It was hardly a hijack given the relationship between autism terror and the anti-vax movement.
I am not autistic, I am at best a “non-autistic ally.” I do not speak for autistic people and am in no position to say what they are or what they aren’t. I have an autistic child for whom I advocate and whom I hope to be able to teach to advocate for himself when he gets older and more verbal.
What matters is not what we call it but what autistic people say they want. Do they want to be “cured”? Do they want to be normalized? Would they prefer to exchange their experience of the world for something not “disordered?” In my experience, most of them who are able to communicate in any fashion say that they would not. But you don’t have to take my word for it.
But anyway, the way you’ve framed the question isn’t very helpful. Whether you call it “different” or “disordered” matters less than the underlying presumptions you have about disability. I will spare you the lecture about the social model of disability and will just refer you here: http://en.wikipedia.org/wiki/Social_model_of_disability
I’m not here to defend the social model. It leads to some very strange and uncomfortable places when it is pushed to its logical conclusion. But one doesn’t have to adopt it wholesale to recognize the moral implications of pathologizing a condition (and normalizing it with potentially invasive treatments) that autistics feel may be core to their identities rather than removing some of the systemic barriers that autistic people face to leading fulfilling lives.
The “fight” and “war on” public relation campaigns seem to be a go-to metaphor that is often silly and way overplayed. This clearly is one of those times.
That said …
Embracing neurodiversity is a nice concept but the simple fact remains that autism is a disorder - a condition that leads to dysfunction and disability. It is a developmental distortion, sometimes associated with delays, that prevents those with it from functioning well. Self-diagnosed Asperger individuals and those high-functioning autistic spectrum individuals put under the umbrella in recent years (one of the main reasons there has been such an “epidemic”) aside most people with autism are not just quirky. They have difficulty communicating, a hard time forming relationships, often have behavioral decompensations, and need lots of care to get by. They cannot live alone.
There are ways to identify those with and at high risk for autism early and to provide interventions that really do limit the amount of the dysfunction. There may be ways to identify it even earlier and intervene better, before the distored development has progressed as far.
That is part of what you do with disorders - you treat them as best as you can to limit the dysfunction and disability associated with it and you prevent it as best you can. You do not do that with embraced “diversity.” We’d do the same if we could with personality disorders and a host of genetically based brain disorders, all of which are also not shells people are trapped in but who the people are and all of which are significant disorders that cause disabilty and dysfunction and which should not be embraced as joyous diversity.
Most with autism are not Sheldon Cooper. Most are not Temple Grandins. It is not just “a difference” for the vast majority. Many people have some autistic-like features and can function fine, sure. Some of those features in small doses are even advantageous in certain ways. And that in no way means that autism is not a disorder.
Maeglin if there had been a way to identify your child at six months old and enter an early intervention program that explicitly fostered skills that then resulted a more “typical” developmental course - one in which your child could communicate more easily, have better social skills, have been less likely to have had those meltdowns that you have no doubt experienced when the routine did not go as it was supposed to or something smelled wrong, was able to have more freinds more easily … would you have chosen to not do it because you embrace your child’s neurodiversity?
In my non-professional but direct personal experience the trouble with the “autism” label is that it’s applied to such an incredibly wide range of syndromes that IMHO the label is practically meaningless. I’ve seen it applied to serious developmental disorders where the person was unable to function in society, at least nowhere near an age-appropriate level. You don’t have to ask if this is a “disorder” or not. The trouble is that the same term is also applied – using medical-sounding modifiers like “high-functioning autism” – to kids who exhibit nothing more than mildly obsessive behavior with something like computer gaming, or emotional outbursts or lack of apparent empathy. Back in my day we called that “being an adolescent” or “being a teenager”, or sometimes more simply, “being a spoiled brat”. Now we seem to have a multi-million dollar industry engaged in the business of creating labels but no actual new understanding.
This is a false dichotomy. It is not a choice between “joyous diversity” on one side and communication and fulfilling lives on the other. That is a somewhat impoverished characterization of the problem. No one to my knowledge no one advocates against developing communication skills or having fewer meltdowns. That wouldn’t be neurodiversity, that would be ridiculous.
The harder questions are what we do to treat autistics and how much we should try to lower barriers to their participation in society. The first is tricky because many treatments for autistic children are coercive. Early Intervention began on a widespread basis in maybe the early 80s, so whole cohorts of people have only recently come into adulthood. Their reactions to coercive therapies are decidedly mixed despite the fact that clinical research supports their efficacy. Questions like “do we treat the dysfunction?” are much easier to answer than “do we isolate this child from his parents and hold him down by force until he complies?” The more we view autism as a terrible disorder (which it assuredly can be), the more easily we can justify using force in the treatment.
