What qualities does the parent of an autistic child need to have?
August 22, 2007 by Kristina Chew, PhD
Filed under Family, Parenting, Q & A
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”?
Jeff Stimpson
Jill Cornfield
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.
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.
Love, acceptance and patience.
“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.
“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?
“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.
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.
“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 :).
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?
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.
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.
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.
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.
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).
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.
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?
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.
“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.
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.
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)
“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.
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.
Billy, maybe you’ve already mentioned this and my apologies if I have not noted this: Are you the parent of an autistic child?
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.
Very well said, amy: Thank you.
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.
I am not a parent. I don’t know about the ways that desirable is subjective. I guess for some things it could be.
“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.
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?
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
pD, I was just wondering—-how old is your son? (And you don’t need to answer if you would rather not.)
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.
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.
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.
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.
“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?
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.
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.