Saturday, July 10, 2010

The Ugly Face of Autism

I agree with Kim Stagliano absolutely. Her latest post, in its entirety, would make an excellent choice for an Autism Speaks advertisement. All the essential ingredients are there:

  • A picture of a beautiful autistic child engaged in an interesting, meaningful and no doubt productive activity for her—clearly delighted to no end.
  • A hovering, disapproving parent describing the entire tableau as “pain,” bemoaning the family's autism fate to the entire world, and wishing for someone—anyone—to do something—anything—to bring this horrible ordeal to an end.

Yes, that captures the ugly face of autism in a nutshell, and Autism Speaks would do well to consider it for its next public service announcement. Now if we could only get Autism Speaks to sponsor some form of cure against the Ms. Staglianos of the world (it can be biomedical, pharmaceutical or behavioral—I really don't care) I might find myself supporting that organization's eradicating mission.

28 comments:

Kim Rossi Stagliano said...

Hi, I'm Kim. I don't know your name. I think you've missed my point. My Mia will need housing. Trained staff to help her when I'm gone? This isn't about calling autism "ugly." It's not about "cure" either. It's about a whole lot of kids who need more than ads that say nothing that will help any of our loved ones - regardless of where they are on the spectrum. Autism Speaks has spent countless dollars and few on the spectrum from my Mia to the John Robison's of the world have benefitted. Awareness isn't enough. We need action - and yes, I think we need alarm bells. It doesn't have to be disrespectful to people on the spectrum, but it should resonate in some way. Thanks for listening and for reading Age of Autism.

Yours in health, Kim, Proud Mom to Mia, Gianna (who turns 14 tomorrow) and Bella. Proud.

AUTISMOMMA said...

Wow....just wow!!!

Kim Stagliano and the "Ms. Stagliano's" of the world have inspired and helped THOUSANDS of parents of children with autism, myself included. But guess what, Alan? I've never even heard of you....Thank GOD!

Kim said...

Since when is it so bad to worry about your child who cannot function in this world as she should? It's a Mom's JOB to help her child develop into a responsible, tax-paying, age-appropriate adult. If Ms. Stagliano's daughter had cancer, would you be saying the same thing? CP? Shall I go on? Parents will fight for their children to be the best they can be. I applaud Ms. Stagliano and follow in her footsteps and fight for my son to be as well equipped to make it in this world by himself as he can. When you love your child, that's what you do.

Stephen Parrish said...

A cure against the Ms. Staglianos of the world? Like ethnic cleansing? I think you should phrase your disagreement a different way.

Alan Griswold said...

Mr. Parrish,

I will gladly change my choice of words as soon as the autism advocacy world changes its choice of words - I'm merely borrowing.

Jackie Cunningham said...

I must say I found your post rather insulting to ANY parent of a child (or in my case 2 children) with autism. I don't always agree with Age of Autism, but I subscribe and read their information because whether good or bad, they give it to us straight; much as Kim was willing to post this ridiculous "name calling" tirade of yours on the AOA page for all to see. I could clearly see Kim's message in her latest entry, yours however is completely lost on me. It appears you just need a forum to blow off some of your excessive hot air. Good thing no one knows who you are, or like me, cares enough to even click the "view my profile" button over there -->. Now I will return to my reality of raising 2 low functioning, non-verbal autistic sons ~ this will include the good, the bad and the ugly. Perhaps you should evaluate your own reality before you pass judgment on anyone else.

Anonymous said...

Kim Stagliano is a wonderful mother of three children with autism who has been in the trenches of hard work for all individuals with autism, no matter where they place on the broad spectrum nor where the belief systems of their parents or even self advocates lie.

You have jumped to inappropriate conclusions about her and I take great offense to your rude comment. You have helped no cause with this post on your blog.

Alison Davis
Another mother of three children with autism

Carolyn said...

I think your comment is not just over the top, but just disrespectful. As a parent of a son living with autism I'd like to ask that you be respectful in voicing your opinions. Ms. Stagliano is a parent, living 24/7 with three daughters who have autism. I can't imagine her world, but she inspires me because she is honest as well as respectful.


In voicing her opinion also, it just that and rightfully so. But please don't judge her, nor any of us for expressing an honest comment from the heart.

