December 2, 2006

Recovering Children on the Cutting Room Floor

Over the last two years I have heard this story told over and over again by parents. Interviewed by the media about the improvements their children have made using DAN! treatments, but the real story never makes it on the air.

I thought I would share one of these stories.

From Kendra Pettengill:

I just learned a very tough lesson.

When my daughter Keely and I were invited to the DAN conference I also got a call from a TV reporter. He was asked to do a story on Autism by his station, and it was to be big, several minutes worth on two consecutive nights. He wanted to highlight Keely and I and our success story.

He admitted to me he knew nothing about Autism. I sent him a 12 point paper pointing out what I feel are the 12 biggest issues in Autism. I told him straight up that his bosses would never allow him to tell the real story, and the last reporter that did in Texas lost her job. He assured me that they were family owned and he could do any story. I told him that he might be able to tell one of the twelve points, or maybe weave in two of them, but no more than that or it would be confusing, watered down, and wouldn't make the point.

He and a camera man came and spent an entire Saturday at our house. We poured our hearts out to him. I told them every detail of getting the diagnosis, her horrible symptoms, and the prediction of her ending in an institution by the age of 12 or 13. I talked abou how abandoned families are, that no treatments are offered here in Oregon and how we had to go it alone, with help from family only. I told him all about DAN and Keely's horrendous reactions to her vaccines, her near death and then Autism. How we started the GFCF diet and within two weeks she started talking. We then started her ABA program and progress exploded. And he met her, and interviewed her. Both he and the camera man seemed not just shocked by her condition and abilities but she charmed the hell out of them. She was, I can assure you on her A game. I gave them before and after videos as well as her diagnosis including graphic descriptions of her worst behaviors observed during diagnosis.

Dr. Rimland had sent a message that he would do a phone interview with the reporter. The reporter never followed up on that offer, missing a huge opportunity. But the story just aired Wednesday and Thursday nights and Keely and I were not included at all. The reporter apparently ran into the ND crowd in Eugene and gave two nights of fluff stories with people only mildly affected. Despite weeks of advertising this huge piece and two part series titled "THE AUTISM EXPLOSION", the epidemic and xplosion were never even mentioned. Causes, treatment, and especially recovery were not mentioned.

We were sold down the river. He didn't even have the journalistic integrity to tell me we were being left out of the story. Hundreds of people were waiting to see it. I am devastated, but I should have known better. You would not have known what the face of Autism looks like from this fluff. The worst journalism I have seen yet. I have written over 10 letters that friends and family and autism families are sending to KEZI as I cannot send them all in my name.

Keely has worked so hard, she is mainstreamed now in third grade, 100% independent, no pullouts, no aide, making Straight A's. I am so proud of her and how very far she has come. She deserved to be recognized and to help give families hope that recovery is possible and that there are treatments that can make a difference in the outcome of these kids. I cannot believe how ticked off I am.

Here is the information on the station reporter and the two pieces he did. (Part 1) (Part 2)

KEZI 9 News - Tristan Mcallister

He didn't say anything about Autism. They advertised constantly with this ominous music, "Tune in for our two part special, The Autism Explosion why the huge numbers in Oregon" and then never addressed it. They didn't even say what the numbers are, didn't as why. Just advertised that was the story, then showed two semi-interesting human interest stories.

I found out that he met up with the woman in the first part who is friends with the woman in the 2nd part. Her name is Nan Lester and to many of us in Oregon she is public enemy #1. She is pretty much in the ND camp. She has dictated policy to the local school district and other families are left to live with her view of things or go elsewhere. She interjects herself into anything Autism related in Eugene. She interrupts parents at school meetings and then smooths the ruffled feathers of school officials and tells them that a great job they are doing. I know families in Eugene homeschooling rather than subject their child to the Eugene programs dictated by Nan Lester. [ed. note - in a later email Ms. Pettingill reiterated her opinion of Ms. Lester, but says that her comment that she was public enemy number one, "might have been a little strong".]

