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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Saturday, September 22, 2007

 

Another Autism "Story" -- Jenny McCarthy



I am in the grocery store line, and yes, I heard that Jenny went on Oprah to talk about how diet and biomed "cured" her autistic child (who still flaps by the way). "Fighting for her Autistic Son," says the People Magazine headline. My stomach clenches. Oh no, I should be used to this by now, I think. Another "devastating" article that talks about autism as a disease -- that can be cured with medications and therapies. I sigh. I reluctantly buy it -- like a compulsion. I would prefer to ignore it. I can't.

The story starts off the same. Every parent is shocked, worried, faces fear. The beginnings of our stories are almost always universal, and there is nothing wrong in stating how something effects us. But, in the article, it doesn't really stop. We see the loving pictures -- son and mum look happy. Is this to show that you can love your child and still hate autism? Or is this to show that her son is "cured?" I am cringing while reading the saga, and the way its told -- could be People Magazine's fault in part. It is a gossip magazine, after all.

But here's where it really got to me. The interviewer asks about her relationship with Jim Carrey: "What about having children together?" To which she replies:

"[Exhaling] Let me take a drink of water on this. I'm done having children. I always thought I'd have at least four or five. But I got my a-- kicked."

Well I'm sorry, Jenny. You really lost me there.What do you think all the autistic adults think about that statement? Did you consider how you made an entire group of people FEEL? How would you like your mother to say that with you, she got her "a-- kicked?"

As a mom with five children, and four of them step children, they are a blessing. Adam is a gift and everyone of his brothers and sisters will agree. You can read Max's take on Adam in an essay he wrote nearly two years ago now: From Adam's World To Mine. Max is now a one-to-one for older autistic children at camp.

Adam has made our lives richer by showing us that we can, without difference and disability, often be living in our own little worlds, our boxes, our arrogance. Our willingness to open up to possibilities, and to learn from Adam and other like him, enables him to succeed and us to become larger. Adam is beginning to speak sentences, even though he does not speak much, and other days can't speak at all. He can spell, he is aware, and he is --God forbid -- autistic. Jenny's child is the same age as Adam. Adam could not do many of the things his same-aged peers did when he was two. But yes, even autistic kids grow and learn with love and support. Adam has had lots of support, but not always the typical kind we hear about. We struggled to find ways that specifically HE would benefit from -- and we had to weed through various therapies and therapists to make it work. Today, his teachers are commenting that he can do many things that the other kids cannot! While I agree with support, I also know that autistic kids learn which is why, at five, we might be hearing that kids are "cured," when they really are still autistic and learning.

As I said, I have no issues with parents who want to relay difficulties and challenges and be honest with how they feel. I do have difficulty in preaching unfounded methods, insulting a community of people by stating autism is "horrible," without qualifying that "horror" -- is it really within the person who says it? Perhaps this reflects a need for more self-reflection instead of blame.

I am also uncomfortable with separating autism from the person -- because while there are challenges in being any kind of minority, in this case a person with a disability, we should not undermine individuals just because they have a disability. We have to acknowledge that human experience is, in part, defined by who and what we are. I see parents who always want to separate that -- autism is just a label. Of course we are more than our "label." Yet it's more complex than this. The architecture of our lives is effected by both our environments and the way we were born. So why are people really saying this? Because they believe autism is awful? Because they are afraid of the stigma? I am always curious why people think they can separate autism completely from the person. We can't take deafness away from the deaf person and the way deafness influences their experience the world. We can't do it for blindness, physical or any other disability.

Now, let me conclude that I wonder if Jenny would still have children if she saw this video: Neurotypicalism Every Day by Christschool. Of course, it is a response to Autism Every Day, the unfortunate and poorly thought-out Autism Speaks' video. It just goes to show that if you put a certain kind of lens on something, you can yield a certain kind of result. Typical children look "horrible" to me here. They have melt-downs and geez -- parents get divorced over them. If I saw this video, I would NEVER want to have a neurotypical child:


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29 Comments:

Anonymous mcewen said...

I do the label thing. Why?

Services of course but probably because I reject the stereotypes, coupled with 'this label doesn't define who my children are.'

How could it, same diagnoses and two completely different individuals. The 'spectrum' bit always seems to play second fiddle, whereas 'spectrum' is far more telling.
Best wishes
p.s. I shouldn't worry about the book /magazine article too much 'celebrity' stuff is usually fairly short lived.

9:23 AM  
Blogger A Bishops wife said...

