Temple Grandin on GFCF Diet (High Praise) and Regressive Autism (More than Genes)
Check out Scene Newspaper with Temple Grandin. She speaks plainly, logically and eloquently about autism as a spectrum. Tune into HBO's Temple Grandin starring Claire Danes"" Saturday, February 6th at 8pm. (Photo credit, Rosalie Winard.)
Some salient paragraphs from the scene article:
“...You have to remember autism is a spectrum that goes all the way from very, very, very severe where the person is going to remain non-verbal and handicapped, to people that are brilliant scientists. It’s a huge spectrum,” she said. “I don’t think the increase is the mild end because the Asperger types have always been there. I think some of the real mild autism – some of the Asperger’s – there’s increased diagnosis.
“But in young kids where you have speech delay and autistic-type behavior, that’s not increased diagnosis. Something’s going on. And nobody really knows what. There’s a lot of speculation. I think there has been an increase in some of this very severe, early onset autism, especially this regressive type, where the kid seems to be somewhat normal – verified by looking at birthday party videos in a study by Geraldine Dawson at the University of Washington. The parents are right. There really is a regressive form of autism. If this is something happening at 18 months to 2 years of age – there’s some other insult getting in there acting with susceptible genetics – that needs to be looked at very, very carefully. That’s some of the real severe stuff. That regressive sample needs to be looked at separately.
“We don’t understand the whole increase thing. It’s complicated genetics. But genetics is half the story,” she continued. “One thing that everyone knows is that early intervention helps to improve the prognosis immensely. Other things that help are some of the special diets. Gluten-free, casein-free, cutting out tons of carbs. They don’t cure autism, but they really help some kids. Some of these regressive kids tend to respond to the diets.
“I also think the American diet is bad. I’d say of all of the alternative treatments, diet is the single most important thing for parents to try. The other thing that’s getting really good science now are the Omega 3s. They have tons of good science. Give them Omega 3s.”
Regarding Grandin's life story, I thought I had it bad in school until I watched the movie of her life story. She is to be praised for bringing out into the open the insidious nature of the disorder which conceals the remarkable creativity and intelligence of the sufferer while condemning them to solitary confinement in a world filled with people with whom they cannot communicate. Her mother also deserves the highest praise for the dedication and single minded persistence which guided her family. It is essential that the search for ameliorations, including dietary, continue unabated.
Posted by: James Pannozzi | June 08, 2010 at 09:09 AM
I really don't get what the big deal is about mentioning the diet, but I have found that virtually noone in the medical community including EI therapists want to acknowledge that the diet works or that vaccines may play a role. They actually sort of belittle you if you bring any of it up, weird right?
My son showed significant autism symptoms at 24 months immediately after recieving his flu shots( seasonal and H1N1).I immediately started him on nightly epsom salt baths and the GFCF diet along with some supplements including fish oils and within 2 days, my baby came back! We are now looking into possible celiac disease.
I am outraged that this simple and perfectly safe course is not recommended to every parent who has concerns about asd.
I will never Shut Up! It works!
Posted by: Joanna | February 23, 2010 at 09:21 PM
"Every spectrum kid has a parent or both parents on the spectrum in some fashion."
We parents are not ASD in any fashion, nor do we know any parents of ASD kids that are.
Posted by: A Mom | February 07, 2010 at 02:41 PM
While I don't think that "Every spectrum kid has a parent or both parents on the spectrum in some fashion" (some, yes, but not every single one) I also don't think that "quiet in the south" is displaying self loathing. I think she is saying what many in the biomedical camp are saying: There can be a genetic susceptibility which interacts with increased vaccines and environmental toxins to throw the body off kilter, causing inflammation in the brain and methylation dysfunction. Sounds like she is using biomedical on her son and is more in disagreement with some in the ND movement than with the biomedical camp. She describes her family well, and sees certain issues but distinguishes between the less severely affected older generations and her more severely affected son. That is her experience.