The kids in this epidemic are not going to teach art classes or get a drivers license, or get married, nor does anyone have hopes of them being a Senator or President. They put forth a very narrow view of Autism, gave as my own mother said, "Zero information about anything to do with Autism", and left our story of overcoming all the odds and diversity, struggling as a single parent to provide programs for my daughter and having enormous success through biomedical, chelation, and ABA to where we are today, they left our story on the cutting room floor. Hundreds of people were watching to see how they would present Keely and I, and he completely left us out. Apparently causes, treatments, and potential recovery are just too controversial, but fluff is ok.

What a story of hope we could have been to parents not knowing what to do.

If anyone on this list wants to send a little note, send it to

Thanks everyone


Anonymous said...

I keep telling you--don't hold your breath waiting for this story to make the broadcast news programs. It isn't going to happen until the pain med and nose candy addicts at the top of the industry are exposed for what they are.

Print up fliers with what you consider to be the more important information. Leave them in public restroom diaper changing tables. Leave them in store carts made for toddlers. Leave them in mall strollers for rent.

Use this. Use whatever you want. Change it if you like. I don't know how well it prints from the website, but tweak it. Or use whatever information you want.

I've taken to printing out copies of David Kirby's story on the Huffington Post, and leaving it as well.

Put a bumper sticker on the back of your car. Mine says 'mercury in vaccines is genocide, not medicine' and ''

mcewen said...

Lesson - beware the 'press'.
Best wishes

Anonymous said...

As a parent of a kid on the spectrum and also as someone who has it, I was saddened to read your assessment (Dec. 2 blog entry) of what the future holds for folks such as myself and my child, and disappointed to see such an inflammatory politicization of the issues. I myself was a "kid in this epidemic", and although I am still taking things one day at a time, I have every hope of seeing my ten-year-old -- who also suffers greatly -- one day make accomplishments equivalent to the examples you listed (teaching, driver's license, marriage, etc.). And I say this without any real bias as far as the genetic vs. environmental debate goes.

You have your own opinions on the cause(s) for these disorders of course, but I'm sure you will agree that within the scientific establishment, the jury is still out, that we have more to learn, and that causes aside we are still stuck with finding ways to deal with the unfortunate kids and adults who are affected. I fully realize blogging does not have to adhere to the same standards which apply to journalism and science writing, but until there is a real consensus (or at least something approaching one) on the root cause or causes, I think it would behoove people like you and me to treat our readers with more respect, by not projecting our anger towards folks like Nan Lester who actually can't claim responsibility for how the KEZI piece came out.

"Beware the press" indeed. Obviously, they were in way over their heads and probably only pretended to grasp the subject -- which is pretty typical when it comes to this stuff, as I'm sure you already know full well. I'd have done a longer feature piece, and would have attempted to present a more balanced view that did justice to the differing perspectives or camps, and most importantly I would have done a better job at highlighting the key differences between the different manifestations of the disorder(s), as well as show the importance of the various peripheral issues that come about as a result and are so frequently underestimated.

We're all coming at a complicated issue from different angles and with different points of view, and calling someone "public enemy #1" does everyone a disservice, in my opinion.

Anonymous said...

From the same anon reader: Forgive me, Ginger, for momentarily mixing up Kendra Pettengill's quote with your own blog!

Anonymous said...

My brother David is 42 years old – with a birthday in one week. He is diagnosed with severe autism and neurological dysfunction. I am three years older than David.

He has never spent a moment in an institution, but will also never raise a family or become a politician. With family support, he has experienced a life to date that is rich and full – more than others – many others – all over this world.

I know from personal experience that nothing is more frustrating than trying to discover viable support – of any kind – from local, state and federal government agencies.

And my personal experience also reveals that relatives of autistic children and adults are VERY PASSIONATE when expressing their experiences as well as their political / social / medical / spiritual solutions – ideas – and public policy suggestions in ANY forum – blogs – political forums – coffee houses – anywhere. Understandably so…..

