Can someone explain the Jenny McCarthy/Autism controversy to me?

[Home'scool]

A while back I skimmed Jenny McCarthy's book on her experience with Autism and her son. It seemed interesting. I know she has been on Oprah talking about it, etc.

 

Recently, though, I was reading an article on autism and when the subject of her and her books were brought up the parents had a very negative response.

 

The article didn't do a good job explaining why these parents disagreed so much with her and why they thought she was doing harm.

 

I have no opinion on this either way - I don't know enough about it - I just didn't know there was two such opposing views on this.

[Heather in Neverland]

:lurk5:

[DragonflyAcademy]

I think part of the controversy.. is that she feels that autism is treatable and even (in some cases) curable.. while there are others who feel strongly that children with autism should be embraced for who they are and not forced to change..

 

I'm over simplifying it.. It really goes very deep and both sides feel very very strongly about it..

[Alice]

Answering with some trepidation as this is always such a hot button. I don't have a child with autism but have read both of McCarthy's books on this topic as well as a few others by people who believe as she does that vaccines are one of the main causes of autism. I also read Paul Offit's book, Autism's False Prophets.

 

I'll try to avoid the whole issue of whether or not vaccines cause autism and what I thought of the books.

 

I bring up Offit's book becuase he has an interesting section where he talks to parents of kids with autism who do not believe vaccines are a cause. I can't remember all the details or the specific parents names and I don't have the book to look them up but what I do remember was that most of them felt that the autism community has become such that if you don't buy into the vaccine theory or into the idea of the cures for vaccine damage you are ostracized by the other parents. Some of the parents were angry that in their opinion the focus of coverage of autism in the media and autism research has become solely that of vaccines. Many of them feel there is more of a genetic cause or other causes that are now being pushed to the back burner by the more vocal people like McCarthy. I think bottom line was that they felt like many in the media portray her as a hero speaking for all parents with autistic kids and they did not at all feel like she represented them or that they had a voice.

 

One thing about McCarthy is that she is very vocal and out there. The feeling I got from Offit's interviews with the parents who didn't agree with her is that they felt like due to her influence/celebrity status there is little room for debate. Combined with the exposure she has received by being on Oprah and Oprah's huge popularity, I think people felt that it is difficult to have a true debate of ideas with her.

 

ETA: I remember the issue that the above poster mentioned coming up in Offit's book also. Several of the parents were very upset at the idea that their child needed "curing" or "fixing".

[amy g.]

I haven't read the book, so maybe I shouldn't post, but this is how I look at Autism.

 

It is a list of SYMPTOMS. The same symptom can and do result from very different causes. I'll use the example of a limp with leg pain. Someone with a strained muscle might find that heat and ibuprofen "cures" leg pain. They might go all over the country touting their cure. Someone with bone cancer might try it, and when their leg pain is not cured, they tour the country speaking out about what a quack the first person is because leg pain is not curable.

 

In our situation, my oldest was always different. When she was tested at 9 years of age, they said that she had Asperger's. When she was tested at 14, they said that she had classic Autism. Then her neurologist discovered that she had a sleep disorder that makes her excessively sleepy during the day. He put her on medication for the disorder, and many of her symptoms disappeared.

 

She lost the classic autism gait and clumsiness. Her speech is much more clear and less slured. She even interacts more with other people. Did the medication cure her Autism? When she is on it, she no longer meets all of the requirements on the checklist to be diagnosed. If she went off of it, she would.

 

I think it is simplistic for people to treat such a complex situation as either/or.

[mcconnellboys]

And I guess I'll throw in just to add that I believe that those on both sides of this argument are correct.

 

If you buy into the ideas presented in The Autoimmune Epidemic, and other books/articles about ever increasing problems with autoimmune "diseases", "conditions" (or whatever you'd like to call them) in this country, then this makes sense.

 

If there is a segment of the population that presents with genetic predisposition for autoimmune problems, then there are various chemical triggers that can contribute either to a gradual build-up of problems for them - or in the case of extreme insults - more immediate and catastrophic problems.