I will just say that the "Oprah show" and just the whole isea that rich, beautiful. millionare moms with autistic kids have some sort of "enlightenment" and special knowledge to share with us "little people" upsets me greatly.

9:26 AM  
Anonymous Anonymous said...

Thank you so much for writing this. I've been struggling with the Jenny McCarthy thing (I saw the Oprah episode) all week and an unable to express myself with your eloquence.

karen in ca

10:01 AM  
Blogger Casdok said...

Well said A Bishops wife!

10:42 AM  
Anonymous farmwifetwo said...

You know better than to read that stuff... :) I saw the article in the grocery store this morning and showed it to the clerk while we were chatting (rural Ont - groceries are not quick) - my boys were with me - and said "don't believe all the crap that you read".

I use the label soley for services and when someone gives me that "WT?? is wrong with your kid" look. Not the curiosity questioning one, but the rude one with the comments. A "the child has autism" shuts people up quick.

The OT superviser from CCAC told me the same thing. That in her opinion labels were a waste of time. That children should be assessed and their difficulties - speach, OT etc - simply worked on. That label's were no more than an excuse by gov'ts and school boards not to extend services to all.

She's right too.

S.

10:45 AM  
Blogger Estee Klar-Wolfond said...

I want to share you a comment I am copying from another blog that linked to my post today. It is from a woman named Susanna and it is a very worthy read:


Autism And Other Disabilities
Dear Karen,

Thank you for sharing this article with me. I have 2 friends who are adults with varying degrees of autism, and both are university graduates. I am also writing to let you know I saw the Jenny McCarthy interview. For my friends, none of the treatments, etc. they got had anything to do with the diet, or even "mommy instincts." Jenny really didn't do a thing for me. Her story makes me think of my own disabilities. I have Cerebral Palsy, DID, and Discalcula.

None of my disabilities have cures. To hear Jenny say that her son will always be in recovery made my stomach turn. She really has no idea. Moms in general can't handle people like me or anyone with a disability. They eventually get to a point where they expect their children to be "cured" "normal" and "able bodied" just like them. I have news for the moms of the world with these expectations. Personally, had I not been born with my disabilities, I would not be who I am today. I would not be accepting of others, myself, or educated in the way I am. Moms and others over time have told me there are people worse off than me. They tell me to look at what I've overcome. And honestly, it doesn't change how I feel. I really don't care about those who are worse off, or what I've overcome. It's because I will never be "better" or better than anyone else. I am equal with peers. I make mistakes. I have good and bad days. And I wouldn't trade any of this for a lifestyle of "able bodied-ness".

Jenny McCarthy, like other moms, needs to realize that we children, young and old, will never reach the expectations she expects. I am happy with my life. And so many in America want to find cures for all of these things. For once, listen...maybe your children are happy with who they are. After a dozen surgeries, therapies, etc. I may have bad days because of my past, but it doesn't change how I feel today. I'm happier than I have ever been because I simply let the other people in my life go. I don't care what they think of me, what is said, or how people act. They have the right to do or say what they want, but I have the same rights.

Everyone is just focusing on Autism right now because it's been made huge by the media...if Cerebral Palsy and DID were made to be the same way, you'd hear about my story too. But unfortunately, this country on the whole has no idea what I am up against. I share this because I know what it's like to grow up, go to school, graduate, and go to a university, graduate, find jobs, and get let go, ultimately living off the government.

The key to remember is I am happy with all this. I don't care what others expect now that I am in my 30s. It's time for parents of all children to realize the children need to live their own lives. Parents can't do everything. The world will always think me different. But I don't care. I'm human. Autism, CP, DID, MS, MD, and ALS are just a small part of who we are. If you look deeper, you'll see what I see. Human beings. And ultimately, happy human beings at that.

I know autism isn't going anywhere. But neither are the above mentioned. And the society we live in needs to accept us just as we are. Thank you for letting me post this, and for reading it, with hopefully, an understanding heart. Just FYI...my two friends with autism are doing well in life today. They were honors grads, and are now living on their own, working, and doing other things that make them happy. Kind of like me. We accept ourselves, and throw out the word "normal" because we will never be "normal." We are who we are.

Sincerely,

Susana

11:29 AM  
Blogger Estee Klar-Wolfond said...

Follow this link to find Susanna.

http://heathadahlin.livejournal.com/friends

11:32 AM  
Anonymous farmwifetwo said...

My husband and I had a discussion not too long ago. He said to me "what's going to happen to them". He was quite upset and felt like he'd failed somehow.

