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Initial post: Sep 26, 2007 1:04:09 PM PDT
Last edited by the author on Oct 26, 2007 11:41:05 AM PDT
J. Cooper says:
I have been around the autism world for years, and I have never heard of any of our kids having seizures when they were little. I'm sure there are some kids with co-morbidity, and they may have seizures, but I haven't heard it linked directly to autism. I know that Jenny doesn't like hearing the "misdiagnosed" theory, but I think she is sending out false hope to many families out there. She is saying that when GFCF is used it can make a big difference. I know mothers who were strict with this diet for their kids, and have had no results at all. Some did the added supplement thing, and it also did nothing. Of course, it may help with some. My son has had major improvements due to a lot of other interventions: Speech/language pragmatics, OT, Counseling, Social skills groups, extensive IEP, and a very loving and supportive family. I think that families have to try everything they can, but to say that autism is cured is just really bad press for those of us out there that are fighting for more funding for a real cure to autism!! There are a lot of scientists out there who are in the process of finding the gene (genetic factor), and if it is genetic...it can't just be cured by changing diets or taking supplements! Let's just get to the bottom of it, and perhaps those of us who aren't out there to make a buck, but only to help our kids, will one day get the answer we pray for every day!

In reply to an earlier post on Sep 26, 2007 8:47:55 PM PDT
The GFCF diet works for some, but not all. It worked in conjunction with Auditory Integration Therapy for Ashley. It seems to work best with children who have leaky guts.

Other children, like Tony Randazzo from FIGHTING FOR TONY have allergies. In his case, removing milk from his diet freed him from autism. Raun Kaufman was severely autistic as a toddler. He has since been free of autism thanks to early intervention and having others participate in self stimming with him during his down time. Raun has been off the spectrum since he was 3. Raun, now in his 30s is CEO of a company and has a degree in bioethics.

Sean Barron of THERE'S A BOY IN HERE, mildly autistic used his intelligence and guidance from others to move forward.

Other children do well with ABA and Floor Time. It really depends upon the individual. Still, it is in the interest of every child to explore possibilities until you hit that jackpot and it is ALWAYS worth it.

In reply to an earlier post on Sep 29, 2007 6:10:31 PM PDT
Bravo! I have a fifteen year-old son with Autism and he is in a great and loving educational placement that includes OT, social skills, speech therapy, etc. I've been reading many of the posts concerning this book and I agree that parents should try everything, but I've cautioned that Ms. McCarthy's assertions are not at all new. I think her book is irresponsible and should not be endorsed in any way. I additionally believe that her son is misdiagnosed.

In reply to an earlier post on Sep 30, 2007 10:01:15 AM PDT
J. Cooper says:
Thank you for what you said. In the previous post from BeatleBangs1964 they also say that a child was cured by the age of 3. Most autistic children aren't even diagnosed by that age, so again, I believe that misdiagnosis was at play. This is especially because he is now 30 years old, and back then, there was very little known about autism, which leads me to believe that it is highly likely that there were many other issues at play. I am very happy for them that Raun is now a CEO, but to go about saying he was autistic and cured is laughable. For those of us fighting for better research and funding, and knowing that autism is truly real, think back into the recesses of your mind and tell the world, there MAY have been autism....not there WAS autism. I am so tired of people like Jenny "selling" her son's story. Isn't money wonderful??? Perhaps I should write about my son's journey. After all, I'm not a movie star already making lots of money. I'm just a single mom, a teacher, trying to make ends meet, and helping my son the best way I know how!

In reply to an earlier post on Sep 30, 2007 5:51:18 PM PDT
Seizure disorders are not uncommon in individuals with autism. It is a common comorbidity along with Tourette's and tic disorders, bipolar disorders, and OCD.

In reply to an earlier post on Oct 1, 2007 9:59:50 AM PDT
Please read page 158 "Straight Talk About Psychiatric Medications for Kids" which states :It is notable that many children with PPD or AUTISM also have a seizure disorder and require anticonvulsant." My daughter has seizures during rages- her eyes roll back into her head or she stares like a deer in headlights. Her doctor has her on anti-seizure meds.