Respectfully,
Carolyn
Proud mother of Nicholas and Alexander

Barbara Fischkin said...

Who are you anyway?
Hard to find your bio. Not that I would spend much time trying..
Have you accomplished as much to help individuals with disabilities as Kim has...? Or do you just sit back, type and critize.

Laura Corby said...

I must admit, I've never heard of you or your blog before. I just read this post with my jaw dropping to the floor. Whether or not you like or agree with Kim Stagliano's writings is not even the point here. Your rhetoric runs much deeper and Kim just happened to be the "target of the day." I encourage you to ask yourself, what are you accomplishing for autism? Certainly nothing positive. There are enough people spewing hatred, shame and didsain around. Perhaps you might consider writing something positive or even just simply beneficial for the autism community.

Jennifer Merkel said...

I must be missing something...
Ms Stagliano's post made perfect sense, seemed relevant and was thought provoking. Your post...only made me go back and read Ms. Stagliano's post again to see what could possibly have driven you to such vitriol. I'm still confused.
However, reading her post a second time gave me even more insight. Thanks!

Lin said...

Perhaps if all indivdulas with autism were able to defend themselves and communicate as easily as......as......whoever wrote this, perhaps then we would not be in need of a cure. Until such a time, The Kim's of the world put themselves out there to protect and ensure the safety as well as futures of all those on the spectrum, regardless of their level of ability.


Lin
Sam's mom

anne said...

I am so very greatful to Kim Stagliano. She has raised awareness about autism with grace, dignity, kindness and a heaping dose of good humor. Thank you Kim! Kim, I am inspired by who you are and what you do for all of us who live with autism. Thank God I have never heard of you, Alan.

Anne (PROUD Mommy of two boys on the spectrum)

Anonymous said...

Agree or disagree it's your choice. Live her life and her message will be more clear and understood by you. There's a human mom here, wanting nothing more for someone to come up with a cure for her children and any others that may become part of the autistic population. Maybe you can't appreciate Kim's sarcastic wit and bluntness. She has a tell it like it is approach, no flowering it up here. Those of us who share similar experiences,read this and nodded our heads and thought yep, been there. Kim accepts other people's views on the subject whether or not she agrees. Please just do the same. No room for hate!
Keep on fighting Kim,
Sheila Marchetti

Jessica said...

I'm sure glad you haven't been able to rid this world of the biomedical element of the autism community. That community saved two of my three children from regressing into autism. Yes, prevented my children from developing into full-blown autism. My son started to lose words at at the ate of 3.5, started to forget how to walk. NO DOCTOR or PED knew how to help him. The ER on two occassions simply said he was fighting a "virus of an unknown origin." Gastro problems since birth etc.

The autism-biomedical community pointed me in the direction that saved two of my three kids - SCD and chelation. My kids are healthy and happy and I think EVERYONE needs to know that autism can be prevented and in many cases symptoms greatly reduced with biomedical treatment.

Jessica

Norton Gunthorpe said...

I think there are two different issues co-mingled here.

One is Mrs Stagliano's reprehensible support for a former and now thoroughly discredited Doctor and her promotion of some idiosyncratic Autism 'treatments'.

The other, that comes shining through from her post on the Age of Autism, is the love and commitment she has to her daughter.

And with it the implicit and entirely legitimate desire for her daughter to have an independent, productive and joyful life.

This self-evident humanity is somewhat tarnished by the the advertisement for her forthcoming book - but she's American and she's got bills to pay, so perhaps we can cut her a little slack on that count.

We all have our own experience of Autism: mine is equally dark as the Eeyorian Autism's Gadfly, and my family's, little different from Mrs Stagliano's, but without the perfect dentition and media smoozing.

Her natural and perhaps quite desperate desire to see her daughters as self-reliant and functional as herself, has led her down a rocky and thorn-strewn dead-end; the prospect of a few easy Book-bucks and loyalty to her friend, ex-Dr Quackers, keeps her there.

Let us hate the sin with all hearts and love the sinner. A mother's love brooks no confutation.

Alan Griswold said...

Thank you to everyone for taking the time to stop by and comment. I believe the tally is pretty much unanimous in opposing my post. I do hope, however, that as people were expressing their opposition, they were wondering in the back of their mind why Ms. Stagliano always filters out opposing views in the comments section of the Age of Autism blog … just something to think about.

