Susan's Blog

Tuesday, June 26, 2007

The Last Word

I made the following comment to a recent blog post of mine, but I think it is important enough an issue to make it a new blog post.

I feel a couple of things about our entire “Insult to the Autistic Community” discussion. For one, I feel remorse that I inadvertently made a statement that out of ignorance was a step backwards for the cause of acceptance of autistic people. Amanda and some others were objecting to my little wish, that in that photo, I could see Nat as “truly older than Max.” The way I understand this to be insulting to Nat and the autistic community 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 somehow 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. But if autistic people are telling me that what I did is akin to using the “N” word against blacks, or “retard,” for the developmentally delayed, then I will be more careful in the future.

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. Let me elaborate: I believe he loves to work, from what I have seen, but getting employment will be very difficult for him without a high school diploma, certain skills, etc. I believe he loves women, but I am not at all sure he can find a girlfriend with his functioning levels and lack of conversational skills. He would probably like to live on his own some day, but he will not earn enough to do that with the small job he can do. As a mother, it is my right to dislike those facts. Just like I dislike that Benj can be very cranky, and doesn’t like sports, and this will exclude him from some valuable relationships. I don’t want Nat (or Ben) to change, but it would make me happier sometimes if he were more able to function on the world’s terms. It would make me happier if he could share his thoughts with me. Yes it would. 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. It means that autism sometimes makes me unhappy. But so do my other children’s issues (Max can be difficult to motivate, etc.)

Meanwhile, I also feel a little pissed off because I hope that the point of my blog post was not lost on everyone. I am annoyed that there was absolutely no quarter given to me by the other side, no benefit of the doubt. I did not like the tone of some of the comments. But I ran nearly all of them anyway.

I am okay with learning something new, and I have. Maybe we all have.

Finally, I stand by all my feelings about that picture, but I will restate them differently now. I loved the way Nat looked in that picture. He looked more connected, okay? He looked older. 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. He is still my Nat in that picture. I will leave diagnosis out of it for now.


BRAVA, Susan! You rock! BTW — I am friends with/acquainted with Peter Bell’s wife. Peter Bell is the Executive Vice President (I believe) of Autism Speaks. My son was in the same class as Peter’s son Tyler when we all lived in Central NJ. I know Peter less than I know Liz, and I haven’t been crazy about some of their fundraising tactics, but…
If you need someone to help with the Autism/Disability Works! project, count me in! Tyler Bell is a great, gorgeous kid, whom Max STILL REMEMBERS 4 years after having been classmates! I participated in the first Cure Autism Now march (Sept. 2003) in Philadelphia, which the Bells unilaterally organized! Would that connection help pave your way?
Always in your corner,
T. Peacock

— added by Anonymous on Tuesday, June 26, 2007 at 7:37 pm

I don’t think I will ever be able to let go of the wishes I have for Chance. They keep my standards high. They get me feeling low. Memorial Day weekend I snapped a picture of Chance while he was walking down the sidewalk watching a bike race. I love that I caught him before he could think. The expression is so real in that moment, something I can relate to. I am hearing and seeing what you mean about a glimpse of what might have been. -Mrs. G

— added by Anonymous on Tuesday, June 26, 2007 at 8:21 pm

I still do not think you said anything wrong. Like you, I want my son to be able to function in the NT world. Like it or not, the NT world is a more desirable and advantageous place to be.

— added by Someone Said on Tuesday, June 26, 2007 at 9:19 pm

I just wanted to point out that you are Nat’s mother and you have every right to feel, wish,dream for YOUR son.

I was pissed off for you that your feelings were dismissed as being “wrong”. WTH?? They are YOUR feelings and this is YOUR blog. If people don’t agree, they do not have to read/post.

I think the main critics of your post need to back off a bit from the “thought police” role – part of this I think, is that you are a mother and they do not have that experience (being on the other side of Autism).

Take care.

Jamie from Portland Oregon

— added by Anonymous on Tuesday, June 26, 2007 at 9:48 pm

I missed the majority of this kerfuffle, but I did read it.
I didn’t find anything you said offensive, and I feel badly that it was taken so out of context.

— added by Jen on Tuesday, June 26, 2007 at 10:25 pm

I too was upset in reading all the previous posts that you weren’t given the benefit of the doubt – expecially considering your track record of being so proactive and positive.

