Susan's Blog

Thursday, April 5, 2007

When Autism Really Speaks, Do We Listen?

The sun just came out, first time in days. It has been a typical cold New England spring. Everything greens up and grows in spite of the raw wet weather, or maybe because of it. But I tend to shrivel up a bit. If I were a flower I would be a deep pink Oriental poppy, that needs full, hot open field sun of late June, and is just a little bit dangerous if used the wrong way (heroin is made from it), and is a bit exotic. Parts of it are ugly and strange, like its spiny, spiky leaves. I would never be a bulb that flourishes in the cold and must stand there shivering in the wan March/April sunshine, nothing but hardened grass or mud around your feet.

An important thought came to me during this very indoorsy, introspective period I’m going through. I was interviewed yesterday by a very bright and empathic young man from the Seattle-Post Intelligencer. We talked a bit about the organization Autism Speaks. I realized, in expressing my thoughts on Nat and autism, that actually there were some commonalities between that large organization and me. We start from the same point, I believe, which is that we love our children and desire to help them. I think it is admirable that Autism Speaks seeks to improve the lives of people with autism and their families. I, too, do everything I can to improve my sons’ skills and their strong points, so that they may lead full adult lives. Nat needs more help than Max and Ben so far, in that he has problems communicating the way most people around him do. Even if he does have his own language, to refer respectfully to Amanda Baggs et al., he still needs to learn our language, the speech of the NT (Neurotypical) world. The NT world holds the power for now and a lot of his success will depend on his ability to connect to and access the NT world. You go to a foreign country, you do better if you speak the language and follow the customs. Sure, you can hope that others will know your language and tolerate what you do, but you can’t depend on that.

Autism Speaks, however, diverges from my interests when they talk about the end goal being to eradicate autism. I do not see that as the end goal. I believe instead that the goal should be bolstering the skills and abilities and supports of people with autism, while at the same time, seeking to shift the view of the rest of the world to a more tolerant, accommodating one. The goal can’t be to wipe out autism because that assumes that autism is an evil thing, a scourge. Many people with autism who express themselves do not feel that they can easily separate their autism from who they are. So how does it feel for them to hear autism described as such? That is what gives me the most pause. What is personality? What is personality with disability? Where is the line? Shouldn’t we all be concerned about how hatred of autism feels to those with autism?

I wish that the people in that organization would consider this. Because I think they mean to do great things, and have the muscle to do so, but they cannot forget an important part of their equation: the autistic people themselves, and how do they feel about autism.

Nor am I saying that I love autism, however. I love Nat. Autism is a part of who Nat is, and I have to figure out how much of that I accept and what parts I try to help him change. Any parent tries to do this with any child, whatever their issues, diagnosed or not. I see how Nat’s wiring hinders him from doing things he would like to do, express himself in a way that we can understand him. (And our wiring hinders us from understanding him better!) But as I have said above, the mainstream world requires certain skills for independence and a full life, and I want that for Nat, so I want to do what I can to give him those skills. NOT, however, at the expense of his self-esteem.

Nat has shown a remarkable ability to adapt to the NT way of life. And I think that this makes him more comfortable, and proud of himself, to have things go smoothly. So I guess he is the more flexible one of the five of us because he has had to learn our ways and we have hardly scratched the surface of his.

Just today he did his entire morning program, completely unprompted. Out of necessity, because his bus was here and we were oblivious to it! We were all eating. Finally he said, “YES! You need your pills!!!” So I jumped up and congratulated him for telling me just like that!!!! And then he said, “Get ready, your bus is here. Bye Daddy!” He did it ALL!!! (Except then he went out the door without his coat. But that could be because my Natty, my tall yellow sonflower, is perpetually hoping for warm sunny weather, too.)


I think you covered it all and said it well. May we brace ourselves for today’s Oprah show.

— added by Estee Klar-Wolfond on Thursday, April 5, 2007 at 1:53 pm

Hi Estee!
Yes, I was thinking the same thing. Even as I had every connnection I have pester the Oprah people to have ME on the show. Maybe none of them are quite ready to Make Peace With Autism since they have all actually declared war on autism!!

— added by Susan Senator on Thursday, April 5, 2007 at 2:17 pm

I agree, you covered it all. I love how you expressed it. And, I, too, am bracing myself for Oprah today.

— added by Anonymous on Thursday, April 5, 2007 at 3:51 pm

I feel for people with autism – I feel for my son. These kids have it hard but they are stronger than most of us ‘NT’ folk. They have so many things to overcome in a normal day but they are always right there to face the days over and over again. I agree that people need to stop trying to blame something or someone for the autism and stop spending so much effort trying to find a cure for it. I spend a lot of my time looking for ways for my family to cope and to thrive. I watched Oprah and I felt for the people on the show even though I am in the same situation. They lost me though when the one woman started blaming the vaccines – my son had signs of autism long before he ever had a vaccine. Susan – I think you would make a great guest on any talk show but you might be right – not too many people are ready to make peace. The world we live in today sees peace – any kind of peace – as a four letter word.

