Susan's Blog

Thursday, May 18, 2006

It’s Life, Stupid

I do not like the concept of recovery from autism. On a bad day, I think that’s because Nat did not recover and I’m jealous. On other days, that’s because I am offended by the concept. I am offended by the deluge, courtesy of Autism Speaks, the Schafer Report, and other similar organizations, that portray autism as the worst thing that can happen to a child. There is an assumption embedded in everything these people, undoubtedly well-intentioned, present, that autism is nothing but a disgusting, family-wrecking, life-ruining tragedy and that these kids bring only sadness in their current incarnation.

I understand firsthand how difficult it can be to have a family member with autism. I literally wrote the book on living with an autistic child. I have faced years of sadness over what I believe Nat has missed out on, what I have missed out on, what his brothers have missed out on because he is difficult for them to know, how hard the behaviors are, and on and on. I suffered as a young mother trying to understand. I suffer as an older mother worrying about Nat’s independence and future.

But the older I get, the more my perspective has shifted. For one thing, I now know many autistic people (adults and children). I have had autistic people tell me what things are like for them, the pain and the joy. When you meet adult autistics, it changes you. You realize that there are very different people out there, and that that is okay. You realize that there is loss, but that loss is everywhere. Coping with autism is the first thing many parents have to face, the first among many other things. But autism is not the only “villain” in life. Autism is a stressor, but so are illness, change, jobs, adolescence, divorce.

It is so difficult, when you are a young parent first dealing with something as blatant and challenging as autism, and others around you are not. It is so difficult not to compare your life with your friend’s, your autistic child with your typically developing child. Society doesn’t help: strangers judge you, identify you as a bad mother when they don’t know better. School systems are not up to speed on autism. There is so little public money around for services that parents have extra work and expenses in helping their children.

All that is true and really, really hard. Couple that with all the stuff you think your child doesn’t get to have and to be. It is chokingly sad. I know that. I’m the one who cries (still) when Nat listens carefully to the Little Mermaid singing “Part of That World.”

I still do not believe that we are tragic. My new pain over Max pulling away from me is every bit as horrible and debililitating at times as the autism pain has been. My grief over Ben being excluded from a birthday party hurts just as much, and I have to let that in as much as any autism pain, because my children count equally in my heart. When I confronted the possibility (gone for now) of my mother having cancer, I felt chopped in half with fear.

When families put all of their emotional eggs into the recovery basket, they end up missing the bigger picture. Forget for a moment the message that their children may pick up from their parents’ constant drive to fix them. Forget the message that the other family members may pick up from maybe not being as important as their autistic sibling. Forget the message that the husband and wife impart to each other when they cry about how awful their life together has become, and can feel nothing else.

I have no answer for how to feel something else. I lived through that awful splitting, when I could do nothing but cry and Ned wanted no part of it. All I know is that there is often a shift as our children age and we see more who they really are and we are forced to drop our preconceived notions of Hallmark Card living. We finally get it: that this kid is tough to live with, parenting is really hard work, there is no escaping pain. But it is not the end of the world. Happiness still bursts through, that ray of sunlight on the edge of the clouds.

Life is hard, nature is red in tooth and claw, no one was ever promised a rose garden. My most basic feeling is, let’s stop blaming autism for so much misery in the world and just focus on our kids and how to bring out the best in them — regardless of their wiring.


Well said, Susan!

— added by Mamaroo on Thursday, May 18, 2006 at 7:00 am

Thanks Sue. I liked reading that this morning. Made my day.

— added by Andrew on Thursday, May 18, 2006 at 8:52 am

I watched that horrible video over on Autism Speaks as well. I’m not sure they could have portrayed autism in any more of a negative light.

— added by Wendy on Thursday, May 18, 2006 at 9:49 am

Very nicely said. I have been trying to figure out a blog since I saw the video (Autism Speaks). I have e-mailed Ms. Wright several times with no response. My plea to her has been the comments I hear her make everytime she is on TV, from The View to Today Show. I can not forgive her when she says “We can not accept these children this way”, and have explained how important it is to accept them and nurture them. I wasn’t so kind either when I told her that it must be nice for her daughter in law to have someone able to put such $$$ to work. Some of us can’t even afford the therapies our children need and deserve because of insurance etc…For our son to receive ABA therapy (which he hasn’t because of finances)with appropriately trained people here in Minneapolis is $100,000 a year if insurance does not cover. The last time I heard Ms. Wright speak, her grandson was receiving that and many, many others.

Well said blog today. Not sure if I am ready to write how I feel, so thank you for sharing and posting to the world my similar thoughts.