The answer is the same as for all children, I have no idea what the future might bring.

My #1 goal is that they enjoy life. My #2 goal is life long learning so that they may enjoy those parts of life that interest them the most.

OK, it's toilet training the youngest.. but hey, I'm still a Mom :)

I just got "Scoop??" (bob the builder). Need to help him (the little one) find his toy and live with autism.. not for it.

Wonder if he wants to go outside?? Stupid question... want to guess how long it'll take him to put on his shoes.... :) You noticed I said "him put on his shoes".

S.

12:09 PM  
Blogger Camille said...

Thank you, Estee.

I'm just so stunned that this woman who has demonstrated such poor judgement over and over, and so little understanding of humanity and medicine (autistic children are crystal children, you treat them differently because they are magical and in contact with angels ...or somehing) dares to give advice, and right on cue... it's bad advice. Really bad advice, and abusive talk about autistics. It's just so sick compared to what the autistic adults have to offer, a complex message, but at least an ethical one.

If Jenny looked different she wouldn't be on the cover of people. If her son wasn't so cute, he wouldn't be on there, either.

On 20/20 it said that Jenny gave birth to her son who gave birth to her new career as a writer. I wonder how much she sees him as a child and how much as a ticket to attention?

1:45 PM  
Anonymous Anonymous said...

I've been reading what Jenny has to say, and actually she's a little less awful than you might imagine. In the Q&A section she contributed to on Oprah's site, she does discuss biomedical treatment - but also mentions RDI. She admits that her child still has significant issues. And she makes the point that every child is different.

I've also been reading her book. Unlike me, at least, her son has had some terrifying physical symptoms including major seizures - and she's been in and out of the hospital an awful lot. I certainly never dealt with that, so never really perceived my son as "ill," since quite frankly - he isn't!

While I agree that "celeb mom as expert by virtue of her celeb status" is incredibly annoying, it could be a whole lot worse. I had heard rumors that she'd be touting magical gemstones and such - and actually, she's not!

Lisa Rudy
www.autism.about.com

3:13 PM  
Anonymous Anonymous said...

Thanks so much for saying what I have been struggling with for the past week. I've had about 4 well-wishing colleagues telling me about Jenny McCarthy on Oprah, and how I should really not let her be vaccinated and put her on a lactose-free, gluten-free, wheat-free, fill in the blank-free diet. They're completely missing that my child has grown into the creative, artistic five year old she is today, which likely due to her autism. The fact that she has a hard time expressing herself with language is something she will accomplish in her own time. It's like mcewen said, the spectrum part is the most important, and yet it continues to be lost. These children are gifts to us to open our eyes to see the world differently.

6:18 PM  
Anonymous Michael said...

God bless you and Adam. But you are not Jenny & her son is not Adam. She got her a** kicked. So what is the problem with her saying so & making a decision in her own life about whether or not to have more children? I don't see how that is a reflection on yourself or any adults with autism.

12:56 AM  
Blogger Estee Klar-Wolfond said...

Michael,

I do not have a problem with Jenny's choices. You are absolutely right -- I am not her and yes, everyone has their own way of coping.

But we don't just exist for ourselves -- especially when we go in the media and talk about something. The responsibility we undertake by publically speaking is something different. The fact of the matter is that we parents hear about this all too often, and the fact of the matter is that the media eats it up.

Thankfully, there is literature out there that talks about the positive aspects of how people learn to live with disability and how families become stronger. There are also studies, and I might talk about that in a future post. It is so important that families learn of this because disability and autism is forever and we need to make the best lives possible for ourselves and our children. "Fixing" autistic kids is a dangerous and potentially harmful way of thinking and going about things. It is harmful to a child's view of themselves too.

There is a way to discuss challenge, but also the gifts. It seems to me that maybe Jenny is listening to the cure people (and we all do at first as we are in the fight mode when we first encounter shock of diagnosis). As her methods to autism are not proven, we do know that many parents will run out and try the next best thing -- often many of these approaches are harmful to the child.

We need individuals and media to take more responsibility to report that any method that is not proven should not be tried by another parent. People Magazine had such a caveat, but perhaps the media needs to start reporting of the cases of deaths by chelation therapy.

As a parent, it is very annoying how many people call me and tell me that "TV causes autism," or "I should try this and this vitamin" or whatever. It's tiresome and ridiculous. This is what Jenny's article will cause among the public. It will not only cause others to think like this, but it will cause others to think that autism is a disease that can be cured. It is not.