It’s unfortunate that the attitude and stereotypes of the general population are such towards those whom are “different” that our words end up scrutinized when all we truly want is the best life possible for our kids – Autistic or not.


— added by Anonymous on Tuesday, June 26, 2007 at 11:36 pm

Fine. I give up. You all keep telling yourself that it’s all about consequence-free ‘feelings’, that it’s only natural to regard your kids as a tragedy, and it’s all about the big bad “thought police” on the other side.

I tried to communicate about what you’re doing to people, but you want to keep the parental pity party going, treat anyone who’s subjected to this behavior as ‘just not understanding’, and sidetrack us all with the endless focus on how we don’t hold your hand and reassure you often enough that you are all so good and nice before discussing the power you have over your children’s lives. Frankly, there’s only so much coddling I can do.

Have fun wailing about the tragedy of autism, and smearing my parents by claiming that all parents wish their kids normal all of the time.

PS: This is harsh. All the other posts were trying to be nice.

— added by Anonymous on Wednesday, June 27, 2007 at 3:17 am

Anonymous –
My wish for you is that you will understand more one day about different foci on the same issue and, as one friend put it in a personal email about this, “the capacity to hold ambivalence, to allow for sorrow & love at the same time, all the mix & mess of it.” Good luck to you.

— added by Susan Senator on Wednesday, June 27, 2007 at 5:00 am


I am sorry that you have to defend yourself like this – your book was the most positive book that I read when my child was first diagnosed. It was a great help.

I think it is a given that you can love someone and also desire a positive change in them.

I wish my child could communicate as a 10 year old NT child. It is frustrating for me and her and I want to know her better. That doesn’t mean I don’t love her, it means I DO.

Please don’t change your blog, most of us want to hear ALL that being a parent of a child with ASD entails, the crappy stuff too.

— added by susan on Wednesday, June 27, 2007 at 6:50 am

With grace and dignity you have defended your right to humanity and to having feelings and expressing them. Others have compared your feelings to tangible hostile actions that reach out and rip people apart.

I am glad that you are standing up for yourself and I am standing with you. We are humans, we do have feelings, we have the right to express them and if others don’t want to hear about them, go read another blog.

— added by Mom on Wednesday, June 27, 2007 at 8:07 am

I followed all of the discussion you had here and at Amanda’s. I see both sides. As parents we can dream. I too have had some dreams of Sam who is autistic. Mostly early on, to hear “I love you.”. As a parent of an NT child as well, I dream of my NT being a little different and not having the struggles that NT people have as well. It is human, we are not perfect, it is your blog….dream!

— added by Laura Cottington on Wednesday, June 27, 2007 at 10:18 am

This isn’t about having a right to express feelings. Stop dodging the issue by trying to turn it into some kind of free speech thing. No one is advocating censorship here. The point is, sometimes people’s “feelings” can be hurtful to others. Wishing that you had a “normal” child is hurtful to autistic people. Such “feelings” perpetuate the idea that to be autistic is to be inherently inferior. It may be just you expressing your “feelings,” but so what? Feelings aren’t beyond all criticism, and the people who may have been hurt by such expressions aren’t not going to be hurt because it’s “just a feeling.” Free speech works both ways.

— added by Anonymous on Wednesday, June 27, 2007 at 10:31 am

I love your blog Susan. It’s too bad some folks are trying to push their ideas off on you and actually trying to get you to change YOUR blog for them! It’s your blog, not theirs. Your ideas, not theirs. I totally admire the way you write, straight from the heart. If you changed it to please others it wouldn’t be your blog anymore, not really.
Keep blogging exactly like you do, we admire and respect your thoughts.

— added by KC's Blog on Wednesday, June 27, 2007 at 12:43 pm

I said it last week and I will say it again this week – people are reading WAY too much into your original post. Feelings, schmeelings.

My brother suffered from brain cancer for 3 years and died in April. I frequently said I wish he didn’t have brain cancer for what it was doing to him. I guess I was hurting his feelings by saying this? By wishing that he had a healthy and normal life. Normal meaning free of cancer, which would mean he didn’t have the speech or vision problems that the brain tumor caused.

The same goes for Nat. There is nothing wrong with wishing for your child to have a typical life. Anyone whose feelings are hurt by this statement, please stop and get real. Stop reaching and preaching to Susan – who is a wonderful advocate to all.

