Susan's Blog

Saturday, June 23, 2007

My Feelings Are Mine, Just As Your Autism is Yours

I am moved to write about some of the outcry over my Dreamchild post on Ballastexistenz, and to some degree, on my own blog. There’s a lot being said about how expressing feelings on a blog is actually a form of taking action on those feelings. I can understand that claim. They are afraid that my expression of those feelings will hurt Nat. When I expressed my feelings in Dreamchild, I thought I took great care to show how the bulk of my feelings about my son are positive and that I am taking into account his abilities when I write about him as well as when I deal directly with him.

What I can’t understand and won’t accept is the sentiment that “therapy culture,” as the comment describes it, is something to dismiss. That if I say that these are my feelings and they just are, they are neither good nor bad, that is something to dismiss as “therapy culture.” In fact, feelings are in a different category from thoughts and actions. Although for some cases, you can work to change your feelings, there are other kinds of feelings that you may not be able to change. Feelings that arise from wishes, from your own flaws, from others’ disturbing behavior, I don’t believe can be changed very often.

As far as my right to express those feelings, I maintain that I have that right just as much as those Ballastexistenz readers have the right to express their feelings by criticizing what I wrote. I took great care to put my feelings and their expression in a context that stated that I was clearly not happy about having these feelings; that I love and accept my son for exactly who he is; and that I would never hurt him; and that I was sorry for having hurt others by what I had expressed. Nevertheless I believe that my expression of those ugly feelings was very helpful to others who have also experienced similar feelings and then they feel even worse about themselves and their lives. Acknowledging our feelings, even publicly but with care and sensitivity can be helpful in working towards ultimately changing those feelings, or at least understanding how our actions affect others. I am grateful to Ballastexistenz et al. for pointing out how my blogging about my feelings is in fact an action that can hurt. Even though I thought carefully about how I wrote them down, using the references to Nat’s true age destroyed for them the message I was trying to convey. I believe I hurt them, that they are empathizing with Nat. And I thank them for that, and I apologize again for that part of what I did.

I disagree with Ballastexistenz who says that feelings don’t just come up in a vacuum. I find that feelings are exactly that and more. I don’t dismiss “therapy culture” that fosters that belief; I think that is absolutely the case.

I find it ironic that Ballastexistenz and some of her readers are basically saying that I should change my feelings, and the way I express them, when they take offense at society asking them, as autistics, to change their behavior and in some cases, to change how they see the world. I value the perspective the autistics in my life have brought to my world, and I will try in the future to be more respectful of their feelings, especially Nat’s.


Good morning Susan,

Exactly, your feeling are YOURS. We aren’t living in a bubble here, everyone has the ‘what if’s.’ I think it’s only natural that we, as mother’s, have our ‘what’s if’s.’

It shines through how much you love your children, you are an excellent mother, totally devoted to your kiddos:)

Perhaps people don’t quite understand the whole ‘mother concept’ and how we feel because they aren’t a parent themselves? Just a thought.

I know I can’t comment on what it’s like to be Autistic because I am not. I can only try to understand my own son which can be tough because he’s totally non verbal.

I try the very best that I can. We are trying to teach him to sign and just two days ago he signed “yes” for the first time, woo hoo!

It’s totally not fair that you get attacked for expressing your feelings about Nat.

— added by KC's Blog on Saturday, June 23, 2007 at 10:19 am

Gosh we are all only human! I have a “what if” moment everyday as I watch my nonverbal three year old struggle with things that come so easily to other kids.He looks and acts like a one year old…am I a bad person for saying that? Susan, please continue to post honestly about your feelings…I read your blog everyday and it helps me to get thru mine a bit better.

— added by eileen on Saturday, June 23, 2007 at 10:40 am

This is not a perfect world and we’re certainly not perfect people. The way I see is that you use your blog to vent, to share, and to inform. You do that effectively and intelligently. I appreciate you letting us into your life.