In reply to an earlier post on Oct 1, 2007 12:10:16 PM PDT
Clearly, Autism is very different among individuals. As a person who has worked in medical research for many years though, it is never difficult to find written word to agree with any hypothesis. Frankly, Ms. McCarthy is
an actress and entertainer, not an expert on Autism. Her book is irresponsible and I hope that every parent does ALL the research necessary to be advocates for their children.

In reply to an earlier post on Oct 2, 2007 12:03:25 PM PDT
MamitaIve says:
I don't think this is an issue of misdiagnosis. The fact is that autism is not called a 'spectrum' for nothing. There are many factors involved, and the term is incredibly broad, too many related sub-conditions. This is why parents end up doing a great deal of trial and error to discover what might work for their child. Our son responded very well to the GFCF diet, although I would not say he's 'recovered'. I just don't like that term. I know the autism is still an issue. But his gastrointestinal issues, the pain and discomfort caused by them are gone-for that I'm grateful. And since he's no longer in pain, of course he pays more attention, and his behavior improved significantly. The issue, at least for our family is to give our son improved quality of life, and slowly but surely I believe we're doing that. And he does his traditional therapies as well: speech, OT, etc: whatever works! On the other hand, I have friends that tried the diet with their children and they saw no change. Other approaches were more successful in their children's cases. There is no 'one size fits all' with autism.

In reply to an earlier post on Oct 4, 2007 12:51:00 PM PDT
Last edited by the author on Oct 4, 2007 12:52:25 PM PDT
I've been following this story from afar and over time came to suspect that this child had been misdiagnosed - or that he is certainly suffering from an extremely mild case, if such a thing is possible. Forgive me, but even the photos of the child looking inquisitively at the camera in every shot speak against the likelihood that this boy is presenting anything like typical symptoms of autism. Additionally, I'm sorry to say, Jenny has made a real effort to erase her recent past forays into true lunacy: she had a website called "Indigo Moms" in which she bought into the idea that autistic kids were "indigo children" and their moms "crystal people" or some damn thing - sad, but truly cracked. The site has been expunged, and the true desperation it represents papered over. Her now-destructive and I believe reckless efforts to revive (because, let's face it, they had started to abate) anti-vaccine hysteria are a symptom of her own pain, indeed, but also self-righteousness and narcissism.

In reply to an earlier post on Oct 6, 2007 2:15:35 PM PDT
Last edited by the author on Oct 6, 2007 2:28:20 PM PDT
Yes, it's true Raun Kaufman was diagnosed early by a panel of doctors. While it may seem odd to J Cooper that this diagnosis was done so early, Raun's autistic symptoms were so severe that the doctors could not ignore the obvious. Actually, Raun was in a mainstream Kindergarten with no sign of his former Autistic condition by the age of 5 years old. Yes, Raun's parents did dietary interventions long before most considered a connection. That said, once the fog clears, a teaching modality is needed. Raun's parents created their own. It is now known as the Son-Rise Program. After graduating from Brown University, Raun eventually became CEO of the Autism Treatment Center of America, where they teach the Son-Rise Program. The Son-Rise Program has been a crucial ingredient for tens of thousands of families, including our own. We are getting our daughter back and our family has learned how to thrive with life's challenges! If you want more information about this, check out these websites:
http://www.autismtreatmentcenter.org/
http://www.tenthingsautism.com/book.html
http://www.kylestreehouse.org/about.cfm Kyle Westphal's recovery story has been featured on the Discovery Channel and FOX News.
"A Miracle To Believe In"
Entire Book Online. Note events take place in the 1970's.
http://www.autismtreatmentcenter.org/contents/resources/miracle/prologue.php
"A Miracle To Believe In" Chapter 24
Includes Dr. Yorke's Report on Robertito's progress. Takes place in 1978. Gives reader good motivation to read entire book.
http://www.autismtreatmentcenter.org/contents/resources/miracle/chapter24.php
A Recovery Story: Jade Hogan
21 minute video spans from on-set (solitary life) to recovery (talking on the phone, playing T-Ball, etc.)
{Note: It seems to play better on MS Internet Explorer, than Netscape.}
http://video.yahoo.com/video/play?vid=109310
As to the original post's assertion about seizures, many Autism Spectrum kids have seizures.