 

What we currently term "autism" varies hugely across a spectrum from extremely mild and highly functional to what we would term almost non-functional in our society. Similarly, those who present with other autoimmune related processes such as lupis or multiple sclerosis - on the one extreme - to psoriasis, eczema, and a plethora of other conditions on the other, vary widely in the presentation and severity of their disease, how it progresses over time, etc.

 

It simply makes sense to me that "autism" may be a genetically determined sensitivity to certain substances such that the body creates an allergic reaction type response. As with the other autoimmune diseases which are being studied, some people are more resistant to progress and severity of symptoms than others. Some develop devastating MS or Lupus early on - some not until they're in their 60's - and some never progress beyond milder forms of the diseases, while some succumb to them more quickly. Likewise, it seems that some develop devastating symptoms associated with autism when they encounter various vaccines - although upon further study it may actually be a variety of chemicals working in concert within their systems that are setting up this response.

 

So "Autism" seems to me to be a similar process occurring in the brain system, rather than in other systems of the body. Again, it is a much more severe reaction in some than in others. For some, as with those who experience severe, quickly progressing MS, there may be little that can be done. For others, there are promising treatment modalities that may help to repair the damage done to their brains if it is not too severe. Why not allow it to be tried to see if it is helpful on a case by case basis?

 

We simply know too little about the human brain, and too little about autoimmune conditions, to make hard and fast statements about what will and will not work for *individuals*, who are all unique in their chemical/genetic make-up.

[Tess in the Burbs]

I saw her in an interview once and honestly, if she helps one other parent then it's worth it to her. I think she realizes some kids won't respond to a 'cure/treatment' but she's out there promoting something that helped her son and perhaps her celebrity status will help her get the message out.

 

It's like the difference in hs communities...there are many groups of people doing it for different reasons...the secular groups don't want the Christians speaking for them and the Christians don't want another group to speak for them.....

 

get my point? some autism parents don't agree with her and are not happy she's promoting a 'cure' when in cases there is none.

 

again, personally I think she just wants to help others in her situation...

[JFSinIL]

I haven't read the book, so maybe I shouldn't post, but this is how I look at Autism.

 

It is a list of SYMPTOMS. The same symptom can and do result from very different causes. I'll use the example of a limp with leg pain. Someone with a strained muscle might find that heat and ibuprofen "cures" leg pain. They might go all over the country touting their cure. Someone with bone cancer might try it, and when their leg pain is not cured, they tour the country speaking out about what a quack the first person is because leg pain is not curable.

 

In our situation, my oldest was always different. When she was tested at 9 years of age, they said that she had Asperger's. When she was tested at 14, they said that she had classic Autism. Then her neurologist discovered that she had a sleep disorder that makes her excessively sleepy during the day. He put her on medication for the disorder, and many of her symptoms disappeared.

 

She lost the classic autism gait and clumsiness. Her speech is much more clear and less slured. She even interacts more with other people. Did the medication cure her Autism? When she is on it, she no longer meets all of the requirements on the checklist to be diagnosed. If she went off of it, she would.

 

I think it is simplistic for people to treat such a complex situation as either/or.[/quote

 

Yup - there are almost as many possible causes of the symptoms that get a kid an Autism lable as there are cases of autism, seems to me. My kid is one of the kids who improved on steroids and has to be on Depakote or he loses his language (he still acts silly and is definitely disabled - just a far higher quality of life on his meds). Years of intense ABA therapy did little to teach him until he was on the correct meds (neuro number three in three years! to get them!!). While some folks of similar kids I steered towards the same neuro for the same meds have seen improvement, some have not - some of them found their kids benefited from diet/major antibiotics/etc.