— added by Anonymous on Wednesday, June 27, 2007 at 3:47 pm

I have never been diagnosed as autistic but have long suspected myself of having Asperger syndrome, and have been told the same thing by my aunt and brother, who work profesionally with autistic people.

I did not find Susan’s comments offensive. I don’t think anyone is perfect, and everyone has moments of wishing for things to be different. This is clearly a personal blog, not a site representing an organization like Autism Speaks. I think whatever’s written here needs to be viewed as a subjective look at how someone feels at a given time.

In other places, I have read comments by parents of autistic children that I did find offensive, but those people generally don’t seem to engage with autistic individuals or to recognize the diversity on the autistic spectrum, both of which Susan has done.

— added by Laura on Wednesday, June 27, 2007 at 4:29 pm

About the Anonymous who left the 7th comment (Fine. I give up…):
His parents and some other parents may never wish their child to be normal. Some parents may sometimes wish their child to be normal. Some parents may always wish their child to be normal. But I don’t think there is a single parent who would wish his child (normal or otherwise) to write the way he does. It is good that he comments anonymously, so his parents may read his comment and still have no idea who the author is.

— added by Maya M on Wednesday, June 27, 2007 at 6:47 pm

Maya M. appears to have a very strong bias, as evidenced here:

“I have nothing against mentally retarded people in general. I dislike only those of them who want to censor my language […], plus the precious few who come to our Medical University with the aspiration to become doctors”

— added by Anonymous on Wednesday, June 27, 2007 at 7:20 pm

Maybe Maya will explain the context of these remarks (?)

— added by Susan Senator on Wednesday, June 27, 2007 at 7:34 pm

I read the post to which the comment referred. I think that it is good to ditch the old archaic terms for neural functioning levels. We know so much more now then we did years ago.

I think that a huge part of this is that people with autism are fighting the stigma that others think that they are dealing with someone with a lower intelligence simply because of the communication problems.

Maybe the reason that outsiders perceive people who have autism as mentally retarded is because that’s what they have been told for years and they don’t know any people with autism personally. Very few people with autism are “mentally retarded”. That is old school thought. People were wrong in labeling these highly intelligent people as MR.

I spoke recently with a man in his 80’s and he point blank said that in his day my child would have been put in a home. That is a crime. I am glad that my son was not born in times like that. We all have to do sensitivity training all the time to deal with this issue. People don’t “get” autism yet. They hear about it in the news, but they don’t understand it.

In reality, I see my son Charlie, who is autistic, as one of many people who are highly sensitive, extremely intelligent and hyper focused that they have a hard time relating to the rest of us.

If only I could plug into his mind. I say that all the time. I know that he has so much more access to his senses and he is so very bright in a very different way than anyone I have ever know. I just wish that I could understand him. Or that he could understand me. We just have a fundamental communication problem, we are not speaking the same language.

This is why I once wrote to Amanda and asked her for more information about what autism is really like, but never heard back. I just want to plug in. But I know it’s not her job to plug me into her head. I realize that was asking a lot.

But parents are going nuts to know what the heck we should be doing to make that connection and here we have adults on the spectrum and still, we don’t know as much as we should about how to help our kids. Or at least I don’t.

— added by Mom on Wednesday, June 27, 2007 at 8:55 pm

nobody ever claimed you don’t love Nat. we know you do. only claimed that publicizing feelings that disrespected him and other auties in similar position to him, was a problematic thing. we get that you love him. you / some readers don’t get that some viewpoints are more privileged than others and therefore those ppl with more power have responsability to be more careful.

— added by Natalia on Thursday, June 28, 2007 at 1:13 am

PS: Maya, if my husband and i ever have kids, i think we would both want them to have the kind of values that Anonymous is defending. it took him/her a while to get this worked up, and that is not hardly a rude post, comparatively.