Posted by: Twyla | February 07, 2010 at 01:25 PM
mark not quite sure how you feel I am self loathing but only reporting things from my perspective. I don't believe my genes are my destiny but they are my Reality and i can't ignore them. The DAN doc who has done the screening on my family and im sure you wouldn't of accused him of self loathing on a public forum states that are dna detox profile is what he sees in 90% of his autistic families poor methylators with no glutathione. Gosh I really do hate that, but do i self loathe NO i take methylation and glutathione support. Sorry this upsets you so but we are healthier for my self loathing
Posted by: quiet in the south | February 07, 2010 at 01:02 PM
Quiet in the south. I couldn't disagree with you more. This kind of self-loathing is just the latest phase of the blame-the-mother theory of Bettelheim, only this time they're blaming the parents' genes. When you find what you think is autism in yourself, you are simply giving up on your own personal development. There are smart people with autistic children and without and there are not-so-smart people with and without autistic children. Genes aren't your destiny, at least not this part of it.
Posted by: Mark Blaxill | February 07, 2010 at 11:05 AM
KHW i am totally with you on this. I don't know why we are all fighting because we are all obviously on the same team. Every spectrum kid has a parent or both parents on the spectrum in some fashion. Mom may have inattentive ADD but for most of us we have been functional productive adults. We have genetic quirks snps whatever you want to call it that you can sum up in one word "methylation" We are great out of the box, rapid brain processors but its a tricky thing when you mess it up the brain starts blowing smoke with add, then bipolar then addiction then schizophrenia then autism. The difference for earlier generations and even the ND in college before they increased the vaccines in the early 90's is toxic load. I know this is simplistic but these are incredible machines that need to be fed high octane fuel to produce the genius we have seen in past generations. Unfortunately our children are being fed crap from the food, water, environment the vaccines were the tipping point, so their beautiful brains are blowing smoke that is what i saw in my sons amen clinic spect scan.. brain inflammation. So i am going to heal his gut, whole organic foods support his unique methylation pathway through testing done by dr amy yasko. I am not going to change who my son is bc in my family our brains our different. you just have to have dinner with us to know that. But what the ND people have to realize is that these superprocessing brains these kids have can't operate in todays environment without assistance--diet, supplements etc. All you have to do is have dinner with these young families at dinner to figure that out.
Posted by: quiet in the south | February 07, 2010 at 10:42 AM
Hurray for Bad Apple and Jakes's thought. Horray for anyone who will say something authentic that others in the midst of it all maybe won't like. Hooray for anyone who fights the drift--which does make things easier to get one's mind around--to DIVIDE people who are fighting the same fight in the autism community.
Posted by: The Goforits | February 06, 2010 at 05:28 PM
Yes, I think it's great what Temple has managed and I wouldn't want to take away from her accomplishments. However, there are a few things that I think must be said, anyway.
I've done rather well, too, if I do say so myself. Altho I am not diagnosed, I will say that I've long (since I was eight years old some forty plus years ago) considered myself, without a doubt, high on the spectrum. By all traditionally recognized standards, I've done ok. I have a college education, a nice house in the suburbs, and a family.
I know that Bill Cosby has come out and said some things about black people, and how it is that their tendencies, some of them, to want to see themselves as victims in our society is harmful to them. And I do understand the view that many have that a dx for a high functioning individual on the spectrum could very well do them more harm than good, and I in fact tend to agree. All of that being said, I'm going to go ahead and say some things now that I know I shouldn't say. But wth. I've spent too many years saying too little. As I've said before, I have some making up to do.
I went to school, got an engineering degree, then went and took an exam some years later to get my PE license. These things should have, for all intents and purposes, put me in pretty good standing career wise. And yet I understand all too well one thing. These things, plus a buck and a half, will buy me a cup of coffee at a fast food joint. Why do I think that is?, you might wonder.