— added by Laura Cottington on Thursday, May 18, 2006 at 10:17 am

This blog by autism speaks, was only directed to show how autism effects parents in a negative way . Perhaps its title “autism everyday” should be changed. I agree, but I am not sure that I want to assume that these women don’t feel any happiness towards their kid or life. I also think it should be considered that many of these people have not had 17 years to cope and come to grips with the same things that you are talking about. Furthermore- people sould take care when using the term recovery- it does not mean the same thing to everyone, I am finding that out as I go. Recovery to me is functioning and being happy on that persons own terms and not on someone elses. When I look at Sam my wish is not to fix the Autism per say but rather to help him function on a daily basis without hurting himself and to enjoy aspects of the world he never has seen before…This is what recovery means to me…not to be indistinguishable from his peers…I am hoping that he is distinguishable- that is what makes a “distinguished Gentleman”..
I read your book, and I still stand behind it, you wrote of a great pain that I could relate to…You have had 17 years (i think nat is 17)to grow…some have not…some will never deal well with it…Being an oncology nurse and having had a little trauma in my life I am well aware of the tradgedy of the world that you speak of..the Dalai Lama, says” Suffering is inevitable in this life”…It is so true…Some can acknowledge suffering and know it well , but does that mean that they can’t verbalize their pain? I was very enlightened by your presepctive of this clip..It was an element that I had not considered and I thank you for the view…One last question…You speak of a big part of you that doen’s buy into recovery, and that Autism shouldn’t be fixed…Then why do you state that you are jealous of those who supposedly acheive it?

— added by Kristen on Thursday, May 18, 2006 at 1:34 pm

Good post.

I remember last year, when I was diagnosed with ADHD, I told my (several) online autistic friends, and the responses I got were, for the most part, along the lines of “congratulations!”

Quite a different reaction from that of most people in the world.

— added by Jannalou on Thursday, May 18, 2006 at 2:08 pm

Susan, that is great. I especially like your statements concerning (essentially) ‘this is real life – let’s get on with it.’

I need to rehear that often…


— added by Aspie Dad on Thursday, May 18, 2006 at 2:30 pm

I watched the video and cried because that is my life too. It was bleak and negative and right now, I am right there with them. I hope to God it will change for us. The screaming, the running away, the nightmare of no sleep – ever, the cost of care, the feeling of anxiety over what would happen to Charlie if something happens to me; I felt like, Oh my God! They are telling my life!


— added by Mom on Thursday, May 18, 2006 at 2:43 pm

Thanks, Susan. You articulated what I’ve been struggling with – that my dear son’s autism can be ridiculously painful and tough to deal with, and yet, possibly because of it, he’s one of the most beautiful people I’ve met. Two years after the diagnosis, I still feel like we’re new to all this. We’ve been listening to the views of the biomedical people and the diet people and the autistic rights people, but come away confused. It can feel like a lot of pressure when I’m around people who are adament about their views. After all, what if they’re right and I didn’t make the best choice. But really, is it possible to fix what amounts to a profound neurological impairment?? I’d like some objective, quantitative research. Then it might be easier to manage these varying viewpoints. Kristen, I like your perspective on recovery.

— added by Libby on Thursday, May 18, 2006 at 4:10 pm

What a lovely post. Thank you. Also, hooray for the good news about your mother!

— added by Doris on Thursday, May 18, 2006 at 7:18 pm

Which is why your blog is so wonderful for us to read! Your book is the first one I’ve read on autism in many (8? 10?) years. I got sick and tired of hearing about kids who were doing fabulously, and never about kids who are still struggling daily with autism and will for the rest of their lives.

When I decided our family had been led down enough rabbit trails of cures and stopped persuing them, I have felt a distance with the autism community at large. We live, love and laugh with autism every day and your writing helps us not feel so alone!

— added by Cyndi on Friday, May 19, 2006 at 3:00 am

Good blog. I find that, embarrasingly, my feelings flip flop on the acceptance of my daughter’s autism. Somedays I feel that I cannot “do this” for one more day, let alone the rest of my life. Other days I think I am the luckiest mom on the earth: my family is unique, loving, quirky and special. I always always love my daughter. I cannot say it is easy to deal with autism though. I hate to be so wishy washy but I can see both sides: the wonderful acceptance and the gut wrenching-what the hell is her adulthood going to be like???

— added by Elaine on Friday, May 19, 2006 at 7:57 am

I like Cyndi’s point about your book. That is why I loved it! Even though my kid is doing so much better than he was, I feel that your book is the best representation of Autism: the way it starts out, the way it is , the way it can be and the way it often ends up….I have said it many times over it is a brilliantly written piece which pulls the reader (if not a parent) out of the land of the ignornat. I recommend it to anyone who has a child on the spectrum and mostly to people who don’t. As long as I live, no matter what Sam’s outcome this will be one of the things that got me through…Your book!

