Autism Vox

350 opinions for Jenny McCarthy, Autism Mother

• Cliff
  Sep 18, 2007 at 8:10 am

  You’re writing a book? Perhaps as a (semi) new visitor, I hadn’t heard that. I wish the best for your own endeavor.

  I don’t really have access to a TV (single room without a proper place for my books, less than a TV set), but I might try and find one to see her.

  Cliff

• Kristina Chew, PhD
  Sep 18, 2007 at 9:17 am

  I guess Oprah will post clips—yes, I am writing a book, a much slower process than blogging! Thanks for your good wishes.

• Cliff
  Sep 18, 2007 at 11:37 am

  I’d be interesting to hear what you want to include because, though it’s different because you are also a PhD, I’m writing my own book as well (coming along slowly as I’m trying to be a college student and a writer at the same time and it’s only going along so fast). I’m still not sure what direction I should (or can) take, so I’m interested to hear what direction you are taking.

  Cliff

• Leila
  Sep 18, 2007 at 12:05 pm

  Jenny recently returned to the gossip magazines/blogs by way of dating actor Jim Carrey. I saw pictures of her son, he’s beautiful.

  I don’t know what she’s gonna say at Oprah today, but she’s now a spokesperson for TACA (a parent organization from Southern California that is very biomed-oriented), so I’m sure her version for her son’s “recovery” will not include only ABA and other educational therapies.

• vincent
  Sep 18, 2007 at 12:26 pm

  WHO SPEAKS FOR AUTISTIC PEOPLE? In this time of partisan treatments and divisive self interest, where is the voice of integrity and authority? Jenny McCarthy? Dr. Chew? Me?
  Hopefully, each cogent and compelling autism story cuts to the heart of public debate to offer a different glance at the autism spectrum.

  WHO SPEAKS FOR AUTISTIC PEOPLE? Autistic people speak for autistic people!

  Our efforts must benefit the entire autism community and where special interest is making sure that our compassion extends to all aut people.

• jypsy
  Sep 18, 2007 at 4:40 pm

  It was a horrible pile of crap.

• original cali biomed xprt
  Sep 18, 2007 at 4:54 pm

  TACA, just like DAN, deliberately mis-uses the word ‘biomedical’ (which they prefer to shorten as “biomed”). What they really tout is “alternative medicine” at best (medical quackery at worst) and it has no connection with actual biomedical practices and real biomedical treatment. Bottom-line: TACA/ARI/DAN et al. outright lie when they use that word.

  “Biomedical”

  1. Pertaining to those aspects of the natural sciences, especially the biologic and physiologic sciences, that relate to or underlie medicine.

  2. biological and medical, i.e., encompassing both the science(s) and the art of medicine.

  {TACA = Treats Autistics Cruelly Always}

• Ms Clark
  Sep 18, 2007 at 5:01 pm

  I haven’t seen it, but from the reactions on the Oprah website, I see that many moms are now terrified of vaccines when they weren’t before the Oprah show.

  Way to go Oprah. Way to degrade autistic people so that Jenny can sell her book.

• original cali biomed xprt
  Sep 18, 2007 at 5:43 pm

  That’s why Oprah exists: Too make certain self-serving celebs get even more press.

• Regan
  Sep 18, 2007 at 7:08 pm

  I’ve just started watching the first 10 minutes, but I’m feeling that Jypsy’s call is right on. See how the rest of it plays out.

• Leila
  Sep 18, 2007 at 8:43 pm

  From what I saw on the website transcript, she basically blamed the MMR vaccine, and used a lot of the “child locked inside” cliche.

• vandychick
  Sep 18, 2007 at 8:46 pm

  I watched for a while then turned it off when she mentioned vaccines as a cause. I posted my irritation on a board and was immediately met with tons of replies about how Jenny “said she wasn’t anti-vaccine” and “I think moms really are the real experts.” Many also considered the CDC to be wising up to the fact that vaccines are dangerous, thanks to their wishy-washy statement.

  It was very disheartening and I fear Oprah may have single handedly caused a health disaster. How does Dr. Oz feel about this?

  I don’t know that my child will ever get or warrant a diagnosis but I find the whole topic tremendously depressing and I finally have some insight as to why. I am terrified that if my child is diagnosed with asd, these are the parents I will have to turn to for support. Who will I talk to? I cannot seem to find one mother who is willing to say it’s not vaccines or who thinks GFCF might be all bunk. Even the most level-headed mothers I know say things like, “Well, I know vaccines didn’t cause it for my child, but I think it might for other people’s kids.”

• michelle juge
  Sep 18, 2007 at 10:43 pm

  Jenny,

  I’m not sure I am contacting the right place but, Hi, my name is Michelle Juge and I am the godmother of my best friends 16 month old son, Kevin. He hasn’t started walking yet and when you assist him like with all little ones by holding their hands all he does is walk on his toes. He’s not really speaking either he makes sounds that we feel are words, he yells out alot and makes loud outburst all the time. Her pediatrican has told her that if he is not walking at 18 months he was going to put him in an under-development class.
  She is my best friend and it worries me that these are early signs of autism and how do I tell my friend about my feelings?
  I don’t want to loose her friendship and even with that possibility I tell myself doesn’t matter if it opens her eyes and urges her to ask his doctor to get him tested. I did tell her about the vaccination coincidence and the statistics today with 1 in every 94 boys are diagnosed.
  That did get her conserned. Do you feel that I am over-reacting and what I am seeing in him is just normal or are these signs?

  I have so much love inside of me for them and I am here for the long haul, I just don’t know where to go from here.

  Help

• Kristina Chew, PhD
  Sep 18, 2007 at 11:15 pm

  Cliff, if I may ask, is your book a memoir and autobiographical? Mine is partially a memoir—Charlie’s story from my perspective as someone who has changed in order to best help him. And a few other things—–very best wishes to you on writing yours!

  Vincent, I mean only to speak for myself here…..

• Strike123
  Sep 18, 2007 at 11:34 pm

  Hi Christina, My best regards to you on your book writing. Hey! Maybe we’ll see you on Oprah, 20/20, etc…, someday, talking about YOUR new book!

  Let us know when to tune in, Even I would watch Oprah then. I’m afraid I missed Jenny today. In fact, I’m not even quite sure what she’s famous for.

  Again, best of luck with your writing!

  Take Care,

  Strike

• Cliff
  Sep 18, 2007 at 11:36 pm

  I’m not entirely sure, which is why I asked. It’s not going to be a full autobiography, simply because, taken from a strictly event-driven perspective, there’s not all that much that’s happened (to be expected in the case of a 16-year-old) in comparison to what it really mean. But I’m on the fence on making it either pure memoir or memoir/essay, because, while describing events in my life is helpful, the philosophical positions and feelings regarding autism that are to be taken from my life wouldn’t be necessarily obvious. So I’m still thinking that through.

  And I think Vincent meant in a general sense. I mean, should a mother of an autistic kid be the one going on television to make judgments about autism for the media? Or someone who is personally autistic? It would have been nice if they contacted an autistic to also attend the show with McCarthy, say Daniel Tammet or Temple Grandin.

  Cliff

• Rob M
  Sep 19, 2007 at 12:07 am

  Hi Kristina -

  I’m not sure why you want to judge Jenny McCarthy so severly. She is merely stating what worked for her.

  We have been seeing a DAN doctor for over two years. Our doctor has a PhD and and is and MD (Allergist) - so i’m comfortable he is very qualified.

  Our four year old son has made remarkable strides. What is the problem with looking at different approaches to unlocking the mystery of autism? Why are you so quick to judge something if you have not tried it or you tried it and it did not work for you. The items Jenny outline have worked for her. They have worked for our son also.

  I see you advertise all over your web site. I’m sure you get money when someone clicks on a link. I have no problem with this. We all need to make money to support ourselves and our children. Jenny has the right to do the same.

  Have a good day!

  Rob

  I hope Jenny sells many books.

