When I learned my first son had autism I also learned the recommended “solution” to this “problem” was to institutionalize him. Willy displayed most of the symptoms and traits of classic autism. He’d experienced a serious, obvious regression. He was very unhappy, confused, and frustrated; he threw tantrums for no apparent reason. Alex was two. He had no words and didn’t want to play with or even acknowledge the existence of other children. The doctors suggested that Alex’s behavior was in response to Willy’s behavior. The doctors told us many things. What they didn’t tell us was how we could help our children.
I never considered the possibility of consigning my son to an institution. Children, no matter how challenged or challenging, are not disposable. I was full of feelings that I could not put into words. The closest I could come was: “You can’t have my son!” Later, those words developed into: “My children aren’t broken, don’t try to fix them.” On the Internet, I began to hear “whispers” of another approach. Apparently, there was another way to look at these “problems.” These “whispers” came from people who did not support the idea of neurodiversity and did not state the concept itself. These people, when given the opportunity, told me my feelings were wrong and I was harming my child by not trying every treatment available, or at least the treatment they supported as the “miracle cure.”
I was a political blogger at that time, devoted to the anti-incumbent sentiment. In short, I was already something of a rebel – ready and willing to challenge the status quo. I was quirky, neurotic, and intelligent. I struggled with social relationships and face-to-face meetings; and I already knew I had traits occupational therapists described as Sensory Integration Disorder. I already knew that the best thing for me was to learn how to cope and for others to let me just be myself. Why, oh why, could my boys not get the same respect I wanted for myself!?!
Sure, I was teased mercilessly as a child. Sure, there were lots and lots of people who tried to marginalize me, and some even succeeded. But it’s my head. It’s my mind. Why should anyone get to mess with that? My husband, too, is neurologically different. With bi-polar disorder, he’s faced a lot of outward pressure to conform to something he is not; and all that pressure seems to do is to make it more and more difficult for him to function. Why should anyone get to change him? Why can’t they just help him? And, now, our children, who are so different they need the label “autism” to make them understandable – a label full of fear and shame and voices calling for their imprisonment. Why should anyone get to mess with my kids’ minds? Why should anyone get to say they are anything less than children?
All these feelings were denied, put down, and explained away. I was wrong. I was simply wrong. The psychologists were right. I was wrong, and if I were fixed I would know I was wrong. If you’ve read this far, then I suspect you know how that feels. It’s not good. What was worse for me was how my words were twisted and distorted from what I meant. I ask for help and people talk cure. Words are my tools, as a writer, they’re my strength. But all my words were being shot back at me, deformed and malign.
In the blogging venue, I stumbled on Estee’s The Joy of Adam (the old one) and somehow I got to Zilari’s Processing in Parts (the blog is now gone and I miss her). There my feelings were validated. Even when we didn’t agree, they didn’t say I was wrong for feeling the way I did. And, they gave me a word: neurodiversity. I love words. I collect words. I understand words, with all their limitations and capacity for misstatement, I understand them. That word was quite possibly the greatest gift any “community” has ever given me. I could take all the pain, all the rejection, all the hurtful things, and I could dump them into that word. And I did. Suddenly, I was talking to people who didn’t shoot back cure when I said help, and it felt wonderful.
But, neurodiversity is more than that. Neurodiversity isn’t for any one type or group. Neurodiversity is for everyone. Neurodiversity is for Willy who is doing so well by societies standards despite with his autism. Neurodiversity is for Alex who still struggles so very much. Neurodiversity is for Ben who is his own little man. Neurodiversity is for Mark, who needs acceptance and accommodation because society sees him as a failure, and so he sees himself. Neurodiversity is for me, though my differences aren’t “disabling,” I’m still too different to succeed without the acknowledgement that being different is okay. And neurodiversity is for my neurotypical step-son, who has unique learning needs of his own, though he can get by in the status-quo society we live in.
To me, neurodiversity is about questioning what we know and what we think we know about how people think. It’s about discarding prejudices and assumptions about the existence of a “proper” or “appropriate” way to think. It’s about questioning the use of “normal” or “abnormal” to describe anyone’s thinking. To me, neurodiversity is about recognizing and appreciating that everyone has a “different” mind, one that is unique to them, and that nobody should be marginalized, disenfranchised, or violated because their mind doesn’t meet somebody else’s standards or expectations.
