I tend to tread very carefully in the general discourse about autism, because stereotypes and overgeneralizations abound. Given the wide nature of the autism spectrum, and the varied experiences of autistics and family members, general pronouncements about the nature of autism, as opposed to particular statements about personal autism experiences, generally leave me very frustrated and depressed.
In response to living in a world in which people seem to argue endlessly about which autism is the “real” autism, I’ve made a commitment to reading a wide range of personal narratives. It keeps me from feeling frustrated by the constant generalizing, and it helps me to keep a broad perspective about the wide variety of experience in the world of autism and disability. I am constantly reminded that my experience of autism and disability is not everyone’s experience of autism and disability.
Unfortunately, I recently stumbled across an article that generalizes so dramatically from the specific that it’s taken me over a week to collect myself and respond. The article was written by a woman in my community, Prudence Baird, who has a 16-year-old son with Asperger’s. My husband knows Ms. Baird and has spoken highly of her; I have never met her personally, but she and I are both involved with the local independent weekly. Eager to know more about her, I decided to go to a website for women writers that she helps to run, just to see what sorts of things she writes about.
That’s where I found her article, Naked Motherhood. It discusses autism in highly charged and pejorative terms. (It also discusses the story of Jeremy Fraser, a story about which I have very strong feelings. In the interest of limiting the length of this piece, I’m not going to address those feelings here.)
The terms that Ms. Baird uses to describe autism wouldn’t be a problem for me if she were speaking only to her own experience; as I see it, how she experiences her life and frames her responses to it aren’t open to argument or judgment. However, she takes a giant leap from her experience to very generalized statements about autism that I consider to be highly prejudicial and potentially very destructive.
I want to make it very clear from the outset that I do not believe that Ms. Baird had any ill intent. I do not think she meant to do harm, or that she harbors ill-will toward autistic people, or that she doesn’t see the positive aspects of autism. My purpose is to discuss the impact of her words on me, and to speak to the fact that her words have the potential to do harm, regardless of intent.
Ms. Baird begins her piece with a personal anecdote in which her son is woken from sleep and becomes irate and aggressive:
The popsicle stick-thin figure in rumpled pajamas who is my 16-year-old son stands in the darkened corridor in a fighter’s stance, small white hands clenched into fists. His face, lit by a shaft of light from the laundry room, is contorted with rage at being roused from his slumber—probably by me shutting the dryer door.
…
“Honey, you’re half asleep; go back to bed.” A light touch Casey’s shoulder. Mistake. A tiny fist flies—I duck; a torrent of abuse follows.
“Just shut-up!” yells older brother wrenching open his bedroom door. Then, “Mah-ahm, you don’t ever punish him; he thinks he can get away with this.”
Casey tries to scramble past me, “Fucker! I’ll kill you!” I seize a second jab in mid-air, gently guiding the wrist to Casey’s side as I hold him firmly by the elastic of his P.J. pants.
“It’s late,” I soothe, drawing closed my older son’s bedroom door. “Let’s get you a cup of warm milk.”
But there will be no soothing tonight. The door to Casey’s room slams, and for emphasis, opens and slams harder. I count with eyes closed. Finally, his bed
creaks.
I very much admire that Ms. Baird responds gently and mindfully to her son. As far as I’m concerned, that’s the right response. No argument there. However, I find myself apprehensive about the fact that she says nothing about what her autistic son is going through — why he’s upset at being awakened, why he has such difficulty self-regulating, why he is in so much pain — but concentrates exclusively on her experience and on the impact on her elder son:
I pivot, open the bedroom door of my eldest son who is sprawling on his bed wearing drawstring shorts and Borat T-shirt. His laptop is open to what I hope is homework. He glances at me from under brows stitched together with almost two decades of frustration; a look too jaded for his 18 years.
I well understand that siblings of autistic kids have their own issues, and I am not at all suggesting that Ms. Baird talk about only the subjective experience of her autistic child. I am asking only that everyone’s experience have a place in the narrative.
I worry when I read an obviously well-honed piece, written for public consumption, that does not include any words about the subjective experience of the autistic young man who is at the center of the discussion. Yes, autism can be hard on a family — and it’s also very hard on the person with the condition. I have read innumerable stories about the impact of autism on the family that fail to even guess at the experience of autistic people. Each time I do, I have the same uneasy feeling that I have reading Ms. Baird’s piece — that others will see autistic people merely as burdens and sources of pain, rather than as full-blooded human beings in need of the same empathy and respect as anyone else.
As an autistic person, my heart sinks when read these sorts of narratives. In a world in which the voices of autistic people are so relentlessly ignored, every iteration is another moment of invisibility.
After all, when people read narrative after narrative in which autistics are discussed only with reference to the difficulties of others, the impact on the ways in which people view and treat autistic people can be profound. Many of us have had the disheartening experience of disclosing our diagnoses, only to find that people immediately feel sorry for our family members for having to live with us — even when our family members take great delight in us and do not feel sorry for themselves in the least.
For example, when I was first diagnosed and going through a difficult time, one of my extended family members said to my husband, “Take care of yourself. Sometimes, you know, the caregiver suffers worse than the patient.” I was aghast. Fortunately, my husband clarified that he is not a caregiver, that he is not suffering, and that I am not a patient — that, in fact, he is my husband, I am his wife, and we are very happy together, just as we were before the diagnosis.
Such are the sources of my unease — an unease that turns to outright pain with the next sentence:
“This is autism,” I whisper. “Please. Punishing isn’t the answer.”
As I said earlier, I admire Ms. Baird’s approach to her son; that isn’t what pains me. And I am willing to guess that, in her household, “This is autism” is a shorthand for “This is your brother’s experience of autism.” Unfortunately, because the article was published on the Internet, many people will have no idea of what those words might mean in the context of her family. Many people will only see the words “This is autism” and believe that all autistic people melt down after being awakened, take a swing at family members, and threaten them with bodily harm.
The pain that I feel about it is particularly intense because the person who wrote those words lives in my community, where my Asperger’s is well-known. I wonder whether people who read these words will look at me now and think, “Well, she certainly holds it together well when she’s sitting on her porch, but she must be hell-on-wheels inside her house. The next time I stop by to admire her flowers, I’d better keep my distance and be careful not to set her off.”
They would have absolutely no reason to see me in that light. None at all. But I know that there are people who will see me through the lens of that distortion because, once upon a time, when the only thing I knew about autism were dreadful stereotypes, I thought that all autistic people were scary, too.