Autistic people are justifiably worried about this.
Assistive communication technology and more widespread awareness can also help erode some of the social barriers. Autistic people act differently. Simple acceptance of these differences by neurotypical people goes a long way towards participation. Neurodiversity means not sniggering at the person who speaks in a monotone voice or mocking the person who has trouble controlling his walk. Sometimes all it takes is a little bit of patience and understanding.
As for me, my son was diagnosed when he was 22 months old and began intensive early intervention. We were very fortunate that with few exceptions, we had wonderful therapists with whom he made great progress. My wife and I were very much a part of this process. Not everyone is as fortunate. Some children and parents still bear the scars of inept and/or sadistic treatment. Parents persist in these treatments despite their better judgment because they are treatments and their children are disordered. I hope, perhaps optimistically, that with greater acceptance of neurodiversity, and research into how to develop communication skills, parents won’t feel that their child’s condition is so desperate that it justifies such treatments.
Too much of the discussion is about treating children. This reflects our social preoccupation with autism as a parental curse. Neurodiversity means providing services and support to adults who are past the age of treatment. A neurodiverse society offers such services to that autistic people can participate. A society that is not so diverse offers institutionalization and marginalization as the only real alternatives to neurotypicality.
It occurs to me that autism must always have existed in all human populations but I’ve never heard of a pre-20th-Century reference to it. Perhaps before then, an autistic was simply classified as an “idiot” or a “madman”?
Both. Before much effort was made to figure out how to communicate with autistics, they were typically diagnosed as mentally retarded. After awhile people started realizing that they had normal (or often supernormal) cognitive skills but massively delayed communication and social skills. Assistive technology has made communication possible for many who could not communicate before. Some autistics who cannot speak can write, and even autistics who do not have the motor control to use a keyboard can use other kinds of improvised technologies. Some autistic children who cannot speak can describe their emotional states using a tablet app. They pull up the face that best represents how they are feeling to show the caregiver.
Before recognition of their condition and technology, the usual answer was to keep your “idiot” child out of public view as best as possible.
The focus is on children because the focus is on prevention both of the condition at all and of the severity of the dysfunction that the condition results in. The most effective interventions to prevent adult disability occur when it is identified as early in childhood as possible and some hope to prevent autism from occurring in the first place.
Treating autistic individuals (and they are, to pick a correctness nit, individuals with autism, not “autistics” - many find the latter insulting) as individuals, with respect and tolerance, is something that should of course be done. And should be done for people with other disorders as well. Identifying it as a disorder in no way implies intolerance or rudeness are called for or should be accepted.
I completely endorse mainstreaming children with autism as much as possible and supporting adults with autism to function within society as well as possible, treating them with respect and dignity, and figuring out to use their strengths to the greatest degree possoble and to deal with their weaknesses. I also think that people with cerebral palsy, Down syndrome, schizophrenia, spina bifida … and people with other disorders … are entitled to the same respect and opportunity that everyone else is too.
So you apparently have no beef with considering it a disorder that should be treated with the goal of reducing the degree of the dysfunction (which to some degree does mean trying to make the individual a bit more “normal” or at least less “abnormal” - communicating and developing relationships a bit more like “normal” people do). Your concern is over which treatments are appropriate. Do you consider Applied Behavioral Analysis to be coercive? Inappropriate? We are not in the Bruno Bettleheim “Love is Not Enough” phase any more. I do not see many of the current treatment plans for autistic kids to be sadistic and see them no more coercive than most parenting entails (short of the occassional child who is forced to take an atypical neuroleptic to help reduce excessive aggressive behaviors).
BG even a just few decades ago many who are now labelled as having autism would have been labelled as just “odd” or “weird” and most of the rest, the more severe cases, were grouped with the “mentally retarded.” Fairly few of those who get labelled as autism now would have been so labelled then. The expansion of the diagnostic umbrella is not a bad thing because it gets appropriate intervention to a larger group of people who do benefit. But it has made it impossible to figure out how much of the increase, if any, is a true increase and how much change in labelling.
And this is precisely the source of resentment for many adult autistics. They got some EI and maybe a little special education, and when they couldn’t be cured, they basically fell out of the system.
You are largely wrong about this, by the way. While there is still some debate about nomenclature in the autism community, in general people dislike being called “persons with autism” and strongly prefer “autistics.” There are some exceptions, but one is usually safer saying “autistics” and allowing oneself to be corrected.
You mean, identifying it as a disorder should in no way imply intolerance or rudeness. In practice, it kind of does. The behaviors are prior to the label, but the label can license the intolerance.
I personally don’t think it matters much what it is called but what the implications are. The goal is to make people with disorders less disabled due to systemically high barriers to participating in society. Autism is never going to be as mild as being left-handed, but it could be a lot less disabling for many people than it is.