All children and parents should be respected as they are. Parents need the support to go through this, and the media and these kinds of stories aren't helping. THey are adding to the stigma that autistic AND other disabled people face in our society right now.

Hillel once said:

If I am not for myself, who will be for me?
If I am not for others, what am I?
And if not now, when?

I like the "others" part. When we talk, we can talk of ourselves, yes. But when we talk publically, we must consider others.

5:38 AM  
Anonymous Elissa said...

I have stayed fairly clear of the hype over Jenny McCarthy. I do have to say that my son is on a wheat and dairy free diet though. We are not looking to cure him or change him by any means we know that his autism is part of who he is. His autism hasn't gone away, but his aggression and hyperactivity certainly have settled somewhat. I guess you take from things what you like.
Cheers, Elissa

5:50 AM  
Blogger Estee Klar-Wolfond said...

Hi Elissa,

We tried that on Adam for nearly a year when he was first diagnosed. We trialed him then off the diet, and saw no difference. So every autistic person is unique, just like the rest of us, it seems.

Adam is Adam and I am happy for what he is and what I got as a mom. If one day he finds (usually as an adult individuals find this out -- autistic and non autistic) out that something doesn't agree with him, then he will know not to eat it. But it really has nothing to do with autism, it seems. It seems that MAYBE (I have no evidence to support this so it's just my theory), that some individuals are more sensitive ...period. For an autistic person, the feeling of discomfort may distract them or manifest in a type of "behaviour" as a result of discomfort. But we need not specifically say that diet and autism are directly related, as we do not have proof of it at this time.

6:12 AM  
Blogger Melinda said...

very well said

1:26 PM  
Blogger Lynne said...

Regarding JM's comment that she got her ass kicked, you might want to read the book. She is not just commenting on her child's autism but that she was constantly in fear that he would die. They couldn 't stop the seizures, which in some cases lasted for hours. She was afraid to sleep lest he go into cardiac arrest again. Doctors didn't know what was wrong with him and his medication was making her child psychotic and self injurious, not to mention not remediating the seizures.

Living in fear that your child might not make it to the next day is life-changing trauma and yes, could be referred to getting your ass kicked without any disrespect to others who have kids with developmental or physical disabilties.

Also, JM is not married. So you might want to cut her a little slack on not being ready to have another baby.

1:30 PM  
Blogger Joseph said...

How would you like your mother to say that with you, she got her "a-- kicked?"

Well, I can't say that wasn't the case.

4:43 PM  
Blogger Dadof6Autistickids said...

I found an 'Autism guide' for parents and teachers on the website of the National Education Association (NEA). It has a LOT of good info that parents should make sure their school district and teachers of your children have AND use. I thought you and or your readers would find it useful.

I have more details and the link on our blog.

http://autismbitestheblog.blogspot.com/

Good luck!

11:19 PM  
Blogger Estee Klar-Wolfond said...

Joseph,

LOL! I actually can probably state the same. ;)

I find the comments really interesting here and thank everyone. Again, everyone has a right to feel what they feel. And yes, Jenny's son had extra challenges that if I were in her shoes, would be more frightening for me too. When I read the article, my reaction was also based on the tiresome expectation that too many parents talk about the challenges and "devastating autism," when we MUST go on and support each other and the children we have. I know parents who have eplieptic autistic children too, and yes, it was challenging as they tweeked with medications and had to face their fear. And they did. And they still see (one family I am specifically thinking of now -- exceptionally strong and even more positive than myself) their two autistic children as whole, complete and I think, joys. They have played with Adam. Although we all face the challenges, we choose the words that we know will not slant the way others view of children -- or maybe they will even read what we have had to say about them.

This blog is about celebrating human spirit. You can still do that and respect autistic people as well as the challenges that parents face. We can celebrate more when we reframe our expectations.

7:47 AM  
Anonymous Bonnie Ventura said...

I took the "a-- kicked" comment to mean that Jenny discovered she wasn't as capable of dealing with the responsibility of motherhood as she had thought.

As for the wheat and dairy free diet, there's a significant number of children in the general population who are sensitive to wheat and/or dairy. Just by random chance, some of them are autistic. It's reasonable for a parent to try a different diet if a child appears to have digestive problems, but parents shouldn't assume that digestive problems are caused by, or part of, autism.