— added by Natalia on Thursday, June 28, 2007 at 1:17 am

Welcome to the new readers of my blog.
Let me first say that I do not claim to be 100% free of prejudice and bigotry and to be a very good person.
As I was writing the more recent of my two cited posts, I was aware that it could be offensive to people with intellectual disabilities. Therefore, I added the cited disclaimer.
It could be asked, why then didn’t I correct the post so that to make it inoffensive (or, because this seems impossible, simply delete it)?
The offensiveness of the post reflected my hostile feelings towards people putting restriction on language. When A demands and manages to impose things that B doesn’t find right, this generates hostile feelings of B towards A. Depending on the situation, the right may belong either to A or to B. So, depending on the situation, B’s hostility towards A may or may not be justified. I thought I was right (as people usually do), so I didn’t feel any need to try and hide my hostile feelings. If somebody disagrees, I would be happy to discuss this on my blog (or on his blog, if he has one).
In the same way, if a man expresses hostile feelings towards women because of the need to comply with feminist political correctness, I wouldn’t say, “What a bad person you are, not to like the “she or he” construction”. I would say, “You are right to reject the “she or he” nonsense. But please don’t attack all women for the deeds of a few activists who proclaimed themselves as our rightful representatives. We have never elected them.”
My earlier post was about some young people who were unable to write their names yet were full-right freshmen at our Medical University, with excellent chances to graduate. The strong language of this post, besides venting my feelings, was aimed at attracting the reader’s attention to an outrageous situation. I must be a very bad writer, after my writing is perceived as more outrageous than the phenomenon it describes. But, with your hand on your heart, would anybody here wish to be treated by such a doctor? Or somebody would think, as our University administration officials privately say when we protest, “No reason to worry, after graduating these students will return to practice in their countries of origin” (context: if good-for-nothing “doctors” kill and maim other people and not us, everything is OK).
I agree that a balance must be achieved between the rights and feelings of people with intellectual disabilities (and also with sub-average but still normal intellect), everybody’s right to free speech, the need for everybody to maximize their cognitive potential (whatever it is) and the society’s interest certain positions to be reserved for people above the average level (in my example, doctors). Again, I would be happy to discuss these matters, but let it be on my blog, it seems to me unfair to “hijack” Susan’s blog.
It seems that even in the historical territories of free speech, the point has been reached when people look behind their shoulders before saying anything. Been there, done this, didn’t like it.
To Natalia: Perhaps you know who Anonymous is, but to me, s/he is just a person shooting at Susan while hiding behind a bush. And I don’t see any values he is defending, except unlimited freedom for him and unlimited censorship for others.
To Jan: Read this, if you haven’t!

— added by Maya M on Thursday, June 28, 2007 at 6:55 am

Just wanted to say a couple things.

1. I’m not “Anonymous.” (I don’t use sockpuppets, period. I either post or I don’t.)

2. This was never to me about whether people were “insulted”, it had to do with whether certain ideas were tied in other ways to the tangible oppression (not “insult”) of people with developmental disabilities.

3. This was never about censorship, either. If it were, then every disagreement would simply be an attempt to censor someone.

4. This is not about good people and bad people (still trying to finish my post about that from a few days ago), never was.

— added by ballastexistenz on Thursday, June 28, 2007 at 8:52 am

Maya, thank you for the link. I have to admit, I scanned the article. I have a hard time sitting down to read in depth on the computer. But the conclusions sounded valid. I agree that if you have a test that can not be administered because the person being tested can not participate – and that test is the basis for the diagnosis – then we need a different tool to make the diagnosis.

— added by Mom on Thursday, June 28, 2007 at 9:25 am

I wish my autistic son was high functioning so he could communicate more easily, understand more, understand NT people better, and live a better life in this NT world. I don’t feel bad about saying this either. And only a parent of an autistic child will ever know what I mean and what this feels like.

— added by MarkZ on Thursday, June 28, 2007 at 9:36 am

yeah, i should have specified (as i am pretty sure i did somewhere before), not “disrespect” like insult, but “disrespect” in a practical way, in the same way that leaving physical or psychological barriers is a disrespect to disabled people.

and none of this is about PC (some of us who got upset at the ideas in the original post are actually not very in favor of PC at all, except maybe where it overlaps with respect, accuracy, or both).

it’s about consequences of ideas.