• Kristina Chew, PhD
  Sep 19, 2007 at 12:12 am

  I think there’s a sort of shift going on: There have been so many books by parents and now autistic adults are writing more books—like Tammet’s and John Elder Robinson’s Look Me in the Eye. I try to make it clear that I’m writing as a parent who is not autistic—-compassion, “feeling with others,” is (as Vincent notes) key.

  I’ve been wanting to write about Charlie for years and things are just now becoming clearer in this regard. I think you’ve got a lot to tell, Cliff, and you’ll know when you’ve found how to write it.

• Kristina Chew, PhD
  Sep 19, 2007 at 12:16 am

  Rob, she is indeed selling many books! We did some parts of the DAN! protocol (the original one) my son as younger, and I have continued to follow each new development and treatment, and attended DAN!. As Charlie got older—4 seems a long time ago; Charlie is now almost my height—his education became our greatest focus, and has remained to. (Charlie had also been doing lots of ABA, speech therapy OT, and so forth.)

• Strike123
  Sep 19, 2007 at 12:28 am

  I apologize, Kristina, for having mispelled your name in my previous post. I’m kind of new here.

  Have you guys thought about finding an agent or a publisher yet? What do you have planned for your manuscripts once they’re finished? If you have any questions, your welcome to shoot me an email. I’m no expert, but having gone through the experience of writing and getting published, I might be able to help you avoid some of the common pitfalls that many first time authors can easily fall into. Please let me know.

  Kind Regards,

  Dave

• Rob M
  Sep 19, 2007 at 12:33 am

  Hi Kristina -

  Thanks for the quick comment! How is Charlie doing now? How old is he? How different is the original DAN protocol vs what DAN offers now?

  Our son gets OT, PT and speech therapy. He attends an Autism school. We feel a combined medical and educational approach has worked very well for us.

  Thanks for your time.

• long day's journey into acceptance
  Sep 19, 2007 at 1:12 am

  Re: “Louder Than Words: A Mother’s Journey in Healing Autism”

  I find the the whole notion of “mother’s journey” distasteful and entirely insulting. It’s not the mother’s journey, it is the child’s journey. Period. It’s.not.about.the.mother. Someday, perhaps the boy can report upon his own autism ‘journey’. If so, one hopes the mother listens.

• Kristina Chew, PhD
  Sep 19, 2007 at 1:58 am

  Dear Michelle, I think (in this day and age) it is okay to over-react. It may not necessarily be autism that Kevin has but it’s good to be noting that he does not have words yet and has the outbursts. What is he playing with toys like? Does he try to get you to notice things that he does? My own son was 16 months old when he walked but other friends have autistic children who walked at 12 months.

  Would it be possible to ask your friend about having her son evaluated because of his not having words yet, and not even mention autism? A friend of mine’s son just started Early Intervention for speech and he is not yet 2 years old. I know she is wondering about autism, though it seems to be mostly her son’s speech that is delayed. It was not easy for her to get started with this, but she seems to feel some relief now that things are underway.

  I would emphasize to your friend (of course, you can disregard this; you know her best!) that there is a lot that can be done for any young child with delays, from speech to other concerns. There is a lot of help, and always a lot of hope—-for myself, I prefer to emphasize what can be done more than vaccines etc.. There is a lot that we can do and Kevin will learn and grow!

  best wishes—

• Kristina Chew, PhD
  Sep 19, 2007 at 2:02 am

  Strike123 (and some of my own relatives spell my name wrong…..)—thanks so much! I am working on seeking an outlet for my manuscript which is very much in a beginning sort of stage—-advice is much appreciated!

• Kristina Chew, PhD
  Sep 19, 2007 at 2:11 am

  Rob, Charlie is now 10 years old. He attends a public school autism program that uses ABA; Charlie is in a self-contained classroom. (His classroom is located in a school in our town; his is one of two autism classrooms in an elementary school.) He did not have any speech prior to starting ABA at 2 years old. He has done the ABA (he has also done verbal behavior), speech, and OT ever since and struggled a lot with academic skills such as reading and writing; he can talk, mostly in short phrases too ask for what he needs. He’s doing really good — likes school and learning, is more and more curious about other people and especially other children. His strengths are in physical activity: He’s a tremendous bike rider and swimmer, esp. in the ocean.

  I need to look up the DAN! protocol that we had for details: Chelation was much less widely promoted and used; the diet was just getting a lot of attention (from Lisa Lewis’ and Karyn Seroussi’s books); more emphasis on DMG, SuperNuthera. We did anti-fungal therapy with nystatin and probiotics. Also, secretin was getting a lot of attention.

  If I may ask, what kind of teaching methodology does your son’s school use?

  Best wishes—

• Eileen
  Sep 19, 2007 at 3:53 am

  I have a 15 yr old daughter with Autism. I hate hearing about cures and healing and watched Oprah with much trepidation. I saw Jenny on The View last spring and was NOT impressed with her and her Crystal method. She’s a kook and a book whore. I taped the show in case I had to throw up or wanted to throw the tv out the window (which my daughter has done from our 4th floor window…I keep telling myself she gets it from me and not because she has autism…).

  I must say that now that I’ve seen the show I’ve done a complete 360 on this woman. She did not mention the crystal thing once. She did not keep harping on her book - Oprah did. She did not sound stupid or kooky. She sounded like me. A mom of a child with autism. An advocate who speaks with her whole heart and with enthusiasm. She was very clear about how what worked with Evan will not work for everyone. She used the analogy of how chemo works for some cancer patients but not all. She had a story to tell of hope - and all of you who have children like ours know what it’s like to feel alone, feel like there is no where to go for information (especially before Google) or has had to fight blindly with a school district. More power to her! There isn’t enough hope out there.

  Is my child ‘healed’? No. But with her hard work and the diligence and dedication of caring individuals she continues to ‘recover’ in bits and pieces. My girl will always be autistic, but I can only cringe to think what she would have been like if we left her to uninformed doctors and school districts.

  Parents are the advocates, we get what our children deserve - whether it be education, medication and more importantly information. As a parent of an older child, I feel an obligation to keep informed and to help inform new parents. You know how scary it is. I read Catherine Maurice’s book - it gave me faith and it gave me hope and helped me fight the fight for my daughter. Our situation did not pan out like hers, but maybe Jenny’s book will make others have faith, hope and the ability to know the fight is worth it because our children are worth it.

  Like Jenny McCarthy, or not, she’s renewed my faith in myself to continue to do what I do for my child. Every new skill is a victory. I never thought I could have a conversation with her. At the age of 15 she just started conversing back and forth with me a few months ago! There is still so much potential in her abilities and I want to see her succeed! She is happier now than she’s ever been.

  And I hope if anything comes out of Oprah’s show today it is what both Jenny & Holly Robinson Peete said, “It’s time for doctors to listen to the mothers”

  And, by the way, I do believe that vaccines play a part for some children. My daughter had a 4 hour seizure the night of her shots. My pediatrician told me I was a hysterical mother and to triple dose the Tylenol. Needless to say, we changed pediatricians.

• Harold L Doherty
  Sep 19, 2007 at 6:26 am

  Vincent

  My son is barely verbal to use Ms Chew’s expression. He can not speak for himself on most complex subjects. As a parent I speak for him as a matter of law and necessity. Highly verbal people do not share the same challenges in life that he does and they do not speak for my son. You can keep claiming the right of higher functioning people to speak for people like my son until the end of time but most parents will not accept that argument. We will continue to try and help our children whether it meets with the approval of other more higher functioning autistic people or not.

• Kristina Chew, PhD
  Sep 19, 2007 at 7:06 am

  “Barely” of course being progress that Charlie has made being non-verbal, and more communication comes every day. Always good to hear from you, Vincent and everyone—thank you and onward!

• Marcie
  Sep 19, 2007 at 9:05 am

  >We will continue to try and help our children

  Harold, I suspect you’ve heard this before, but being an adult with autism and being an advocate for *all* autistics does not mean not trying to help them help themselves. It simply means not trying to treat them like there is some neurotypical core in an autistic shell. It simply means using interventions that work with instead of attempting to defeat the autism. (This is not a comment on your methods with your son; I’ve no idea what those are.)