 

There is not black and white "this is THE CURE" for autism out there because there is no single "cause" of all cases of autism. Sigh. Makes it that much harder to know what to do for one's kid. I know of a couple local cases of parents who started their kids on the same meds as my son - SAW IMPROVEMENTS...then decided to stop the meds and use diet/vitamins etc. instead because it was "more natural". Their kids stopped improving Parents can not decide what will help their kid like that - they have to just about try everything and stick with what works. Some kids will respond to what McCarthy used - many won't. Some kids will respond to meds that help my kid - many won't. I hate autism.

[BamaTanya]

I hate autism.

 

Just had to chime in here. I hate it, too.

 

Having two dc on the AS, I have some opinions, but no answers. We tried lots of things. We're discouraged.

 

I just hate it.

 

I love my children, but I hate how autism makes them feel.

[sbgrace]

I think a lot of it comes from how she portrays autism in a negative light. There is a strong neuro-diversity community that wants that perception changed and those people seem to be the most vocal opponents to J. MCCarthy.

 

My issue isn't that. My issue is that it over-simplifies autism and brings a sense that if you do xyz your child will respond like hers. The cause isn't a few select things and you address those and get certain improvement. For many if not most it simply doesn't work that way.

 

And in the case of my son his underlying issue and improvement was from an area (a metabolic condition) that you don't hear much about and isn't mentioned in anything from her I've read. Yet it's very common in autism. So it frustrates me to see that people are led to believe that there is a particular set of solutions. What happens when those don't "work"?

 

Beyond that, I don't think there is an autism "cure" anyway. My son made dramatic improvement with treatment for his condition because he feels better. But underlying issues are still there--just not as obvious. Based on my reading of her story and about her son, I dare say her son is the same way. It's just that his underlying issues were different than my kid.

[Laurie4b]

A while back I skimmed Jenny McCarthy's book on her experience with Autism and her son. It seemed interesting. I know she has been on Oprah talking about it' date=' etc.

 

Recently, though, I was reading an article on autism and when the subject of her and her books were brought up the parents had a very negative response.

 

The article didn't do a good job explaining why these parents disagreed so much with her and why they thought she was doing harm.

 

I have no opinion on this either way - I don't know enough about it - I just didn't know there was two such opposing views on this.[/quote']

 

One thing that happens to any parent whose child's special needs can't be seen (as they can for physical disabilities) is that they are constantly judged for their child's behavior and their parenting. They must constantly advocate for their child and try to explain their child to the world and vice versa. So if someone is trumpeting a cure and makes it sound like THE cure, then it makes things harder for parents because it increases public misunderstanding. Also, if the cure is based on anecdotal information, then it can raise and then dash hopes of parents, which is additional pain in a struggle to try anything that can help.

[BMW]

You know what I hate?? I hate that it costs more money than I can pay to have my son evaluated!! I have been referred to specialists who, spending a few hours with me and my son would probably be able to help me on my path. I had one such specialist, very highly recommended for her work, say, "You can make payments, but I will not discuss my findings or my report with you for however long it takes you to pay the balance off... then we'll talk." So, we didn't go to her.

 

I understand that people need to make a living... but... really?

 

And another specialist was "oh so glad to meet me (over the phone) and get to know me and hear about my son..." until he learned that insurance didn't cover his services and that I'd have to save up money to pay the bill... Then he didn't return my call.

 

That's what I hate!

[BamaTanya]

You know what I hate?? I hate that it costs more money than I can pay to have my son evaluated!! I have been referred to specialists who, spending a few hours with me and my son would probably be able to help me on my path. I had one such specialist, very highly recommended for her work, say, "You can make payments, but I will not discuss my findings or my report with you for however long it takes you to pay the balance off... then we'll talk." So, we didn't go to her.

 

I understand that people need to make a living... but... really?

 

And another specialist was "oh so glad to meet me (over the phone) and get to know me and hear about my son..." until he learned that insurance didn't cover his services and that I'd have to save up money to pay the bill... Then he didn't return my call.

 

That's what I hate!

 

We have friends who paid big $$$ (up front, of course) for a 2 hour evaluation, only to find the psychologist come out after 20 minutes with an "I can't evaluate ____" and a shrug.