You know, it's odd – when I suggest Ms. Stagliano could use a cure, everyone is outraged. But if I were to say that her daughter needed a cure, I would be praised to the high heavens. All the while, the photograph and its accompanying words about “pain” make it obvious that any problem must lie not with the person in the photo, but with the person taking the photo.

The third commenter asks if I would react differently if Ms. Stagliano's daughter had cancer. That's an easy one. Of course I would react differently, because cancer is nothing like autism. How do I know that? Well, look at the photograph. Kids in the throes of cancer look nothing like that, would not be nearly so delighted. Cancer makes you miserable, extremely ill, and has a high probability of killing you. Autism does none of those things. (Well, autism makes Ms. Stagliano miserable, but that's not the same thing.)

nhokkanen said...

I'm a fan of Kim Stagliano. I'm the parent of a child on the autism spectrum.
I frequently read complaints by adults on the spectrum criticizing parents of younger children who've written a bit about family life. However these critics forget that reading a few Internet sentences is not enough to ascertain even a partial sense of that family's reality. Sights, sounds, touches, tastes, smells, emotions -- all absent.
The criticisms end up revealing more about the writer's childhood experiences, which all too often must have been sad. But I'm not going to speculate further.
Those critics might be surprised to find that mothers of younger ASD children have open minds and sympathetic ears....

Anonymous said...

Children with severe autism do need a cure. My son isn't "differently abled" He has run in front of a bus to get away from a fly. YES, I want a cure for that.. I want to ERADICATE that.

He is physically ill. I want to cure that.

His autism is NOT your autism. When are YOU ND's going to figure that out? If my son was able to live his life like you ND's do I wouldn't want a cure. But he can't.
He can't do anything for himself. You are an ignorant fool.

Tara J. Marshall said...

Some people with autism are differently-abled. Some are disabled, in certain cases quite significantly. However, there is a difference between treatment and cure.

For treatment, we simply help a child learn how to communicate, to help control impulsive behaviors, and how to not react to situations in a dangerous way. This is doable, and ethical, and we are managing to do it for approximately 80% of children diagnosed with autism these days.

A cure is something completely different. It demands that the structures of the brain of a person with autism be completely rebuilt, that our neurology be completely rewired, and that our life experiences be deleted and replaced by those of someone else, someone typical.

Huh? You say. But this is the truth. We are the product of our experiences. You cannot change an autistic into a neurotypical just by changing the wiring, you have to change the entirety of who we are. We didn't learn how to tell the difference between a smile and a frown as young infants, how to reference our parents for permission to do things as toddlers, the social skills that are acquired in preschool and kindergarten... and the only way to "cure" an autistic entirely is to implant these experiences from someone else, to impose a whole new history and personality upon that person.

This is immoral, unethical, and wrong. If done wholesale, it is tantamount to genocide.

So yes, I oppose a cure, and view it as ultimately counterproductive. The way autistic people think can be valuable to ourselves and to society as a whole. This is NOT the same as opposing treatments to help autistic children become higher funtioning, which I am fully in favor of. In fact, I endeavor to do this every day, by doing speech therapy with autistic children, by helping parents learn about special diets that may help their children as they have helped me, and by fighting the negative propaganda of groups such as Autism Speaks, as well as by helping my fellow adults on the spectrum in a support group that I help run.

I don't need, or want, to be cured. Even when I spend 5 hours stimming when I get home from work and don't end up making dinner until shortly before I go to bed, and end up eating salads 4 nights a week because of that I don't want to be cured. Even when I'm dealing with my 3rd screamer of the day who is playing "Jaws" with the flesh of my arms between his teeth and threatening to break my nose with the flailing of his arms do I wish HIM to be cured. I just want to help him learn to communicate, so he doesn't have to be so frustrated with the world.

I work with the children who have broken caregiver's bones. I have two bite scars that show no signs of fading over 6 years after they were inflicted by two different autistic boys. And I STILL don't believe that they, or I, need a cure as much as we need people who are willing to work with us on communication, and willing to build a bridge of understanding.

Any questions?

Tara J. Marshall said...
This comment has been removed by the author.
Jack said...