Freedom of thought is a fundamental right that nobody has the authority to take away. We can regulate and legislate against people’s actions. We can regulate and legislate against people’s words. We cannot regulate or legislate against people’s thoughts. Thoughts are our own. You don’t know someone else’s thoughts. You do not understand someone else’s mind. You can also perceive what goes on in someone else’s mind through their behavior. And your observation depends on what the other person communicates and what filters you put on that communication.
To deem someone’s thoughts or feelings as right or wrong is the ultimate act of hubris. To invade someone’s thoughts or feelings is the ultimate form of rape. To re-write someone’s thoughts or feelings to suit your own purposes is the ultimate form of murder.
Behaviors and communications are regulated and society chooses which to legislate against. We form rules, both legal and social, to shape what we consider appropriate. This is not going to change. What we can change is the limits and assumptions we place on those behaviors and communications. Being different and expressing oneself differently shouldn’t be against the rules.
Self-expression is a fundamental right secondary only to freedom of thought. There is one primary reason I know of to regulate or legislate against self-expression and that is immediate or imminent harm. The proverbial “fire” in the crowded building. The cliché “I’m going to kill you.” A picture of someone with a bullet through their head left in someone’s mailbox. A picture of a naked child in a suggestive position. These are threatening, harmful forms of self-expression. They either cause harm or suggest harm will be caused. A secondary reason to regulate or legislate against self-expression is those messages that manipulate for the purpose of or with the result of doing harm. Pornography, false advertising, perjury, and defamation fall under this category.
Silencing the dissenting voice because it doesn’t fit with others’ expectations should not ever be regulated or legislated against – not legally and not socially. Nobody should dictate how someone must communicate. Nobody should dictate what someone should communicate on their own behalf. Nobody should dictate when someone can communicate. Nobody should dictate why someone should communicate. Nobody should dictate if someone should be allowed to communicate. Anybody who does these things on behalf of neurodiversity, in my opinion, is distorting, deforming, and maligning the meaning of the word.
Neurodiversity is about recognizing and celebrating the individual in whatever shape, form, color, creed, brain, or label they come in. Anything less is not “diversity.” It’s certainly not neurodiversity.
***This post is inspired by the conversations taking place on The Standard Review, but the thoughts are my own. I do not assume to fully understand or in any way express the thoughts, values, or beliefs Ed has expressed. But I certainly do respect and appreciate them.***
Great post, Stephanie. I’m an adult recently diagnosed with Asperger’s, and my wife (an NT) and I have a site called Autistic in the District (I live in DC).
http://autisticinthedistrict.com/
I’m also contributing through the month of October at a site called Sentient Developments, where I’ve been examining concepts like neurodiversity and cognitive liberty. You can check out my most recent post here:
http://www.sentientdevelopments.com/2009/10/neuroplasticity-and-coordinated.html
I’d definitely be curious to hear what you think, as my own thinking on these matters continues to evolve.
Ed,
Unfortunately, the act of entrusting is built into most cultures — at least, all of the cultures I’ve explored. This act of entrusting involves holding certain sets of skills and experiences, including the attainment of knowledge, at a premium, which encourages society (i.e., the rest of us) to entrust our well-being into their care. I couldn’t tell you why we’re built this way or if it’s natural or merely a product of our culture, but we are built this way. From what I’ve seen and studied, this act of entrusting is universal; the difference lies in what we value as premium.
I don’t think there’s anything we can do to change this. Whether it’s a child entrusting their welfare to the parent, or a citizen entrusting their welfare to the state, or an employee entrusting their welfare to the boss, it happens on many different levels throughout our society and I do not see a way out of that. What I do see is a significant lack of wisdom and “common sense” in what skills and qualities we hold at a premium.
The attractive person, the smart person, the wealthy person are all entrusted. When these traits align with ambition, you generally get someone who is entrusted with a great deal of power. Empathy, compassion, and similar traits that encourage nurturing behavior is not held at a premium (though, oddly, the appearance of them is). It is my opinion that holding these traits at a premium, or the genuine application of these traits, would change the world for the better.
Consider this: Mothers are supposed to be the most familiar example of empathy, compassion, and nurturing. Yet, in the US, the mothers who are held up as examples are not those who express empathy, compassion, and nurturing, but those who are beautiful, wealthy, smart, and inevitably powerful. Somehow, in our effort to empower women, we de-feminized them (kind of like immasculate, but for women). To have power, women were expected to take on the traits generally attributed to men, leaving nobody to exercise the traits generally attributed to women, which are still de-valued.
I think this is the founding process that goes along with what you’re saying.