My concerns on this score only increase when Ms. Baird launches into some of the most fear-inducing words about autism that I have ever read:
Autism is where marriages and parenting partnerships come to die on the rocks of exhaustion, despair and blind self-interest. Autism wears down families, severs familial bonds with sharp and bitter recriminations, blame and guilt.
I absolutely cannot tolerate it when people indulge in these kinds of generalizations about a condition that exists on a very, very wide spectrum. I understand and have compassion for Ms. Baird’s experience, but it is her experience. Yes, it is an experience shared by other families, but it is by no means the universal experience of autism.
Like Ms. Baird’s son, I have Asperger’s. Have my marriage and my parenting partnership died “on the rocks of exhaustion, despair, and blind self-interest”? No. Has my autism severed “familial bonds”? No. Has my autism worn down my family with “recriminations, blame, and guilt”? No. Quite the contrary, in fact.
My neurotypical husband tells me early and often how happy he is that we found each other, and how much I help to ground him and to help him feel at home in the world. My neurotypical 18-year-old daughter tells me that I’m the best mother she could ever ask for, because I listen to her, give her unconditional support, and treat her with respect and kindness. My friends find me to be a trustworthy and sensitive person. Like most autistic people, I am neither aggressive nor violent; in fact, it gives me physical pain just to think about people being violent toward one another.
In my experience, we autistics are as different from one another as the members of any other group. I have worked with autistic teens who are quite aggressive; I have also worked with autistic teens who are among the most gentle, kind, and sensitive people I’ve ever met. And, from my association with autism parents, I know that autism families have experiences that are all over the map. I also know that, when they have similar experiences, they can respond to them in a very wide variety of ways.
Consider the following:
Many autism parents have not had their marriages and their families torn asunder. In fact, a 2010 study showed that, in the United States, the divorce rate for parents of autistic children is 36%, while the divorce rate for parents of typical children is 35%.
Many autism parents have found that raising their autistic children has strengthened their families, and has made them stronger and more nurturing people.
Many autism parents feel that if family members and friends distance themselves, it is not the fault of the autism. It is the fault of the people who refuse to make room in their lives and in their hearts for their children.
Many autism parents are living fulfilled lives with autistic children whom they enjoy. Are their lives difficult? Of course. Are they happy? Much of the time, yes.
In short: Many autism parents, after the initial shock of the diagnosis and the steep learning curve that it entails, do not experience autism as a disaster that has befallen them. Consider the words of K, the mother of a son with autism and apraxia, who blogs at Floortime Lite Mama:
I realized that the most important story that I will ever tell, is the one I tell myself.
About me and my life.
And that I am not just the central character of my life
But also the author
Its most important audience
And the narrator
And so the story I started to write, has become a story of gifts and gratitude and love
And not a story of loss and fear and guilt
And I see my child as different, even gifted
And I stopped seeing him as broken
I have come to see the difficulties of my life
But am still deeply aware of its essential sweetness
And I find that I am not living in a sad story
Or a make-the-most story
Or even a second-best story
And that the story that began so promisingly with “once upon a time” does end on a “happily ever after”
Because this is my story
And that is how I write.
These words reflect K’s experiences and how she has framed them. I am not at all suggesting that everyone has the same experiences, or that all autism experiences could, by any stretch of the imagination, be framed in this way. I am simply pointing out how varied our experiences and our responses are. If Ms. Baird had simply spoken in the first person, about her own experiences, I wouldn’t have a problem. Not at all. If she finds her life as an autism parent unbearably difficult, I respect the voice of her experience, and I respect her right to speak honestly about it.
But from my perspective, drawing conclusions about an entire group of people based on a subset of experience is not helpful, to say the least. It’s nothing less than stereotyping. And stereotyping of any group, whether based on race, class, religion, sexual orientation, or disability has serious consequences for the ways in which people are treated at school, at work, and in the community.
Unfortunately, the article continues on in the same vein. I hardly have the words to describe my response to the next paragraph:
Autism makes no sense; there are no navigational tools or comfortable rest stops along the path families must traverse on their way towards the inevitable—when they must blindly entrust their disabled loved ones to the care of others when they themselves are spent, the marrow of their bones turned to dust, and all their loving ministrations poured out onto the dry sand of life’s injustice. In the final analysis, the only real measure of the energy expended is the significant shortening of the mother’s lifespan and the distance the other family members put between themselves and the pain that just won’t go away.
It’s taken me awhile to untangle all the reasons that I find these words so deeply offensive. I will begin by pointing out the obvious fact that autism does not exist separately from human beings. So when people talk about autism in such pejorative terms, they are not talking about a disembodied abstraction.
I am not arguing whether autism is intrinsic to the person or a condition that can be separated from the person. I’m not going to generalize about the lives of millions of people. Arguments on that point tend to be fruitless, because how people render identity is very complex and very personal. I only know how it is for me — I consider autism intrinsic to who I am — but how it is for me is not the issue here.
What I want to point out is the simple fact that autism is always manifested by human beings. In the final analysis, when people talk about their experience of autism, they are talking about their experience of people with autism. And when they make sweeping, generalized, unsubstantiated claims that autism significantly shortens the lifespans of parents and tears families apart, autistic people become stigmatized by association.
Please understand: I’ve got a condition that is already poorly understand and highly stigmatized, and sometimes, all I really want in life is for the rhetoric to become more nuanced, not more strident. All I really want is for people to be able to see me as a human being, without stereotypes clouding their judgment. Because as difficult as it is to have autism, it’s even more difficult to go out into my community as an openly autistic person with this sort of language flying around. And for a great many people I know, it makes it impossible to come out of the closet at all.
In the past, I have found myself very isolated and lonely because I’ve been afraid that other people will believe the stereotypes about autistic people. It’s been terribly painful to go out into the world being my friendly self, eager to help and to be part of my community, only to feel the energy shift in very, very clear ways when I disclose my autism.
Does it happen all the time? Thank God, it doesn’t. I have found many people who take me as I am and do not rely on stereotypes. Sometimes, they even ask me about my experience of autism and how it manifests in me. For my recent job interview, the parents of the little guy for whom I am now a caregiver did just that. But when I applied for the position and disclosed my Asperger’s, I was afraid that the stereotypes would precede me and that I wouldn’t even be considered for the job.
I shouldn’t have to live with that kind of fear. No one should. And one of the ways to create a world in which no autistic person needs to feel that fear is to stop engaging in generalized pronouncements, for good or for ill, about what autism is.