That said this whole bit reminds me of the Woody Allen joke about the woman who finally had an orgasm but her doctor told her it was the wrong kind.

But that’s my feeling about this.

Have a great weekend!

— added by Someone Said on Saturday, June 23, 2007 at 11:12 am

But the thing is, you’re missing the point a lot of us had, by making it about hurt feelings. The ideas you expressed cause actual real-life problems far beyond feelings and that’s what the “outcry” was about. You make it all into your feelings versus our feelings, floating off somewhere in nowhere-land where all these things are equal and morally irrelevant (“just expressing our feelings”), and that’s not what the conversation was about. It makes it impossible to have an ethical discussion because it all comes back to whose feelings said what, and that’s exactly what’s wrong with what I was referring to about therapy culture.

— added by ballastexistenz on Saturday, June 23, 2007 at 11:17 am

I think the whole thing they are getting at is that you are wrong about Nat’s “real” age.

Now our Charlie is seven. But I know him just about the best anyone could know their kid, and he is about the same level as a three year old.

It’s not testing that has shown that, it’s his reaction to life in general.

I think we know our kids. Maybe someday they will grow up and say, “Mom, you were so off base about me.” and if that day comes, I will say Praise Hallelujah he can talk!! But for now, when I see him with no safety skills, limited speech and no apparent understanding for what I am trying to get across to him, screaming and kicking and fighting, I will have to say he’s a toddler.

I think you know your own kid, Susan. Don’t let them beat you up about this.

I still think that there is a huge gulf between parents of kids with autism and adults on the spectrum. Both believe that they know autism, but we are seeing it from two different sides.

I value their input, but man, be a parent before you comment on my parenting.

— added by Mom on Saturday, June 23, 2007 at 2:18 pm

it’s not about feelings; it’s about power. i have to say this, as i am only just learning to see these things myself.

if you can remember being a powerless child and then think about what that would mean (not just *feel like*, but *MEAN* in practical terms) if you were still treated as a powerless child as you moved into physical and chronological adulthood, with years more of life experience than you had as an actual child (no matter your abilities and how much help you need)…

yes we (some of us) don’t know about being parents. but do parents remember what they used to know as kids? curious if autistics who are also parents have a different, third take on this??? trying to remember, i think i read some at the original post.

— added by Natalia on Saturday, June 23, 2007 at 3:02 pm

Your feelings are your feelings. Feelings, and for that matter thoughts, arrive of their own accord. I think it is useful for people in any community to be honest about their feelings and thoughts. That is the best way to create a dialog in which we can work out the best way to respond to those sorts of feeling or thoughts.

I can see Amanda and others wishing that people didn’t have those thoughts. I can see how those thoughts could be hurtful or offensive, but what is the point of pretending they don’t exist if they do.

Often I wish that my son’s teachers were more flexible in their thinking. Often I wish that I had better spacial sense. Sometimes I wish my wife had better linguistic skills. Often I wished that my father had better social skills. And do you know what, sometimes I wish I were a millionaire.

That doesn’t mean that I will not work with my son’s teachers the way they are, or that I don’t accept myself as I am (a guy who can get lost in a parking lot), or that I don’t love my wife or my father, or that I hate myself for not being rich.

What is more, bazillions of mothers the world over find themselves, from time to time, thinking about how things would have been if their daughters has stuck with medical school, or if their son’s had been less impulsive, or more impulsive, or more motivated, or less motivated, and so on and so forth.

That’s what people do. And in my opinion, being honest about these thoughts and feelings makes it easier to embrace reality, which is better for everyone.

