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Documenting Autism Recoveries

Posted Sep 12 2008 10:26am
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
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