I honor people for whom autism is a gift, and I feel tremendous pain for people for whom it is a curse. But a great many of us tread the vast grey area between the two poles. All across the spectrum of experience, we all need to be heard.
© 2011 by Rachel Cohen-Rottenberg
Hooray, Rachel. Thanks for taking the time and energy to tease apart your thoughts and feelings and then to share them with all of us. For me, each of your posts is a gift of greater understanding.
Thank you, Jan! I appreciate your kind words.
Well and poignantly said, Rachel.
Thanks, Kim. You’ve been a big influence on my thinking on the issue.
You’re right, Rachel. You can’t overgeneralise autism and certainly not in any negative sense. I even felt a bit insulted myself by Ms. Baird’s writing. What people have to understand is that whether or not you’re autistic you will have your own sets of stengths and weaknesses. My aunt likes to say that it would be nice if everyone understood that everyone, autistic or not, is odd in their own way.
Amen to that. Really, that’s the heart of every social justice movement–we are people first and foremost. Long before I was diagnosed I lived with the fear that there was something ‘wrong’ with me. It took me a long time to become comfortable with myself (after the initial shock, the diagnosis helped with that), and there are still areas of my life where my past experiences win out over my current desires.
Thanks, JC. I’m sure that Ms. Baird is aware of the complexity of the situation, but her words don’t reflect that, and it’s the impact of her words that concerns me here.
A beautifully-written, balanced article showing a deft touch in attacking Ms. Baird’s position in /her/ writing but not the woman herself. I agree with you that autism is such a broad term, encompassing a spectrum of cognitive and behavioural traits, that to generalise is not merely misleading but potentially dangerous. I feel it is important that the word does not attract negative connotations because that will cause harm to those diagnosed with the condition.
I wondered on reading Naked Motherhood and the comments following it whether I had missed something in the article because the tone of the comments was so at odds with my own reaction. I read her article as essentially saying that having a child with autism will make your life a misery and destroy your family, using the Jeremy Fraser case to support her argument. This was emphatically *not* the case in my family as I grew up in a very stable and supportive environment despite my (undiagnosed at the time) condition.
Thank you, Rachel, for taking the time to explain that families’ experiences with autism form as wide a spectrum as the condition itself.
Thank you so much for your insight.
I’m so glad that you have such a supportive family; my original family was not supportive, but my present family is fantastic. Just goes to show how varied our experiences with family can be — even for one person over the course of a lifetime.
An absolutely brilliant and clearly insightful explanation of the dangers of writing about autism from the position of external observer (in this case, the mother of an autistic son). Generalization and stereotyping are the great sins of our age because we take neither the time nor make the effort to understand the inner world of the challenged child or adult. Your blog has allowed me a window into the “inside” of autism, a place I have never experienced. The inner world of experience of a person can make his or her outer world something we can understand and embrace. I thank you for this great insight.
Phil, your support is always so helpful and affirming. So glad we stumbled onto each other.
Generalizations are the slipperiest of slopes. I understand (intellectually) the human impulse for shortcuts and for a universalization of experience. The problem is that the shortcut so often provides an incorrect conclusion, not that the average person admits it. But who cares when you’re not the person affected adversely by the slur, the stereotype or the broad brush? I do it less and less, but find when I speak out against the generalization, I’m told how (statistically?) irrelevant my exception is, how I’m just being difficult, and that, you knew what I meant! Actually, sometimes I do, but more often I just wish you’d all speak from your own experience, and admit that your truth is NOT universal. Being the squeaky wheel is exhausting.
Thanks Rachel. (for your squeaking so eloquently)
LOL! Can one squeak eloquently? I’d never considered the possibility before!
Oh, man, I just went and made the mistake of reading the comments to the “Naked Motherhood” column.
Thanks for being so articulate on this, Rachel, because I’m not sure I can be right now…I’ll try to get it together enough to join Phil in posting a comment later today.
Yes, I had a rather visceral reaction to the comments as well; I usually have a strong reaction when I register a problem that no one else is speaking to, particularly when it involves overgeneralization. But I think that, unless you’re in the group being generalized about, it’s very difficult to realize the impact these things can have.
Chavisory, I just read what you wrote in response to those comments on there. Beautifully said.
Rachel, by the time I got halfway through this post, my heartbeat had quickened and I began to feel a cold shiver of unease and indignation. Mrs. B sounds to me a little like someone I know. I feel sorry that she has to experience Autism that way, there are certainly downsides to our manifested triggers, but I feel indignant that, as you put it so clearly, her words are painting such a dire, negative picture. Where is the balance? … I am now so put off that I am unable to click on the link to read Mrs. B’s blog myself. I don’t wish to be triggered by the kind of negativism that the few quotes you’ve placed here reek of. But thanks, Rachel, for sharing.
SK, the article had that impact on me as well. I had a very intense response that made it difficult for me to even go back to it, re-read, and articulate my responses to specific passages. That’s why it took me over a week to write the post, and even now, I have difficulty reading the passages I cite. In fact, I was reading my post to my husband last night, and I had to skip over some of the quoted excerpts because they gave me so much pain.
Okay, I just went and left my own comment, which turned more essay-length.
Phil, thanks for sticking up for us. You’re one of my parenting role models.
First of all, Rachel, thank you for spelling my name right.
Second of all, as a writer, I give voice to many aspects of myself. Perhaps before so roundly condemning my blog, you could have reached a little further and read some of my other writings on autism, disability and caregiving. There are many available at http://www.fiftyisthenew.com.
The blog in question, Naked Motherhood, is a snapshot of a late night encounter–as in one encounter–that occurred outside my two sons’ bedrooms. It was not meant to be a treatise on autism or how wonderful my son with autism is, how lucky we are to have him in our lives, etc. This was his brother’s turn–as seen through my eyes–and my turn. A local news item caught my eye and I pegged my lament to that event. And I stand by my words and speak them for all the mothers who feel ashamed to give them voice–even if that opens me up to criticism.
We are very proud of our son, Casey. One of the reasons he is so terrific is that he is a maturing self-advocate. We reward him and encourage him in this endeavor. I have personally sued the second largest school district in the nation in order to have my son included in a mainstream classroom. I have gritted my teeth and dug in with mama bear ferocity when he is rejected from being on Little League teams, from participating in gymnastics classes and even from going on ordinary field trips. He is also able to see how he impacts our family because we have worked with him to recognize when he has gone beyond the bounds of what is expected. We do this so that, when we are gone, he will be able to monitor himself and lead a productive and fulfilling life. He knows he is valued and he feels that his life is a success.