 

WHAT???

 

I don't know how all professional services work, but it seems that, if you pay for an evaluation, you get an evaluation OR your money back. They were asking for a CURE!

[Niffercoo]

O So if someone is trumpeting a cure and makes it sound like THE cure, then it makes things harder for parents because it increases public misunderstanding.

 

This is exactly my problem with Jenny McCarthy. Most of my friends and extended family members don't care to understand autism and how it affects my children. However, as soon as Jenny McCarthy hit the talk show and popular magazine circuit, all of a sudden everyone was an 'expert'. I started getting emails from my grandma or my husband's aunt asking if I've ever heard of "that autism diet that Jenny McCarthy used to cure her son." I spent time trying to explain that I had heard of it, and had tried many dietary interventions in the years since the children were diagnosed, but that we didn't see any results. I was met with more judgment that I didn't want to do exactly what Jenny did.

 

I believe in the future we will find out that there are numerous causes (and as a result, numerous treatments) for Autism Spectrum Disorders.

[Audrey]

I think part of the controversy.. is that she feels that autism is treatable and even (in some cases) curable.. while there are others who feel strongly that children with autism should be embraced for who they are and not forced to change..

 

I'm over simplifying it.. It really goes very deep and both sides feel very very strongly about it..

 

 

This seems to be the crux of the issue when I've heard parents discussing it. Also, some claim that her assumption that autism is curable gives false hope to people, and that when it doesn't work, makes them feel even worse.

[funschooler5]

You know what I hate?? I hate that it costs more money than I can pay to have my son evaluated!! I have been referred to specialists who, spending a few hours with me and my son would probably be able to help me on my path. I had one such specialist, very highly recommended for her work, say, "You can make payments, but I will not discuss my findings or my report with you for however long it takes you to pay the balance off... then we'll talk." So, we didn't go to her.

 

I understand that people need to make a living... but... really?

 

And another specialist was "oh so glad to meet me (over the phone) and get to know me and hear about my son..." until he learned that insurance didn't cover his services and that I'd have to save up money to pay the bill... Then he didn't return my call

 

That's what I hate!

 

 

:iagree::iagree:

 

We don't have insurance, and right now we're saving up for a $2000 evaluation for my son. Who knows what therapy and/or any meds he might need will cost...

[tex-mex]

This seems to be the crux of the issue when I've heard parents discussing it. Also, some claim that her assumption that autism is curable gives false hope to people, and that when it doesn't work, makes them feel even worse.

 

Agreed. My main issue is we have (once again) a Hollywood celebrity use her power of media to get folks unaware of Autism to believe she has the "real" answer. I don't blame her fighting for her son... but don't go out and make baseless medical claims. Autism Spectrum Disorders are wide ranging and we still don't know HOW the brain works.

 

Case in point: we have an X-linked rare genetic (metabolic) disease in the liver. One of the co-morbidities of this disease is Autism. But primarily due to the fact excess ammonia builds up in our bodies as a chromosonal defect. That immediately affects the brain. Go to one of our medical conferences and see how many kids have mild-severe Autism. But the big culprit is really our liver (Urea Cycle). I have no ill will against Jenny or folks who say immunizations cause Autism... just wish they did their homework and see there are a wide variety of Autism sufferers (technically, I'm Aspergery... son is too. Sister was severe Autistic. Mom was mild. But we all suffered from the rare genetic disease. Autism was merely a symptom.). Who knows. Maybe 50 years from now, they'll see the book Jenny wrote and other pseudo-science thoughts as how we see the 1900's pharmacists peddle coca-cola with cocaine in it as a cure-all tonic?

Edited September 5, 2009 by tex-mex

[newlifemom]

Maybe 50 years from now, they'll see the book Jenny wrote and other pseudo-science thoughts as how we see the 1900's pharmacists peddle coca-cola with cocaine in it as a cure-all tonic?

 

 

At least that made you feel good for a while.

