From: YB > Date: Thu Jun 8, 2000 11:05am Subject: Roll Call of Recovered Kids Hi - I am new to this board. Could I take a roll call of recovered kids on this board? Thanks - appreciate it. Example: Age of Child Today : 4 yrs 4 months Age at diagnosis : 18 months What was the diagnosis : Autistic Spectrum Disorder Age at Recovery : 4 yrs 1 month Interventions: Special Ed - includes Speech Therapy, OT ABA GFCF Diet B6/Magnesium Labs Tests (if any): Chromosome Blood Test Yeast Stool Test Again, thanks for your input. ================================================================================== From: > Date: Thu Jun 8, 2000 11:17am Subject: Re: Roll Call of Recovered Kids Age Today - seven Age at diagnosis 3 1/2 Moderate/severe autism Recovered - around 51/2 or so Interventions - ABA, speech, supernuthera, no nutrasweet, the internet, getting him the h.... away from special ed, public schools, complete morons, etc. Virg. - oh by the way, anyone wnat to borrow him for a while? We are filming his movie this Sunday and my sweet, lovely child has turned into a total NAG! :-) Virg ================================================================================== From: > Date: Thu Jun 8, 2000 1:17pm Subject: Re: Roll Call of Recovered Kids Here's a synopsis of my son: > Age of Child Today : 4.0 yrs > > Age at diagnosis : 2-1/2 yrs > > What was the diagnosis : PDD/Autistic Spectrum Disorder > > Age at Recovery : Approx. 3-1/2 yrs. (still ongoing...) > > Interventions: > > GFCF Diet Secretin > Intensive 1:1 ABA - Home Program combined with full-time school ABA program B6/Magnesium (Super Nu Thera vitamins) Speech Therapy, Oral-Motor therapy 3-4 times/wk Efalex Focus (EFA supplements) Homeopathic (wet) remedies > Labs Tests (if any): > > Immune Panel, IgG Blood test for gluten/casein peptides, tests of pancreatic and liver function, Serum Metals, Elemental Hair Analysis > ================================================================================== From: > Date: Thu Jun 8, 2000 1:55pm Subject: Re: Roll Call of Recovered Kids Rollcall Information Ariana Coyne Age of Child Today : 5 yrs 6months Age at diagnosis : 3 years What was the diagnosis : Mild to Moderate Autism Age at Recovery : 4 yrs Interventions: Special Ed - includes Speech Therapy, auditory processing CF diet B6/Magnesium Probiotic Claritin/Zyrtec Diflucan for yeast Zovirax for EBV MSM Amino Acid supplement Multivitamin Labs Tests (if any): CDSA Amino Acid Tests Urine yeast test Immune Panel Viral Panel Heavy Metal Panel Food and Inhalent Allergy Panels Solvents and Chemical Panel Lumbar Puncture No vaccines given after age 12 months. I think this is critical for many of our kids not to have setbacks. ================================================================================== From: > Date: Thu Jun 8, 2000 3:24pm Subject: Re: Roll Call of Recovered Kids John-Paul's road to recovery: Age now: 4.7 yrs Age at diagnosis: 2.4 yrs What was the diagnosis: PDD-NOS with autistic tendencies Age at Recovery: 4.3 yrs Interventions: Intensive ABA MSM Digestive Enzymes Transfer Factor and/or Colostrum Homeopathy Currently getting speech therapy for poor articulation He will be exempted from any further vaccinations and we will continue with only homeopathy. We also avoid antibiotics. ================================================================================= From: > Date: Fri Jun 9, 2000 2:54pm Subject: Re: Re: Roll Call of Recovered Kids YB: Just out of curiousity, are you collecting this information for some specific purpose? Andrea ================================================================================== From: YB > Date: Fri Jun 9, 2000 7:02pm Subject: Re: Roll Call of Recovered Kids Hi Patricia and Andrea: Many Purposes for the Roll Call: 1) Patricia asked if someone can compile the results. I can enter the info (if you responders don't mind) into the database of this board so we don't have to do this again. 2) I have only known of 2 kids that recovered from autism. Since this is a board of recovered kids, I just wondered how many have recovered, how they recovered, and how long they recovered. 3) Your responses serve as proof to the medical community that recovery is possible and that this does not have to be a lifelong disability. 4) Your responses and methods of treatment serve as proof that we are not dealing with classical autism where the doctors just says "Link up with the school district to get intervention" and they do nothing else after that (their duty is done as far as they know because autism has no cure). 5) This also serves as proof that those who were dx'd as PDD-NOS/PDD who don't qualify for services as those dx'ed as autism should be given an equal opportunity to receive those intervention services from the county because the chances of recovering fully is probably much higher. The county/state would rather have the burden of supporting (forever with welfare/disability) those PDD-NOS/PDD who have not recovered because of lack of services. If they recovered as a child, this will be much better for everybody. 