I think that you are taking this personally. It is not meant to hurt you or anyone else–especially those in the developmentally disabled world. In the midst of your self-advocacy, which is admirable, there must be room to empathize with others’ experiences. Otherwise, the conversation is one-sided, when in truth, autism impacts every single person in a community. Their experiences are worth hearing, too.
http://www.fiftyisthenew.com/2010/05/05/the-hourglass/
http://www.fiftyisthenew.com/2009/04/23/the-dawn-of-neurodiversity/
I hope you read these above blogs and get a more complete picture of my writing.
Prudence Baird
Mrs. Baird,
I think it’s interesting that you’re choosing to lecture Rachel about empathizing with others, without expressing empathy for her.
First of all, I found the following statements in the above piece.
“I very much admire that Ms. Baird responds gently and mindfully to her son.”
“I well understand that siblings of autistic kids have their own issues, and I am not at all suggesting that Ms. Baird talk about only the subjective experience of her autistic child.”
“As I said earlier, I admire Ms. Baird’s approach to her son; that isn’t what pains me. And I am willing to guess that, in her household, “This is autism” is a shorthand for “This is your brother’s experience of autism.””
“I am not at all suggesting that everyone has the same experiences, or that all autism experiences could, by any stretch of the imagination, be framed in this way. I am simply pointing out how varied our experiences and our responses are. If Ms. Baird had simply spoken in the first person, about her own experiences, I wouldn’t have a problem. Not at all. If she finds her life as an autism parent unbearably difficult, I respect the voice of her experience, and I respect her right to speak honestly about it.”
“I honor people for whom autism is a gift, and I feel tremendous pain for people for whom it is a curse. But a great many of us tread the vast grey area between the two poles. All across the spectrum of experience, we all need to be heard.”
Now, I know I’m just an Aspie, but all of those statements seem empathetic to me. They seem to account for the fact that there are many points of view, and stress that all should be heard. In fact, after re-reading this article, I wonder if you read it at all. Surely if you had, this statement, “…there must be room to empathize with others’ experiences. Otherwise, the conversation is one-sided…,” would have seemed as obviously out of place to you as it does to me.
Your experience is yours, and no one is trying to invalidate it. Rachel’s point, as I understand it, is that it would have been preferable if you had verbalized your experience as YOUR experience, and not as an authoritative statement about “what autism is”.
For the record, when you make sweeping generalizations like “Autism is where marriages and parenting partnerships come to die…”, you are, in fact, making an authoritative statement about “what autism is” whether that was your intention or not.
Prudence,
I’m not going to allow you to deflect the issues I’ve raised by moving the conversation to other articles you’ve written. The Naked Motherhood piece has gone out onto the Internet, has a life of its own, and will undoubtedly be read by people who never have and who never will read anything else you’ve written.
Every word you write has an impact. Every word holds the potential for good or harm. As a writer, you must know that.
Of course, I have no problem whatsoever with your giving voice to your own experience, as I’ve made abundantly clear in my post. I want to hear about the experiences of everyone in the autism community — the good, the bad, and the ugly — and there is absolutely nothing in the piece that implies otherwise. My issue with your article isn’t that you speak of your own experience without shame or apology. After all, why should you feel either ashamed or apologetic? More power to you. My issue is that, instead of keeping to your own experience, you make a huge leap into generalizing about autism in a multitude of offensive and stigmatizing ways. I couldn’t have been clearer about that in my post, so I really shouldn’t have to reiterate it here.
Do you really think that, because you’ve written several pieces on other aspects of autism, writing a piece that talks about autism with recourse to the worse stereotypes out there won’t have an impact all its own? If we were talking about race, the answer would be no; a person can’t write five pieces about the great civil rights work they do, write an article stereotyping people of color in the most negative ways, and then say, “But look at all the other things I’ve written.” They’d get called on it, big time, in far less polite terms than I’ve used here.
And yet, in response, all you can say is that I appear to be taking this personally. In the face of a racial stereotype, would you say to a person of color, “You seem to be taking this personally”? Of course not.
As is clear from my piece, I empathize with your experience, and with both of your sons’ experiences. My entire piece is about the fact that we all need to be heard and respected — parents, autistics, siblings, extended family members, everyone — and that throwing around huge generalizations only gets in the way. So I find the implication that I’m not willing to reach across the boundary of my own experience, see things from all perspectives, and empathize with experiences that are not mine a rather perplexing response to a piece that is all about hearing and respecting everyone.
Can you express some empathy for me, or speak to my concerns, or acknowledge the potential damage these kinds of words do? My piece was a veritable plea for others to empathize with the ways in which autistic people suffer from words like the ones you used in your piece. And yet, you’ve refused to speak to any of it.
Hi Rachel,
You ask that I express some sympathy for you? You are the one who, in a small community of 12,000 souls, took me to task in a very public manner. You state that you won’t “allow” me to move the discourse to other blogs of mine that very clearly put forth the view you complain was lacking in Naked Motherhood — a sympathetic experience of autism from the autistic person’s point of view. This edict gives you both the automatic moral high ground and double indemnity as a victim. Well done. This is called “controlling the narrative” and I must object as it is unfair and unfounded.
You are welcome to continue reading http://www.fiftyisthenew.com. I only ask that, in the future, you please leave my family out of your musings. It is unexpected behavior on the part of members in a community as small as ours to feud publicly and, especially, to pull children into that feud. The stories I write are my stories, not yours. This blog was not about you or other people with autism. It was about despair, about withholding judgment of those whose wretchedness we cannot possibly imagine. It was about our own despair at what we cannot understand or control. My son’s disability was ancillary to that story line.
Upon occasion, I do celebrate my family’s many special qualities and they are central to the story. If you would let yourself, I’m sure you would enjoy this one and so would your many readers:
http://www.fiftyisthenew.com/2008/09/25/prelude-to-an-empty-nest/
PB
Prudence, by concentrating on Naked Motherhood, I’m focusing the discussion on my blog. The discussion is about that piece and its implications, not about any other piece. I’ve spent a great many words explaining that, and I’ve spent a great many words explaining why I’m focusing on it, and I’ve spent a great many words asking you to respond directly to the issues I’ve raised. You appear to have no interest in doing so. You just keep deflecting the discussion.