In reply to an earlier post on Oct 9, 2007 3:01:31 PM PDT
J. D. Beck says:
It would be far easier for frustrated parents to "do their research" if medical professions were open to dietary and biomedical approaches.

We were lucky that our day-to-day pediatrician supported us, counseled us where necessary and kept an open mind.

Dr. Jerry (Jenny's son's doctor) has helped our son make tremendous strides as well. He'll always be autistic (i.e., his brain works differently and his senses process the word differently) but he is now indistinguishable.

Many of you would say my son was misdiagnosed. When he didn't speak, had 0 eye contact and opened/closed doors incessantly at age 2.5, you wouldn't have thought he was misdiagnosed. He's better now; we can agree to disagree.

Jenny's book has the potential to help a lot of people. Or at least get people thinking/researching/hoping about some positive outcomes in their own kids lives...

In reply to an earlier post on Oct 26, 2007 10:16:19 AM PDT
Kate says:
I couldn't agree with you more. I have chosen the same therapies you have with your son and they have worked wonders. Do I want to try GFCF and suppliments? No. Do I judge other parents who do? No.
I just wish Jenny was a little more tolerant of the other mothers who are going through their own struggles with autism.

In reply to an earlier post on Nov 6, 2007 7:20:23 AM PST
L. Dill says:
Let me first start by saying, that my twin daughters do not have autism. They both do, however, have sensory processing disorder and we still are working through sensory issues at age 6 1/2. There is an overlap on the spectrum of SPD and autism, as many of you well know. I have heard from many moms that a GFCF diet can help sensory issues improve, and if that is the case, would that also not help the autistic child in some way? It does seem to me that Jenny's son is either mildly autistic or perhaps a more intense SPD kiddo. SPD, in and of itself, can very much appear like autism. My daughter would not make eye contact, she flapped, rocked and performed other self-stimming behaviour, she has big tactile sensory issues, cannot find any clothes, unnderwear, socks etc. that she can tolerate without going into a full-blown rage, she has had difficulties socially relating to others and it took her until she was about 5 years old to start hugging us back and showing any form of physical affection. Every, and I mean EVERY, time she was buckled into a car seat, we had a major full-blown melt down/temper tantrum/fit of rage due to wrinkles in her clothing under the seat belts. She never wanted to play "with" other kids, only "beside" them and she loved to line things up, spin them and play with objects such as door knobs and mechanical things instead of her toys. She has and still will go into rages that are completely unexpected. I'm sure she *could* have been diagnosed with autism, and I could be telling you now that she is almost cured....But the fact is that may children who have Sensory Processing Disorder are misdiagnosed with autism in early diagnoses, because the two can look like eachother and coincide with eachother (most likely).

In any case, I had not tried a GFCF diet with my kids for their sensory issues. I have done sensory integration therapy under Lucy Miller at the Star Center and saw great improvements. My daughters tactile issues still remain, however, and I have not seen a lot of improvement with that. NOW THAT BEING SAID, she has been breaking out in hives 3-4 times a week and I believe I have it narrowed down to a milk allergy (for which she will be tested next week). I find it interesting that this is now occurring, and can only wonder if she has been continually exposed to an allergen, if a GFCF diet would in fact help her. Only an experiment would answer that question.

With Autism there is a broad spectrum and many overlapping and coinciding disorders. None of us have all of the answers, not even the "professionals"....so it only makes sense that we all have an open mind, try some things, do what works and leave the rest. Best wishes to you all in all of your journey's to help your children, whether autistic or not....

L. Dill

In reply to an earlier post on Dec 18, 2007 8:29:59 AM PST
Most kids ARE diagnosed by the age of 3.

In reply to an earlier post on Dec 18, 2007 8:30:50 AM PST
She never said he was cured; she said he was getting better, living better. He still flaps his arms and stares, he still needs intervention, hence the fact that he is not cured.