Ms. Stagliano's Age of Autism post was not about her daughter's need for housing and staff to care for her in the future. It was about how terrible it was that her daughter enjoys toys not "right" for her age, and how she stares too fixedly at things she enjoys. Ms. Stagliano talks about pain, but it's not her daughter's pain she's worried about. It's hers. Her pain at not have a "normal" child.

Isn't this exactly the problem with these people? They confuse their self-pity at having a child that's "wrong" with legitimate issues of the needs of autistic people, like housing and assistance.

You're spot on with your comment about Age of Autism not allowing people to disagree like this on their own blog. Also notice the way the word went out for the Believers to flood the comments here, in their typical cult-like way. Don't let them find out where you work, or they'll try to get you fired like they did with David Gorski.

Norton Gunthorpe said...

Mr Griswold,

I am not opposing your post. I clearly supported what I took to be your implicit criticism of Mrs Stagliao's egregious behaviour with respect to Dr Wakefield and the promotion of patent quackery.

The lack of a Right to Reply on the Age of Autism (and many other blogs, for example Facing Autism in New Brunswick) is another justifiable criticism.

Karen said...

I think Kim's post was about the FUTURE of her children and children like them. You are obviously a person with communication skills. Her children, and many others, are not. My interpretation of her post is that AS does not put ads showing ASD children as having affect--they do find joy in the little things. But there IS pain in autism and to deny that is naive and condescending. SIBs are an example of that--you don't hurt yourself if you aren't in pain. The GI problems of some kids are PAINFUL and PAIN is not a part of health. The parents of these kids want the pain eradicated. And yes, they would like to have more communication and less "odd" behaviors, but their number one goal is to get their children HEALTHY i.e. NO PAIN. To say that cancer kids wouldn't look like that is also stereotypical. Many DO look healthy and happy. Cancer CAN kill, but so can Autism, just in a different way.

Alan Griswold said...

Karen,

I understand that your comment is well intended, but there are some problems with it.

For one, the “pain” you talk about is in no way related to the “pain” Ms. Stagliano put forth in her original post. What she did was put up a picture of her daughter obviously having a wonderful time at the Target and described it as “the pain of a stopped clock.” Since the person in the photo is clearly not in any kind of pain, it raises the question of whose pain Ms. Stagliano is describing, and it doesn't take much thought to realize that if there is any pain involved in this scenario, it must be emanating from Ms. Stagliano. I'm not sure if your discussion about SIBs and GI problems was meant to suggest that Ms. Stagliano is suffering from SIBs and GI problems, but somehow I doubt it.

Also, the autism-is-similar-to-cancer myth is cheap and easy to repeat, but almost every piece of factual evidence screams against it. You say “cancer CAN kill, but so can Autism, just in a different way.” Think about that statement for a moment. The life expectancy of a person diagnosed with cancer is considerably reduced from normal, but the life expectancy of a person diagnosed with autism is not. And if you count the percentage of people who die as a direct of their cancer versus the percentage of people who die as a direct result of their autism, you will quickly realize the conditions are in no way similar. I repeat: the autism-is-similar-to-cancer myth is cheap and easy to repeat, but almost every piece of factual evidence screams against it.

Anonymous said...

The only one sounding like they are miserable here is the person posting the blog. Your a callous person to think you can judge what is going on in this parents life, just because of a post she put up showing what happens in her world. Maybe one day if your lucky, they will find a cure for your ignorance.

Justthisguy said...

Dang, that mommyswarm is amazing, ain't it? Owhell, teh wimminz tend to do what they think all of the other wimminz are doing, so dinna fash y'self.

Aerin said...

Alan,

You are as entitled to your opinions as Kim is to hers. I don't know if there is merit in your accusation that Age of Autism won't allow comments that disagree with their viewpoints. I don't care. You crossed a line and voided any merit your own post might have had when you called for a cure to the Ms. Staglianos of the world.

To claim that you're just borrowing language from the autism advocacy world is a cop-out. You insulted an individual. Even if you think she's in the wrong, what do you gain by stooping to her level?

The only thing ugly around the autism advocacy world is the rhetoric. I doubt that my son, who is 6, wants cruelty (on anyone's part - I'm not speaking here specifically of your post) thrown around on his behalf.