Correct. Autistics draw a distinction between learning skills that “mask” their autism to make them appear more palatable to neurotypical people. This is where I have to defer to them and to their experiences. I simply do not know yet what therapies are masking versus what genuinely improves communication. I do believe that the goal of the exercise is not just to help autistics pass but to give them the tools they need to be fully participating adults, wherever possible. I hope that we will be able to mainstream my son.
The problem is much greater with the practice than even the doctrine. My son had some ABA (though he responded much better to child-directed DIR/Floortime practice). Michelle Dawson, a (highly controversial due to the role she played in a Canadian Supreme Court case) autistic woman makes the arguments about the ethics of ABA here: http://www.sentex.net/~nexus23/naa_aba.html
The accusations Dawson (and others, it is very easy to search for negative testimonials) make against ABA, its practitioners, and its industry suggest at the very least that we think very carefully about what we do to people without their consent under the rubric of treatment. But labels are powerful: an ABA “therapist” may have no more than a high school degree and a certificate from a few weeks of training. Even if one doesn’t believe the story about the ABA-science complex, one should recognize that this is a problem.
All true. This help really has the potential to make their lives easier and better in the future.
No question services for adults with autism suck and resentment about that is justified, both by those autistics (if you say so as preferred :)) who are able to express that and by their families and others who love them. (“Autism” of course is a common phenotype that covers a wide spectrum, from those who are high functioning to those who are more globally delayed.)
What is “masking” and what is functionality? We are talking about social interactions to no small degree. Is turn-taking skills and learning to talk about more than a very narrow range of subjects masking or learning skills, for example? It does make them more palatable to neurotypicals but being palatable to others is social skills to no small degree. Isn’t it? Unlike you I do not asume that deferring to their perceptions is necessarily truth.
How old is your son now? Kudos to whoever helped get him picked up fairly early by the way. In retrospect when did you suspect something was not typical in his development? Happy you have found an approach that works well for him and obviously he is fortunate to have you for an advocate.
My 11yo is autistic - mid-to-high functioning, but autistic nevertheless. He is currently “mainstreamed” - that is, he is in a normal 5th grade classroom, but has extra services, some one-on-one teaching, etc.
I can honestly say that he does NOT enjoy being autistic in any sense. Maybe unlike a lot of kids with autism, he is very social in the sense that he craves company of kids his age. But because of his problems with speech and quirks in behavior, he has no friends. He is not mistreated or bullied in school, but neuro-typical kids at this age seem to be extremely reluctant to associate with a weird kid who doesn’t talk a lot, when he does may say something completely off-topic, may laugh at inappropriate times, does not answer questions when asked, etc. etc. etc.
So - he has no friends. He has not been invited to even one birthday party this year so far by any kid in his class. This hurts him. I know this, because he tells it to me once in a while when he is unusually talkative, and because I see how his eyes light up when he’s in the company of some kids, as rarely as this happens. Once in a while he cries because he is not invited somewhere, or because he wants to be with his “friends” as he calls them, but I have no way of arranging any play dates with them, and believe me I tried.
So don’t tell me how autism is just another way of being. It is a disorder. It is a disease. It is a cage that constrains him and ruins his life. And yes, he hates it and would love to be “cured” of it. He would love to be able to communicate freely and to have friends etc. It’s absurd to even suggest that he wouldn’t. And if there was a cure I would literally spend every dime I own to get it. And saying that does not in any way, as some poster upthread put it, “devalue his life”.
I feel the same. I have a nine year old daughter with autism (or autistic daughter, whatever one prefers) and she’s having a pretty tough go of it. We can ask the world to change for her, or we can work to help her adapt. I would love it if she could be cured because the autism part of her life is making her miserable right now. She’d still be the great kid she is if all that went away. She’d just be happier.
At the risk of violating GD etiquette, this is from the pit. But it seemed to fit this line of conversation more than the one going on in there, so…
See, I cannot for the life of me understand that. I’m sorry if it hurts anyone’s feelings, but deafness is a disorder. It is a physiological change which in no uncertain terms worsens your ability to function as a human being, to the extent where communication with others is hampered, life becomes more dangerous, and you are absolutely and indisputably worse off being deaf than you are having decent hearing.
And it’s the same with autism. Yes, autism is generally a defining trait for people suffering from it, but it does nobody good to claim that they’re not suffering from it (relative to not having it, anyways). Make the best of it, but it’s a disorder. Sure, the line becomes less clear-cut as you become more high-functioning, but the fact is that if we could “cure” autism in a child’s early stages, we should. And it’s definitely a goal we should strive for. I also don’t really understand the argument that if you take away autism, what you have is a completely different person. As far as I can see it, it’s still the same person, just with a mental makeup that is significantly different in a handful of ways. Much like a person suffering from schizophrenic delusions who is cured is significantly different in a handful of ways.