In reply to an earlier post on Dec 18, 2007 8:37:54 AM PST
J. Cooper says:
I don't know where you got your statistics of "MOST kids ARE diagnosed by the age of 3" because MANY are misdiagnosed at an early age, and not diagnosed. AND some kids on the spectrum DO talk, so they are NOT diagnosed with autism, because many of the medical community ARE NOT fully educated about the SPECTRUM!!!

In reply to an earlier post on Dec 18, 2007 8:49:20 AM PST
J. Cooper says:
She never said he was cured, she is a smart woman...she said he was HEALED!!! Well...let's think about this for a minute. If you had a broken arm and it healed, if xrayed, the medical community could tell that there was once a broken arm, but once it's healed you have full use of it, as if it was never broken. If you fall down and skin your knee badly, it's gross and bloody, but once it is HEALED, there is usually some kind of scar, but the knee is just FINE!! If this was true of autism, then what she said worked for her kid would work for all. It hasn't, period. Listen, I used to like Jenny as a person when I knew her...I used to manage another actress on Baywatch, so I have nothing against her personally, and if my kid could be healed...WOW. But I still think she is doing a dis-service to the autism community, because there needs to be major fundraising for scientific research...there still isn't the funding available for what we need right now. Get involved in fundraising, and you will be helping the autistic community at large.
Thank you!!!

In reply to an earlier post on Feb 16, 2008 5:21:21 PM PST
K. E. Pebley says:
Bravo to your comment on Jenny McCarthy's book. I also believe her "indigo moms" was such hogwash and when you try and find things on the subject or look at the website it's gone with no explanation. I mentioned that in a review for the book and Amazon had "conveniently deleted" what I had said. Now I know I can't trust any of the reviews I see.

From,
A mother of an autisitic child

In reply to an earlier post on Apr 10, 2008 11:26:04 PM PDT
E. Hughes says:
The only EXPERTS on Autism are the parents. I cringed at the thought of McCarthy as a spokesperson but the attention (good and bad) she creates is still attention for Autism. My daughter is severly Autistic and it has been very clear to me that until someone who "mattered" had a child with Autism, Autism wouldn't matter to the general public.

In reply to an earlier post on May 10, 2008 10:53:26 AM PDT
L. Harris says:
As someone who works in preschool special ed, I am often the one to tell parents for the first time that their child is autistic. They are bewildered, incredulous, angry -- but, at that point in the child's development, they are NOT experts on autism. Many of them go on to see their child through a different (autistic) lens, to re-interpret behaviors they previously ascribed to "stubbornness," "laziness," "being spoiled," etc. By working together, we help the child progress and help the parent feel informed, empowered and in charge. Before long, they ARE the experts on their child and his diagnosis, but it doesn't always start out that way.

In reply to an earlier post on Aug 31, 2008 11:53:10 PM PDT
Last edited by the author on Aug 31, 2008 11:55:38 PM PDT
Infopusher says:
L. Dill, your daugthers sounds very much like my son. He had/has SPD, but was never formally diagnosed on the autism spectrum. He went through sensory integration therapy until he improved so much that we were doing fine on our own with a home brain gym program. He was already off milk and doing relatively well, but still struggling with sensory and social issues. We happened to sign him up for swimming 2 hours a week at the same time we experimented with taking him off gluten. The combination was incredible for him. He and I are both sure that this has made the difference because when he eats a wrong food, or doesn't get enough integrating exercise he starts "slipping away" again. But now we know how to bring him back.

It can't hurt to try going gluten free for a few weeks. We have had to add a few supplements along the way. I also suspect that certain types of exercise can provide great input for some higher level kids to take them beyond where O.T. gets them.

penelope
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Total posts:  21
Initial post:  Sep 26, 2007
Latest post:  Aug 31, 2008

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Louder Than Words: A Mother's Journey in Healing Autism
Louder Than Words: A Mother's Journey in Healing Autism by Jenny McCarthy (Paperback - August 26, 2008)
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