Documenting Autism Recoveries

From Steven Edelson of the Autism Research Institute:

Dear ARI e-newsletter subscriber,

To date, more than 1,100 families with recovered or nearly-recovered children have registered on our website, www.AutismIsTreatable.com. Our list continues to grow on a steady basis! This is remarkable and much-needed news for all of those families working to help their own children recover from autism.

Starting next week, I will be driving through the Midwest to meet with families whose children have recovered or nearly recovered from autism. During these visits, I will be collecting records, reports and videos looking at children who were diagnosed with autism (and had the characteristic symptoms); and videotaping them to show how well they are doing now.

If your son/daughter has recovered or has almost recovered from autism, please consider participating in this project. The criteria for your child to be included in the project are:


1. Your child can no longer be diagnosed as autistic. Other people who meet the child would never have imagined that he or she once had autism.

2. Your child is no longer considered autistic by the school teacher and no longer needs an aide while attending mainstreamed school classes.

3. Your child has less than one hour per week of speech therapy (or none at all).

4. You can provide official documentation of your child's autism diagnosis from an established autism clinic, a government-sponsored assessment center, a hospital, a psychologist, and/or a physician.

(It is all right if your son/daughter is receiving help for reading and his/her verbal ability is slightly lower than his/her same-aged peers.)

If your child meets the criteria described above and you live on or near the route outlined below, we invite you to participate in the project. Since I will not be able to visit every city in the Midwest, I plan to stop for a day or two in several moderate- to large-size cities.

The tentative dates and driving route:


· July 16 to 26
o Hwy 10 E - from Phoenix to San Antonio
o Hwy 35 N - from San Antonio to Oklahoma City
o Two possible routes from Oklahoma City to St. Louis (not yet determined)
§ Hwy 35 N to 70 E
§ Hwy 44 E
· July 30 to August 10
o Hwy 55 N - from St. Louis to Chicago
o Hwy 90/94 W - from Chicago to Seattle
Note: I will be stopping in cities along the driving route that are not mentioned above.

A map of my route is located at: www.autism.com/roadtrip

If you do not live near or along this route and you are willing to drive several hours to participate in this project, ARI can pay for travel and one night of lodging costs.

Unfortunately, I will not know the exact dates when I will be in each city until three or fours days before my arrival. If your schedule is somewhat flexible, an ARI staff member will call you once the date, time, and place have been determined. The appointment should last about two hours.

When you meet with me, please bring:


· Most, or preferably all, of your documentation, including diagnostic assessment(s), on your son or daughter. I will bring a small photocopy machine with me to copy the documents. However, I would appreciate it if you could copy the documents in advance and/or scan them (pdf format) and save them on a cd-rom disc. ARI will reimburse you for any costs involved in copying your documents.

· If available, please bring any drawings your son or daughter made while he/she had autism as well as recent drawings.

· If available, please bring videos providing evidence that your child was truly autistic. I will bring equipment with me to copy most video formats. It will be very helpful if you can cue the videos to those behaviors often associated with autism, such as hand-flapping, rocking, echolalia, or self-injurious behavior.
Please note: Your son's/daughter's identity will remain anonymous when reporting these findings.

I look forward to meeting informally with groups of parents in the evenings. As Director of the Autism Research Institute, it is critical for me to stay in touch with the autism community, to hear your feedback on interventions, and the role that ARI and DAN! have played in your child's improvement. If you would like to arrange such a "get-together," please send an email to: recovery@autism.com.

We look forward to hearing from interested parents. Please call our office at: 619.281.7165 for more information. ARI's staff will ask you several questions that should take about 10 to 15 minutes. Your help, as always, is very much appreciated!

Best Regards,

Stephen M. Edelson, Ph.D.
Director

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.

http://www.kezi.com/content/contentID/15480 (Part 1)

http://www.kezi.com/content/contentID/15492 (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 kezi@kezi.com.

Thanks everyone
Kendra