You said: “I want to encourage people to understand that the way (both subtly and overtly) we are censoring and regulating thoughts of people are devalued in our society.”
The challenge I see is that there is something of a catch-22. The way to get people to understand that they are devaluing others is to get them to actually listen to those “others.” The best way to get people to actually listen to those others is to use strategies and tactics they’re familiar with (i.e., the Rethinking Autism campaign) to get their attention. They won’t listen if you can’t get their attention; you can’t get their attention by holding up someone they don’t want to listen to. This, however, is a relatively short-term problem. Most adults have been trained to devalue others that don’t have the specific traits they personally hold at a premium. If society decides to train children with a different set of traits that are held at a premium, a wider set of traits, then more people can be heard on their own in the next generation. To make that change though, you have to get the current set of adults to acknowledge that the change is necessary and desireable, and empower the change to happen.
I see my work as getting adults to acknowledge that change is necessary and desireable, and then empowering the change.
Of course, the difficulty is to do this without pitying, shaming, or otherwise devaluing those people (including my own family) that I’m trying to help. A lot of people throughout the history of contempory culture, have used pity to shame those in power to help those who aren’t; but this creates shame for those who aren’t in power as well and further devalues those people who they’re trying to help. Pity is the wrong tool, because it’s a form of manipulation, but it’s an easy one. Influencing people to genuinely care is much more difficult, but also much more effective and appropriate.
Hello Casey,
Sorry about the approval thing. It took me a moment to figure out why you were in my e-mail but not on my blog!
I will definitely check out both sites and have you up on my links shortly! Thank you for calling my attention to your work.
Clearly this is far too much of an intellectual debate for me to contribute to, but what the heck.
For me it’s just an issue of variety, life would be so terribly dull if everyone were the same. Same i ness is just too predictable.
I agree, Maddy. Not about the “too intellectual” bit (don’t buy that for a second); but about the dullness of sameness.
I never saw why “normal” should be a goal. Normal is boring. It may be easier, but it’s definitely boring. Most of the normal people I know aren’t “normal” in any real sense of the word, and they’re not boring either.
Have you ever read Madeleine L’Engle’s “A Wrinkle in Time.” The “normal” she describes is down-right scary! It’s also evil.
“Behaviors and communications are regulated and society chooses which to legislate against. We form rules, both legal and social, to shape what we consider appropriate. This is not going to change. What we can change are the limits and assumptions we place on those behaviors and communications. Being different and expressing oneself differently shouldn’t be against the rules.”
I find it interesting when the ND crowd writes this and says “it’s ok if I do it b/c I have autism”. Yet if an NT person did it, it would be wrong. So, it’s OK for a person with autism to be physically and verbally abusive – as our culture says it is – but if an NT person behaved in that manner to a person with disabilities it would be considered abuse.
Can’t have it both ways.
My disgust with the ND movement on the Hub and ASAN comes from their assault on parents. When they say that those with Autistic Disorder “just need a few more supports”, IMO it’s like Mary Antionette saying “Let them eat cake” or simply… take that, shut up and be quiet we are speaking for you whether you like it or not.
Then they say “education is good”, but how can that be if you don’t want the person with autism to evolve and become more independant… is that not “curing” in a sense?? Is that not changing them??
Neurodiversity, integration of people of all diagnosis’ into society is the end goal. My youngest son is integrated in a Gr 3 class and thriving. His peers view him as “different” but at the same time as one of them. They even volunteered – both classes – to take turns being his playground friends since as a bolter he has to stay in the fenced section atleast another year…. They enjoy him, and he enjoys them. That is Neurodiversity. My goal is to turn that mostly Non-verbal Autistic Disorder 8yr old into an independant adult – to ASAN and the Hub this is wrong. To educate, to teach him to speak for himself, to wish for him the same lives they have (friends, family, communication, jobs) is being a horrible parent. That’s not Neurodiversity, that’s protectionism at the expense of the most vulnerable and it’s wrong.
I read your article and I’m appalled at the AMERICAN lies… “IN CANADA PEOPLE ARE FORCED TO INSTITUTIONALIZE THEIR CHILDREN” EXCUSE ME!!!!
Where did you get that LIE from???
Don’t tell me Michelle Dawson who knows NOTHING about Autism and disabilities in Canada.