Your own blog is yours, yes, and if you don’t want me to post there, I have no problem with that. But once you put a piece on the Internet, in the public arena, for public consumption, anyone can comment upon it, disagree with it, and protest the things you have written. If you write personal things about your family online, as a jumping off point to dealing with larger issues, you can’t accuse people of bringing your children into it when they protest the ways in which you have dealt with those larger issues — unless, of course, they say unkind things about your children, which I have not. I’m not responsible for the fact that you chose to speak about your family in an online article in which you said incredibly stigmatizing things about autism.
I have cast no aspersions on your family — none — and I never would. I have taken tremendous care to to honor your experience and your right to speak to it. I have criticized what you wrote — not your children, not your parenting, and not you. There is a world of difference. You made pejorative generalizations about autism, and I was well within my rights to protest them.
If you’d like to speak to the specific issues I’ve raised — or to the thoughts shared by other commenters on this thread — please feel free to do so.
Rachel’s “controlling the narrative?” On the whole great big internet? I doubt it….
chavisory, I don’t think that’s what Prudence meant. I think she meant that it was unfair that I not bring her other articles into the discussion. In my response to Prudence, I explained my reasoning at some length, so I won’t repeat myself here.
Is not addressing her other pieces controlling the narrative? No. It’s just staying on point. The point was to discuss the language of her piece and its impact.
Ah ha–literal thinking on my part there…
Yup. It happens.
Rachel, you have proven yourself to have more empathy than anyone else I have ever come across before. It is incredibly beautiful to witness. I consider myself a huge believer in trying to see things from another’s point of view, but I have had a hard time seeing where Ms. Prudence Baird is coming from here… I cannot put myself in her shoes. I find it very hard to be empathetic. And yet even when she becomes confrontational, you remain able to “get” that she’s a person with her own experience and you try to see where she is coming from.
Thank you so much for being you! You are impacting my life right now- just reading your words makes me want to be a kinder, better person.
Sunshine, I so much appreciate your kind words. Thank you.
Just an observation, Prudence: We do put our own families up in the spotlight ourselves by writing about them freely and about our frustrations with them. This is a deliberate decision on our part and we cannot expect other people not to notice what we say when we say it very openly and publicly. I feel it is in this same spirit that Rachel has responded, not to attack your family in a public manner (she has stated this very clearly in her post) but just to respond to something you said very publicly yourself about your experience with your family in a public manner. If we wish people not to gaze upon our family members, we should protect them with anonymity and not place them out in plain view to all who pass by to gawk at. If this is a big issue, then using a pseudonym may help, perhaps?
A reminder:
Emotions are running pretty high here, so in order for everyone to feel safe, I’d like to remind all commenters to do the following:
Stay on point
Respond with civility
Criticize ideas, not people
I reserve the right to edit or delete any comments that go outside of these guidelines.
Thank you for your help in keeping this blog a safe place.
Rachel,
I am glad you remind all of us to be careful of the words we use on the Internet and how they might be perceived by others. I agree that disabilities should receive the same level of respect as race in the public forum.
Thank you, Sue. As you know, I always value your words.
I have read and re-read Ms. Baird’s post on Naked Motherhood…. In the context of the post, one is lead to believe that autism always brings one face to face “with the worst traits of humanity”, “autism…is where marriages die.” And on and on. The author portrays autism using the worst of stereotyping.
Please, Ms. Baird, do not paint autism and its effects in broad strokes. Stereotyping breeds vastly erroneous and frankly harmful views of life.
Loved your post so much
Thanks so much for quoting me – its such a great honor
The autism stereotypes worry me so much too
In this short life in autism ( for its been only 4 years ) – I have also seen so many things blamed on autism –
and co-diagnosis ignored
There is a wideness of the spectrum as it exists today ( which I believe should have multiple sub different diagnoses )
ANd there is the great narrowing of the autism spectrum – which is the stereotypes
K, thank you so much. I read your words aloud to my husband last night, and I started to cry before I got to the end. Those words get me every single time. Beautiful, beautiful stuff.
I cannot imagine a lovelier compliment dear Rachel. Thank you so much
K, you always make my day.
Ms. Baird,
I want to address my comment to you. In the interest of full disclosure, I also want to tell you that I am a friend of Rachel’s and, like her, an autistic adult who didn’t know she was autistic until mid-life. I know this might feel to you like a pile-on, but I hope that, instead, you can see it as I intend it: a civil discussion, a response to the words in your article, “Naked Motherhood”, and an attempt to share my feelings about those words. I try to emulate the example of Rachel, who is more civil and fair in her responses, even when she is hurt by words, than just about anyone I know.
You wrote, in reply to Rachel’s post: “I think that you are taking this personally. It is not meant to hurt you or anyone else–especially those in the developmentally disabled world.” I fully believe that you did not *intend* to hurt anyone but Ms. Baird, you did. That doesn’t make you bad, or reprehensible, or anything close to that–it makes you a human being who expressed herself in a public forum with words that, to many of us, contained a stigmatized view that we find offensive. You probably didn’t realize you were perpetuating negative stereotypes and feeding a pervasive stigma…but, you were. I, Rachel, others: we’re trying to shine a light on those words, share our experience, in the hopes that you and others will learn and, hopefully, avoid those types of negative stereotypes in the future.
Those words *did* hurt. They hurt me on a personal level, but also, they *do* hurt, and they *will* hurt, the group of people of which I’m a part, Rachel is a part, and your son is a part. Every broad, dehumanizing generalization of “autism” as a tragic disease that steals the humanity of the autistic, as a drain on family members and on society, makes it that much harder for me to be an equal member of that society. Rachel expressed this well in her post when she wrote:
“Please understand: I’ve got a condition that is already poorly understand and highly stigmatized, and sometimes, all I really want in life is for the rhetoric to become more nuanced, not more strident. All I really want is for people to be able to see me as a human being, without stereotypes clouding their judgment. Because as difficult as it is to have autism, it’s even more difficult to go out into my community as an openly autistic person with this sort of language flying around. And for a great many people I know, it makes it impossible to come out of the closet at all.”