6)This serves as a hope for those parents struggling to recover their child from the disorder that caused the autism. And many more...let me know if I should keep on listing.... The roll call is totally voluntary. Someday, your input may change how the world handles autism and it may very well help save others from a lifetime of disability. Thanks!!! ================================================================================== From: > Date: Sat Jun 10, 2000 5:47am Subject: Re: Re: Roll Call of Recovered Kids Daughter: Harper, current age 3.9 Diagnosed: age 2.1 Making steady constant progress Protocol: Early testing and continued testing afterwards. Immune markers out of the normal range, antibodies to myelin basic protein, and elevated yeast in gut. Initially, our large university diagnostic center in Atlanta gave her the dubious honor of being the "worst case of regression we have ever seen" (They told us to get some counseling and respite, made disparaging remarks about Dr.Rimland, told us basically that all was hopeless, and sent us on our way) This encounter was the first "motivator" for us to prove them wrong, and continues to be to this day. Diet: Strict gluten and casein free (currently trying to eliminate corn) Receives ABA therapy; for first year, received 20-25 hours twice a day six days/week, recently removed her from her school to do 40 hours per week in the home mon-fri. All involved with her before and after, agree this was a good move. We add to her diet a host of vitamins and supplements some of which include TMG, Carnitine, Colostrum, CoQ10, CLO, Bethanachol (the only drug she currently receives), Yeast fighter capsule, SerenAid, and probiotics. She also receives a custom oral vitamin mixture. All of these are under supervision of a nutritionist and M.D., both of whom are experts in and specialize in autism. This is a key point. Your professionals must be experts in autism; (not just familiar with autism). We have made tremendous progress on the biological front but continue to fight a protracted battle with diarrhea and a yeast problem. We have been on transdermal secretin for 7 months and upon stopping noticed a distinct change for the worse with behavior and sleep. We have also just completed our first IVIG treatment and at the end of the treatment she was given her first unit of IV secretin. The results have been very exciting with unexpected results in language (unprompted 3-4 word sentences, multi-syllabic words, and generally more functional use of language) All involved in her recovery agree that she seems to be having a "language explosion." One tutor, working with her for the first time since her first IVIG treatment was actually quite "startled" after hearing some unprompted language never heard before. We also do speech and O.T. (with a sensory integration emphasis) to maintain our Katy Beckett waiver. In addition we do a lot of singing to Harper. She becomes totally engaged when we sing to her. It is like The Sound of Music and Mary Poppins around our home complete with our own wonderful lead ABA tutor who I think is Julie Andrews in disguise. Our daughter has made tremendous progress and certainly has a long way to go. We now really believe that she will recover. We have also had very encouraging comments from professionals who have seen Harper that have always been scheptical, and now are believers in ABA and the biological protocols. I think a database is a great idea. This would be great anecdotal evidence for parents and professionals who are scheptical of this type of protocol. I eagerly await the results. Brad & Jenny Middlebrook Atlanta, Ga. www.AutismInfo.com ================================================================================== From: Gary Baxter > Date: Sat Jun 10, 2000 7:34am Subject: Re: Re: Roll Call of Recovered Kids Son: Matthew, age 7.8 Diagnosed: Autism at age 3.5 Diet: Gluten/Casein free since age 3.8 Supplements: Super Nu-Thera, Calcium Carbonate (Tums), GNC multi-vitamin, Evening Primrose oil, Selenium, Zinc Educational intervention: ABA initially at 40 hours per week gradually decreasing over a three year period until the program was ended one year ago. Status: Matthew has just completed the first grade without any aids or supports. He took the California Achievement Test at the end of the first grade scoring the following: Total Reading 96th percentile, Total Language 95th percentile, Total Math 90th percentile, Total Battery 96th percentile. He is indistinguishable from his peers. Gary & Tina Baxter Tifton, GA ================================================================================== From: > Date: Sat Jun 10, 2000 11:19am Subject: Re: Roll Call of