— added by lizziehoop on Thursday, April 5, 2007 at 4:19 pm

your book was boring amd whiney. your life is not that interesting and your story not that different from any other family dealing with autism, so why WOULD they have you on her show? because you managed to get published? most people do not share your old school views on autism so who would enjoy a whole show about how you just accept what life gives you and make the best of it? autism is not good when it is to the point of being debilitating. something is causing it and we need to figure out what it is. these kids are the canaries in the coal mines. you dont just let them “die”-you try to figure out what is MAKING them die.

get over yourself. your just a mom, with kids and a husband. you do not belong on Oprah or any other show. you’ve got nothing to say other than things about your belly.

— added by Anonymous on Thursday, April 5, 2007 at 4:43 pm

Hey 2nd Anonymous: Learn manners and learn grammar. “Your” and “You’re” are not the same words.
And grow a spine and sign your name to your words.
Oh yeah, and stop reading me if I piss you off so much.

— added by Susan Senator on Thursday, April 5, 2007 at 4:48 pm

Hello Susan,

I LOVED your last entry!! I have such respect for you because when Nat was young there was not nearly the resources and energy put into autism that there is today. You are to be commended for your knowledge and input on the subject. You are hardly “old school” when it comes autism and you continue to inspire me.

Keep up the great work!

Molly from MN (3 kids on the spectrum)

— added by Molly from MN on Thursday, April 5, 2007 at 4:59 pm

Susan, I think Oprah missed the opportunity of having a great guest on her show on autism. You have a great sense of humor, a long experience with an almost adult autistic son, a good attitute about it, and a beautiful family that would look great on those typical Oprah videos. 🙂

— added by Another Autism Mom on Thursday, April 5, 2007 at 5:08 pm

Whoa! 2nd Anonymous. What the hell do you think you are doing? How dare you come to Susan’s site with YOUR whiney attitude? I personally don’t have time for your opinion. I just wasted 2 minutes of my life reading your crap – that is 2 minutes I can never get back. Why did you waste your time reading Susan’s book and why do you come to this site? In my opinion Susan’s story is very different than the thousands of other stories where people spend their time and energy trying to blame others for the problem. Autism may be genetic – it may be environmental – it may be lots of things but most importantly it is in our lives and regardless of how it got there we need to deal with it and embrace it and the children that have it. The scientists may figure it out eventually and we should leave it up to them. It is up to us as parents do deal with the here and now.

— added by lizziehoop on Thursday, April 5, 2007 at 5:44 pm

I think this may be the first time that I have read a parent talking about their child -needing- to learn to communicate with the NT world and found myself completely agreeing.

So many times, the parent accepts this need as an immutable fact and that the NT way of communicating is the only way there is.

I… would like to hope that someday, our world (the world of NTs -and- autistics) will be more tolerant of differences in communication methods and styles so that the things you want for your son, that I want for myself, -don’t- depend on being able to do things in one, acceptable way. Maybe it will, and I will do my part to try and help that happen, but it may be a lot to ask of the world today where, in addition to so much bias against autism, the most powerful country in the world is still having an idiotic and very serious argument over whether or not immigrants should be forced to speak the language of the original founders.

— added by Zaecus Celestis on Friday, April 6, 2007 at 5:56 am

I’m vary of autism speaks. If it spoke, where are those with autism who can and do communicate? Why does the organization hide those people? Yes, it’s all about the so called losses, and rarely do you hear of the gains. Well said Susan.

— added by Someone Said on Friday, April 6, 2007 at 6:21 am

Autism Speaks has a specific agenda that requires them to paint the most dire picture of autism possible. I am sure THEY think they are doing what’s best for their kids, but I disagree with their philosophy and methods.

When it comes to depicting autism, they want to exclude all high-functioning people, Aspies, and people with “classic” autism who do not want to be cured. But when they are arguing that autism is an “epidemic,” then they are happy to count high-functioning autistics among their ranks! After all, a big reason the numbers have gone up is that Aspergers did not exist as a formal diagnosis until 1994!

— added by Laura on Friday, April 6, 2007 at 12:21 pm

Anon who disliked Susan’s book. Bad form – really. Why come in and just slam the blog owner? People in “my corner of the autism world” (perhaps you dwell there?)are often taken aback when I tell them how much I enjoyed MPWA. “YOU DID? HOW?” Easy. It’s a book about one family’s journey of surviving the ups and downs and fears and joys and remaining healthy and loving and intact. I believe when I reviewed the book I called it a “soothing balm” because that’s how it felt to me. Susan isn’t telling any one else how to manage their life – just honestly sharing her own. She and I agree to disagree on many topics on how to care for our kids – but we always extend a hand to one another when needed. That I believe is called friendship, maturity and manners.

Kim S. (yes, that Kim S.)

— added by hellosusan! on Saturday, April 7, 2007 at 10:02 am

Kim –
You are wonderful and I am so glad you are my friend. I got the package yesterday and will begin in the coming week!

— added by Susan Senator on Saturday, April 7, 2007 at 6:01 pm

A propos the quest to “eradicate autism” or “relegate it to the history books”:

— added by Phil Schwarz on Sunday, April 8, 2007 at 2:11 am

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