Maybe an example will help illustrate my point. I grew up Jewish in a small town with very few Jews. Now, I’ve only known I was autistic for a few years, but I’ve known I was Jewish for as long as I’ve known I’m me. My autism and my Judaism can affect my encounters with people in several similar ways; they’re both differences of culture and, in many ways, of thinking and perception, but those differences are usually invisible to strangers. Also, many people have very limited personal knowledge of either autistics or Jews–they’re just “The “Other” who exist “somewhere”–but have picked up and absorbed the very negative stereotypes that are prevalent in the culture. When I was young, where I grew up, the phrase “to Jew somebody down” was commonplace. I heard it frequently. It meant to bargain aggressively with someone to get a better price. Most people who used the phrase didn’t mean anything offensive by it, and certainly had no intention to be anti-Semitic. Beginning in my teens, I think, whenever I heard that phrase, I explained to the person that it was *hurtful*–hurtful to me because I was Jewish, hurtful because it promulgated the notion that Jews were stingy, money-grubbing, unethical, and untrustworthy. Some people heard me, realized what I was saying, realized that they didn’t want to use such offensive speech, and never used such words again. Others accused me of being “too sensitive” and didn’t change a thing.
Do you see the parallel to *your* words? In which way will *you* respond?
Rina, this is a beautiful, beautiful piece of writing. All very well said.
Of course, I’ve re-read it several times, and I’m cringing at a couple of redundancies: “emulate the example of”. Oy!
Also, I noticed your small edit, and I’m fine with it. Actually, I think it was a wise choice to make that cut.
Did any of you see the word “can” in the sentence “Autism can be a labyrinth of unspeakable horrors…” Can is a conditional word, with all that entails.
The labyrinth of horrors referred to in the piece is the many ways families, including the ASD individual, are ostracized by society at large; how they are misunderstood. How they cannot get the help they need when they need it. How things can so quickly spiral out of control when you have no money, no support and the caregiver’s own health is imperiled.
Marriages can fall apart (there’s that word again!) over the stress of having to care give–especially when manifold expectations also aren’t met. Most of these expectations have to do with the partnering caregivers, not the DD child. The fact that raising a DD child can cause stress in a partnership isn’t an indictment of the DD individual. Far from it. It speaks more to the labyrinth again–the lack of role models, the lack of resources, the lack of education and the stigma that goes hand-in-hand with any kind of diagnosis that identifies us as outstanding–as in standing outside–the mainstream of life.
The piece I wrote (and this is the last time I’ll explain this, (hoping that you who are so enraged may finally be able to grasp this) is about a particular case, that of Kristen LaBrie, who was suffering a great deal in ways I won’t go into here. Sadly, the child in her care fell ill for the second time with cancer. Giving him his chemo made him horribly ill and she withheld the medicine that she felt was killing him. He died. He had autism. She was clinically depressed. She couldn’t get the help she needed and made bad decisions. She was in the labyrinth. Knowing how hard it can be to care give a dying person and care for a DD child, I posited that a jail term of ten years or more was over-the-top punishment for someone who suffered so greatly.
You may disagree with this, but to take the piece to be some kind of global indictment of autism is, well, crazy. One commenter on my blog went so far as to suggest that my kind of reasoning is why people kill their disabled children. Huh? Last time I read the paper, it’s the “neurotypical” parents who kill “neurotypical” children…think Susan Smith, Casey Anthony. Kristen LaBrie was an isolated case…and even after all the battering I’ve received, I still don’t think she “killed” Jeremy, but rather let things get so out of hand that she couldn’t see straight.
I find it rather amusing, Rachel, that you now call for temperance in the comments when you yourself are the one who blew this out of proportion crossing so many boundaries that I’ve now lost count. If I had known that I was going to be excoriated by the ASD police living down the street from me for writing my piece–and publishing it–would I have still done so? I don’t think so. And not because of any of the tongue-lashings I’ve received here.
Rather, life is too short, Rachel. It really is. And your staining my name with the idea that my writing is racist, that I am part of the problem with why the world is such a cruel place to those of us who have differences, is itself cruel and vile. Your indictment of me, and your inability to realize such simple facts that this piece was not about you sitting on your front porch and others thinking you’re difficult to live with, confounds me.
As I mentioned, our community–both the ASD community and here in Vermont–is small. It is tight-knit. It is something I cherish greatly. For the life of me, I cannot imagine why you didn’t pick up the phone and say, “Let’s meet, let’s talk this over. I’m hurt.”
Imagine, if you will, that you had done that. Imagine what a rich conversation we would have had, as I explained myself to you and vice versa. Imagine if you had heard that the blog I wrote was once much longer, which it was, and actually included a great deal more of what you complain that it is missing. Again, which is true. Imagine then if I told you that my blogs are limited in terms of space. I cannot exceed a certain word count.
Imagine if you had chosen differently. Imagine if Kristen LaBrie had chosen differently. Instead of sitting here at the computer trying to explain myself to backs that are already turned away from me, I would be out on the Maine beach, enjoying the beautiful summer with my wonderful son, who is teaching me, among other things, Chinese.
Rachel, you chose to go on the offensive. You painted me with a brush of racism. You have stained my name and your finger-pointing may prevent many who would benefit from meeting and enjoying my company–and vice versa–from ever doing so. That is a tragedy you cannot erase or explain away with one of your long-winded “I’m only trying to make sure everyone is included.” Now, I am the excluded one. And, I’m new here. Please remember that. The comments received here are hurtful and they are meant to be.
This is really all I have to say to you. And your supporters, many of whom I feel are misled by your blog. Again, if anyone feels they didn’t get the whole story, please look up this to see how very much I cherish the differences that my son and others with ASD bring to this world:
http://www.fiftyisthenew.com/2008/09/25/prelude-to-an-empty-nest/
I send you all best wishes for a more peaceful world–one in which we can all have our say and hear each other’s hearts.
PB
Oh, Prudence, for goodness’ sake. I didn’t accuse you of racism. I made an analogy to show that if you had said the same things about black people, without the least bit of ill intent, you’d expect people to get upset. But when you say the same things about autistic people without ill intent…What? Autistic people are not supposed to protest?
And yes, you did say that autism *can* be a labyrinth of unspeakable horrors, which is why, if you’ll notice, I did not critique that statement. If you had said “Autism can be” throughout the piece, we wouldn’t be having this conversation at all. But immediately after that sentence, the word “can” dropped out, over and over and over. Your next words were “Autism is where marriages and parenting partnerships come to die on the rocks of exhaustion, despair and blind self-interest. Autism wears down families, severs familial bonds with sharp and bitter recriminations, blame and guilt.” Can you see the difference here? Can you see the giant leap you’ve made from the specific to the general? Can you see where that might engender prejudice against autistic people, despite your best intentions?
