kristina Chew, PhD
Aug 23, 2007 at 6:56 pm
HeatherS: I’ll underscore the importance of a sense of humor! Laughter can be wiser, and the phrase la comédie humaine, the human comedy, doesn’t exist for nothing, I should say!
Neurological difference is the (if you will) “newest” or “latest” etc. sort of difference talked about in regard to diversity and disability. It’s something that can occur in anyone of any race, gender orientation, ethnicity, religion—-and I have to say, I often feel the strongest ties to those who are “our people,” as a father on the beach said to me just this afternoon.
amy—-you wrote “I’m profoundly grateful that my parents did not make a career out of pointing out the things I didn’t or couldn’t do and trying to coach me into them.” It’s been the best thing, for Charlie and for us, to focus on what he CAN and DOES do and to give him all the support we can (running after him, my husband especially, in huge waves in the ocean this afternoon—the current was so strong that three young men (teenagers or in their 20s) had to be rescued y the lifeguards).
Steve D
Aug 23, 2007 at 7:16 pm
While there is certainly some interesting discussion taking place here, I think it is of some value to take a look at the credibility of the contributors.
Harold, you seem to have, some time ago, taken the position that each and every parent or autistic individual who associates or identifies with the concept of Neurodiversity has a homogenous view of autism and how it should be considered or handled. You consistently ignore any evidence to the contrary, including direct statements from those of us who you have insulted. You have well-documented tactics of launching unprovoked insults and then retreating from any real discussion of the issues. You believe that your son is the “most autistic” of any of the people or children of people you attempt to defame on this topic, and that this somehow endows you with moral authority over other members of the community. You misrepresent your opponents’ arguments and, when clearly corrected, fail to justify your position or apologize for your mistakes (remember the whole “deficit model” thing?). You believe that your own site should be kept free of any hint of debate, and instead use it as a launch pad for insults against those with whom you disagree - in your own words, “I have kept this site as a moderated site and I am convinced that is the only way for an autism blog site to function.” And yet you continually show up on other people’s sites and instigate people to debate - this shows a profound lack of respect for other’s hard work, and is a cowardly pattern of behavior.
You refuse to conduct reasoned discussion of autism-related topics, as is evidenced by your refusal to allow even moderately-toned comments through on your blog, and your refusal to engage in one-on-one reasoned discussion. Instead, you use only strawman arguments in maintaining your stubborn position. You take the easy way out of reasoned debate by referring to a clear, well-presented statement such as that made above by Estee as a “rant”.
The first I ever heard of you was when you showed up on my site and accused me of entrusting the raising of my son to a group of internet strangers. What a foolish thing to say, and how damaging to your credibility to anyone who has dealt with me on fair terms over the last few years since my own son’s diagnosis of - yes - classic autism with severe developmental delays.
So lets continue the important discussion of acceptance and how it relates to cure, but lets also let it be known who exactly it is that we are discussing it with, and how much credibility they lend to the discussion.
Joseph
Aug 23, 2007 at 8:24 pm
Billy:
“Why shouldn’t there be equality in abilities and mental strength?”
Because the world doesn’t work like that. Ever heard of a bell curve?
Billy
Aug 23, 2007 at 8:41 pm
Joseph, the world doesn’t have to stay the same, it changes over time. I hope someday that the bell curve won’t be true anymore. I think it is better to be progressive. But some people apparently want to keep things the way they are.
Joseph
Aug 23, 2007 at 8:52 pm
“I hope someday that the bell curve won’t be true anymore.”
You’re hoping for the impossible. Even if we were all clones of one another, some differences will always exist, and there will be an average and a standard deviation from the average. Some will have a little bit more of a skill and some will have less of a skill. 1% of the population will always be below the 1-percentile of any skill.
I agree that we should strive for things to improve. Science, in fact, has improved our lifes in many ways. Our life expectancy is much longer than it was just 100 years ago. But this doesn’t take away from the fact that diversity of skills (and everything else) will always exist.
Billy
Aug 23, 2007 at 9:31 pm
I doubt anyone expects people to become clones of each other. Small differences in skills wouldn’t be alarming or very onerous. The problems are that there are huge gaps in abilities among people, even in basic abilities. That is what should be remedied.
Aidoann
Aug 23, 2007 at 9:46 pm
For me, one of the most important things was acceptance. I think Spock (from StarTrek) sums it up pretty well with this statement… if Sarek will accept his son for who he is, that will be thanks enough. (TAS: Yesteryear)
Sarah
Aug 23, 2007 at 10:04 pm
“The problems are that there are huge gaps in abilities among people, even in basic abilities. That is what should be remedied.”