But to call Nan Lester “ Public Enemy #1 “ because KEZI didn’t air a specific interview when collecting air time is absurd. I am a publicist in Eugene. Nan Lester can’t control one second of KEZI News.

Kendra Pettengill should contact the News Editor at KEZI to discuss her displeasure with how important information she provided about autism was ignored. She can also talk to other media editors about same….

Nan Lester has provided me with leads to support organizations – and governmental agencies – to help my brother. She has also provided counseling, which has benefited David very much….

Her son is autistic. She is VERY PASSIONATE when expressing her experiences and ideas. Understandably so…..

Anonymous said...

I am a person with high functioning Autism. I have to write something in defense of Nan Lester. Around April of last year I joined Nan Lester’s adult support group and shortly thereafter saw Nan as a patient. She’s the best psychotherapist and one of the most compassionate people I’ve ever known. She literally saved my life and changed its course. I don’t know of anybody that gives so much to help people with disabilities. Nan Lester has dedicated her life to helping people on the autistic spectrum.

I have not met anybody on the Autistic spectrum that is only “mildly affected.” High functioning Autism and Asperger’s is not fluff.

What is the ND crowd and the ND camp? Please explain.

Anonymous said...

So many anonymous commentators -- I'm the one with the ten-year-old, a few comments up.

To answer the question about "ND", I believe Kendra Pettengill was referring to "Neurodevelopmental Disorder" and drew Nan into a religious war about the "real cause" of Autistic Spectrum Disorders and Asperger's Syndrome. She may be passionate about many things, but I'm certain Nan is no zealot with respect to the root cause of these disorders. Her focus is on helping people with the disorders, and implementing/promoting policy changes to further help these people get the resources they need.

And the other anon poster is right -- Asperger's is nothing to shake a stick at. Nan also saved my life, in a matter of speaking. I am 33 years old and nearly suffered a complete mental breakdown. She helped me navigate into much safer waters at a very critical phase of my life in recent months -- while at the same time dealing with significant negative developments at home with her own son's issuees I might add. She is currently helping my child (who is entering adolescence, and is experiencing major issues) avoid going down the same path I embarked on at that age. If there is anyone who would have a strong empathetic connection to what Kendra Pettengill has endured with her child, it would be Nan.

Ginger said...

"ND" refers to the Neuro Diversity movement, a group of adults with ASD who oppose medical treatment and almost all forms of behavioral treatment becaus they believe that it some how devalues the autistic individual. They have as their goal full acceptance of the autistic person, but to the point that they don't want autism defined as a 'disorder' but rather an alternate way of being.

While I don't think there are any of us that don't think that full acceptance of those with autism and their full integration into society should not be the goal of all of us concerned, the idea that any 'treatment' of the autisic individual that abates the autistic symptoms, makes them physically healthyer and helps them learn to adapt to the community somehow devalues them I believe is a falacy.

There are some autistic adults who criticize parents of young children with autism for seeking medical treatment for their children, and those people are making it more difficult for parents like us who are seeking physical healing for our kids to get it and even harder for those whose children are improving or have recovered from their autistic symptoms to get the word out to other parents.

Anonymous said...

Nan Lester is no one's enemy. She is, however, a great friend to all of us who are high-functioning autistic. Society is quite unfair and unforgiving to this condition, and Nan is trying her hardest to change that for the better. She has helped many people who would not otherwise have any and cares deeply about the people she works with, parents and patients alike.

Russell Fegles,
Eugene, Oregon

madj said...