For the umpteenth time, I have simply critiqued your writing and discussed its unintentionally damaging implications — in much the same way that Curtiss Reed took Brian Dubie to task for using the phrase “Pure Vermont” in his campaign (http://vtdigger.org/2010/10/20/reed-pure-vermont-is-pure-invalidation/). He did not say that Brian Dubie was a racist, any more than I have said that you are a bigot. He said that the phrase was insulting, insensitive, and damaging to people of color. I have done *exactly* the same thing here regarding the impact of your words on autistic people. And just as Curtiss was excoriated for saying things he never said or even implied (that Jim Dubie was a racist), so you’ve excoriated me for saying things I’ve never said or even implied.
I have cast no aspersions on you or on your intent. I have simply responded to a piece you wrote for public consumption by describing my own response to it and my concerns about it. I critiqued your writing and discussed how much power language has, for good and for ill. I talked about how your words affected me and their potential effect on others. That is my right — to speak about my own feelings, my own experience, and my own perspective in response to writing that is out in the public view. If you wish to continually confuse the issue by saying things like “My piece was not about you sitting on your front porch,” there’s really not much I can say to that because, obviously, I never said that your piece was about me sitting on my front porch. I spoke to the unintended impact of your words and my fears about how people might now view me on my front porch. Surely, you understand the difference.
When a piece that I consider this problematic is out in the public view, I feel the need to counter it in the public view. Otherwise, it’s just out there, uncontested. If you want to write proudly, openly, and honesty, without apology, on your blog, then you’ve got to be prepared for people to critique what you write, to get upset with the things you say, and to say so publicly. That’s the deal. You can’t just expect people to praise what you write or to be quiet. You have the right to freedom of expression — and so does everyone else. If you’re not prepared for people to be critical and upset with the things you say, then don’t put them out there for everyone to see.
I’ve given you a lot of leeway, in terms of tone and content, in the comments here. You’ve said things in your comments that I would not let any of my regular readers get by with; but since I critiqued your piece, I figured that I ought to give you the space to respond. At this point, I don’t think that our back-and-forth is serving any useful purpose, so I’m not going to let through any further comments from you.
Like they say: “When you’ve met one person with autism, you’ve met ONE person with autism.”
My parents got divorced for reasons having nothing to do with me, and to their credit they both made it very clear. My brother was always patient and protective of me. As for my mother, my Aspergers gave her a new lease on life. She went from being an unfulfilled housewife, to a special ed teacher with a masters, and finally to a clinical psychologist with a PhD- because my condition challenged and inspired her. Despite the difficulties, I don’t me and my mom would have it any other way.
I hear you, John. My diagnosis has strengthened my partnership with my husband and created even greater understanding between my daughter and me. I know that not everyone has experiences like ours, and that’s why it’s so important to listen to all of our stories.
Wow. I have to say I was able to appreciate both perspectives being argued here, and didnt feel any need to contribute to the discussion until now. Points about how mindful it pays to be when writing about the topic of Autism have already been made beautifully so I’ll not add to those here. What I do see however is some unnecessarily defensive remarks. Prudence, you say Rachel is taking your post too personally, but I see you doing precisely the same thing. Can’t you see that too? If you feel entitled to be defensive, then why shouldn’t Rachel? Perhaps I am wrong but it appears you are more concerned with justification than understanding. This is natural I suppose. BUt maybe if you took some time to reflect and empathise, you might see you were not being personally attacked. I have to say I find your writing style to be beautiful, and powerful. I think it’s a shame that in this forum there was a missed opportunity for yourself and Rachel to engage in a more meaningful discussion about how we shape personal narratives, and the responsibilities or otherwise, that it carries.
I see two incredibly intelligent and gifted women who on this occasion may not appear to agree. But if acrimony were put aside I bet you would both reach a place of mutual understanding, and perhaps even something more?
Sharon, I so much appreciate your thoughtful words. As usual, you are very fair.
As a mom of an child on the Spectrum and with two other children to boot, I can see both sides to this. As a mom, I can see the angst and anguish of my son and his sisters and what they go through. But that’s life. It’s what they’ve been dealt and what I’ve been given.
I however don’t see the labyrinth of unspeakable horrors. I see three beautiful children all of which have their own quirks. I’m coming from a different perspective here. And its this: Maybe when you loose the other son, you suddenly thank God, or whomever, for what you have. I don’t know. I do know it makes what really matters in life crystalline. Pure.
I don’t see my son’s Autism as a burden. I see it as integral part of who he is. Part of a child I’d sail the ends of the earth and back for. Without thinking twice. Just as I’d do for my other two. I just don’t see Autism as negative. I see it as an integral part of who he is and who he is to become. Take that away and I’ve lost part of him. And I like him just how he is.
So by making a sweeping statement about Autism, no matter what the intent, that changes things for me. It places a lot of people in a generalization and that starts a slippery slope. One that makes me uncomfortable. I don’t see my son in that generalization nor do I see anyone else on the Spectrum placed in that light as well.
By making a statement about Autism is by default is making a statement about my son and others.
Everyone has their own opinions and experiences and I guess that’s my two cents.
Thank you for your comments, Lizbeth.
I can’t imagine what it’s like to go through the loss of a child; I’m so glad that you’ve got three beautiful kids who are still here, and that you enjoy them so much (even when they make you a little nuts….) Hugs to you (((()))))
Rachel,
You wrote: “I well understand that siblings of autistic kids have their own issues, and I am not at all suggesting that Ms. Baird talk about only the subjective experience of her autistic child. I am asking only that everyone’s experience have a place in the narrative.”
Your point is valid and I’m not disputing that, but it goes along with the differences of empathy, too. Sometimes when I write about my boys (and this is just me, I’m not intending to apply it to the writer in question) I write about what I observe and state, sometimes explicitly and sometimes implicitly, that I do not understand my child(ren)’s perspective on the matter. It may be the writer does not include a subjective interpretation of her autistic son’s experiences in her narrative because she can’t, not because she doesn’t think it’s relevant.
As for the statement, “This is autism.” I totally agree with you there. I’ve had a lot of struggles with my children and sleep lately, but those struggles (nor the struggles of the writer in question) amount to what autism is. Even if everyone involved in autism, the individuals and the families, faced these same issues (which, obviously, they don’t) that still would mean “this” is autism. Autism is a lot of things, and it’s a spectrum of those things as they manifest in individual lives. No one thing is or could be autism. And the reactions of non-autistics to the struggles and hardships experienced in families where one or more family members are autistic is definitely not autism (though the belief that she was suggesting that may be a misinterpretation on my part).