This idea isn’t just chilling and reeking of eugenics, it’s also very shortsighted. Yes, there are “huge gaps” in abilities among people. So what? There’s a huge gap between Stephen Hawking and Average Joe in math/science ability. There’s a huge gap between Yo-Yo Ma and Average Joe in musical ability. How do you propose we eliminate “huge gaps in abilities” without eliminating truly exceptional abilities? The bell curve has two ends, after all. We try to make everyone “in the middle” and you just end up with a bunch of unexceptional people who aren’t actually all that different from one another.
The solution isn’t to eliminate the gap in abilities (an impossible goal with troublesome implications). Instead, why don’t we make a world in which everyone truly has equal rights and is treated equally regardless? Equal rights certainly should not be based on equal “ability.” Everyone being equal should not mean everyone being essentially the same.
Billy
Aug 23, 2007 at 11:05 pm
Sarah, you sure like to incite fear against something that likely is counter to your interests. First of all I’m talking about finding opportunities not involving eugenics, because eugenics just throws people away. I don’t believe that equal rights should be based on equal ability. And I doubt people such as yourself are committed to getting people treated equally regardless of ability.
Exceptional abilities should be appropriated by more people. I’m not talking about making everyone just average. Interestingly, people with exceptional abilities have played, and may in the future play, significant roles in devising opportunities that will benefit those who lack abilities. The realization of the high appreciation of innate intelligence and how it has benefited society has been progressive, but newer concerns could be getting more priority.
The two ended bell curve has one end with people that don’t prosper and many times suffer. Some well off people want to disregard that. There should be attempts to give basic abilities to those without them. People on that end of the bell curve have to try very hard and with lots of time to do things that other people can figure out with much less mental exertion who also end up with many more abilities. I don’t think that is fair.
But I know it can’t be changed yet. It is something that should be considered, and those who consider it likely wouldn’t be the type to falter in the face of scare tactics. Its overwhelmingly apparent that people dread being far less skilled and apt than other people, and they are in an endless struggle to get ahead. This struggle won’t stop through the use of acceptance rhetoric. People want more than only equal treatment.
Kristina Chew, PhD
Aug 24, 2007 at 12:15 am
Billy, maybe you’ve already mentioned this and my apologies if I have not noted this: Are you the parent of an autistic child?
amy
Aug 24, 2007 at 12:50 am
There’s a lot of heat here, and I can’t say I understand the cause of it. What is it that you, combatants, are worried about? Yes, there are bell curves. So what? If your child is far to the left, then regardless of the cause, he or she will need your help until your death, and beyond if you can fix it that way. If not, he or she will likely do like the rest of us and get by.
Something left out of the conversation here is that the vast majority of people are nuts, slow, or ill in one way or another. Most people still get by for 80 years or so. We’ve set things up on purpose so that’s possible.
I fail to see why this is an issue of anything but tolerance (or dealing with an understandable lack of tolerance) in any but cases of profound disability. For the most part it seems to me a matter of inconvenience and irritation. I don’t like this talk of “Aspies” and “neurodiversity”, either; a richer and more accurate picture, I think, is there if you take people as they are. I don’t see the need for camps.
Kristina Chew, PhD
Aug 24, 2007 at 1:03 am
Very well said, amy: Thank you.
amy
Aug 24, 2007 at 1:09 am
Billy writes:
““The problems are that there are huge gaps in abilities among people, even in basic abilities. That is what should be remedied.”
and
“Happiness seems to come through getting the desirable things in life. ”
To the first, well, good luck. But to the second…Billy, have you looked around here? I mean really looked at some of the autism/aspergers’ blogs? You’re talking to people who delight in [i]numerals[/i], for crying out loud. Who want to be left alone to contemplate the sidewalk and do whatever it is they do, however they can. These are the desirable things in life here. Occasionally it’s brought to my attention that I’ve failed to, I don’t know, be afraid of what other mothers think of my clothing. Boy, what a letdown, missing all that anxiety. They all still talk to me, offer playdates, and seem very friendly, so unless I’m also missing some seething subtext of vicious fake niceness, I guess we’re A-OK.
“Desirable” is an awfully subjective word.
Billy
Aug 24, 2007 at 1:36 am
I am not a parent. I don’t know about the ways that desirable is subjective. I guess for some things it could be.
Sarah
Aug 24, 2007 at 11:38 am
“I don’t believe that equal rights should be based on equal ability.”
Then why the focus on eliminating “gaps”?
“And I doubt people such as yourself are committed to getting people treated equally regardless of ability.”