To Kendra and sympathisers-
Neurodiversity is a movement about civil rights for autistic people, many whom have been physically and mentally bullied, institutionalized and subjected to various treatments and cures aimed at making cats into dogs for the convenience of a world that expects and prefers dogs. When autistic kids become autistic adults, and they can and WILL tell you in words/art/typing/speech/sign exactly what they thought of those treatments. You can read our blogs all over the net if you're brave enough to listen to actual autistics instead the big money industry of selling false hope to desparate parents. Disregarding us as "mildly affected" or Aspergers "fluff" to make yourself look even more pure, righteous and deserving of attention is illogical. Contacting some of those seemingly "mildly affected" adults and asking about their often very severely affected childhoods helps gain understanding of autistic children in a way that no "normal" doctor or therapist ever could. Nan Lester is a tireless advocate for autistic human beings. She's bold and bright and tenacious, just because she doesn't subscribe to your cure theories and got "your" press time (no choice of hers) does not make her an enemy. This is a demostration of the chasm between the cure and ND groups, a gap that hurts the kids the most. And KP, you are WRONG. We can and DO grow up and teach art classes, make records, movies, drawings, books, blogs, engines, even invent useful things like the Internet if we're allowed to explore and use our unusual and prodigious energy to follow our God given ABILITIES instead of being forced to spend all our time learning to hide our "disabilites" for everyone else's social comfort and conformity. There are FAR greater rewards in life than the illusion of "normalcy".
God Bless your Journey

Dovid Hawke said...

This blogger's very silly and possibly legally libelous post is a example of how any crank can adopt an issue, make a blog and attempt (and fail) to sully the reputation of a good person SHE HAS NEVER MET and of whom SHE KNOWS NOTHING in an absurd, online temper tantrum.

Take your turf war back to your cow pasture and lady!

Dovid Hawke said...

This blogger's very silly and possibly legally libelous post is a example of how any crank can adopt an issue, make a blog and attempt (and fail) to sully the reputation of a good person SHE HAS NEVER MET and of whom SHE KNOWS NOTHING in an absurd, online temper tantrum.

Take your turf war back to your cow pasture lady!

Anonymous said...

Dear Ms. Pettengill,

I am the "mildly" autistic art teacher on KEZI's human interest piece. I was diagnosed with autism back in the Brutal Bettelheim era of the mid-50s. Unlike your daughter, who, from what I gather, acquired autism after being exposed to thimerosol, I was autistic from day one. I was lucky to have been spared those triple vaccines.

Like your daugher, I benefited mightily from my grandmother's improvised version of what turned out later to be ABA, as autism was considered untreatable back then. Though I am high-functioning in some ways (and much less high-functioning in others), my autism still isn't mild, by any means.

It sounds like you are giving up on your daughter's ever becoming independent or living a full life. She's way too young and making too large strides to be relegated to such a low-grade future as you seem to envision for her.

Neurodiversity (which, I assume, is what you meant by your esoteric acronym "ND") is not averse to medication or treatments. The vast majority of us in Nan Lester's Asperger/HFA support group take medication for our autism and co-morbid conditions. It's just that we don't want to see ourselves and fellow autistics as pathetic.

Onto Nan Lester, whom you dub "Public Enemy #1." You must be talking about a different (one possibly fabricated out of a paranoid imagination) Nan Lester than the one I've known for the past 5 years, the Nan Lester who has been educating so many Lane County parents and professionals about Asperger Syndrome and HFA, even before she became a therapist. In 1999, before autism became such a household word, she started (and facilitated) a support group for parents of kids on the autism spectrum. In April, 2005, she started such an group for adults with Aspergers and HFA, which has transformed many lives. She does all this for free, so she's hardly an opportunist. I'd like to know who Public Friend #1 is, if she's Public Enemy #2.

Nan has not advocated AGAINST autistics, but rather FOR folks with HFA and Asperger's, who have our own profound disabilities in seemingly simple arenas, such as school, work and relationships, but, nonetheless, are expected to function neuronormally in these areas, with no help whatsoever. She has lobbied our school district to better serve these folks, not to stop helping folks who can't talk or have mental retardation.

She is not opposed to the various modalities of autism treatment. Indeed, her "mildly" autistic son has severe difficulties in school and the social arena, plus significant motor dyspraxia that is on the order of cerebral palsy. He is on medication for various co-morbid conditions.