And that’s enough of a response for one comment. That last big chunk of text will have to wait for further processing. But, to close this, I have to say that I am a parent of three dhildren with autism, none of which have the same place on the spectrum. There are times when it is very, very difficult on me, and on the rest of my family. It’s painful, it’s exhausting, and it’s hard. But that isn’t autism. It’s only a fraction of our experiences with autism; and since it’s only our experiences, it only represents a fraction of a fraction. Those stories need to be told; but so do the other stories, the stories where it’s clear that these busy boys are the joys of my life, a privilege to raise, and that each of them are dear and precious contributions to the human race.
Stephanie, thank you so much for your comments. You make a very good point: there could be many reasons why the writer left her autistic son’s POV out of the narrative. Whatever the reasons, though, the fact that it’s not there has an impact — especially because the personal anecdote sets up the whole piece. The generalizations about autism begin with “This is autism.”
I agree with your conclusions. It was irresponsible to associate the experience (especially when excluding the experience of her autistic son) as being autism.
Wow. A lot to digest. I find however, as ever, i agree with you Rachel, that broad sweeping generalisations about autism are not helpful. At all. That is what Ms Baird is failing to see. Without seeing that, her defensiveness becomes the ‘justification’ Sharon mentions.
Thank you as always, for your thoughtful and thought-provoking writing.
Thanks, Kiwipen. Much appreciated!
“One commenter on my blog went so far as to suggest that my kind of reasoning is why people kill their disabled children. ”
Just from what you’ve written here, I’d suggest you be careful what you say on the matter. Not that I don’t get what you’re saying (and certainly there needs to be better support for caregivers), but people are already too sympathetic to people like Kristen LaBrie and Robert Latimer. The victim often gets written out of the story entirely, except as scenery. When you talk about your son without taking his POV–speaking only of how he affects the rest of the family–or acknowledging his positive traits, you contribute to the cultural narrative that makes it easier for people to justify these types of ‘mercy killings’.
I’ll repeat a comment I made a while ago elsewhere–it is easier for families of people with autism to find support than for the autistics themselves. While I certainly have sympathy for the troubles you and others in your position deal with, rarely is the narrative about what it’s like for the autistic hirself. It can be hard trying to deal with an autistic person, but those troubles you have with one person are the troubles that autistics can have with almost every relationship they will ever form. And this is true for people with other conditions as well.
Baird’s writing, to be frank, is a stunning example of the dangers of Neurotypical privilege. It’s something that blinds many people even those with the most purest of intentions. I saw both sides of the argument, but saw many signs of privilege that were ignored. Thus, accountability for her language was also ignored
As Jay Kool would say this is a “what you said” conversation no a “what you are” conversation. Baird was turning this into a “what you are” conversation.
Rachel,
You quoted Ms. Baird as having written: “Autism is where marriages and parenting partnerships come to die on the rocks of exhaustion, despair and blind self-interest. Autism wears down families, severs familial bonds with sharp and bitter recriminations, blame and guilt.”
And you respond: “I absolutely cannot tolerate it when people indulge in these kinds of generalizations about a condition that exists on a very, very wide spectrum. I understand and have compassion for Ms. Baird’s experience, but it is her experience. Yes, it is an experience shared by other families, but it is by no means the universal experience of autism.”
My objection to the quoted passage is somewhat different. I’ve thought about it quite a bit and hope I can get it into words briefly enough for a comment. So, here I go:
Ms. Baird was using a metaphor, and as a parent of three children with autism (I know you’re aware of that, but others might not be) I strongly object to that metaphor that is reiterated in so many forms, by so many voices, in reference to so many things–and yet it consistently oversimplifies.
Human relationships are incredibly complex. Any parent of an autistic child faces many more stressors than just their child’s autism. Any relationship that parent has faces many more stressors than just their child’s autism. Marriages thrive and die all the time. Parental relationships thrive and die all the time. Friendships thrive and die all the time. Any other kind of relationship does, too.
This has absolutely nothing to do with autism. Relationships thrive or die based on the continued compatibility of the two people involved, and how much effort (physical, emotional, psychological, and intellectual) each person in the relationship puts into that relationship. Autism may be one factor in any relationship a parent of an autistic child has with another human being, but it is only one factor. It does NOT have to be the dominant factor in any relationship, even in relationships between parents and their autistic children.
Marriages and parenting partnerships do not die on the rocks of autism. Continuing with that metaphor, the boat that is the marriage or parenting partnership dies on the rocks, because either they’re not steering it cooperatively and they crash themselves or they’re not steering it at all and they crash themselves. The responsibility for the “death” of a marriage or a parenting partnership does not lie with autism, nor does it lie with the autistic child; the responsibility lies with the marital or parenting partners.
You do not, usually, get to choose the hardships you face in your marriage. You do not, usually, get to choose the hardships you face as a parent. You do get to choose how you handle those hardships. That choice is yours and your partners. You can blame others (whether people or autism or whatever), but it’s only denial. Autism does not choose whether or not your marriage survives; you and your partner make that choice.
(So, maybe not so short, but I hope it’s coherent.)
All beautifully said, Stephanie. I agree completely. If a marriage disintegrates in the face of autism (or any other disability), I think it’s worrisome to blame the disability. Certainly, parents often lack adequate support (to put it mildly), and if that lack of support creates pressures on the marriage that contribute to its failure, the fault lies with the community, the school, and/or the government, not with the child or the disability. I’m not saying that a lack of support makes marriages fail, but certainly, more marriages would be intact with proper support.
Rachel, I started writing another comment and it got even longer. I think I’m going to have to write my own post. I’ll let you know when I get it up.
Thanks, again, for the inspiration!
There’s so much to think about on this issue. I’ll look forward to reading your post!
I don’t know if you got the link, so I passing it along here: http://embracingchaos.stephanieallencrist.com/2011/07/false-blame/.
[...] post is in response to Rachel’s recent post at Journeys With Autism about taking care when expressing our experiences of disability. Her post [...]
[...] Cohen-Rottenberg’s recent piece ”On Language and the Spectrum of Experience” calls a mother blogger to task for not considering her autistic son’s perspective when [...]
Thank you for sharing your viewpoint on a very flammable topic. I commend you on your thoughtful input to an article that I would have dismissed.
Parenting a child with autism can be challenging. Parenting as an autistic can be challenging, too. I have bad days that frazzle me to the core, but ultimately, how I view my child and myself are under my control.
Accepting that difficulty stems from neurological differences keeps the blaming down. I can identify logical solutions when I remember this. It’s a bit like having faith–believing in the other person’s goodness and desire to do the right thing is sustaining.
I am glad that you are writing to build understanding of autists.