Can you please refrain from insinuating that I don’t mean what I say? Just because *you* aren’t committed to this ideal doesn’t mean that *I* am not.
As for the rest of the post, I don’t believe for an instant that “low ability” and “high ability” are opposites of another. Just because someone might appear to be of low ability in one area doesn’t mean that that they are in need of “fixing.” There is plenty of scientific evidence to suggest that autistic people–including so called “LFA” people–are more able than traditional IQ measures suggest. I am not against helping everyone achieve their potential. What I’m against is the idea that we should make our species “better” by “eliminating gaps in ability.” I find that idea quite unrealistic and bigoted.
Patrick
Aug 24, 2007 at 3:51 pm
Hi Billy, I have been diagnosed with Asperger’s disorder.
Do you have any condition of difference for which the above discussion might include you? Or are you here because of the chance to enjoy a good debate?
I beleive I know Kristina and Joseph and Kev and bullet and Steve are involved in the care of autistic persons or are themself somewhere along the spectrum.
I was just wondering other than the right to free speech on an open blog what your qualification(s) for participation here is?
passionlessDrone
Aug 24, 2007 at 4:22 pm
Hi Joseph, Amy and Bullet -
You have written long responses to me, thank you; but it has become apparent that I have not clearly explained what troubles me and why I feel changes in acceptance are of little consequence to my son.
I do not worry about cooking, or driving, per se for my son, but rather, that he lacks a myriad of underlying skills necessary to cook or drive. Until my son came along, it never occurred to me that someone could lack these types of skills; they are taken for granted as so obvious to everyone that is ‘normal’, and apparently, to some that fall on the spectrum as well.
My son does not seem to have any ability to grasp anything of an abstract nature. The fact that
the number two is greater than the number one, the difference between a green set of blocks and a
blue set, the difference between today, tomorrow, and yesterday, that voices on phones are people,
that stickers of body parts can be put together to represent people, not just lines of objects.
In my post, I used cooking as an example, but my worry is not that he’ll mix the sugar into the butter at less than room temperature; but rather, that he won’t understand the difference between setting the oven to 325 and 425 degrees, and what that means to how long the cookies stay in. Of course, you’d need to be able to read a recipe, which entails understanding not just how to read, but before that, that the letters, A, B, and C are distinct things that represent something. You also need to understand fractions, and that you can’t use any cup to measure flour, but cups of specific volumes.
If you cannot understand that 425 is more than 325, your ability to make meaningful decisions about
how you live your life is compromised in many more ways than simply your baking skills. This is why
I will not accept a future for my son where he cannot cook; because it means his ability to make
decisions for himself will be globally affected.
Sooner or later I won’t be around, if he doesn’t change, people that don’t love him as much as I do (or at all) will be making nearly all of his decisions for him.
I don’t know how to define a happy life, exactly, but I struggle to find a way where living with other people making all of your decisions could be one.
Take care.
-pD
-pD
Kristina Chew, PhD
Aug 24, 2007 at 6:23 pm
pD, I was just wondering—-how old is your son? (And you don’t need to answer if you would rather not.)
Billy
Aug 24, 2007 at 8:30 pm
Sarah, I’ve heard that there are studies showing that LFA got more abilities than previously thought, so that shows there could be a lot of opportunity for them. And the idea of ameliorating the functioning of those lacking basic abilities should extend outside the autistic spectrum also. People like you say you don’t want to prevent people from reaching their full potential, but seem to come out against every form of treatment for autistics. Treatments should be used to help them use their newly discovered abilities.
I don’t see why potential should be limited, especially if there isn’t a lot in the first place. If there are opportunities to increase the abilities of someone, there isn’t any reason not to do so. People want competence, and to not have so much less of it than others. People should be given what they want if it is available.
You say its unrealistic, but many things that are common were once unrealistic. I just hope that if new opportunities come along in the future, people like you don’t hold others back. Its not about bigotry, its about the things that everyone wants. Plain and simple.
Patrick, it is kind of a long story about why I am discussing this issue. There is a large difference with me, quite an onerous one but I don’t understand it. I’ve been following this issue on and off for a few years because a while back I almost got diagnosed with something on the spectrum.
amy
Aug 25, 2007 at 12:37 am
pD, I’m sorry, I understand.