— added by VAB on Saturday, June 23, 2007 at 3:06 pm

Jan, we’re not beating people up here, don’t make yourselves into false victims, that gets old really fast. I mean sure, you can just sit around and reassure yourselves that all that’s happening is a critique of your parenting, and therefore you can ignore it, for the people offering the critique are not parents (even though some of us are), and so on and so forth and just don’t even bother to listen to what we’re saying because we’re just big meanies who hate you or something. That’s the easy way out. It isn’t real and it doesn’t contribute to anything getting better, but it’ll soothe the feelings of the powerful for awhile, who are the only ones who can afford to delude themselves that they are being “beaten up” by the less-powerful trying to offer some commentary here. (Just as the lazier-minded among men can convince themselves that they’re the victims of feminists and that feminists are all about hating and bullying and emasculating them.)

To take what you’ve said though, you’re basically saying that your prejudices are natural for parents to have, and are “the parent position”. That is not true. Parents who have really thought about these things often do realize that “at the level of a three year old” is not an accurate descriptor of a seven-year-old. (And the criteria you use for “being younger than your actual age” do in fact apply to many of the adults you’re talking to and therefore impact our lives not just the lives of your children.)

But no you don’t get to insult other parents by claiming that your prejudices are natural for parents to have, and you don’t get to blow off actual power analysis by claiming it’s all just a bunch of personal perspectives, none more real than the next, no substance, no anything but a bunch of feelings so that you don’t ever have to examine yourselves and change. You can just dismiss us as the Evil Meanies.

Go back and read my post. Go back and read all the responses to it. Go back and specifically read the ones that address people’s responsibilities in the world that go beyond feelings and people’s impact in the world that goes beyond feelings. And stop crying that your feelings are hurt by this, hurt feelings are not and never have been the point, they’re just a convenient distraction so that some people can go off and nurse their “hurt feelings” with each other and not have to think about the impact of their actions Read the bit someone wrote about self-indulgence again because that’s all I’m seeing here is excuses for self-indulgence at the expense of human rights for others.

(And human rights? Yep. I have limited safety awareness, it’s also my life — not my feelings, my life that gets impacted by people who think that means I’m “on the level of a child” in that area, and not just my life but the lives of millions of other people affected by these ideas. It’s weird to me that it’s those of us who are supposedly “like children” in these areas who seem to have what would normally be called the maturity to look beyond individual feelings and see the impact people have on the world.)

— added by ballastexistenz on Saturday, June 23, 2007 at 3:15 pm

And another thing: The supposedly-ironic part isn’t ironic at all.

I have never, ever taken the position that autistic people don’t have to change. EVER. To say that is to totally misrepresent my position and the position of most autistic self-advocates. What we’ve said over and over is that it’s not our fundamental neurological structure that has to change.

That doesn’t exempt us or anyone else from the same responsibilities everyone else has: To do the best we possibly can (and that’s the best we possibly can, not the best we feel like in our more lazy self-indulgent moments) to be as responsible as we possibly can. You think I haven’t changed in that regard and many others over time? Think again.

I used to be the one trained to say that my older brother isn’t really my older brother. Yep, that’s what I was taught. Those are the words I was taught to use.

And one time I said it, just repeating it, and someone said, “WHAT THE HELL DID YOU JUST SAY TO ME?” And proceeded to explain the myriad ways in which what I was saying was offensive and nasty and inappropriate and founded on dangerous assumptions and so forth.

That person was not attacking or bullying me, she was reacting to my thoughtless reiteration of a worldview that is genuinely damaging to a lot of people. Not just their feelings. And she had every right to be just as harsh as that and much more.

So don’t try to tell me (another person tried this on me recently too, and was equally totally off-base about what my ideas were in a pretty appalling way) that either:

a) I don’t believe in autistic people making these adjustments where they’re possible.


b) There’s something contradictory between autistic people not having to change our neurology and people in general (autistic or not) being ethically obligated to change their expressions of offensive and dangerous attitudes (even when they’re “innocent” or “seemingly out of nowhere”).

All this seems like is one big evasion of what’s really being said, why people really object to this stuff, and so forth. And I’m getting pretty appalled by the fact that many people seem to have taken a deep and ethically-possible worldview (such as the ones I and many autistic people I know subscribe to) and turned it into some shallow counterfeit like “autistic people don’t have to change anything ever”.

