Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

6/8/08

Is Jenny Really An Autism Mom--and Why Should We Care?

Why am I concerned as to whether or not Jenny's son really is autistic? Why have I bothered to spend a few hours researching various conditions for these related posts? There are several reasons. First, I am not attacking Ms. McCarthy, I am simply trying to put some pieces together and ponder some possibilities (perhaps even offer insight). She herself has said several times now that her son no longer has autism, and that neurologists tell her he never had autism.

If this is the case, then we autism moms/dads and the entire autism community have to ask: Why she is still putting herself in the public eye as "THE" autism mom who represents each and every single one of us? It is one thing to be an actress or other celebrity and use your fame to bring attention to a cause (child abuse, drugs, medical conditions like cancer, etc.) and/or raise money for reputable charities. It is entirely different to do interviews, public appearances, be in magazines, and write books about autism, when or if your child doesn't actually have autism. This is a matter of ethics as well, since profits are being earned.

Most concerning is that her message is one of "recovery from autism," proclaiming that she "healed" her son. Why should parents pay attention at all, and even gain hope from, her son's supposed recovery in light of her now saying a. he no longer is diagnosed as having autism and b. doctors now say he never had autism? If you maintain that a certain treatment or diet "recovered" your child, there had better be zero doubt that this child has that which you claim to have recovered him from.

How can Jenny McCarthy claim to be an "autism mom" or to have "recovered" her autistic child, if there's any possibility her son never even had autism? Why should any of us, and anyone in the public, listen to her? I think these are legitimate questions, and ones we all have the right to ask.


11 comments:

Camille said...

Jenny McCarthy has zero credibility. How could she let her child be diagnosed as a crystal child and herself as an "indigo mom" by a woman who passed Jenny and her son on the street? And how could Jenny run with that to the point of making money off of it through her website, "indigomoms.com" all the while writing a book about how her son had terrible seizures and had been autistic but by the time she showed up on the scene with him he was already cured. Isn't that interesting? She didn't show up in LA areas autism groups with him when he was a crystal child from what I have heard, and she went to be a leader of the autism idiocy world with a kid who was no longer autistic. How does that work?

I don't believe anything she says. Not that his heart stopped from a seizure, not any of it, until I see some kind of independent verification. She's not credible at all.

Maddy said...

For me [personally ] it's more that it makes everyone feel a 'failure' for not 'curing' their child.

I'd like a role model of a parent that accepts their child[ren] as they already are.

Oddly, online there are many, but for some reason their positions appear less popular.

Where can we find a celebrity that promotes this position?
Cheers

Bad mommy said...

Yeah, I have to admit - since I saw a clip of her saying that her son was completely cured by a GFCF diet, I have thought pretty strenuously "then he has celiac disease, not autism." I hadn't heard that it was a 20 minute appointment with some "expert" (of who knows what training and specialty, if any) that originated the "autism" diagnosis. Certainly explains a lot.

My own kid has varying diagnoses. One doctor said he's just oppositional (because he clearly was not low IQ, and this person thinks that dummies are autistic and normal IQ people are manipulative). Another said he's borderline IQ (er, I think that "expert" was borderline IQ). Another said "well, not autism - but PDD." Finally, another psych saw him who said after about 20 minute "I have no problem calling this autism, rather than PDD." Obviously, my son was having a bad day that day.

And that is the point: each of those people probably thought that they were seeing an accurate view of the boy, and they filtered that through their personal prism. I know some of those people were wrong; I'm not sure who (if any) is right. I call it PDD or mild autism myself, because it seems descriptive of most of my son's deficits and strengths, and because people need a reason why he behaves as he does (other than "Oh, I'm just a crappy mother who has no control of her child, and he's satan's offspring.") Plenty of people are going to think that regardless. Apparently one "expert" did!

And likewise, you have to work with what seems right to you in your heart about your kid. I know for me, when the OT talked about sensory problems and what she saw in both of my sons, it was the first person who had made sense to me since beginning the long, ugly road to a diagnosis of sorts.

But this particular person seems credulous. She doesn't seem to be taking a rigorous scientific approach to the whole thing. And she doesn't appear to be revisiting her initial assumptions based on the evidence as it evolved. And that is the only way to work with bad information: keep it in perspective, and watch. Afterall, atypical development is still development: our kids are always becoming what they are.

But under the circumstances that she describes, to make herself out to be some kind of a beacon to all "austim moms" out there??? Ridiculous and offensive.

Lisa Jo Rudy said...

Let's say that Jenny had actually taken Evan to a legit developmental pediatrician, and received a bona fide diagnosis which she then copied and put online for all to see.

And let's say that she was able to find a psychologist or other professional who would state, on paper, "Evan was autistic but is no longer autistic."

Would that really make Jenny McCarthy a legit spokesperson for all parents of kids with autism?