— added by Natalia on Thursday, June 28, 2007 at 12:50 pm

I am a newcomer to your blog. I found my way here through Ballastexistenz. I am a single parent of 4, my oldest son is autistic. He will be 13 in a few months. He is very verbal and yet, there is so much I don’t know about what is going on inside of him. Every once in a while, unexpectedly, something spills out and I am given a small glimpse into what is going on inside. I know the humming is usually to drown out the sounds he hears in his head which are usually from the constant visuals that run through his mind like an on-going movie. The humming is also to drown out sounds around him that he doesn’t want to hear. He makes noises sometimes, he talks to himself often – well he’s not actually talking to himself just reenacting something he has seen in a movie or t.v. show, he makes arm movements at times which I noticed come and go when he is nervous or overtired, and he has a speech pattern that some would say has a “babyish” tone to it. These are things about him that I cannot change. This is who he is. And as far as I am concerned, these are things that the neurotypical world are just going to have to learn to deal with. My son has learned what is expected of him in certain situations, school for example. When he walks around the room too much, or the noises he makes become too loud or distracting, the teacher, his classmates, or his aide, give him a signal and he will sit down or quiet down. This will be repeated sometimes several times during a day. These are just a few of the things that the NT world he lives in has had to make adjustments in their attitudes about. This is the way he is and they have to accept that. My son tries to learn from watching his peers how to act and react to situations, something that comes naturally to his siblings and other non-autistic kids around him. I reassure him that I am proud of all his accomplishments and that all I ask is that he put forth his best effort and do the best that he can. I do believe he understands what I mean. I say all of this for a reason. When I read your entry about the photograph of your son and how you saw for a moment the person he could have been, without reading any other comments about it, I was saddened. Saddened because what I read was another parent hoping to wish away their child’s autism. I re-read it and tried to look at it from different angles, but I still saw the same thing. Because you really don’t know how your son feels about his autism, the wishing for an easier existence is really for you. Easier for you. And I think that THIS is what you missed in all the comments that came in response to your post. (I agree with you that some of the comments that followed were belligerent at times, and some took unneccesary turns.) I believe that you love your son. I don’t question that at all, or your abilities as a parent. But I do wonder about your acceptance of everything that is Nat and how he fits into the world. I have found it very enlightening to read what is written by those with autism. Not comment, not respond, just listen and observe and learn. It has helped me in little ways better understand my son, and at times taught me how to help him. Thank you for letting me comment on your post. I really didn’t mean to go on for so long! I hope in some what I wrote has been helpful.

— added by momluvs4 on Friday, June 29, 2007 at 3:04 am

momluvs4, I have no doubt that by now Susan understands that writing about this on her highly-read blog upset and hurt some/all autistic persons who read it because the reader perceives that she is wishing Nat was not autistic. She knows autism is part of who he is. I believe she reads blogs and books from autistic persons, and she is very empathetic of how they feel and of how they perceive and deal with the NT world. She has been living with autism for over 17 years. She has probably had these and other feelings like this, hundreds if not thousands of times in the past 17 years. I’m sure she has been reading blogs written by autistics for 17 years. I’m sure she will be the first to tell you that she learns something everyday from the autism experience. Anybody who knows her knows that she is not close-minded. I think that it is only human/natural to, at one point or another, feel what she feels about this, as I’m sure most if not all parents of autistics have felt the same thing at one time or another in their parenthood. If you haven’t, God bless you. I am not perfect. I’m human, I’m not God, so I have. I don’t think Susan missed anything in the comments she received about this. She knows exactly what everyone is trying to say. I do think she is very concerned about “how he fits into the [NT] world” and justifiably so. I think you have a hopeful but untrue belief that “the NT world he lives in has had to make adjustments in their attitudes…”, and, “…they [the NT world] have to accept that.” The NT world doesn’t have to accept him or autism, and a lot of NT people don’t and won’t, and will take advantage of the weak, disabled, and vulnerable. Yes, we as advocates are constantly struggling to educate NT people about autism so that they can/will accept autistics for who they are, but the fact is, the NT world has a very difficult time doing so, and this will continue for years to come. There are many cruel people in this world. There are people that will try to take advantage of Nat. It’s very scary. Some/many autistics don’t have and will never have the capacity to comprehend that someone is taking advantage of him/her. We won’t always be there to protect our autistic sons and daughters who can’t protect themselves against these mean people, which is why we want them to understand more, communicate better, and connect better with NT people. Look at all the strides that have happened for African Americans, and to this day, they are still very much discriminated against, even with all the efforts that have taken place over the past 50 years. I don’t think Susan has to continue defending herself. Believe me, she gets it.

— added by MarkZ on Friday, June 29, 2007 at 11:38 am

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