Recovered Kids Daughter: Angela Diagnosed: age 3.8 with PDD. A second neuropsychologist confirmed this a couple months later, but said the criteria more closely matched autism. Diet: casein free since age 3.9, gluten-free from age 3.10. Within a couple of months, it became evident that corn, soy, chocolate, canola oil and apples had to go too. Age of Recovery: This is a tough one. We had our initial ABA workshop a month into the gluten-free die. The consultant we hired removed the label, but he noted delays. Shortly after this workshop we noticed a regression, and, eventually, more foods were pulled. Meanwhile, a second consultant picked up her case at age 4.2, and she thought Angela was somewhere on the spectrum, and she didn't consider her label-free until December of 1998. A DAN! doctor, who is also a neuropsychiatrist, had told us he saw no signs of autism about six months earlier. A year ago, our consultant told us that if we never did another ABA program, everything would be fine. I would say that around the end of last year, we totally reclaimed our child. Angela attended a half day kindergarten without support. I personally think she had the best teacher in the district. This particular teacher works on social skills with all her students. We did keep some services - OT and therapist-led playgroups, which she received a few hours a week at the private nursery school she attended last year. She'll enter first grade without services, except for physical therapy. We're still working on mild gross motor delays. Biomedical Interventions: Very strict diet, thyroid replacement hormones, vitamins and homeopathy. We did nystatin, but, in retrospect, I think it was a big mistake. Patricia ================================================================================== From: > Date: Sat Jun 10, 2000 12:38pm Subject: Re: Re: Roll Call of Recovered Kids Connor Diagnosed at 2 1/2 PDD Immediately began ABA 35 hrs/wk Re-diagnosed at 3.1 Mild-Moderate Autism Did ABA for 2 years up to 50 hrs/wk incl preschool w/shadow Recovered gradually, primarily by 4 1/2 Now 5 1/2 and indistinguishable ================================================================================== From: Mary > Date: Sat Jun 10, 2000 1:07pm Subject: Re: Re: Roll Call of Recovered Kids Larry has recovered to a great extent but not totally recovered. He is a successful Irish dancer and is indistinguishable in many settings. He must be kept on a very strict diet. ================================================================================== From: lesli mitchell > Date: Mon Jun 12, 2000 9:33am Subject: Re: Re: Roll Call of Recovered Kids Son: Connor, age 3.10 Diagnosis: moderate/severe autism at 22 months Supplements: DMG Educational intervention: 25-30 hours per week of ABA, beginning at 2.2 y.o. Therapy: OT 2x/week, PT 1x/week, SLP 1x/week, integrated daycare (now preK) with typical kids and occasional aide Tests: gluten/casein (negative), Fragile X, vaccine titres, immune Ig series, organic acid test Status: Lost autism label at 3.6 y.o. based on CARS and Brigance. Soon to be evaluated with other standardized tests. Expected "complete" recovery, based on OT's experience, is 1-2 years. Test results academic: above age level receptive language/comprehension: age level expressive language: below age level (1 year) gross motor skills: below age level (9 months) fine motor skills: above age level social interaction: age level We're working on the remaining deficits in expressive language and gross motor delays with a combination of ABA/social field trips (less structured to allow for more spontaneous language and interaction with other children), swim lessons for gross motor, and biological interventions such as additional supplements, IVIG and Secretin, and possibly GFCF diet. Lesli Atlanta, GA mom to Connor, 3.10 y.o. ================================================================================== From: Tim and Jill Sweeney > Date: Thu Jun 8, 2000 6:41pm Subject: Roll Call Recoveries At what point did you consider your children recovered? My son is now 5 and 1/2 and on his way to recovery but it seems to be a very slow road. We started the diet in October and saw immediate results. His language took off and the most noticeable was his interaction skills. I really felt we were getting close to a recovery. We entered spring doing wonderful then the allergies set in and we had a major set-back in his socialization and some behaviors came back as well. Now he is doing better but I am wondering if we are recovery or not. Has anyone else had this experience? Jill ================================================================================== From: L. Clodfelter > Date: Fri Jun 9, 2000 6:42am Subject: Roll Call Age of child today: 5 yrs 6 months Age at diagnosis: 2 yrs 4 months Diagnosis: Autism Age at Recovery: lost labeling criteria at 4 yrs 7 