  Autistics themselves, whether “high” or “low” functioning consistently claim solidarity, even in their diversity, and that is enough for me. If you don’t talk to a variety of people in the autistic community and listen to this for yourself, then there’s nothing that can be done to convince you. You must realize this for yourself.

  Kristina, I sincerely hope you get to be on Oprah (or something similar) one day.

• Julie
  Sep 19, 2007 at 10:39 am

  I liked when it was said that everyone should come together to talk about autism and that cure did not mean that her son would not be dealing with autism the rest of his life but that there had been progress. I find it a bit ironic at times thatthe thing that causes the most controversy in the autism community is the interpretation of how we use our language. whether or children are autistic or have autism? I believe that my daughter is a beautiful, smart girl who has autism. I think being a little more open t hearing what others have to say could be helpful. I was not as upset by what she said as I thought i would be When I saw her on the view I thought that it was going to be more of that. She was well spoken and spoke about the work and supports that have helped her son progress. She did talk about wheat and dairy free diet but My daughter does have food issues and taking dairy out of her diet did help. I realize this is not the case for everyone but I think it is he responsible thing to do if it is an issue for your child. I was impressed by oprahs show and felt it went better than her last show on autism.

• Suzanne
  Sep 19, 2007 at 11:13 am

  As far as this Oprah episode, ditto what jypsy said. I need to fing a dv cable to get my thoughts[=rant] from camcorder to computer. Anyone who thinks “Autism is like being hit by a bus” is a “good analogy” is seriously mistaken. Holly Robinson Peete had some more positive things to say, such as, we need to learn how to teach them.

• Suzanne
  Sep 19, 2007 at 11:17 am

  oh, yeah… then again, Holly said that calling her son and others “autistic” (rather than person with autism) “is like nails on a chalkboard to the autism community”. I truly want to know if anyone involved in this piece of crap program have talked to the REAL autism community.

• passionlessDrone
  Sep 19, 2007 at 12:00 pm

  Hi Suzanne -

  “oh, yeah… then again, Holly said that calling her son and others “autistic” (rather than person with autism) “is like nails on a chalkboard to the autism community”. I truly want to know if anyone involved in this piece of crap program have talked to the REAL autism community.”

  This post, I beleive, describes the crux of why there seems to be so much disagreement on this type of thing; so many people think their particular situation represents the ‘REAL’ autism community.

  What about the autistics who not only cannot talk, but cannot sign, type, or even nod their heads yes or no; how, exactly, would you propose that these people be involved (’talked to’) with the production of such a program? There are many, many children (and adults) with autism who fall into this category. Are they part of the ‘REAL’ autism community you describe?

  For as long as you hold onto the notion that there is one true ‘real autism community’, which happens to conform to your mindset, you will find yourself enraged at someone, somewhere. But the recipients of your anger are phantoms of your own making.

  - pD

• jypsy
  Sep 19, 2007 at 12:06 pm

  Thanx Suzanne for pointing out the 2 things the show left me with - Holly’s positive comments and her opinion on “autistic vs with autism” (which, when she gets her autism diagnosis, I might consider).

• Kristina Chew, PhD
  Sep 19, 2007 at 12:50 pm

  I could do without “being by hit by some moving vehicle or other” type analogies; perhaps that we’re all on the big bus together, over the bumps and turns of the road………

• KimJ
  Sep 19, 2007 at 1:47 pm

  For what it’s worth, Wikipedia distinguishes “autism community” from “autistic community”. The former being mainly neurotypical friends, family and professionals of autistic people that are interested in autism. The latter being the autistic people as a cultural collective. So, in effect Holly is correct to take insult at “autistic” because that is the position she holds, a person is “with autism”.

• long day's journey into acceptance
  Sep 19, 2007 at 1:55 pm

  “… Holly’s […] opinion on “autistic vs with autism” (which, when she gets her autism diagnosis, I might consider).”

  Zactly. Girlfriend has a thing or two to learn about who decides what terminology is accepted or not accepted within a specific community.

  There was an Ebony (i think) interview with Holly in the early summer. She had some very disparaging things to say to say about one’s being autistic and how the outward appearance of such was not acceptable.

• Julie
  Sep 19, 2007 at 1:56 pm

  I find it hard to understand why we have to argue oer who has the right to feel they way they do or not. I am a parent of a daughter who has autism that gives me the unique perspective of a parent of someone who has autism. I do not claim to speak for anyone but myself about our experience. My daughter one day I hope can share her experience as someone who has autism. I think that we can learn from eachother how to help our children and learn to navigate this crazy worl we live in. Some of us as those who the the person who has autism others as those who have it. I wish we would stop aruing and listen to and respect everyones unique position and experience.

• long day's journey into acceptance
  Sep 19, 2007 at 2:04 pm

  I’m not going to listen to anyone who is pushing harmful pseudoscience. Telling young kids they are “poisoned” — when they are NOT — has some extremely damaging effects to those who are ignorantly labeled as poisoned and touted as such in the media. Sorry, but not everyone’s ideas must be given equal weight in order for there to be respect.

• vincent
  Sep 19, 2007 at 2:51 pm

  Harold,

  Your comments are most appreciated. My son is midway on the spectrum w/limited expressive language. Actually, much like Charlie (thus why I find this blog so attractive).

  Harold, being with my son is like a walk with Gandhi, but I dont profess to speak for him. Hearing his voice and others like him would mean so much.

  The scarcity of Dr. Chews…may be more ominous than the scarcity of cost effective treatments for our children.
  Doc, looking forward to your NY City book signing.

• Chuck
  Sep 19, 2007 at 3:04 pm

  Long Day,

  Psychology itself is a harmful pseudoscience. Many that have been ”ignorantly labeled” and had extremely damaging effects, or death, as a result. If everyone’s ideas are not given equal weight, how can there be any respect?

• Mika
  Sep 19, 2007 at 3:16 pm

  Hi Christine,
  I had my issues with Jenny also.
  You touched upon a lot of the issues.
  I think you should be on Oprah!!!!!
  Your one of the voices of reason and posibilities.
  I also agree with Vincent.
  People need to hear their voices now.
  Instead of hearing actors and rock stars saying “Wipe out Autism now”
  I know this sounds dramatic. When I hear these slogans it makes me think of genocide.
  I always tell parents not to listen to the negative media about Autism.
  I refer them to this website.
  I encourage them to think with their own mind about Autism.

• long day's journey into acceptance
  Sep 19, 2007 at 3:16 pm

  One may give equal weight to everyone’s feelings, but to give equal weight to everyone’s _ideas_ is simply illogical at best, completely destructive at worst. I’m not going to ever ‘respect’ pseudoscience.

  BTW, Chuck, I don’t recall discussing psychology as strict science, so I’m not understanding why you’re bringing it up and more-or-less attributing something to me I don’t think I said — but if I did, the please cite it.

• Ms Clark
  Sep 19, 2007 at 3:16 pm

  Kristina, right now, I see two buses. Jenny McCarthy ain’t on the bus I’m on. She’s on a bus that is full of people more than willing to degrade me and my kid and thousands of others by calling us toxic and empty shells.

  Holly Robinson-Peete or whatever her name is said she trained her child to not act autistic, so now if he does something she doesn’t like she cues him and he says something like, “oh, yeah, that’s dumb, that’s AW-TIS-TICK” like mocking how some autistics or people with mental impairments talk.

  EXCUSE ME? These people do not deserve a place in the spotlight, they are harmful, even if they managed to slip in something less strident, they are still promoting dangerous crap that could directly lead to kids getting killed.

  You can tell what the real take away message was from the show by going to the Oprah message board and read, “oh. my. god. i have an appointment to get my child’s mmr shot tomorrow, now i am totall scared that my child will have autism like jenny’s kid… what should i do????????” and responses like, “don’t vaccinate!!!!!! don’t vaccinate ever!!!!!! vaccines are bad!!!!!! no vaccines!!!!!” I’m not kidding, that was the conversation that was developing on the board, though not exact quotes.