[jensway]

You know what I hate?? I hate that it costs more money than I can pay to have my son evaluated!! I have been referred to specialists who, spending a few hours with me and my son would probably be able to help me on my path. I had one such specialist, very highly recommended for her work, say, "You can make payments, but I will not discuss my findings or my report with you for however long it takes you to pay the balance off... then we'll talk." So, we didn't go to her.

 

I understand that people need to make a living... but... really?

 

And another specialist was "oh so glad to meet me (over the phone) and get to know me and hear about my son..." until he learned that insurance didn't cover his services and that I'd have to save up money to pay the bill... Then he didn't return my call.

 

That's what I hate!

 

I can understand your frustration BTDT. I have home-schooled DS since kindergarten. I choose to look into the public school system for evaluations for DS. They have very well qualified evaluators and that's all they do is evaluate children.

 

I requested evals, they were done and free.:001_smile: He is re-evaluated every 3 yrs. Their reports/evals. were very thorough. I have found these educators to be very helpful. Since then my DS has been receiving speech therapy from public school.

 

I don't know where you are at, I'm in Texas and this has worked out very well for us.

[Audrey]

You know what I hate?? I hate that it costs more money than I can pay to have my son evaluated!! I have been referred to specialists who, spending a few hours with me and my son would probably be able to help me on my path. I had one such specialist, very highly recommended for her work, say, "You can make payments, but I will not discuss my findings or my report with you for however long it takes you to pay the balance off... then we'll talk." So, we didn't go to her.

 

I understand that people need to make a living... but... really?

 

And another specialist was "oh so glad to meet me (over the phone) and get to know me and hear about my son..." until he learned that insurance didn't cover his services and that I'd have to save up money to pay the bill... Then he didn't return my call.

 

That's what I hate!

 

I hate that for you, too. It shouldn't be that way. At. All.

[newlifemom]

And in the case of my son his underlying issue and improvement was from an area (a metabolic condition) that you don't hear much about and isn't mentioned in anything from her I've read. Yet it's very common in autism. So it frustrates me to see that people are led to believe that there is a particular set of solutions. What happens when those don't "work"?

 

QUOTE]

 

May I ask what this condition is? Was it discovered at birth? I am still trying to figure out ds and never know how far to take it. [intervention wise that is]

[specialmama]

some autism parents don't agree with her and are not happy she's promoting a 'cure' when in cases there is none.

 

 

I'm one of those parents. I am repulsed by the lady and I think she has done a huge disservice to the autism community. I know many, many parents in my autism circles who have been conned into spending tens of thousands of dollars in "cures". Con artists prey on desperate people, so there are plenty of parents buying into xyz. It is very sad to see these parents after the wreck, their hopes dashed, their embarassment paramount. They feel like fools, then question the love they have for their child. They feel so let down, so helpless, and wonder why they didn't just love their kid the way he was. It's a dangerous roller coaster ride, for already stressed out parents.

 

I try to have a balanced view. My son is special just the way he is. I will investigate a therapy, perhaps try it, evaluate it, continue or discontinue as we see fit, always measuring the results. I will NOT sit back and do nothing for him. I am hopeful for his future and there are many people praying for him. But I also try to balance that with realistic expectations. He will likely need full care for the rest of his life, barring of course, a miracle. Further, we are prepared to ensure he has a safe, enjoyable life, all the days of his life. THIS is what people should be focusing on.

Edited September 5, 2009 by specialmama

[tex-mex]

At least that made you feel good for a while.

 

Actually... that was not meant to be snarky. That is how my son's specialist-- regarded by the NIH as #6 in the world TOP researcher on our disease feels about so-called medical experts and celebrities raising people's hopes on a quick cure to Autism. Our metabolic disease caused the co-morbidity of Autism. After attending many medical conferences on our disease and speaking to many families suffering, I feel the same way. You do feel like in the future, doctors will look back on how we treated a disease and call us barbarians. Much like we look how the middle ages treated ill people. And yes, Coca-Cola was invented by a pharmacist to be a curative drink. And it did have cocaine in it. Sorry to ruin your day, just stepping off my soap box now...