No irony here, just apparently total misunderstanding of what people are really about.

— added by ballastexistenz on Saturday, June 23, 2007 at 3:45 pm

Hi Susan,

I’m just catching up on stuff and am reading all this for the first time.

It’s hard to admit all our feelings sometimes as parents. And sometimes those feelings come to us unbidden. I very much appreciate your honesty.

I have wished in passing moments that my son was more like peers his own age and not so much like children much younger than him. It’s not that I wish he was a different child at all. As his mother I want his life to be easy. If I could have him be the exact same child with an easier road in life I would do it.

It’s possible I’m rambling.

— added by mumkeepingsane on Saturday, June 23, 2007 at 4:20 pm

Susan, I have tried to post comments refuting some of the misconceptions about what I’ve been saying.

I have tried to post comments describing having been on the other end of this sort of thing, having been the one saying exactly the things you’ve said.

You’ve posted others’ comments since then, including more comments that say I’m saying things I haven’t said. You have not posted mine.

— added by ballastexistenz on Saturday, June 23, 2007 at 4:48 pm

I think about all comments before I post them. Yours took a long time for me to think about.

— added by Susan Senator on Saturday, June 23, 2007 at 4:56 pm

Susan –
What I love about your blog is that you put your thoughts and feelings out there when many of us are afraid to do so. I think it is brave and courageous. You make me think and act more deeply.

We all have “what ifs” in our lives and many of us are afraid to voice it outloud, especially in a public forum like a blog. I think some of us (not myself) are horrified that anyone dare write about a “what if” with our children. How can you not wonder “what if” with Nat?

You clearly are an advocate for Nat and would never ever do anything to harm him. I think people are reading too much into your Dreamchild post. You were simply wondering – what if. I think it is perfectly normal and I commend you for doing so.

Keep posting your deepest thoughts for you help me think and act deeper. Thank you~

— added by Anonymous on Saturday, June 23, 2007 at 5:56 pm

Susan, “Dreamchild” is an excellent post. I just cannot understand how people can be offended by it. I guess that, while your boy was growing, a legion of people have blamed you for bad parenting because he couldn’t do some things his peers could. Now, other people are blaming you for bad parenting because his inability to do some things doesn’t make you jump to the ceiling from joy. Don’t let such accusations disturb you.

— added by Maya M on Saturday, June 23, 2007 at 7:00 pm

Are people trying to see us as saying you’re bad parents or what?

Because I’m not saying it and I don’t see anyone else saying it, but I do see the entire discussion diverting constantly into having to reassure you that you’re not being called “bad parents” or “bad people” (read the thread specifically the part about “bad people” and why that’s not a good way to view this, seriously).

— added by ballastexistenz on Saturday, June 23, 2007 at 9:23 pm

The point of these objections is nothing to do with call anyone bad. Nothing to do with labels like “bad parent” or “bad person” or any of that. No one’s trying to make this about anyone’s “badness” but about messages repeated, attitudes expressed, and what people (not just Nat, but all the people who might grow up to be his neighbors, friends, co-workers, bosses, etc.) learn about how autistics are viewed by these kinds of public expressions.

I’m sorry so many parents get called a “bad parent” so much, but it’s fair to say “You’re doing something wrong,” without calling or intending to call them or their parenting fundamentally bad.

So forget the badness. Drop it. It’s about what it means to wish these things for your kids, what it means to express it, and what the consequences are. This isn’t an exclusively autistic problem; there are similar difficulties over people wishing their gay kids straight, and the same problem for anyone who grew up disabled or otherwise different, and has to hear “All parents of kids like you do love you, but wish they could have had someone normal instead.”

— added by Anonymous on Sunday, June 24, 2007 at 4:55 am

Also, you have the right to express yourself. Anyone has the right to criticize your expression. You and your commenters have the right to criticize the critics, and so on to infinity (if anyone wants to take it that far).