— added by Kristen on Friday, May 19, 2006 at 9:54 am

Amen! Exactly why I loved your book and now read your blog.

— added by Mick on Friday, May 19, 2006 at 11:00 am

Cyndi said:

“When I decided our family had been led down enough rabbit trails of cures and stopped persuing them, I have felt a distance with the autism community at large. We live, love and laugh with autism every day and your writing helps us not feel so alone!”

Amen, and it is up to *us* to at least start the work of turning the “autism community” around. (Funny, that term “autism community”, because it is made up overwhelmingly of parents and professionals and clinicians and researchers, almost *none* of whom are themselves on the spectrum…)

That work must necessarily proceed from the grassroots up, because the “cure” mentality pervades not only the mainstream public’s take on autism, but also that of the major autism organizations.

As I said in — “all our base are belong to *them*”. But fans of the “All Your Base” Internet meme know that the proper response to that is “take off every Zig — for great justice!”

And we, folks, are the Zig pilots.

If we resolve to become allies to the points-of-view Susan and others have come to espouse, that those of us in the *autistic* community have been trying to get people to listen to for more than a dozen years (see, for example), if we start to engage fellow parents 1:1, in small-group speaking engagements in our local autism support groups, in contact with the media… we will eventually reach a tipping point and turn things around. When the people start to lead, the leaders will learn to follow.

(In the interests of disclosure: I am both a parent of an autistic son and an AS adult — see for more.)

If that prospect seems too daunting, it may help to take the perspective of Rabbi Tarfon, a first-century CE Jewish sage, who said “It is not our responsibility to finish the work, yet neither are we free to walk away from it.” Somebody has to start — drawing from Lao Tzu, the 6th-century BCE Chinese sage — the “thousand mile journey with a single step”. And back to first-century BCE Judea: the great sage Hillel the Elder, whose teachings shaped not only the Talmud and hence the Judaism we know today, but also the teachings of Jesus, and hence much of Christianity, said: “If I am not for myself, who will be for me? And if I am only for myself, what am I? And if not now, when?”

I am trying to organize the means to pilot and bootstrap support mechanisms for allies to the POV and approach to autism shared by most autistic self-advocates, and some of us parents. I envision something that will do for us, what PFLAG ( does for parents whose kids have come out gay. They are swimming upstream in the society at large much the way we are within the “autism community”.

My daughter Rachel’s two best friends are gay. (It’s a spectrum too: the “Kinsey spectrum”…) I joined and support PFLAG as a way to support her in supporting her friends. Having done so has begun to teach me what is needed, and what works, to provide the necessary mutual support.

But I need company on this journey, to replicate the PFLAG model. I am hoping to work with potential resources here in the Boston area to set up a pilot of such a support group, a model that could eventually be replicated in other communities.

I will be moderating a panel at Autreat 2006 in Philadelphia in June (see for more info), onto which I have invited representatives of PFLAG and other gay-community organizations doing outreach and support of straight allies, so we can jumpstart an inter-community dialogue about how to replicate that model in the autistic community and its allies. After I get back from Autreat, I will be seeking resources and partners to set up a pilot support group for parents who have chosen to engage fellow parents and their kids’ providers in dialogue about our POV and approach to autism.

I am quite sure we will need that degree of support: the cure mentality wears us down and out-shouts us, and sometimes engages in overt hostility. But with mutual support, that can be overcome. And armed with talking points and how-to’s about engaging 1:1, in small groups, and in contact with the media, we can spread our POV.

That is our best shot at moving the history of autism beyond the rut that it has been in Ever Since Bettelheim: a perpetual search for the next sure-fire silver-bullet cure. And we need to do that, in order to get resources directed to where they are really needed, to support the quality of life and ongoing growth and development of our kids.

— Phil

— added by Phil Schwarz on Monday, May 22, 2006 at 2:32 am

It’s been hard for me to come up with the response I am looking for.

The bottom line is this:

Your article made me feel good and that video did not.

I really think, though that we are the wrong audience for that video. I’d like to think it was made with the intentions of raising money for Autism research. I think they are pleading with charity donators to understand that sometimes life with Autism isn’t always a picnic and just because it isn’t a terminal illness, it is still not all that easy. We all know this already so like I said, we’re really the wrong audience for that video.

I also think the Wrights are still in kind of that angry phase over their grandson and I think that feeling comes out uninentionally through their website.

— added by Mary-Ellen on Tuesday, May 23, 2006 at 8:00 am