months; indistinguishable from peers except for occasional grammar/speech error 5 yrs 4 months. Interventions: - treated by Dr. Michael Goldberg (a description of his approach can be found at www.neuroimmunedr.com , it involves treating the underlying neuroimmune disorder. For our son it included a special diet (no dairy, whole grains, chocolate, or red berries), various antifungals (diflucan, nizoral), various antivirals (zovirax, valtrex, kutapressin) and various low dose SSRI's (started with prozac, then tried paxil, now he is on celexa.) - intensive home ABA program 30-40 hrs per week until the past 6 months down to 20 hrs for speech/grammar fine tuning. -speech therapy - private preschool ================================================================================= From: > Date: Sat Jun 10, 2000 7:57pm Subject: Roll Call My daughter's info: Age of Child Today: 5 Age at time of diagnosis: 12-15 months Diagnosis: 1st pediatric neurologist-autism 2nd pediatric neurologist-PDD Age at Recovery: 4 years and 10 months. Interventions: OT therapy through age 3 1/2 Speech therapy off and on Most important therapy: ABA Vitamins: I use "Animal Friends" vitamins and extra vitamin C DMG: one tablet a day Acidopholis: I have put this in her milk for three years. Lab tests: Fragile X Sleeping EEG ================================================================================== From: Karen Jaggers > Date: Thu Jun 15, 2000 7:44am Subject: Roll Call Hello... I just checked out the roll call...what a great job! Of course I realized that I had not sent in my son's profile.....and want to encourage all members to do this....while reviewing this database, I couldnt help but think how encouraging this is and what a testimony it is to the fact that these kids can recover....please send in your info... think how much you needed to read this kind of encouragement when your child was first diagnosed. Here goes: Dalton is now 3 years 10 months, he was diagnosed PDD/Autistic spectrum at 22 months. By 24 months we had him enrolled in a Language Preschool for 20 hours per week, and ABA for 21 hours per week. At 3 years 4 months, he lost all labels but Language Delay from the Childrens Hospital that had been monitoring him starting with his initial diagnosis at 22 months. Today....at 3 years 10 months....he is pretty darn close to indistinguishable and getting closer every day.....he now has six hours per week of ABA, and this summer is attending a private preschool WITH NO ASSISTANCE! yea!!!!!! He seems to be doing so well...we are seriously considering not returning to the special needs preschool in the fall. While he still needs some fine tuning here and there....other than a language delay he is pretty indistinguishable from his peers.....YEA! ================================================================================== From: kwandy > Date: Fri Jun 9, 2000 3:47pm Subject: Roll Call for Recovered Kids Age of Child Today : 5 yo Age at diagnosis : 2.9 yo What was the diagnosis : Autistic Spectrum Disorder Age at Recovery : 4 yrs 4month* This was when he was officially undiagnosed by the same doctor who originally diagnosed him. I feel that he came out of his autism within the first year of starting the diet and yeast therapy. Interventions: Special Ed Speech Therapy GFCFYF Diet Nystatin DMSA Mercury chelation Many supplements -too many to list Auditory Integration Therapy DAN! protocol Food Allergy elimination/Rotation diet Labs Tests (if any): Casein/Gluten Antibody Test-Dr. Cade University of Florida CDSA-Great Smokies & Kaiser Blood elemental-toxic elements test Great Smokies Organic Acid Test-Metamatrix Hair Analysis-Doctor's Data Post Provocative Toxic metal urine analysis-Doctor's Data Complete Immunological Profile(Fudenberg 2&3)-Specialty Labs Food Allergy Profile-Great Smokies Hope this helps KB, Calif ================================================================================== From: John Rae, Rebecca Ryan > Date: Sun Jun 11, 2000 6:27pm Subject: roll call Hello all, Our son was diagnosed (mild/mod ASD, also mod MR) at 2.6, and we started ABA at 2.9 Tried hard to achieve 30 hrs/wk 1:1 : ) Been hard at work for 2.6 yrs. Doing great, but not recovered, in my view... Great jnt attn, language and imagination, etc., but has some minor OCD issues (getting stuck on topics). Moreover, he needs to ntellectualize *difficult* social encounters. And, while able to work through them, are not yet fluent. Greetings, Rebecca --- John Rae, Rebecca Ryan --- jfrrmr19@e... ---"Let me tell you the secret that has led me to my goal. My strength lies solely in my tenacity" Louis Pasteur ================================================================================== From: Jim & Helyn Moore > Date: Tue Jun 13, 2000 4:50pm Subject: Fw: Roll call -----Original Message----- >Dear Listers- >I have enjoyed reading everyones roll call posts and have been reluctant to >post our story, YET. We have about another year too go. My son Michael is >doing extremely well. But with each email I received I found myself >looking for Michael in your recovered children. For a characteristic or >behavior that would let me feel comfortable enough to relax about recovery. >I do believe that Michael will recover in his own time and today I read >something that I wanted to share. This is for all the parents who have been >looking for the guarentee. > > "Everybody is unique. Compare not yourself with anybody else lest you >spoil God's > curriculum."