It sounds like your son has a fairly profound form of autism. If it’s any consolation, in my experience and in the experience of many adults I’ve talked to and read in the last several months, these things often improve as time goes by. I spent childhood nearly crippled by the intensity of surfaces, and I recall being told I took things much too literally. I was unable to understand fairly ordinary academic abstractions, despite being bright. But now the insistance of surfaces has receded and abstractions are much easier — so much easier that I’ve found myself much at odds with people who say it’s hard to learn new things after your 20s. I work as a science writer now and have no trouble following MIT lectures in chemistry and physics. Would’ve been impossible for me 20 years ago. I still have trouble with synthesis, but frankly so do most people when it comes to anything more complicated than throwing a party, so I get by. (I really don’t believe most people have the requisite synthesis skills and coordination to be out there driving.)
What you may be overlooking, though, in all of this, is the tremendously passionate experience of a world so live, however disorienting it may be. That was mine, anyway. I don’t know your son’s. But he really may not feel he’s missing much, or that the decisions other people make for him are terribly important, on the whole. (I used to very happily cede authority in jobs. I got to ignore the politics, ignore administrative worries, and bumble along while doing the thing I was actually interested in. No problem with them steering me so long as I didn’t have to let go of my book. Now I just work freelance and don’t have to deal with any of that; I’m just the hero for turning in acceptable work reliably.) For you there’s the practical problem of seeing that he gets by. But I think there’s a good chance you’ll make yourself unnecessarily unhappy if you slot in your experience and tastes for his.
amy
Aug 25, 2007 at 12:45 am
Kristina, in answer to your original question, I suspect the happiest situation is where the parent doesn’t give a rat’s ass for the diagnosis, but knows the child, is more or less unconcerned about what other people think. And is savvy enough to help the child get competitive in a job market somehow, whether or not the child’s aware of it.
David N. Andrews M. Ed. (Distinction)
Aug 26, 2007 at 12:19 pm
Joseph: “Because neurodiversity is about giving up on children? Harold: Do you have to work hard at misrepresenting others or is that a natural talent?”
It comes natural.
David N. Andrews M. Ed. (Distinction)
Aug 26, 2007 at 12:26 pm
“However, as I’ve tried to illustrate to you countless time, the world is not black and white. Neither is autism. It is both disorder and difference. Can you accept both?”
Can you figure out how Harold D would cope with the core thesis in the example of Schrödinger’s cat?
Joseph
Aug 26, 2007 at 1:25 pm
I don’t feel sorry for pD. From his description, his son must talk or have some understanding of language. I can’t say the same for my son, for example. He’s just starting to develop receptive language, and can still only say single words here and there. (He does make progress good progress as time goes by).
The thing is that I know my son can be happy. I witness him being happy every day. Being happy doesn’t depend on any abilities or autism. It depends on his environment.
Billy: “People like you say you don’t want to prevent people from reaching their full potential, but seem to come out against every form of treatment for autistics. Treatments should be used to help them use their newly discovered abilities.”
About the only mainstream autism treatment that *some* neurodiversity advocates speak out against is ABA. In my experience, neurodiversity advocates do not reject treatments blindly. They each will have their well though out reasons for doing so. I’m sure you can find them spelled out at length on blogs and such.
amy
Aug 26, 2007 at 3:50 pm
Joseph: I didn’t hear that pD was looking for anyone to feel sorry for him.
Billy: You have to be very careful about the idea of “treatments” for anything related to autism. Consider how well treatments work when you’re talking about a physical ailment whose mechanism is, in medical-terms, well-understood. A strep infection, for instance, where yes indeed, our friend S. aureus has been cultured. Even in these cases, when you give antibiotics, you’re going to get surprises. There’s unexpected resistance. A fungal infection takes the opportunity. There’s an allergy. Etc.
Now consider autism. We don’t know what autism is. By definition it’s a loose set of descriptions of observed behavior. Why that set? That’s a historical question. Do we know what’s happening in any single individual? No. Can two individuals show the same behavior for radically different reasons? Yes. Do we have clear and well-accepted “treatment goals”? No. Might a newly-devised treatment work, however “work” might be defined? Maybe. Will we know why? No.
There’s a big market now in this stuff, but it’s not a medical question yet. That’s the main thing to remember, I think. This is not medicine. It’s not science. It’s teaching, maybe. I’m reminded of experiments in which the aim was to civilize Indians. Anyway, bottom line, I’d be very skeptical about all of this stuff, and just take whatever looks useful for your kid, and — unless you happen to find an extraordinarily wise and sensitive therapist — keep the experts away.
The Cure Question
Sep 11, 2007 at 9:44 pm
[…] Cure Question—the “c” word—-has come up regularly here, in a post about what qualities does the parent of an autistic child need and in an earlier post about acceptance vs. cure, from which I quote: …. proponents of […]
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