  How many kids are going to get sick or die now from measles because everyone wants to give everyone “respect”? I don’t get to say, put all the unvaxed kids on one bus so that when an epidemic breaks out it doesn’t affect the ones that don’t believe in these lies.

  How did the MMR make Jenny’s kid autistic? In the same way some magic force made her kid a crystal child. That’s how. It never happened.

  So no, actually we are not all on the same bus. Not at all. If Jenny tries to get on my bus with her vicoius bias against her son being like my child and her snakeoil idiocy, I’m getting off and taking my kid with me.

  Thank you for making the points you have, “long day’s journey into acceptance” and thank you jypsy and Suzanne for having the courage to take a stand against this dangerous garbage, even if it is all wrapped up pretty like.

• long day's journey into acceptance
  Sep 19, 2007 at 3:28 pm

  “How did the MMR make Jenny’s kid autistic?”

  Because she sez so (see below) and apparently we are supposed to accept that and give it equal weight to the truth.

  –
  http://www.kevinleitch.co.uk/wp/?p=628

  Then Oprah read a response she had received from the CDC (at least she took a stab at social responsibility by contacting the agency) that talked about the lack of scientific support for the idea that thimerosal triggers autism.

  McCarthy scoffed and said, speaking of her son: “He is my science.”

• Ms Clark
  Sep 19, 2007 at 3:43 pm

  “Evan is my science”. - Jenny the ex-playboy Bunny

  Well, my ASD kid is my ethics, how about that?

• HeatherS
  Sep 19, 2007 at 4:23 pm

  Looks like I’m joining the conversation rather late, but we TiVo’d the episode because we tend to TiVo a lot of Autism related television, whether we think we’ll agree or not, just to know what’s being said. We have so far watched only half of it, so I can only speak for the first half-hour, but we had mixed feelings.

  I remember Jenny McCarthy from MTV, and she has been in and out of the media spotlight for several years. She has only relatively recently re-emerged, what with her dating Jim Carey, but this wasn’t the first I’d heard of her son’s autism. The first time I heard it, it was in reference to her believing that he was a “Crystal/Indigo Child” or some such none-sense. I rather hope that she has come to her senses since then.

  Some of what she had to say really rubbed me the wrong way, some not so much. Right out of the gate, she referred to her son as being “locked away inside”, which really irritated me. She discussed the diagnosis process (first symptoms, original mis-diagnosis, etc) in a very typical way, similar to that of thousands of autism moms, but her description of realizing that all of her son’s stereotypic behaviors, which to that point she had considered simply quirks of his personality were actually “symptoms” of autism, she said that her happy child was locked away in there and she knew that she had to get him out. At which point Oprah reached out a comforting hand and the audience roared with approval for this mother’s determination to “save” her son.

  What struck me was that before his diagnosis, those quirks were a lovable part of her son’s personality, and after the diagnosis, they were the very walls of his prison.

  She talked about GFCF, which is fine. We tried it, saw zero change in behaviors. Saw positive change in the quality of the diapers we changed, and… you know, cleaned off the walls, but otherwise nothing. Other parents swear by it. I personally an inclined to believe that it’s all coincidental, same as the MMR link, but to each their own. At least the diet isn’t harming kids.

  She went on about vaccines for a while, and I can’t complain too much because we went through that phase as well. One point she made about vaccinations did hit home with me, though (in that I agreed with her) is that regardless of their link (or non-link) to autism, vaccinations are given to kids far too young, in far too many combos, pushed in all at once and as many as they possibly can in a single visit, all according to a “one-size-fits-all” schedule. I have no idea how anyone is able to determine which kid had a reaction to what vaccine when they receive eight different doses in a single day. And maybe at this point they don’t really care anymore. Children are now being given hep-B vaccinations at less than a day old. That’s just not cool on an underdeveloped neurological and immune system.

  We were also rubbed the wrong way by Jenny’s insistence that she had “healed” her son. Implying that he was somehow broken.

  Overall, it wasn’t the worst thing I’ve ever seen, but she’s got to learn about paying her child his proper respects as a human being. I have no doubt of her love for him, but a “broken/locked-away” person is of no less worth than a “healed” person, and her interview didn’t give me the impression that she felt that way.

  *shrug*

  My $.02.

• long day's journey into acceptance
  Sep 19, 2007 at 4:38 pm

  Jenny claims:

  “The university of google is where i got my degree from.”

  *ahem*
  No, Jenny, I won’t dispute that, it’s fairly obvious.

• Kristina Chew, PhD
  Sep 19, 2007 at 4:40 pm

  $.02 that is worth a lot more—-my son isn’t broken and, yes, doesn’t need fixing. (To quote another friend.)

  Jim was having lunch with one of his graduate students and a woman turned around on hearing their conversation, and started to talk about Jenny, vaccines, her (the woman) being a vegan. Jim said, no, it’s not the vaccines….

• Michele
  Sep 19, 2007 at 4:48 pm

  I need more help. I am a granmother to a child who I believe to need help. My son is raising her by himself and she is almost three. I learned a lot and the one thing I learned was to trust my instinct. Where is the help? I would babysit everyday but I live in antoher State. He is doing a great job and they both need help where do I start?

• vincent
  Sep 19, 2007 at 4:52 pm

  Dr. Chew,

  This thread makes for a good chapter in your book? Excellent posts! Marcie and Mika well said!!

  I always try to tell people to strenghten my son by simpathizing with his strengths, not his weakness.
  Henyry David Thoreau once said, “Being is the great explainer”.

  We are a community.

• Chuck
  Sep 19, 2007 at 4:54 pm

  I was merely pointing out the irony of shooting down a pseudoscientific treatment for a pseudoscientifically defined disorder.

• long day's journey into acceptance
  Sep 19, 2007 at 5:13 pm

  So, then you agree that ASD is not a disorder but a neurological difference?

• Eileen
  Sep 19, 2007 at 5:35 pm

  It’s amazing how semantics can cloud an argument. This is a fantastic site and I’m glad I came upon it.

  I must admit, I made some really bad choices as a young woman in my late teens and early twenties - just not as public as Jenny McCarthy’s. I hope those out there who don’t ‘like’ or ‘respect’ her remember that she is still a young woman who is (hopefully) learning as life hurtles her forward. It can not be denied she cares about her son. Personally I am glad Evan is doing well. I am glad when I hear of any child that is progressing. The semantics of how a child is described is not important to me. What is important is that we are all here, getting information, advocating for our kids (and adult friends) and making a positive difference in their lives. Isn’t that what this is all about? Thank you, Dr. Chew, for giving us this forum. I wish you only the best for your book. I will definitely be looking for it!

• Sandra
  Sep 19, 2007 at 5:38 pm

  It’s really is too bad that none of you can get over her looks and stop judging her. How is the air up there on your high horses? She is doing what worked for her & her son. She is doing more to get the spotlight on this epidemic than any of you are! You all sit here and bicker about her being in former-Playboy like that makes anything she says invalid! Get over it already. Jenny is more than just a pretty face - she is a smart WOMAN & MOTHER who is trying to help others. Maybe if you take a minute to listen to what she said rather than being blinded by your judgements, you might just learn something. She never claimed to speak for everyone nor did she tell people not to get their children vaccinated. What she said was = “I believe that the MMR shot cause the autism.” She said it was her THEORY! She never claimed it was fact. She just asked that we all be willing to consider it & do more research. :One size does not fit all” She said that at least 4 times. I guess most of you were just listing to the parts you could judge her for rather than what true information she provided.

• isles
  Sep 19, 2007 at 5:43 pm

  I am told that in her book, Jenny McCarthy says her son’s autism was triggered by the hepatitis C vaccine.

  Which is interesting, because there is no vaccine for hepatitis C.

  Guess they didn’t cover that at the University of Google.

• long day's journey into acceptance
  Sep 19, 2007 at 6:16 pm

  Jenny is gorgeous and always has been. I’m judging her on her ‘layman’s premise’, if you will Sandra … or as you term it her “theory”.