I wrote a 27pg report on autism, ND, services etc in Canada for the Fed’s last April. All 4 parties. The current version is 120pgs long. I will be NOTING, your lie and forwarding it on.
farmwifetwo,
As I’ve said before and will undoubtedly say again, I don’t go on ASAN, because I cannot follow chat rooms. It’s like going into a crowded shopping mall the day after Thanksgiving — just way too much. So, I don’t know what ASAN advocates. However, ASAN does not “own” the neurodiversity movement.
“So, it’s OK for a person with autism to be physically and verbally abusive…”
I don’t know who you’re saying said that. I certainly did not. Yet, I’m part of the ND crowd.
“When they say that those with Autistic Disorder “just need a few more supports””
Again, I’m not familiar with that argument. The people I’ve talked with talk about acceptance and accommodation. Perhaps you dismiss that as “just a few more supports.” I don’t know.
“Then they say “education is good”, but how can that be if you don’t want the person with autism to evolve and become more independant…”
Who says they don’t want the person with autism to evolve and become more independent? Who? The only people I have heard that from are people who dismiss neurodiversity, not the advocates of neurodiversity. Now, if by “evolve and become more indpendent” you mean normalize, then that might be the distinction. An autistic person can gain skills, self-control, knowledge, and independence without becoming “normal.”
“…is that not “curing” in a sense?? Is that not changing them??”
Evolving and becoming independent is not a cure, because they’re still autistic. It’s not changing them, it’s helping them change themselves. The difference is in who has the control. Does the autistic person direct his or her own future? Or does someone else dictate what that future should be?
“Neurodiversity, integration of people of all diagnosis’ into society is the end goal.”
Integration, yes, but also self-determination and respect for the humanity of the individual. Someone living in a group home is considered “integrated” in society by society’s standards. Have you ever been to a group home? Have you ever spent time in one? I’ve worked in one, prior to my children’s diagnoses. My mom worked in several over a much longer period of time. They’re awful, and they’re nothing like the integration, dignity, self-determination, and respect I want for my children.
“His peers view him as “different” but at the same time as one of them.”
I’m glad. That’s important. And I do know how that feels.
“My goal is to turn that mostly Non-verbal Autistic Disorder 8yr old into an independant adult…”
While I am wary of the implications of the phrase “turn that…into”, otherwise I would say that’s a worthwhile goal. My goal is to help my children grow up to be healthy, happy, contributing members of society, living interdependently with people who genuine love and care about them. The distinction between independence and interdependence would require another post.
“…turn that…into”, however, is problematic. “That” refers to objects, not people. The statement implies “that mostly Non-verbal Autistic Disorder 8yr old” is not a person, but it will be a person when you’re done. If that is not what you mean, I strongly encourage you to use a different phrase to describe what you mean. If that is what you mean, that would explain why you give/get so much antagonism from the ND crowd.
“…to ASAN and the Hub this is wrong.”
Again, can’t say one way or the other about ASAN, but not everyone on the Hub would say that independence is wrong. That’s a generalization. If you’re getting that response consistently, it makes me wonder what you’re willing to do to your son to ensure this outcome. If you’re getting this response from a only a few, then it’s unfair to generalize that response to the Hub, ASAN, and other neurodiversity advocates.
“To educate, to teach him to speak for himself, to wish for him the same lives they have (friends, family, communication, jobs) is being a horrible parent.”
I don’t know who is saying this, but educating your son and teaching him to speak isn’t wrong and it certainly doesn’t make you a horrible parent.
I do not know you and have not interacted much with you, so please don’t take what I’ve said as a judgment against you. I’ve seen your comments elsewhere, and they generally tend to be abrasive. The generalizations you’ve made are unfair and do not properly reflect the wide variety of people who associate themselves with neurodiversity. They certainly do not reflect my own views. To me, these generalizations imply one of two things: you’re either prejudiced against everything about the neurodiversity movment and spread misinformation; or, you’ve had some very unfortunate interactions with people that reflect poorly on the neurodiversity movement as a whole. I do not presume to know which is true, or if the truth is something different entirely.
I’m certainly open to an honest dialogue, but please leave the generalizations behind.
farmwifetwo,
Okay, now you’ve made your distortions perfectly clear.
The article I wrote stated: “In some areas of the world, including Canada, families still face considerable pressure to imprison their children in institutions.” (third paragraph down, second-to-last sentence for those who want to check)
That is very different from: “IN CANADA PEOPLE ARE FORCED TO INSTITUTIONALIZE THEIR CHILDREN”
What is the purpose of making such a blatantly false accusation that is so easily disproven?