I’ll freely admit I’m not arguing from a position of the greatest understanding, but the comparison between deaf pride and autism acceptance (that is, acceptance that the disorder is just something to be lived with and should not be worked against) just seems apt to me - autism is a disorder, and curing it is a good idea. (And for what it’s worth: “Deaf pride” is possibly the dumbest shit I’ve ever heard of. Seriously.)
Are you already aware of the Lorna Wing categories of social impairments? This goes back to 1979 and it is interesting which group she found most people with autism belonged to and how it does seem to be different now.
In 1979 that aloof group was the bulk of what got labelled as autisitic and they were not a high functioning group.
Now the more highly functioning group is identified as autistic more often and more are part of that “active but odd” group. This higher-functioning subset seem to crave social engagement but do not have the skills they need to get it. Parents see that and it hurts. Recognizing that dysfunction as a disorder that you wish was not there and feeling pain for your child, wishing that they could have the social skills they lack, is not devaluing him or her. It seems to me it is loving the person.
Of course. I admit I am a little frustrated that the discussion is still so black and white. Only the most extreme end of the neurodiversity movement does argue that we should make no effort to treat autistics and that they be left alone entirely. This position is radical and has few supporters, autistic or otherwise.
I do believe that how I feel as a parent isn’t actually all that important. Of course I want the best for my son and I would do anything to alleviate his suffering. He is three and a half and his favorite hobby is dancing. He does it to relax and to help figure out where he is in space. He can spend all day on his ipad looking at Indian classical dance videos (yes, really) and imitating them. So today we took him to a dance class to see how he liked it and it was heartbreaking. He was having a wonderful time, but he simply could not understand that there was a class, that he was expected to stay in one place, and that there were instructions that he needed to follow. The teacher and the other students were incredibly patient, but we know that he will not be able to continue.
Of course I wanted to wave a magic wand and make it all go away. What parent wouldn’t? I don’t wake up every morning thankful for neurodiversity. I wake up thankful I didn’t spend the night on the couch due to my son’s night terrors.
But quite frankly, how I as a parent feels is a lot less important than how autistic people want to be treated. I plan on having an adult relationship with my son when he grows up. I do not want him to remember me as the person who held him down while he screamed for some treatment or as the person who always forced him to act normal around the house. If autistics say that they don’t want this, then I really need to consider their perspectives when I make treatment decisions for my son. I want to make sure he has the tools to have relationships and to cope with living in a non-autistic world. At the same time, I want him to be free to be who he is.
“Cure” like “War on” and “Fight” are marketing ploys. No, you don’t get beat autism. You get to work really hard, in an attempt to somewhat limit the degree of disability. You get to spend many hours advocating for others to appreciate the strengths and to try to build on them. I guess fundraisers think that people will open wallets more when they are donating for a cure than for helping improve lives. And they may have a point.
The point of disagreement is where you (and others) seem to be saying that such language, and the language of calling it “a disorder” rather than “a difference” is devaluing those with autism, giving “permission” to marginalize them. The other eprspective is that by way of giving it a label we help explain with a shorthand why those behaviors exist, not because the autistic person is trying to to be rude or to act “odd” or is simply a jerk but because that is the way they are wired and they are doing their best. So those who might not otherwise might actually cut some slack for the “off” social behaviors.
I understand your concern about wanting to do right by your kid. OTOH it is not so much better for parents of (allegedly) neurotypicals. Many of them will blame us for whatever problem they have. My wife still has a cartoon over her desk of two young mothers holding their toddlers one saying that she has given up on giving her child a perfect childhood and is now just trying to limit what he will say about her on the couch.
This really bothers me, for two reasons. This is possibly the most bothersome thing for me about some of these movements that are about legitimizing and destigmatizing disorders. They hold up their disorder as a banner, and start acting like treating it would be a bad thing. Like, if there was a therapy to instantly cure all cases of deafness, there would be people within the Deaf movement who would be heavily against it. That’s incredibly fucked-up.
The other thing is that forcing medical treatment on your child that they don’t want isn’t always evil or wrong; sometimes it’s just parenting. You’re the adult; they’re not. Now, right now, there’s nothing that works for autism, and subjecting your child to, say, Gerson therapy is disgusting. But if there was something that worked, you shouldn’t be worried that your child would turn to you as an adult and say, “I hate you for curing me of a mental disorder that had serious negative connotations for my social and professional life.” And you really shouldn’t be worried that the child says, “no, I don’t want this” - you are the adult, you have to know better and be willing to execute on that.