The question right here isn’t what people are allowed to say, or what people should be allowed to say (no one’s proposing forcibly silencing anyone), but what’s morally justified. Not what the rights are, but what’s right. And parents who want to show how much they love their kids should what to know what’s hurtful and what should be avoided (thank you Susan, for listening and understanding at least some of this).

— added by Anonymous on Sunday, June 24, 2007 at 5:01 am

It is completely without guilt that I say I would prefer for my son to not be autistic. I love him completely for who he is. I do not say that I want him to be different – just that if he weren’t autistic, we would experience more of who he is and more importantly, simple everyday life would not be such a frustrating struggle for him.

A few days ago they were talking about autism on our local talk radio station. Someone called in to say that he would not want a cure for his 15-year-old’s severe autism. He said that the autism makes his son who he is. That blew my mind. I don’t believe that. I do not believe that my son is defined by the fact that he is autistic. And I believe that, if given a choice, he would choose to be cured of his autism.

— added by Kirsten on Sunday, June 24, 2007 at 11:42 am

the persons we would be if not autistic, simply don’t exist. we, the autistic persons, exist instead. it is not the whole of who we are, but neither is it separable. autism, whatever it is, is too tied in with perception, processing, and even some aspects of personality, although there must probably be as much variation of personalities among autistics as there is among people in general.

— added by Natalia on Sunday, June 24, 2007 at 8:40 pm

I would not want to “cure” my son of his autism. It’s an important part of who he is. As was said, there is no ‘other Patrick’…there’s only him as he is now. And he’s pretty amazing. So much so that when I leave an event I’d much rather bring him home with me than other supposedly “normal” children.

But I have also wished my son had an easier life. I suppose, deep down, there is a ‘dreamchild’. There is the internal wish that his life could be different, not so difficult for him to live.

I’m not proud of that part of me. But it’s there and it’s a truth that I can’t just disown.

I have used the ‘age correction’ before when trying to help someone understand what’s going on in our lives. But I stopped using it when I was told it was insulting. I still havn’t found another way to explain the fact that he acts younger than he biologically is but I’m working on it.

— added by mumkeepingsane on Monday, June 25, 2007 at 10:27 am

The desire that your kid have an easier life is a normal and natural result of being a parent watching your child struggle.

The desire to change your autistic kid so they’ll better fit the world, is understandable, but hinges on several assumptions that need questioning. Thinking that changing the autistic person is the best answer means attributing all or most of the problem to autistics being autistic. It means assuming that altering autistics to fit a world that doesn’t suit them is the best solution, and altering the world to better fit a broader range of people is only a second choice.

And a lot of autistics (including people who’ve been diagnosed as low-functioning) say they don’t consider autism fundamentally bad, and would rather live in an autism-friendly culture with their current neurology and brain structure than have typical mental processes in a society built exclusively for those with typical mental processes. Which is a reason to at least question these assumptions.

— added by Anonymous on Monday, June 25, 2007 at 10:47 am

There are feelings – for example, that I wish life could be easier for my child.

There are ideas – for example, that my child is younger than his chronological age.

A related idea is that adults with certain disabilities – especially if they need certain supports – are like children.

This idea has legal and practical consequences. What if an adult, who others view as like a child, wants to make his own decisions on personal issues like health care, marriage, having children, deciding where to live, and voting? Because of the idea that these adults are like children, the right to do that can be taken away.

There was an article in the paper recently about people who are not entitled to vote. One of the people was a young man with Asperger’s, Sebastian Go, who is under the guardianship of his grandmother, Linda Clarke. Because of the guardianship, he can’t vote. “He has to have someone manage his money for him and make his medical decisions,” Ms. Clarke said. “But Sebastian is able to make a political decision.” But no, he is legally incapacitated now.

We love our kids. We wish their lives could be easier. But do we want to perpetuate the idea that they can’t become adults?

I see nothing wrong with somebody reminding us that when we perpetuate certain ideas, certain results (other than “hurt feelings”) can follow.