As to your question: “Where did you get that LIE from???”
It’s called “research.” It involves reading what people have actually written and listening to what they’re actually saying, and thus is not a lie.
- October 20, 2009 at 4:13 PM
Brains aren’t just for Zombies. « Sanabitur Anima Mea[...] Specific Learning Difficulties, SpLDs, Support, Tolerance, Truth, Vocation, Zombies This is [...]
Okay so what we have is:
High-functioning autistics like myself, who are not parents. We don’t have children, let alone low-functioning autistics who are a million miles from ourselves and our natures if we are NT parents.
Medium functioners, who don’t have the same capacity for perspective. This is a really debateable term, and offensive to some. But I am writing it to define the autistic who are locked in their own unique perspectives on the world, whereas there are others who are able to balance out their views with others, and enter into mutual dialogues. The aspies who don’t ‘get it’ about these issues, if you like?
Low-functioners. The Kanner-syndrome style people of all ages. Their main relationships are with parents. It is surely normal in our societies (I’m in Britain for example) that they usually need more support in different ways than they are getting. They usually have parents who identify as being NT.
Such parents fall into two camps. Those who may see neurodiversity in themselves, and know where the children interited it from, and those who have no idea what went wrong. Probably vaccines and metal as it CANNOT BE inherited, now can it? Also, how REVOLTING and PATHETIC our children are.
So the ND parents realize that support and understanding is essential, that they may come to know their children. The parents learn from the kids. But like the other camp of parents, they do anything to make their kids higher-functioners.
It is as simple as that. Both kinds of parents, want their kids to do better than them. To grow, prosper and live independent happy lives. But when they are low-functioners, biting, smearing and never leaving childhood no matter how old they get…
Thus, we have the many sides. We all need to accept that some parents, and people with ASD, will welcome biomedical interventions and cures. Some won’t. Some will do the opposite and embrace what is to be found in ND people.
In decades, we will have a good idea of just how effective these interventions are. But for now, this is what I think they really achieve.
They boost functionality, in order to aid the ASD person to do neurotypical behaviour better. Yes, to do it. Feelings, empathy, relating…all taught through therapies and facilitated inside them via biomedical treatments, diets etc.
The ASD people get better at the great act of neurotypicay.
But it is not a natural way for them to behave. Their natues are different. I could not hold down a job and relate well enough to be here now typing this, if it was not for doing NT really well. In our world, the real world we all speak of, do we have any choice but to embrace the neurotypical mindset and way of relating and behaving?
I am neurodiverse, as clearly were the author of this piece and her husband with his bipolarity. Indeed, this is one reason I am sure their family works so well. They really do have empathy. Neurodiverse empathy.
Opinions?
Paul Wady,
I am not entirely sure I understand what you’re saying, so please don’t get offended if I get it wrong (simply correct me).
It sounds like you’re saying biomedical and other interventions are valuable because they can make a neurologically atypical individual, such as someone with autism, behave in a neurologically typical manner. If that is what you’re saying, then I have a few objections. First, scientific evidence does not actually support that claim for many of the interventions parents try. Second, many of those interventions are (potentially or actually) harmful to the child. Thus, parents who are too overly desperate for a cure (i.e., something that will make their autistic child normal) are inflicting harm on their child for results they’re not going to get.
There are many sides to this issue. I have three children with autism, one is high-functioning, one is middle-functioning, and one is low-functioning (I don’t like those terms, but they have a certain degree of utility and I haven’t thought of something better). The one who is high-functioning got that way pretty much on his own–and he’s the one the doctors wanted to institutionalize. By “pretty much on his own,” I do not mean we did not provide him with therapy. We did. A lot of it. However, we also provided our other son (the low-functioning one) with the same therapies, by mostly the same providers, for the same amount of time, with the same tools. One got “better,” and the other didn’t. Was it the therapy or was it the child? Was it something we are completely unaware of?
There is no way to answer those questions in a scientifically valid manner.
And that’s the point…one parent claiming their biomedical intervention worked proves nothing; that child may have gotten “better” on his or her own. A scientific trial could, but they haven’t proved those interventions are successful across the population in the trials.
“In our world, the real world we all speak of, do we have any choice but to embrace the neurotypical mindset and way of relating and behaving?”
YES! We advocate for acceptance and accommodations. It takes time. And there are hardships along the way. But like any civil rights effort, there will be victories and those victories are worth pursuing. Things can change. Things should change. And, one way that they do change, is by not accepting things as they are.