• long day's journey into acceptance
  Sep 19, 2007 at 6:20 pm

  Isles: Here is LA the Hep C is given to celebs’ kids. I think Paulie Shore was the first to get that one.

• HCN
  Sep 19, 2007 at 6:23 pm

  I’m sorry, I am a bit out of the loop.

  Who is Jenny McCarthy? Who is Holly Peete? Why would I need to read her book or listen to either of them versus, say… my son’s neurologist (he had neo-natal seizures… which happened before he had any kind of vaccine), his speech therapists or his cardiologist?

• long day's journey into acceptance
  Sep 19, 2007 at 6:34 pm

  HCN:

  Jenny and Holly are celebrities. In the US, one is obligated to listen to them over scientists.

  On Oprah, Jenny claimed that she knew how to do “research” by “looking on-line” and that “pediatricians don’t know any of this”.

  Yes, I’ll take google adwords anytime over my physician’s advice.

• Chuck
  Sep 19, 2007 at 6:35 pm

  ”So, then you agree that ASD is not a disorder but a neurological difference?”

  Currently there is no pathology or specific neurological mapping that defines ASD, so no, I would not say that.

• long day's journey into acceptance
  Sep 19, 2007 at 6:39 pm

  Chuck:

  In all seriousness, what terms do you use at your school? Have you written anywhere about how you started your school? Can you tell me if it’s in So Cal, Northern Cal or somewhere in-between? We are school-less at the moment.

  Thanks.

• Kristina Chew, PhD
  Sep 19, 2007 at 6:49 pm

  Ms. Clark, It does seem like McCarthy is one of those in the “driving seat” right now—my own vehicle is rusty (I’m not kidding) and makes some interesting noises, but it gets me where it has to, slowly but surely. And it doesn’t let buses, or 18 wheeler trailors, push it off the road.

• Chuck
  Sep 19, 2007 at 6:50 pm

  The school is on the East Coast and assists any student that will benefit from a 1:1 ABA-VB approach. Most of the educational labels are very different from an actual professional diagnosis that the student has/may receive.

• Kristina Chew, PhD
  Sep 19, 2007 at 7:00 pm

  Michele, we live in New Jersey and my parents live in California. They’re retired and they out pretty frequently for long stays—that is a huge help. I’m not sure if you’re able to but (this is from my perspective!) any visit from my parents, and the “free babysitting,” is a boon, even if it’s infrequent. I think it also helps to be just very supportive and affirmative and to listen, and let them know you are always there for them, and that it’s equally okay to hear about difficult moments as well as triumphs.

  Is there an autism group in your community, perhaps a support group? I’m not sure how you feel about this, but perhaps it might be good to attend, just to get a sense of parents’ day to day lives; a lot of grandparents have also joined some of the email discussion lists that I am on, again, just too get a sense of the “day to day.” My parents have also done some reading about how to respond if my son gets upset in public, in the car, etc.—that has been very helpful, so that, when they take him places, they have more confidence.

  Hope this is a bit helpful—–hope your granddaughter is doing well. If I may ask, what kind of program is she in (if she is in one)? Thank you for reading and writing—-

• Ms Clark
  Sep 19, 2007 at 7:02 pm

  Kristina,
  I think your imagery of you driving your own not so glamorous vehicle (you should see mine, the old toyota with the clear coat going milky and flaking off…) is a better one than saying we are all in the same bus.

  Jenny’s at the wheel of the biomed/antivax bus now. I hope she blows a tire soon before it runs over my kid and others, and even kills some.

  Oh, but she’s so cute! (not directed at you Kristina)

  I keep getting this picture of a recent popular YouTube video of this weird guy acting like a distraught teen girl, “Leave Jenny ALONE!!!!!!!” Hasn’t she suffered enough?????? She’s so pretty!!!!!!!” (/sarcasm)

• Jamie
  Sep 20, 2007 at 12:12 am

  After watching the Oprah show today I have been reading articles online about autism and vaccinations. My son goes in on Monday for his one year shots and I am terrified!!

• Kristina Chew, PhD
  Sep 20, 2007 at 12:16 am

  Jamie, How is your son’s development? Do you have any autistic relatives in your family? As you’ve seen and will find (even in some responses to your comment here), many people have very strong feelings against vaccines. I can say, vaccines did not cause my son to “become” autistic; he was born with autism.

• KimJ
  Sep 20, 2007 at 12:32 am

  Jamie and anyone else,
  When my son was turning one, we moved across the country. It was an upheaval and I’m prone to distraction. Subsequently, we fell very behind on Pop’s schedule of vaccinations. He still was very autistic. We didn’t notice because he was “just like us” when we were babies/toddlers.
  Despite very obvious autistic traits and hearing tests, we didn’t hear the word “autism” until he was 2 1/2. I imagine I could go back and connect these revelations with some concrete event. But really, he’s just autistic, a unique combo of his parents’ genes.
  Be terrified of the drug resistant infections, the recurring plagues and over prescribed psych meds. Don’t be terrified of an autistic child.

• Ms Clark
  Sep 20, 2007 at 12:32 am

  Terrifying parents away from vaccines that they have no reason to fear is what the antivaxers are drooling over right now. They are in hog heaven that that dumb blonde is carrying their antivaccine propaganda to thousands of moms.

  That a child will be unprotected for sure by not being vaccinated, that the likelihood of outbreaks rise when enough moms feel the same way, that’s of no interest to them.

  That children could die or be signifantly harmed from vaccine preventable diseases is not something anyone is supposed to fear. But it’s real. Viruses and bacteria really land kids in the hospital and land some of them in the grave.

  Thanks Oprah! Thanks Jenny! Thanks TACANow! Maybe they can change their name to: TACHNOw, Talk about hurting children now.
  :-(

• HCN
  Sep 20, 2007 at 2:21 am

  Jamie,

  Try reading the articles in these chapters:
  http://www.cdc.gov/vaccines/pubs/pinkbook/pink-chapters.htm

  Really, there is no reason for you to be terrified. The diseases are actually more nasty than the vaccines. Because of the information you found on the internet the chances of your child getting those diseases is actually higher.

  Last summer four Americans became deaf to actually getting mumps… the disease, not the MMR (I need to keep URLs limited, but just search the CDC site for “mumps deafness 2006″. Kids actually die from measles (over 120 Americans died from measles between 1989 and 1991 when vaccine protection went down). Also, pertussis is nasty even if your child is older than the time it is usually fatal (after a year old).

  My kid had seizures when he was 2 days old. This was a long time ago, before there was an HepB vaccine. Even if you do everything “right”, something can happen. But you have to know the risk.

  But you have to get the risk assessments from reliable sources.

  There is a question I often ask folks but have yet never received a valid answer… it is: “Which vaccine on the present pediatric schedule is more dangerous than the actual disease?”

  Oh, and I have a way to solve problems with being terrified while you stay at home with an infant and toddler: Stay away from daytime talk shows!

  I fell into their trap when my oldest was a baby (he is 19!)… I found out that they tend to turn molehills into mountains!

  I would suggest if you want to find some entertainment while breastfeeding or otherwise enjoying your children while they are very young… go to the library and check out their videos. My library has a fairly decent collection of DVDs. The county library has a BETTER collection of stuff… so I think when we move we will move where we can use the county library!

  My message is: Avoid daytime talk shows.

• Cliff
  Sep 20, 2007 at 2:29 am

  There’s been several interesting discussions about vaccines on this site, and for those interested in hearing much of both points of view, I would suggest a look at those.

  I would have liked to see, on just an interest note, an autistic on the show along with McCarthy and Holly Peete, or someone who had a difference of opinion. There have been several autistic authors; might one of them be contacted, as well?

  Cliff

• Momofthree
  Sep 20, 2007 at 4:07 am

  My son developed normally, in fact we thought he might be gifted. His first word was kitty kitty at 10 months. I had him vaccinated according to the schedule and by 18 months my son could not speak, would not look us in the eyes, and displayed many autstic features. I cannot attest to others, but I believe my son was hurt by all the vaccines he recieved at such a young age.