--Baal Shem Tov > >Helyn -Vancouver, WA > > ================================================================================== From: > Date: Thu Jun 15, 2000 4:04am Subject: Fwd: Unable to deliver your message >With all the talk about what "recovered" means, I'm wondering if anyone >has older kids on the list who recovered many years ago. I don't mean who >recovered at the oldest age. Does anyone have a child who seemed >indistinguishable by 6, and who is now older than 8 or 9? > >I started thinking about my own son and what I was told about his >improvement. He wasn't classically autistic, but was diagnosed with >Asperger's Syndrome at 5-1/2. He could probably have been dx'd PDD when he >was 2 or 3 if we had found someone at the time who knew what they were >doing. He's just turned 7. We've seen enormous improvement with various >biomedical interventions. He just finished first grade, fully >mainstreamed, working at grade level. He's still getting OT and speech, >and needed some help last year from an aide for writing and spelling. He >did so well that we are going to try to fade the aide next year. Two years >ago I couldn't have imagined him in a regular first grade classroom. In >many situations I think he is indistinguishable. > >But I wouldn't call him typical. He still has trouble with appropriate >social interactions. He wants to be with kids, but has trouble with >unstructured play. The teachers say the kids at school didn't seem to see >anything different about him, but I don't know. He would usually wander >around by himself at recess rather than playing with other kids. He >occasionally does impulsive things like grabbing another kid "to play with >him." I can't imagine that's making him any friends---although we did >invite 2 boys from the class for his birthday party, who both came and >seemed to have a good time. He still gets upset over things that would >probably not bother a typical kid, and he still tends to be pretty rigid >and obsessive at home. > >About 6 months after he was diagnosed, we had some follow-up sessions with >the people who diagnosed him for help in dealing with behaviors at home >and school. They were quite impressed by his improvement. I explained our >biomedical interventions and asked their opinion as to whether or not he >could eventually "lose the label." They said that sometimes kids improve >over time (for no known reason) but there will always be some issues later >in life. For example, they suggested he's doing pretty well in school >right now because he's being asked to do concrete work, but he will >probably have more trouble as he approaches middle school and the work >becomes more complex and abstract. They may well be right---but I also get >the feeling that these people would never say a child they had diagnosed >has "recovered" because they don't believe recovery is possible. > >Personally, I think my child will probably always be a bit "different" at >some level, but that life will get easier for him as he learns more about >dealing with social issues. He's now able to learn, whereas before, he >couldn't. Hopefully the learning process won't be too hard, with teasing >and isolation. > >So, is there anyone out there with kids further along into recovery? Any >other thoughts? > >Jean in NC > *********************************************** * R.L. Bynum Hillsborough, N.C. * * Home: rl@i... Work:rlb@h... * *********************************************** ================================================================================== From: Susan Bourgeois Date: Mon Jun 19, 2000 6:56pm Subject: Roll Call of Recovered Kids Age of Child Today : 4 yrs 3 months Age at diagnosis : 2 yrs 1 month What was the diagnosis : Autism Age at Recovery : 4 yrs 1 month Interventions: Lovaas replication site from age 2 yrs 10 months until age 4 yrs 1 month (anywhere from 20 - 30 hours per week); speech therapy 2 hours per week from age 2 yrs 9 months to age 4 yrs 1 month; special ed preschool for 4 months and then typical preschool for 5 months (both with shadow) - this comprised his 3 year old preschool year did a short trial with prozac and saw no improvements - no other drugs or diets Susan Bourgeois mom of Christopher - back in AK where we belong ================================================================================= From: Carmen Sargent > Date: Sun Jun 11, 2000 4:44pm Subject: Recovered? Hello All, I'm struggling with this word recovered and I need your help. My almost four year old son is doing very well, but I don't feel I could call him recovered. I take him to our neighbors house and he is asked questions and he correctly responds. Our neighbors have no idea of his diagnosis. He understands everything and is able to follow directions. He is very verbal and has pretty good articulation. However, with all his strenghts, his play skills are not like a typical four year old's. He doesn't play with Power Rangers or any other action figures. He is intrigued by "weird" things like street signs(i.e. stop signs, yield signs, etc.) He is going to a regular nursery school with a shadow right now and will be attending a day camp without a shadow. Our son is indistinguishable from his peers in a crowd. He is a very sweet boy with no behaviors, but in the confines of our home, I see he is a little weird. Some of my friends tell me he is no longer autistic, but I always see something there. How do you guys define "recovered"? Thanks, Carmen ================================================================================== From: > Date: Mon Jun 12, 2000 3:52pm Subject: Re: Recovered? In a message dated 6/11/2000 6:44:54 PM Central Daylight Time, carmen.sargent@c... writes: << ur son is indistinguishable from his peers in a crowd. He is a very sweet boy with no behaviors, but in the confines of our home, I see he is a little weird. Some of my friends tell me he is no longer autistic, but I always see something there. >> I understand where you are coming from. I consider Logan recovered, and have for about a year and a half or longer, but even now I can look at him and see autism. Those who don't know don't see it, and nobody would ever guess, but he has some characteristics that still are still there in my eyes. Like he is very regimented. If something is supposed to happen at 9 am, he is obsessing about it at ten minutes til, really harranging you at five til, and you don't even want to be there if it happens at say, 9:01. I am really wanting to make him a t-shirt that says "CHIEF NAG" on it. But then, you know what? Do what I do. quit paying so much attention to your child and his behaviors and start paying attention to other children without a diagnosis. Preferably in a one on one situation if possible. my mother used to have me come to class when I was worried about Logan and just have me sit and observe specific other children. It was a real eye opener. She taught a regular kindergarten class and I can tell you I saw a lot of kids with "autistic characteristics" and a lot of kids that did a lot of wierder things than whatever I was worried about at the time. Yes, Logan still has quirks (and he doesn't like to play with action figures either - he plays with invisible ones instead - hey cheaper too!), but so do a lot of his friends who are "normal". It took me a long time to "stand down" from the autism diagnosis. I had to learn to relax about it. Every child is going to be different. I finally am looking at Logan this way - I have a child in a seven year old body who shall be turning thirty at any time now. I just have decided to go with the flow. I can see him as an adult, happy and employed, and he has already promised six grandchildren for me to spoil, so if he grows up a little quirky, so what? So is everyone in someone elses eyes. If he is happy, then so am I. And right now I have the happiest kid known to man. Still get people asking me if he is always this happy, and doesn't he ever get sad? Not often. Virg. ================================================================================== From: YB > Date: Sun Jun 11, 2000 9:53pm Subject: To me recovered means .... 1) when my child's speech/language/social/communication/ receptive/expressive skills are all age-appropriate (including ability to make eye contact) 2) when my child is indistinguishable from peers (meaning no autistic behavior - hand flapping, shrieking, lost in own world, etc) 3) when other skills (such gross motor, fine motor, academic, etc) has caught up and are age appropriate Or when the doctor has tested my child and the doctor says my child is no longer in the spectrum I'd like to know what others think. ================================================================================== From: > Date: Mon Jun 12, 2000 6:46am Subject: Re: To me recovered means .... I guess I thought my son had almost recovered when he began attending mainstream preschool with a shadow. Five months later, he was tested (psych., speech and IQ) and he fell in the normal range for everything. That was the official recovery. Jenny ================================================================================== From: > Date: Mon Jun 12, 