Nan does not frequent school board meetings, let alone use them to steamroller her own agenda. She is a busy woman with a family of her own. She does not suck up to school officials, but has been a thorn in their sides at various times, especially early on.

I am sincerely sorry that you and your daughter's interview wasn't aired. I assure you that neither of us intentionally stole your 15 seconds of fame. Indeed, we had no idea who else had been interviewed for that story. I, for one, would have gladly relinquished my little spot for you and your daughter, as I'm not particularly fond of publicity. Also, I referred the reporter to Bridgeway House, which holds monthly DAN! clinics in Eugene.

As for Dr. Rimland, he didn't answer your call because he was too busy dying of cancer. He died two weeks ago. Autism Research International (Dr. Rimland's and Dr. Edelson's organization, who advanced the DAN! Protocol, has an excellent website full of video clips of recovered children and other good information on the DAN! Protocol. Google Autism Research International, and you shall find a gold mine. As to the total paucity of DAN! practitioners in Oregon, Dr. Green and Dr. Contreras in Portland are DAN! practitioners, as is Dr. Reid in Portland.

In the meantime, you have done the autism community a major disservice by slandering Nan Lester.

(the "mildly affected" autistic woman on KEZI)

Anonymous said...

I appreciate your concern for your daughter, but I don't think your enemy is Nan Lester, or Tristan McAllister, KEZI or any other entity or person: it is autism. I think you should focus your energies on the real issue at hand, and not on libeling people who are doing their part to raise awareness for a cause in which you have a vested interest.

Ginger said...

Just a note for clarification.

First, welcome to those of you who are new to the blog. I appreciate your comments and all points of view are welcome. Respectful debate is always encouraged here.

Second, I want to be sure that it is clear that the owner of this blog, me, Ginger, is not the author of the letter, Kendra. I have set the formatting on the blog so that my comments appear in black and quotes from others are in gray. I think that it may have become unclear to some.

Additionally, I don’t know Nan Lester or anything about her. I am glad to hear that she has been a help to adults with ASD. I will make sure that Kendra knows about the comments that have been made here so she can hear from those who appreciate Ms. Lester or in case she wants to go into greater detail about the frustrations she has with her.

I can say that there is nothing wrong with Kendra registering her complaints about Ms. Lester online or with me quoting her on this blog. Indeed this kind of dialogue is at the heart of blogging, and right to freely criticize public figures is essential free speech. Ms. Lester, and all of those who advocate for autism causes publicly, including me, make themselves public figures and are open to criticism and public review in that area of their lives. Kendra has the right to criticize Nan, as you have the right to criticize Kendra. I have the right to publish it all, and you have the right to criticize me for publishing it all.

That is the beauty of free speech, and hopefully if we do it right, and are open to learning, we can all grow from it.

Lastly, I feel that there is a HUGE misunderstanding in the ND community of parents who are treating their children ‘hate’ autistics. Nothing could be farther from the truth. Speaking for myself, I see the incredible difficulty that they have living in a society that was not made for them and at times has little compassion or understanding of them. I avoid publishing stories and sparking discussion about those with autism who become crime victims or accident victims simply because those stories are so gut wrenchingly upsetting to me. When I hear a story of an ASD child or adult lost, bullied, attacked, at the bottom of a pool, left on a bus, molested or killed by a caregiver, all I can think is, “what is this world going to do to Chandler”, and it sends me into tears.

I want to live forever so I can always protect him, but there is a decent chance that I won’t. So I do the next best thing which it get him as close as I can to the world that he will live in so that he does not become a victim of it.

Indeed, with all my protection and advocacy, Chandler has already been the victim of a corrupt preschool administrator that sabotaged his therapy to cover her own ass. And he is only 4 years old! How many other people will feel no compunction at pushing him under a bus to get ahead?

Last year I did a series where I posted notices of lost people with autism in order to make the point, autism puts people at risk in this world. This is a dangerous place for those with autism, people who are prone NOT to see danger coming. Treating autism and abating my sons autistic symptoms will make him safer in this world. That is why I do it.

Chris said...