  Next came my beautiful daughter. I again vaccinated her according to the schedule, she too drifted slowly away into autism.

  With my newest edition, another intelligent boy, I am not vaccinating him. This is my choice. I feel in my heart that he will not become autistic. He is 18 months now and I have not seen any regression in his development.

  This is a terrible thing to have to cope with. Science is not definitive on the cause, and all we have to go on is the crap on TV and the internet, nothing is definitive. I’m going with my gut, and a whole lot of prayer.

• Eileen
  Sep 20, 2007 at 4:16 am

  I have stated before that when my daughter was 4 months old she had seizures (for 4 hours) after receiving a cocktail of vaccines. I believe that the vaccines triggered her autism. Yes, I said triggered, not caused. I think that she had the propensity towards autism that was triggered by the seizures.

  But I want to be clear on one thing. I do not tell my friends and family to not have their children vaccinated. I tell them to do their research. Ask questions. Questions like, do the vaccines you carry still have thimersol? The FDA has stated that vaccines can not use thimersol as a preservative - BUT to use up whatever was left. That was years ago, but you never know what’s out there. Another question I have them ask; is it necessary to have all three shots at once? Can they be broken down, given in intervals? Do they have to have these shots at so young an age? Can some shots wait until a later age (if the child is not in daycare and it is not required). I, too, wonder if the one size fits all is appropriate. How much do we really know about dosage? In short, I do believe in vaccinations, but to make informed choices is not a bad idea. I was home the first five years of her life. Would it have hurt to wait until she was two to get some of those vaccinations? Would she have had seizures from those same shots at two yrs old as she did at 4 months? I can’t say yes or no. What I can say is, Why take the chance? If I had another child, would I do things differently - heck yeah! That’s why I caution parents to be informed and to make informed decisions and to listen to their guts. No, don’t read one book and believe it’s true. Read a lot of books, talk to a lot of parents, talk to knowledgeable doctors. You know, If I did have another child I would be scared to death - but I would know I was not alone. And I would continue to trust my gut.

• Eileen
  Sep 20, 2007 at 4:43 am

  BTW, when I was at home with the babies, I didn’t watch talk shows - I watched soap operas. Now that’s making mountains out of molehills. It taught me a good deal about how my life was actually pretty good. I didn’t have to live through hurricanes with a sexy priest or get jailed for murdering an ex-con with a heart of gold (especially with that nasty case of amnesia!). Watching talk shows would have really screwed me up!

• passionlessDrone
  Sep 20, 2007 at 10:03 am

  Hi long day’s journey into acceptance -

  “I’m not going to listen to anyone who is pushing harmful pseudoscience.

  So, then you agree that ASD is not a disorder but a neurological difference?”

  If there wasn’t the possibility that someone might believe you, this type of dissonance would simply strike me as funny.

  Applied science has shown again and again that there is much more than just
  neurological differences in children with autism. By way of example, here is a recent study
  showing that autistics are much, much more likely to harbor infections of herpes, chlamydia, and mycoplasma than those without a diagnosis:

  Study

  There are many, many other studies detailing abnormalities far removed from the brain in autism, yet because the symptoms are behavioral, people continue to view autism as a neurological disorder only. Not only is this very simple to prove wrong, it takes us in the wrong direction of finding ways to help people with autism.

  This study also raises and interesting point that I believe Ms McCarthy brought up. For reasons as of yet unknown, people with autism seem to have an increased succeptibility to infections, as pointed out by this study. There are also numerous other studies pointing towards immune system dysfunction in autism. Given that,
  does it make sense to have a one size fits all policy towards who gets what immunization? If you knew your child was more likely to be succeptible to infections, would you believe four, six, or eight vaccinations at one visit was a safe course?

  You’re the expert on psuedoscience, and presumably, real science. Perhaps there are studies out there that show that a full vaccination schedule is just as safe for children with increased risks of getting infected
  than children without that risk. If your grasp of science is as keen as your ability to hem and haw on ‘pseudoscience’, and the research proving there is no difference in risk between the two groups is avaialable, you should have
  no problem providing references.

  - pD

• HeatherS
  Sep 20, 2007 at 10:04 am

  Eileen, I share your opinion completely on the vaccinations. One size does not fit all. When our son was diagnosed, we went though the whole “did-the-vaccinations-cause-it?” routine, and we looked back at his reaction to the vaccines that he received when he was younger. He has a bad reaction to the four shots (a total of eight vaccines) he received the day after his first birthday, but even before that, all the signs were right there, we just didn’t recognize them. Like many other parents in our shoes, the most we knew about autism was from watching Rain Man.

  Even after we stopped looking for someone to blame for our boy’s diagnosis, we were cautious about vaccinating our daughter. I’d read a few books that had some good points about vacs. I gave one to my father-in-law (a pediatrician who had assured us that vacs for our boy were completely safe but had to second-guess his 40 year medical opinion after our boy’s diagnosis), who read it cover to cover and agreed to create an altered vaccination schedule for our daughter. He customized it completely for her and our circumstances with a couple of guidelines: No vacs earlier than eight weeks, no multiple sticks on the same visit, no sticks closer than two weeks apart (preferably a month), and avoid “combo” vaccines whenever possible. Also, because there was a whooping cough outbreak in a neighboring county when she was born, we got the DTaP first; since my husband and I are monogamous, non-drug-using, and do not travel internationally, we put the hep B off until later… etc. We also put off her MMR until she was three years old rather than the usual 18 months, just to be extra cautious.

  The point is, regardless of the autism-vaccination non-link, we still thought it was a good idea to have her vaccination schedule customized, not a color-by-numbers approach that the AMA throws at doctor’s offices.

  And Momofthree, this is part of the problem: “she too drifted slowly away into autism.” Your daughter did not drift away. She is right there with you. I certainly hope your daughter doesn’t know you feel this way. Maybe you think she’s too far away to notice what you’re saying, but I assure you, she is not. If you think of your autistic children as “far away” or “locked away”, you may end up treating them that way. They still think and feel and still need as much of their mother’s love as any other child.

• jamie
  Sep 20, 2007 at 10:16 am

  Thank you for all of your feedback.

  Kristina
  My son is very interactive, since he was born I have made sure that he is on track with his development. He will be one tomorrow and has about a 15 word vocabulary, he points at objects when asked where they are. He also loves to play with toys and enjoys interacting with just about anyone.

  His cousin recently has had therapy for what they believe is autism spectrum. That is where my concern comes from and watching too much tv.

  In my heart I don’t truly believe that this is related, but feel like I would be a horrible parent if I did not look at both sides.

  What percent of parents say that one day their child was great and the next they were in their own world. Have these parents asked relatives and day care providers if they suspected anything before the parents? I am only asking not pointing fingers.

• Chris
  Sep 20, 2007 at 11:15 am

  Is it so hard to believe that kids are born with a pre-disposition to not being able to process the toxins and medicines that they injest or are given. We as mothers born and raised in the 60s and to present, have been exposed to more drugs enviromental and medicinal then generations before. From the way foods are made and processed too all the new vaccines. We are chemically changed and our eggs have endored all we have. Vaccines GREAT–except our kids can not handle all at once, or so early. If I had to do it again, I would spread them out and hold off as long as I could. I am a mother who watched the regression, and questioned it all the time. I choose to detox my son at 3, just with simple mud baths, is he cured “NO”, but his awerness to the world around him opened up, and he became teachable, not trained! I believe we will always need to detox him, becasue he comes into contact with toxins and medals everyday and if he can not process it out of his system, it crosses into the blood stream and rests in his brain–blocking the waves and connections. MY only proof is this, at the beginng of last summer we tested his blood and salivia, and he was high in all kinds of things. He did not no his name or mine. At the end of the summer and after about 10 baths, his awerness started lasting longer and stronger. It has been a year now, and he not only knows his name he know my name. He is in school, and he talks, and makes friends, he shows compashion, and love to his sisters and you see him try and help them if they fall or get hurt. MY goal is not for Aidan to appear normal or have politicaly polite behavior, or learn algerbra. I want him to be able to love, and be loved and share his hopes, dreams, and fears with us. He is now doing this, on a simple level, but I did not get this progress or information from his MD. I got your son is autistic, as he spun circles in the corner of the room banging his head, ignoring me crying for 20min.—alternative medicine-worked for us, mud baths, right brain therpy, music, massage, RDI–If the window to help our children is 3-5, I did not have time to wait for them to finish there investigations and testing. I would still be waitng for direction, if I looked to them for help. We all have to figure what line we are willing to draw or cross, when it comes to our kids, when the teachers saw my son this year–they were blow away with his progress–We have moved so far away from endless ours of head banging and tantrum in the corner.SIT down-SIT downSit down in sign, to teach him how to sit at the dinner table. And now I holler time to Eat and all 3 kids come running to the table, and I hear ZUCCINI- I LOVE ZUCCINI! it was the BEST–I hope as a mother that the judgement-between us, is lessoned–and I appreciate and have learned more from mothers and autistic children, and autistic adults then ANYONE!