Well for me it could have been for a number of reasons. It could be that I was a woman in a traditionally male dominated field. Or it could just be that I have rather a bad attitude--although honestly my attitude used to be much better but that was many years ago (before I was told I'd be arrested if I didn't stop with the asking people if they'd like information.) No, I think that for me and for many on the spectrum, it pretty much comes down to this one simple thing. We are not, as Temple says, 'yak-yaks'. We may be able to learn as much or more than your average neuro-typical person. We may be adept at putting that knowledge to good use. We may be able to communicate with our coworkers just fine when it comes to the kinds of communication that is needed in order to get a job done. But lets face it, we don't easily make eye contact--and isn't THAT pretty creepy? And we don't chit-chat, and we don't schmooze and all of that makes people uncomfortable and it makes them distrustful.
Look at your want ad page, and you will see it. In almost each and every ad on the want ad page – heck it is darn near as ubiquitous as a pharma ad on the nightly news -- 'good communication' skills a must. And no, when they say 'communication skills', I do not believe they mean 'the ability to read and write well', nor do they mean 'expresses wants and needs well' or 'understands, follows, and gives directions well'. What I believe most people mean, altho they would never come out and say it, is this. They mean 'ability to schmooze well'.
Maybe it's my own bias showing but I have to say that I truly think that our culture's focus on valuing yak-yaks above all others hasn't been very good for us. Look at what's happened to our economy currently. I believe it's in no small measure due to all of that.
I contacted a local news reporter here once a couple of years ago. I wanted her to cover the vaccine/autism link. She wrote me back and she told me this, “I HAVE covered it.” I looked and I looked on the internet archives to find what she'd written, or video of stories she'd done on the news, but to no avail. I wrote to her and I told her “I can't find anything, help me out here,” but she never wrote me back. She had done a couple of stories about autism, yes. There was the usual 'let's help Autism Speaks raise money' story. And then there was the story about Mr. Mazanec. It was supposed to be the typical uplifting story about Aspergers--in fact if I remember correctly readers were told right there within the story about what an uplifting sort of story it was going to be. But I myself in fact couldn't see anything at all uplifting in Mr. Mazanec's story. A man who, tho he has two advanced degrees from college, is unable to obtain a job more lucrative than that of janitor.
Ms. Grandin, while your accomplishments are great and an inspiration to those on the spectrum, I have to say that I believe it's also clear to many that there is only so much room in the publishing world and in Hollywood for so many Temple Grandins. And I think that perhaps I'm not alone in being high on the spectrum and in looking at Temple's success with some bitterness. I think that the experiences of most high on the spectrum line up more along the lines of Mr. Mazanec's experiences.
I also can't help but wonder if her story would be up there on the big screen had she spoken out earlier in defense of the benefits of a restrictive diet, and if it would be there now if she'd said the one word that we all know is verboten in conjunction with autism, on all screens big or small unless it's a computer screen (and sometimes even then).
Posted by: Bad Apple | February 05, 2010 at 08:06 AM
AMAZING!!!!!! I can not wait to watch the HBO movie
Posted by: Annmarie Rung | February 03, 2010 at 01:38 PM
I wish she had just come out and said the V-word.
Posted by: julie | February 03, 2010 at 12:59 PM
Ms. Grandin, you are truly an inspirational hero! Thank you for being exactly who you are! You're a beautiful person & a wonderful writer.
Posted by: Angela | February 03, 2010 at 12:12 PM
I took my son to a psychiatrist a month ago and he does not take insurance, so I paid out of pocket 350 dollars. we were suppose to go back last Friday and watch films of Ms. Grandin. The psyc said he doubted if she had autism?!!! So, why are we suppose to go back in early (a couple of hours before our next appointment) and watch her films if that is what he thinks??
We did not go last Friday, because it is an hour away and it snowed. we do not travel for minor things on mountain roads in the winter.
We have an appointment this coming Friday - another 150 dollars.
I am thinking about cancelling the appointment. Yeah, I think I will.
This is the type of attitude we are all up againest.
It is going to take a life time to change it. It will be my entire life time, my children's entire life time, Dr. Wakefield's entire life time. Meanwhile there is a lot of blood sucking parasites that are also going to have an entire life time to go unpunished, reaping the benifits, and getting away with lies in court system settings.