Seems to me that no one, no matter how legit their diagnoses, can possible speak for ALL in the autism community. There are plenty of parents and therapists whose kids are certainly legitimately autistic who, for example, have tried one or another treatment and it hasn't worked. Or who, like Stop Think, are less interested in cures than in finding the positive in their child.

Just some thoughts...

Best,

Lisa (About.com Guide to Autism)

Anonymous said...

I am a Mom of a 3 yr old with Autism. I was researching GFCF diet when I came across this blog. Just wondering have any of you tried the GFCF diet?

S.L. said...

Anonymous:
We personally have not tried the GFCF diet. My daughter has severe feeding difficulties & oral motor issues, she has a gtube (3+ years now). She is extremely picky, a mix of sensory, OCD, and behavioral issues. Eats only about 5 or 6 different things with any regularity and has a hard time eating/drinking. So, for us, GFCF is not possible to even attempt.

I do know people who have tried it, had some success and stayed with it, others who felt they saw some changes but couldn't continue it (for cost or convenience), others who have tried it & saw no difference. It's something that if you can feasibly try it, I would.

Basically, there's no risk involved in the diet. I would be EXTREMELY leery of any DAN! protocol (with 20+ supplements, injections, etc.). These are unfounded, ridiculously expensive, and have a risk of being harmful psychologically and physically.

The diet can be very expensive & it is a big commitment (if you follow it 100%). For example, I am in the South (for reference) and pay $5.00 for a bag of gluten-free pretzels, $5-6.00 for brownie mix. Your best bet is shopping at a Whole Foods if you have one nearby. Please feel free to email me at: stopthinkautism AT gmail DOT com

I am vegan (rest of family is not) and one child is dairy-free. So, by default, quite a few of our foods are GFCF. Also, I shop at the health-food stores (we do mostly organic), so I know what's out there as far as GFCF. I can give you some recommendations on good kid-friendly foods, if you like.

Best of luck.

S.L. said...

Camille:
How does that work?
The answer we are all waiting for. I agree with you.

Maddy:
Another good question. I am longing for that celeb. I have to say, much like I feel we (those who accept) are more of a silent majority (to borrow Kristina's word I think). We simply are going about our lives, and I imagine there are quite a few celebs doing the same. Raising & loving their autistic child(ren). It will be nice if someone does step forward to fill that role. And, I agree with the guilt factor too--it's ridiculous!

Bad Mommy:
Yes, the whole words came as soon as GFCF diet was started...really had me rolling my eyes. That would be the FIRST autistic child I'd ever heard of do that. Now, my daughter had a major seizure, and within a month went from being nonverbal to having words. Was it the seizure? Could be (actually, probably more likely a seizure can bring verbality on over the GFCF diet!!), but we'll never know. The point is, if we had changed her diet around that time, we'd applaud that. It's nuts!

Thanks for sharing your story. I agree with all your points. I especially loved,
our kids are always becoming what they are.
So very true!

Lisa:
Thank you for your thoughts. It is one of those scenarios that ultimately will never be resolved, that's the one certainty. And you are so right--just like autism is a spectrum, so are us parents! :)


Last ramblings to all:

It kills me that Jenny gets so much media attention to speak about autism, and the only message being sent is "vaccines are bad" and "recovery!" Services are sorely lacking, and it seems such a waste of time to have the public's attention and not talk about what's really needed in the autism community.

Karen said...
This comment has been removed by the author.
Karen said...

I personally do not appreciate Jenny McCarthy being the spokesperson for a child with autism. How can she say that just a diet can cure this? How can she give parents such false hope? I am the mother of a 6 year old autistic boy and I do not appreciate her comments at all. Now I hear her son was NEVER autistic? I don't get it. Let's talk about Holly Robinson Peete, who truly has an autistic child. I'm sure she would love to be able to "cure" her son by eating certain foods. That is a woman who should really be representing our community.

Chris said...

Such anger and resentment. I have a 7 year old child with cerebral palsy, she is fed exclusively with a G-tube, and she is considered "on the spectrum". Aside from not being able to walk or eat by mouth, her behaviors are what is really isolating her from her family and the outside world.

I'm just glad somebody is saying something. McCarthy is passionate and she cares. Whatever attention she gets will ultimately lead to more attention for autism and that's a good thing. Services are grossly lacking in this country - it's a disgrace - and that is one of the primary messages in her books... if you have read them.

Sure, she's seems a little wacky (even crazy) and potty-mouthed, but we all are entitled to react and live through the tragedy of the diagnosis as best we can.

She was doing just fine with her "funny" books and her big boobs. Do you honestly think this new direction of hers is for fun or profit?

If you are all so "accepting", then accept that someone had a better outcome that you did. Be happy for her. It's called a "spectrum" disorder for a reason. There is an enormous amount of variety in the severity of the condition and it's treatability. You all know that.

muebles madrid said...

I suppose every person must read it.