• Judith Ursitti
  Sep 20, 2007 at 2:44 pm

  Loved the “leave Jenny alone” reference! I needed a good laugh today after a 2 hour IEP team meeting for my sweet 4 year old…

  Stress, stress, stress…

• Kristina Chew, PhD
  Sep 20, 2007 at 3:51 pm

  Hope the IEP meeting had good results (from yours and your child’s perspective).

• lily's mom
  Sep 20, 2007 at 4:12 pm

  I watched the whole show and felt that Jenny was speaking as a mom telling a story of what worked for her family. I did not feel that she degraded her son or anyone else with what she had to say. Her message was one of hope - and a promise to other parents of children with autism that they are not alone. She did a lot of research online because she did not feel like she was getting enough from the medical community. I have done the same thing - when you know that you are just getting the easy out answer from your doctors, you find new doctors and go in armed with as much info. as you can find. Great job Jenny! I loved the show!

• Judith Ursitti
  Sep 20, 2007 at 4:16 pm

  Wish Oprah would do a show about IEP induced stress … Maybe if I finally have that plastic surgery she’ll have me on. :)

  Real life … just not that sexy…

• Kristina Chew, PhD
  Sep 20, 2007 at 4:24 pm

  That’s the living truth—-but IEP meetings and getting the right kind of education for our kids, it goes without saying, are part of the “autism parent life.”

• Momofthree
  Sep 20, 2007 at 5:22 pm

  How else am I suppose to use WORDS to describe what happened to my child. How dare you suggest I love them any less. Of coasre she is right here, of coarse she understands! God gave me these special children to love unconditionally, that is my job and my honor! THIS is one of the problems many parents of special children must deal with. How do we put into words what happened without someone judging us on the words we use? How else could I possibly explain the slow descent into autism? How can I describe the pain and tears my family has gone through? For you to say “I certainly hope your daughter doesn’t know you feel this way” is almost evil in its attemp to crush my soul. My daughter is loved.

• Suzanne
  Sep 20, 2007 at 5:53 pm

  to passionless drone, what I meant by the REAL autism community, was as KimJ said. I should have said the autistic community. This is not a matter of judgment about which perspective is “right”. It is about going to the source.

• long day's journey into acceptance
  Sep 20, 2007 at 8:17 pm

  pD:

  I am extraordinarily familiar with immune-mediated issues and learning differences. I also know Garth and I’m not too keen on his the quality of his research. Sorry. I was dx’d with both an immune-mediated illness and learning disability decades ago (when there were other labels). I have seen and/or spoken (thru the decades) with many whom you would quote to support your p.o.v and there was a time when I gave them the benefit of the doubt. However, I saw too much un-professionalism by same said scientists for my taste.

  Science has known for decades about there being certain immune-mediated illnesses which seem to cluster around what would were termed “mental disorders”. So, far, however there’s been nothing definitive/landmark.

  I am in complete agreement with what you are saying here:

  ” … people continue to view autism as a neurological disorder only. Not only is this very simple to prove wrong, it takes us in the wrong direction of finding ways to help people with autism.”

  Furthermore, I have found the “leading lights” to be lacking in thinking about health issues outside of their pet theories. A family member spent a lot of time under the care of an “autism maverick” who failed to diagnose several systemic health issues … which standard docs found and treated, but not until a few years had passed. More on this at some other time; some other place.

• long day's journey into acceptance
  Sep 20, 2007 at 8:37 pm

  “Most of the educational labels are very different from an actual professional diagnosis that the student has/may receive.”

  Chuck, thank-you. For some reason, I had long-thought you were in California. What’s your viewpoint on ‘education labels’ vs. DSM dx’s ? Generally speaking, which label do you think gets the child the best help needed? Thanks.

• Moi ;)
  Sep 20, 2007 at 10:03 pm

  I didn’t bother to watch her. After her new age “Indigo Moms” website, I figured this wasn’t going to be much different. Kevin Leitch posted about that Indigo Moms site. She is an “Indigo Mom.” Her son was a “Crystal Child.”

  @@ Dee-doo-dee-doo (hear Twilight Zone Music…?!)

• Kristina Chew, PhD
  Sep 20, 2007 at 10:47 pm

  Momofthree, thank you for writing about your children—hope they all continue to grow and learn. Best wishes—-

• Gail Eisenberg
  Sep 20, 2007 at 10:52 pm

  I applaude Holly and Jenny. Our 16 year old son has PDD NOS. He has come a long way. He has other developmental issues as well. My husband has CP and understands how you must fight for your child and his needs. After two awful group homes my son lives at school and comes home for
  weekends. He has matured is doing great at his wonderful school.We have been very fortunate and got him great resources when he is at home.
  His older sister is interested in psychology and is a big help. He is visited every weekend by community kids and is treated lilke an equal. He really loves spending time with the boys.
  We are very thankful for all the help we have been getting. Parents keep fghting for your child.
  It is the best things you can do to get what your child deserves. There are good people out there who want to help. We have met some really cruel people also. But at least they are a small group. Everyone is so proud of our efforts. Our families are out of town so we have been on our own. We are so proud of Moshe’s progress and hope he will continure to grow into a young man we will continue to be proud of.

• Whisper, Shout, Sing
  Sep 20, 2007 at 11:51 pm

  […] Jim Carrey is, per his girlfriend, autism mother Jenny McCarthy, the “autism whisperer.” I take that to mean that Carrey has, in some […]

• Chuck
  Sep 21, 2007 at 12:03 am

  The only label that gets a child the best help needed is parent or caregiver. Without that, the child gets little. It is the only consistent label in my child’s life.

• joycewebb
  Sep 21, 2007 at 12:05 am

  I praise jennie mccarthy for speaking out on autism. I have 5 year old twin grandboys with autism. They are doing so much better since we have gotton them into therapy, and are starting to say a few words. My daughter ask me why and the only answer that I can give her is that god gives special children to special parents. Also jim carrey you are one in a million. I hope that my daughter can someday meet some-one like you that will accept the boys as you have done.

• Chuck
  Sep 21, 2007 at 12:08 am

  OK, that was the mushy answer. Realistically, my child has no professional diagnosis and has had multiple learning labels, none of them being ASD.

• Brain Networks and Intelligence
  Sep 21, 2007 at 12:22 am

  […] a post yesterday (not the one about Jenny McCarthy), I wrote about whether IQ testing is necessary as a measure of intelligence. A recent study looks […]

• passionlessDrone
  Sep 21, 2007 at 8:51 am

  Hi long day’s jounrney into acceptance -

  “I am in complete agreement with what you are saying here:”

  I must have misunderstood your meaning earlier in that case. I certainly did not think you would have agreed; my apologies.

  - pD

• Linda
  Sep 21, 2007 at 12:19 pm

  Just a quick reminder to all. We are all people first. The correct term is child/person with autism not the other way around. This may seem petty to some, but it shows how you see the child/person. Autism shouldn’t be the sole defenition of a person. It isn’t for my son. He is my child, he is funny, sweet, silly, smart, hard headed, and happens to have autism. I hate the word autistic it sounds ignorant.