— added by Anne on Monday, June 25, 2007 at 6:26 pm


I see what you’re saying I think. Part of the problem for me is that ‘adult’ is so far away it’s hard to imagine.

So should Patrick (who is now 5) be making adult decisions at age 18 if he’s developmentally not there yet? Maybe those decisions will have to wait till he’s 21? Or does that not come into consideration and he should be able to do whatever he wants at age 18? Or should he be able to drive at age 16 even if I know his impulse control is not comparable to his peers? I’m not being snarky, I really want to know the answer.

See what I’m relating to now as a parent of a 5 year old is something like this. Patrick is 5. At age 5 his NT brother could play outside by himself for a short period of time without direct supervision. Patrick, at age 5, can not be outside for ANY length of time unsupervised or he is very likely going to hurt himself, run away, etc. So the answer is pretty cut and dried at age 5 (for me anyway). He doesn’t get to do the same things as his brother did at this age.

I would never say that adult autistics should be considered children and I hope that is clear. It never occured to me, and I thank you for pointing it out, that age correction could be perverted in such a way. I appreciate learning these things since, of course, one day I will be the parent of an autistic adult.

— added by mumkeepingsane on Tuesday, June 26, 2007 at 10:15 am

Nobody can drive at 16 if they’re not up to it. Driving isn’t about “mental age,” it’s about specific skills. If the person doesn’t have those skills, they can’t drive, period. I have a movement disorder that results in periodic freezing, therefore I would never be legally allowed a driver’s license, nothing to do with mental age.

— added by ballastexistenz on Tuesday, June 26, 2007 at 3:46 pm

Ok, bad example. I guess, in his case, I was thinking of impulse control as a characteristic that should increase as a person gets older but doesn’t seem to be in his case.

I really don’t know what I’m asking here. My biggest problem is I don’t know what he’ll be like as an adult so I can’t think of an example. A childhood example…Patrick wasn’t allowed scissors because he would hurt himself and others. Lets say other kids got them at age 3 and Patrick had to wait till he was 5. Is there no adult example similar to that? That what I might expect an NT 18 yr old to be able to do I could not expect (theoretically) my 18 yr old ASD child to do?

Ah, I may have just worked this out in my head. So even though he would not be able to do everything an NT 18 yr old would be able to, he should still be considered an 18 yr old…an autistic 18 yr old instead of “like a 16 yr old”. Is that right? Is it just that it’s disrespectful to use typical neurology as a yardstick to compare autistic people to?

— added by mumkeepingsane on Tuesday, June 26, 2007 at 5:35 pm

I think what Amanda and some others were objecting to is that I said that in my little wish, I could see Nat as “truly older than Max.” The way I understand this to be insulting to Nat and the autistic community is akin is that he really is 17, no matter what, and to wish he acted like an NT 17 year old is as if I am saying it is inferior to act as an autistic 17 year old.

I understand and respect this point. What I don’t like is the sometimes belligerent tone that the discussion took. I don’t like thought police. I will say it again: I love Nat as he is, but the world is NT and it is more difficult to live your life NOT NT, and I want him to have a better life. I don’t want him to change, but it would make me happier sometimes if he were more able to function on the world’s terms. That does not mean autism is less-than; it means autism is more difficult. Just like probably being gay is more difficult. Or Jewish. It should not be that way, no it should not.

Meanwhile, I hope that the point of my blog post was not lost on everyone. I loved the way Nat looked in that picture. He looked more connected, okay? He looked like he was up to something. I like that. Call it whatever you want. He looked — I don’t know — familiar, somehow. He looked like himself and yet not. I have a picture of Max that is like that, too, btw, where Max looks older than he is and I have a glimpse of the man to come. Maybe that is what I saw. The man Nat could/will be. I will leave diagnosis out of it for now.

— added by Susan Senator on Tuesday, June 26, 2007 at 5:48 pm

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