Posted by: Benedetta | February 03, 2010 at 11:56 AM
Jake, the way I take that comment is that, sure, we can point to adults being diagnosed today who weren't diagnosed in the past, but those are people with milder, higher functioning conditions than so many kids today, and do not account for the increase. In other words "better diagnosis" mostly applies to people who missed diagnosis because they could speak in complete sentences etc. But of course even with Aspies there does appear to be a real increase in addition to the increased awareness/diagnosis.
Like, when a parent says, "My child stopped talking and started beating his head against the wall and having seizures," and someone replies, "Well, nothing's new -- my uncle has a lot of trouble making friends," I think Temple is saying those two situations are not identical.
Posted by: Twyla | February 03, 2010 at 11:55 AM
Living proof that ND advocacy does not have to go hand in hand with biomedical bashing or denial of the breadth of the spectrum! Thank you, Temple Grandin!!
Posted by: Twyla | February 03, 2010 at 11:40 AM
I think Ms. Grandin is spot on. It is the explosion in the regressive subtype that should be the main (but not only) focus of researchers. Environmental toxins?, Hep B at birth to genetically vulnerable subsets?, Viral insult in utero?, Mito dysfunction triggered by adjuvants or the increased dormant virus (because vaccine interference calls for it in multi dose delivery)? I haven't a clue but in the absence of answers....and I haven't yet seen any from the AAP or any of the financially compromised acolytes of Offit & Co....the burden of proof should be on the vaccine touts and autism epidemic naysayers, not those who advocate an abundance of caution and a well funded and broad range of robust, peer reviewed scientific inquiry, chips falling where they may.
Posted by: Dadvocate | February 03, 2010 at 09:45 AM
I actually think in some aspects she's right - but the difference is the environment - WE are all getting sicker and sicker. So, the "genes" certainly always been with us - but they are being expressed differently.
Imagine a scale:
*Zero is your most head-banging, severe ASD boy.
*100 is your most empathetic, artistic, musical, athletic, intelligent girl.
*50 is the joint attention border - between ASD and NT.
Given this scale, that means a 49 is a super HF ASD and a 51 is a NT with some serious issues. As this scale encompasses us all.
Many of our scientists, artists, etc. may have had some serious glutamate receptor genes. My husband and his family being the proof - they are all scientists and are contributing to society in a very big way - given, they are "traity treky types" but are certainly not ASD - they are all very popular have tons of friends - head numerous committees, etc. (very cool geeks). So, I would give them a score around 60s somewhere.
The problem - this generation of children is not so healthy - just speak to long term teachers or all the retired people in my parents' golf community. Things really are different.
So I would agree with Jake - if the environment can cause regressive and classic ASD - it can also move people further down the scale into less severe ASD.
Posted by: KHW | February 03, 2010 at 09:27 AM
Thank you, Jake, for pointing that out!
My son could now be diagnosed with Asperger's, however, before treatment with diet, enzymes and other gut problem cures, his dx was still autism.
Posted by: Deb O. | February 03, 2010 at 09:21 AM
"What a silly thing to say, Aspergers and Kanners autism were both discovered at around the same time when water-soluble ethyl mercury products became available. If it can cause regressive and classic autism, it can cause anything on the spectrum less severe."
Perhaps, yes, But I do agree with her in that there is increased diagnosis to be accounted for on the mild end. Many people, like myself, were not diagnosed with Asperger's as children - because it wasn't widely recognized. My parents took me in to be evaluated at 2 years old (in 1972) fearing that I had autism. My symptoms were spinning, flapping, stimming and lining things up. But I did not have a speech delay, which was required for autism. So, I was given a clean bill of neurological health. At the time you were either classic autism - or you were nothing.
Posted by: Sara | February 03, 2010 at 07:40 AM
“I don’t think the increase is the mild end because the Asperger types have always been there. I think some of the real mild autism – some of the Asperger’s – there’s increased diagnosis."
What a silly thing to say, Aspergers and Kanners autism were both discovered at around the same time when water-soluble ethyl mercury products became available. If it can cause regressive and classic autism, it can cause anything on the spectrum less severe.
Posted by: Jake Crosby | February 03, 2010 at 06:50 AM