Edited September 5, 2009 by tex-mex

[tex-mex]

I'm one of those parents. I am repulsed by the lady and I think she has done a huge disservice to the autism community. I know many, many parents in my autism circles who have been conned into spending tens of thousands of dollars in "cures". Con artists prey on desperate people, so there are plenty of parents buying into xyz. It is very sad to see these parents after the wreck, their hopes dashed, their embarassment paramount. They feel like fools, then question the love they have for their child. They feel so let down, so helpless, and wonder why they didn't just love their kid the way he was. It's a dangerous roller coaster ride, for already stressed out parents.

 

I try to have a balanced view. My son is special just the way he is. I will investigate a therapy, perhaps try it, evaluate it, continue or discontinue as we see fit, always measuring the results. I will NOT sit back and do nothing for him. I am hopeful for his future and there are many people praying for him. But I also try to balance that with realistic expectations. He will likely need full care for the rest of his life, barring of course, a miracle. Further, we are prepared to ensure he has a safe, enjoyable life, all the days of his life. THIS is what people should be focusing on.

 

:iagree:

[Home'scool]

Thank you all for taking the time to respond. I didn't want to be one of those people who said something along the lines of "oh, I heard Jenny McCarthy has found some type of cure for Autism" and cause people any heartache.

 

Your responses have helped me understand the issue better. Thank you

[sbgrace]

 

May I ask what this condition is? Was it discovered at birth? I am still trying to figure out ds and never know how far to take it. [intervention wise that is]

 

Sure, I'm happy to share. My son has a probable/clincally dxd. mitochondrial disorder. A study found signs of mitochondrial issues in 25% of autistic kids tested (though it was a small sample). It's clearly significant. He made a huge improvement in autism symptoms when we started him on the "mitochondrial protocol" simply because he felt better and so functioned better. For a little while I thought he was no longer on the spectrum. He is and always will be but he is so much more capable now. I think autistic kids have autistic brains--it's genetic. And part of those genetics include certain underlying conditions for certain kids.

 

I made a link about when to suspect underlying metabolic and/or mitochondrial issues in special needs kids on another board. I'll try to link it here. If it doesn't work feel free to send me a pm and I'll send the link. But I want to note that many, many metabolic and genetic conditions include autism symptoms as a component/co-occurance with the underlying issue. My son has one of many of them.

 

Oh, we discovered that he likely had a metabolic issue affected fat metabolism at 3.5. After lots of tests we found it was likely mitochondrial at age 4. He was diagnosed with PDD-NOS at 2.5. I just knew there was something going on with him and I really felt it was diet related as it seemed food affected him. As it turns out he can't metabolize fat but I never read about or suspected that! None of the typical autism diets did any good for him and, in fact, one in particular was a disaster for his health. I've met other parents with kids with my son's condition with similar stories. The commonly suggested autism interventions were unhelpful or even harmful for their children.

 

Link to signs

Edited September 5, 2009 by sbgrace

[rlowetx]

It seems to be the same issue that happened to Christopher Reeve, when he became paralyzed. He and his wife worked very hard to put a voice out there for the quad community and make the community's needs/wishes heard. However, each person's voice is just that... a single voice. Many in the quad community disagreed with his suggestions and disagreed with the "image" of what living with quadripeligia (or technically, tetra-peligia) was becoming to others. The celebrities take on these causes, which are so close to their hearts, and get coverage and become all that the world knows about the certain issue...but in the end, they are solely one voice and each person has their own ways of looking at things.. even those with similar disabilities.

To me its like Angelina Jolie speaking on behalf of all large families (I know she's not...its my insane example). Her reality is not the rest of the other non-famous people's reality. The ignorant public hear what's on TV or what the only coverage is and think that is how ALL people like that must be.

We're all due an opinion, but celebrities voices are heard louder than others...nothing we can do about it except hope one day one of their voices aligns with ours.