The Press
News stations and reporters are tasked with covering an enormous spectrum of information in an extremely limited format. Yes, reporters don't and can't know much about autism. It consumes our life, but it is only one story among many to them. No, news papers and especially television can't go into the detail that a book would. I consider any story that brings awareness that a thing called autism exists a success.

Kendra's Twelve Points
Kendra mentioned twelve issues in autism she felt the most important. If she could post a summary here, I and others would read them. Awareness would help us to seek out further information.

Nan Lester
Public Enemy #1? I and dozens of others have been significantly helped by Nan. Her compassion and effort was a large part of my living through the darkest chapter of my life. She is also a community builder. That support has been very valuable to many of us. It naturally moves her out of the center and encourages us to connect directly and exchange ideas.

ND (Neuro Diversity) camp? I’m not completely sure what that means. Nan helped me find medical treatment. Especially as an adult, medical treatment can only help so much. Talk therapy and simple acceptance have also been a help to me.

Public Policy
Kendra is comparing current public policy to her ideal. First, Nan’s input is only part of the result. She would improve many things if she could. Second, a more reasonably comparison would be to public policy of the past. Just because progress could still be made doesn't mean that none has been made yet. Finally, Kendra's ideal public policy inevitably differs from what others believe best. Everyone is welcome to give their input but must accept that the final product will contain many viewpoints.

Nan Lester said...

To Kendra and Ginger from Nan Lester:

I'd like to start off by saying that I agree that the KEZI story was extremely weak and that the content had nothing to do with the hype of "the Autism Explosion" as promoted. I can only imagine Kendra's frustration (as well as the whole DAN! community which I support). The piece obviously had nothing to do with the critical issues you shared with the reporter over the course of the day that you and your child opened up your home to him. However, you must understand that all I was asked to comment on my work, which is serving the counseling, educational, advocacy and mediation needs of individuals and families affected by ASPERGER SYNDROME; a mission I took on nine years ago following my son's diagnosis. Since starting the Asperger Advocacy Coalition, I have worked with (not coddled) the school district to create a free-standing publicly funded school for middle and high school students with AS that is now a national model. I have never claimed expertise, or sought to implement policies, on behalf of children across the spectrum, or as Kendra put it "dictated services that drove parents to home school their children". For the past eight years I have facilitated a monthly support group for parents with children affected by Asperger Syndrome and nearly two years ago I started an adolescent and adult group for which people come from around the state to attend monthly; all of my groups are, and shall remain, free to all participants. These groups, as well as the many activities I do outside of my practice, represent hours of my personal time. Until completing graduate school in Psychology, Public Policy and Education last year, I counseled families, attended IEP's, coordinated national level conferences regionally, and advocated for all those with AS at no cost, but the personal exhaustion I experienced myself. I now work as a private practitioner on a sliding scale, turning away no one. I supported the grant committee and am on the board for a specialized post-graduate program called PASS (Preparing Autism Specialists for Schools) that serves the entire ASD population within the public education system. While in graduate school I was a Graduate Teaching Fellow within the department of Family and Human Services and the area of Special Education, including two terms co-teaching a SpEd course which focused on the history of the treatment of people with disabilities. For over a year I drove to Salem monthly with others from the Eugene community to meet with Dr. Steve Edelson, now the director of Dr. Rimlin's clinic, and much of our conversation centered around DAN! Protocol. There was never any debate on my part, only interest. I have been on the board and hold my support groups at a facility called Bridgeway House which focuses on alternative methods for treating autism. I unequivocally, and without judgment, support virtually any method that a parent chooses to implement on behalf of their child with Autism Spectrum Disorder. Therefore, I cannot tell you how upset I am that when you Google my name now I am referred to as "Public Enemy #1" for people with ASD in the state of Oregon. This comment, along with others made on your Blog by Kendra were nothing but cruel slander. I may also add, that my family struggles terribly with our own son, who besides having AS, has a near Cerebral Palsy motor condition that renders him unable to write more than his name, ride a bike, swim, or enjoy many of the activities that are available to others on the spectrum. My son also spent the better part of October in an acute psychiatric residential facility in Portland as he has now developed severe Bi-Polar and OCD. At thirteen, he had never spent a night away from us and it was heart-wrenching. Yes indeed, our life is a real picnic, and your hurtful words and accusations have left a deep and painful impression upon me and my family. I am not familiar with the term ND, but I will choose to frame the term in my way accordingly: perhaps you may be referring to the autistic and developmentally disabled man I have employed daily to help in my home since he lost his job, and is now considered a member of our family; or perhaps it is the relationship I have with my profoundly autistic 67-year-old sister-in-law whom I have loved deeply and advocated for throughout the 27 years I have been married to my husband. Perhaps this "ND" behavior is also why I was honored with the State of Oregon ARC Volunteer award this year on behalf of my commitment to individuals with all types of Developmental Disabilities. I should also reflect on my husbands commitment to individuals with autism, first as a special ed teacher for the ARC and now as a special needs dentist who treats individuals with severe autism that no one else will see because they are viewed as "too difficult and not profitable" by other practitioners standards. He also runs a hockey team for kids with AS, which we finance ourselves at considerable personal cost. I, and others ask, why would you personally attack and slander me to this degree without knowing a thing about our family or the nature of my work, over what appears to be your anger with KEZI? And I ask you, Ginger, how you would feel as a practitioner committed to your work, to be referred to in the way that I have on your blog, and subsequently on the World Wide Web! I believe that KEZI owes you an apology Kendra, but I believe you owe me one as well. I was devastated by your comments, and it was all I could think about over the past few days as my family and I tried to enjoy a weekend of much needed respite in the mountains of eastern Oregon; my first break in months. Ginger, I implore you to have the slanderous entry that appears on the web when you Google my name to be removed by your server. This was not free speech, but rather a needless and ill-informed character attack. I am deeply hurt beyond words, and am asking you for this courtesy as a Mom, an advocate, and a professional. Thank you for considering my heartfelt request, and once again, I am sorry for the pain Kendra and her daughter experienced as a result of, what I agree, was a "Fluff" piece by KEZI; one that I obviously wish I had never agreed to participate in and was not impressed by. You are welcome to obtain my contact info at, as I would be happy to help you get your story out in any way I can, as long is it done in a way that is respectful to others efforts and perspectives; a policy that I strive to maintain in my work and personal life. And finally, after several days away, I was warmed by the comments left on your blog by members of our gifted, unified, and beloved AS community in Eugene. Warm regards for happiness in your future, Nan Lester, M.S.

Anonymous said...

I feel for Kendra. I think it was not right that after she gave so much of herself for this story, she was denied the chance to help others; the reason she shared her message in the first place. On the other hand, such is the way with working with the press. A hard lesson learned. I think the blame for the weak reporting falls on the reporter, not on Nan Lester.

I would have respected Nan's silence more, particularly in regards to her qualifications and family history/struggles. When you are in the public eye, you will come under fire from time to time. Justifying yourself usually backfires. And it is wise if you are going to justify yourself, if you spell correctly the names of those with whom you are aligning. (it's Rimland)

Nan, I wonder, is this man who works for you also in your care as a therapy client? I don't expect you to answer, but I hope you are carefully thinking through the ethical implications of your specific relationships and interactions with people.

There is a divide between what Kendra calls the "ND camp" and those who claim you can cure autism.
Firstly, regressive autism and asperger's syndrome are two different things. They can overlap, but there are distinct differences in how the conditions present...and whether they can be treated and how. So people need to just get over that.

Secondly, if my child is sick, then my child deserves medical treatment like any other child. My child is sick with a gut condition. I'm not going to sit by and let him be sick because I want him to be secure in his sickness, because he has a right to be sick and we should all just deal with it. Neither am I going to try to cure the way his brain thinks or his expression of himself. That is a part of him. Conversely, if my child is digging in the garbage for food in his middle school, not because he's actually hungry, but because he wants his gluten fix, then I need to step in and do something. It would be irresponsible and neglectful of me to do nothing. It would be unfair to him.