• HeatherS
  Sep 21, 2007 at 12:46 pm

  Linda, you know it’s interesting that you hate the word “autistic”. I rather don’t like “has autism”. Here’s the thing: Autism is a pervasive condition. It colors every aspect of my child’s being. I can understand how some parents may feel that it is wrapping up a person in a single bundle, but as it is impossible to separate a person from their autism, and the autism is so much a part of a person’s mind, body and spirit, I have no problem saying that my son is autistic. To say that he “has autism” sounds like a) it’s a temporary condition, or b) the same way one might say, “he has the plague”. It just rubs me the wrong way. But you say it your way and I’ll say it mine. It’s just a semantics debate that will probably never have a satisfactory conclusion.

• KimJ
  Sep 21, 2007 at 1:01 pm

  Linda, that is your opinion. You choose to say “has” or “with autism”. Many choose to say “autistic”. They actually mean different things and reflect a sentiment about ASD. My child doesn’t “happen to have autism” any more than he “happens to have intelligence”. He is a smart, autistic boy.
  It always comes up, regardless of how many times we state our case, that we are “ignorant” for choosing to view our kids as whole, autistic people.

• jypsy
  Sep 21, 2007 at 1:06 pm

  Given the number of autistics who insist on being referred to as “autistic”, not “person with autism”, what makes you, Linda, a non-autistic (I presume) the person to tell us all what the “correct term” is?

• Ms Clark
  Sep 21, 2007 at 2:03 pm

  As far as I know, very few Deaf people want to be called a “person with deafness” or “a person with hearing loss” or and blind people don’t all go for “a person with low vision” “a person with blindness”. I don’t hear people getting all upset and saying that they aren’t to be called Deaf and blind, other than those who are “legally blind” or have mild hearing loss, they might think Deaf and blind is kind of misleading since they aren’t totally deaf or blind.

  I can see not calling someone “a victim of something” or “confined to a wheelchair”.

  If Down’s folks want to be called, “people with Down syndrome” that’s fine by me. I haven’t heard one way or the other, they seem to think that the Down’s is intrinsic to who they are, the way I think my child’s ASD and mine is intrinsic to us.

  Calling a person “autistic” is problematic to people who think “autistic” is an insult and that autism is totally a bad thing. If they want to remove the autism they need to imagine it as something separate from the kid, obviously.

  And yeah, what jypsy wrote.

• julie
  Sep 21, 2007 at 2:33 pm

  Again I find it ironic we are debating how one communicates about autism. In the end if the person who is autistic or has autism feels loved and supported what difference does it make how we refer to it.

• Terry
  Sep 21, 2007 at 2:48 pm

  I watched about 10 minutes of the Oprah show with Jenny McCarthy on it and I had to turn it off. As a mother of TWO autistic children I was offended by what I saw. What a load of crap! I get tired of hearing nothing but negative things. When my sons were diagnosed I didn’t fall apart. I get tired of people trying to make the diagnosis of autism like their child is dying. Your child is very much alive and needs you to be there for them. Enough with this “feel sorry for me” bullcrap. Maybe more parents should worry about just spending TIME with their children, instead of “curing” them and turning them into something they aren’t. The whole “cure” thing reminds me of stepford children. I, for one, would not change a damn thing about my boys.

• Eileen
  Sep 21, 2007 at 3:14 pm

  Again, it’s funny how semantics can polarize people who all have the same goals. Autism, Autistic,the fact that I feel the need to capitalize the “A” when using either word - in my humble opinion we are all talking about the same thing. The difference is what makes some feel comfortable saying or what others feel is offensive.

  A rose is a rose - and all that stuff. I understand how we are all trying to get our opinions out there, I just dislike that the message is being drowned out by semantics.

  My post really doesn’t have a point about autism. Just a reminder that we’re mostly all in the same boat. We need to respect eachother a little more and remember that we’ve had enough hurt from those who don’t understand us or our children - there is no need to hurt eachother.

  My child has/is Autism/Autistic. She is loved - just like you all with yours. I might not agree with some of you, but I respect you enough to listen with an open heart.

  (And, in case anyone is offended with that, no I’m not the only one who respects anyone - I see a lot of respect on this forum - that’s why I like it so much!)

• Kassiane
  Sep 21, 2007 at 3:34 pm

  I’m autistic. I don’t have autism. I have brownish reddish hair. You can dye my hair and make it look blonde. You can’t dye me and make me look NT.

  And somehow I suspect Jenny McCarthy has only 1/3 of 1/8 of a square root of a clue of what she is repeating/preaching…

• Ms Clark
  Sep 21, 2007 at 3:43 pm

  What I see in Jenny McCarthy is a has been dumb blonde actress who is starting to get too old for playing the girl who eats her own vomit and sits in a pool of her own menstrual blood because she’s so stupid (this isn’t even stupid, this is just sick, like a side show geek that bites the heads off of chickens).

  So she goes off into indigomom land and finds that there’s no money there, so she totally scraps the moms she was “supporting” there and giving advise to about how to raise a mystical crystal child with angel therapy and all… and starts to discover the wonders of quack therapy, etc, sees she’ll have bigger audience of flaming nutjobs in the case of the mercury litigant parents and wing-nut paranoid conspiracy theorists and antivaxers. So she dumps the indigo thing, **lies** about what she thought indigo meant all along (now indigo is ADHD and crystal means autism).

  It’s a smart career move, compared to trying to continue to eat vomit on screen, she’s now the wholesome biomed mom in people magazine who is into vitamins, diflucan and astrology.

  Oops, she forgot to dump the astrology part of the indigo mom world. I’m guessing some of this was at the encouragement of her career advisors. Same with Jim Carey, how long can he go on being an idiot on screen? The old idiots are replaced by the new idiots. They will be dumber than the old dumb ones. As everything in the media gets dumber and dumber…. as news gets dumbed down to ridiculous levels and parents take advice from a woman is is **obviously** lacking in intelligence and really… is. not. that. pretty. Hence the roles she played of women farting and eating vomit that are turned down by really pretty and really talented actresses because they aren’t as desperate for work, that’s how it looks to me, anyway.

• julie
  Sep 21, 2007 at 3:52 pm

  I did not see a dump blonde at all what I saw was amother who was trying to do the best that she could for her son because she loves him. I agree that I can not cure autism it is something that my daughter will always have. I believe that was what Jenny said as well I think sometimes what people say can offend us because we arelistening to the words and not what the intent of the words are. I do not have enough time in my day to spend judging people for how they chose to communicate about the journsey that they have had in life. I choose to foceus my energy on helping my children. I believe Jenny even said that she is not antivaccine, she would just like them to look at each individual child and the vaccine that is being given. I personally think this is responsible, I do not believe that vaccines have anything to do with my daughter and autism, but I had a reaction to a vaccine when I was a child because of that my children did not recieve that vaccine until they came out with one that was not live and they were older, what is wrong with saying one size does not fit all.

• Eileen
  Sep 21, 2007 at 5:11 pm

  Ms. Clark

  OUCH - how do you really feel?

• Ms Clark
  Sep 21, 2007 at 5:18 pm

  Eileen. Sorry, it must be that I’m lacking that NTish filter for my free association of thoughts…
  :-) Autistics are known for being blunt. But we are honest, at least.

• Suzanne
  Sep 21, 2007 at 6:53 pm

  julie, if you’re still around… I also agree one size does not fit all RE vaccines (and much more). also, You said, “we arelistening to the words and not what the intent of the words are”. When you write a book and promote it on Oprah, your words had better indicate your intent. When she got divorced and thought no one would love her because of her autistic son, that says something. When she adds “I don’t care how big your boobs are, or how blonde your hair is”, she indicates that those are a woman’s most lovable attributes. She saw that her appearance could no longer be enough, because of her burdensome son. How else could that quote have been interpreted? How will her s