8:26 AM  
Anonymous Erica said...

what worries me the most about Jenny claiming her son is cured and that autism is curable is future discrimination against my kid. If people believe that autism is curable, then by default the uncured kids must belong to lazy and selfish parents who wouldn't cure their kid. not true!!!!! i'm afraid it will affect services and perception of autism as a valid disability. i could be overreacting though. I have dealt with so much discrimination and stupid comments over the years some even bordering on blame. here comes millionaire mom who admits in People that she does what she needs to to sell more books to pay for her sons really expensive in home therapy that the majority of us cant afford but she is paying for this therapy on the backs mostly of autism parents who buy the book but cant themselves afford the therapies her son gets. now her story will be held up as what every parent should be able to do. i'm frustrated, I shouldn't be rambling on your blog!!

9:48 AM  
Blogger Estee Klar-Wolfond said...

Erica,

You're not rambling. I agree with you. It is discrimination. We do need supports and services that perceive autistic people as valuable contributors to society as autistic people and develop those supports and services from that principle.

9:59 AM  
Anonymous Anonymous said...

I have just read Jenny's book. Her son had an extremely weak immune system along with a leaky gut and an excess of yeast. When they improved these things his seizures and fevers improved. There are some children with autism that do legitimately have symptoms like constipation, diarrhea, bloating, etc...so of course the diet is more likely to help them. I noticed Jenny did not mention sensory issues, trouble sleeping, trouble eating, and a lot of other symptoms associated with autism. That may have made it easier to see improvement.

However, some children (like my own son) do not have these physical issues but do have a lot of more complicated symptoms and developmental struggles from autism. My son is very much affected by autism but he does not "live in a fog" and is not totally "unaware" as some people describe. It is much more unlikely that the change of diet will help these scenarios.

Also, my teenage sister has asperber's and she has been on the GFCF diet for several years, since she had a urine test showing that these foods were not processing right in her body (leaky gut). When she has even a tiny amount of dairy or wheat she cannot think straight and is in a moody fog. She herself chooses to stay on the diet because she does not feel mentally well without it.

Bottom line is that autism takes many forms. Some are more complicated than others and some seem more biologically based and are better served with these kind of treatments than another form of autism that doesn't have an identifiable physical reason. We all have to choose to help our children learn and grow with the methods that fit their needs. And as parents, we know best. We can't let ourselves feel judged by those that assume we are not making all the right choices to "fix" our children. All we have to do is help our kids make the most they can out of the unique life they have been given.

12:52 AM  
Blogger Elisheva said...

I noticed you did not post my comment. Nothing to say in response or are you just backlogged?

10:51 PM  
Anonymous Laura said...

FANTASTIC post. I, too, get so tired of all the horror stories about children with autism and how autism destroys families. I just want to shake some of these parents and tell them, wake up!! You're wasting precious time, childhood years that you won't get back, obsessing over the fact that your child has autism. Figure out how to live with it and move forward!

3:48 PM  
Anonymous Anonymous said...

As a father of a severely autistic child I am forever bewildered by the fact Ms. McCarthy's son was two when he was diagnosed, but by the time he was five, she had already written a book, hopped on a zillion talk shows, gave speeches and is now in the process of making a movie about families raising children with autism. If this isn't a fraud, I don't know what is. Additionally, for this woman to say her child's alleged autism "kicked her butt" is an insult to the thousands of families who have spent years dealing with this disorder, but have still managed to love their unique children, despite not being "healed" in the standard McCarthy extols. The brutal reality is this child never had autism and that is why he was healed. For the rest of us, autism isn't something we have to beat ourselves up over, it is the way our children are, and we love them, despite not having been on Oprah and telling the world off. Sad. Outrageous. Makes me wonder how gullible the public really is. I think McCarthy is doing a great harm to children with autism.

3:39 AM  
Anonymous Anonymous said...

If Jenny McCarthy really cared about children with autism and helping to "cure" them of this "terrible disorder", would she really charge hundreds of dollars to share her ideas on video? Like many have said before me all of this just seems to be a new money making/celebrity enhancing opportunity for Jenny and sadly her young son.

10:36 PM  
Anonymous tony kerr said...

I was born witg Autism in 1959, and did'nt speak untill I was 7. I grew up in a home for retarded children till I was 7, but we could all communicate through sight,smell, touch,hearing and raw nerves much clearer than I can to this day. I feel a lot of people miss the boat when judging a persons progress through their ability to communicate in a very limited way that is most common. Why is the emphasis on the person to change to the current world, when more should be done to try and understand how it is in the Autistic world? Autism has nothing to do with intelligence, it has everything to do with the way we process and display that information, sometimes to the betterment of mankind. hanks, Tony Kerr.

6:25 PM  

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