Beyond typical medical treatments, if my child's muscles are so weak that he or she cannot speak clearly, fill out a job application, etc, then I would be remiss in keeping him from therapies that could help him/her.

The way my child thinks due to his/her experience with autism is a different matter. I would hope to teach my child how others perceive the world and social situations so that my child will have a better ability to live in our world such as it is. It is virtuous to attempt to enlighten the rest of the world to the differences and beauties of autism but there will always be those who fail to see. I can't control that. While we continue to fight to educate the rest of the world, we would be remiss if we did not teach our children to live in the worlds as it is and what to do when they run into idiots who are so narrow that they cannot accept our children.

Our community needs to beware of gatekeepers to autism information and help. There are some in our community who feel they can judge what information is helpful for others, or which is the right path to take. When we begin to shut out certain views and limit access to ideas/methods/methodologies which we do not personally subscribe to, we limit choice and access for others, and perhaps the help a particular child desperately needs. If we cannot come together for the good of all those in the autism community, we will only hurt ourselves.

Anonymous said...

Kendra Pettengill deserves support on this issue regarding Nan Lester! Many of us with children that have autism believe this is truth.
A DAN parent

Anonymous said...

"I told him all about DAN and Keely's horrendous reactions to her vaccines, her near death and then Autism."

Keely has never had immunizations. Kendra claims to be of the Christian Science faith. (She is not a member of the church because she is a smoker.) Kendra has raised Keighlin with the same ideology and has therefore never been immunized. Thus, she has never collapsed at any doctor's office.

Her video from the DAN conference is full of lies.

Ginger said...

Dramatic claims.

Can you offer any proof or sources?

Can you let us know who you are?

If what you are saying is true, then it should come out, but an accusation from an anonymous source it not much to go on.

Anonymous said...

I personally think it is really sad that all these great folks like Kendra Pettengill are getting slammed by others for their work. I think this blog is great but if really defeats the purpose if we hurt other people in the autism community. This seems to all come from kendra sharing her perspective about her KEZI experience. She had the right to express her feelings about being aced out. Nan lester played "poor Nan" and rallied folks to response in her behalf. There is a whole cult in eugene that Nan has under her thumb. This was a cheap shot and all this should stop.

Anonymous said...

Don't criticize Nan Lester or she'll threaten to take legal action, as she has threatened to sue most of the Eugene Autism Community.

AspergerMom said...

"By their very nature, and may carry offensive, harmful, inaccurate or otherwise inappropriate material, or in some cases, postings that have been mislabeled or are otherwise deceptive. We expect that you will use caution and common sense and exercise proper judgment when using and"

HMMM.... common sense and proper judgment? on an autism site? who decides what's "common" sense and "proper" judgment? I guess the neurotypical people decide that. (sigh)

Ok, so here's my take on this whole thing...

Probably the real reason the press didn't post Kendra's story was because she over-focused on the details of her story, giving them too much information on a single subject in typical Asperger fashion - with the interviewee (Kendra) not realizing that she was missing all the social cues. Not wanting to be rude, the interviewer probably continued to ask her questions and show "interest"... While reading her post I was struck how autistic it sounded - perhaps Kendra doesn't realize that she needs to be her own advocate and get help for herself to function in the neurotypical world we live in... yep, it's that familiar fight or flight reaction - way overboard & misappropriation of rage. I think all media people, when conducting an interview, should require people to sign a disclaimer that says: "any words you say may or may not be used; may be distorted or used in context that you did not intend; and may cause you to wish you had never said them and never wasted your time or emotion."
From my own experience, I recommend that Kendra let a neurotypical person tell the story to the news person next time... I bet it's a compelling story and they would use it. Yes, it would be condensed & would not include every gory detail of every doctor's visit, but at least it would be more substantial than the "fluff" she talked about...

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