2000 7:52am Subject: Re: To me recovered means .... In a message dated 6/12/00 1:11:51 AM Eastern Daylight Time, ybrobst@h... writes: > 1) when my child's speech/language/social/communication/ > receptive/expressive skills are all age-appropriate (including > ability to make eye contact) > > 2) when my child is indistinguishable from peers (meaning no autistic > behavior - hand flapping, shrieking, lost in own world, etc) > > 3) when other skills (such gross motor, fine motor, academic, etc) > has caught up and are age appropriate > > Or when the doctor has tested my child and the doctor says my child > is no longer in the spectrum > > I'd like to know what others think. > YB: This description sort of fits what I would view as recovered. I am now starting to vaccillate on my view of my own just-turned 4 yr old son's progress. We have definitely rescued him from the the autism world- he speaks, his eye contact is normal, he follows directions, he doesn't have any gross or fine motor issues, and he is in a mainstream preschool with a shadow. However, I am starting to understand that we have entered the "purgatory" of not-quite-there yet in terms of recovery. My son still is struggling with a noticable speech delay and he has difficulty initiating appropriately and coping in unstructured situations. He isn't near "conversational" yet. I can see where he is, at times, about 9 mos - 1 yr behind in certain social situations. Most of his play skills are "appropriate," but not perhaps exactly up to age-level. I also can't quite determine exactly how much he comprehends of different concepts, and am a little intimated about the academic demands that he will face a few years down the road. I think we're definitely in the recovery-in-process stage, but it's very awkward having left the autism world, but not quite fitting into the 'typical' world yet either. We just keep plugging away with all the interventions and therapies and hope we can inch our way closer to the "recovered" goal. Andrea ================================================================================== From: Barb B > Date: Wed Jun 14, 2000 2:19pm Subject: Re: To me recovered means .... Hi, I think this is a very good definition of recovered in the strict sense (meaning "indistinguishable" - there was also a very good post about the distinction between that and recovered used in a looser sense). Also, the roll-call archive is a great idea! So great to read all these stories. The only reason I haven't posted is that my son, while making great progress, is not recovered yet (I continue to hope - he's only 4.2). People can update the roll-call as they get closer or complete recovery. I thought of another thing to add to the database that would probably be of interest - any residual issues and how they are being addressed. Also, that particular person's definition of recovery at the age they give it - like several folks who got tested or went back to a Dr. and "lost" the diagnosis. Lastly, to Andrea - hang in there, your son is still really young and you are doing everything right. I think the combination of ABA and biomedical interventions customized to your child's needs is absolutely key!! It's hard to think about the future - even if your kid is doing great, what happens when they hit adolescence and those hormones kick in. FOr instance, I was thinking about those GFCF kids - what are they going to do when their friends are eating pizza and drinking beer (or doing other things I did when I was a teenager)!! Yikes!!! But what can you do - hopefully they'll be normal enough to have to worry about those issues. BTW, once the database is compiled, maybe we should send it to that moron who was featured in the FEAT article yesterday. Barb B. --- In RecoveredKids@egroups.com , amterry@a... wrote: > In a message dated 6/12/00 1:11:51 AM Eastern Daylight Time, > ybrobst@h... writes: > > >1) when my child's speech/language/social/communication/ > > receptive/expressive skills are all age-appropriate (including > > ability to make eye contact) > > > >2) when my child is indistinguishable from peers (meaning no autistic behavior - hand flapping, shrieking, lost in own world, etc) > > > >3) when other skills (such gross motor, fine motor, academic, etc) has caught up and are age appropriate > > > > Or when the doctor has tested my child and the doctor says my child is no longer in the spectrum > > > > I'd like to know what others think. > > > YB: > This description sort of fits what I would view as recovered. I am now starting to vaccillate on my view of my own just-turned 4 yr old son's progress. We have definitely rescued him from the the autism world- he speaks, his eye contact is normal, he follows directions, he doesn't have any gross or fine motor issues, and he is in a mainstream preschool with a shadow. > However, I am starting to understand that we have entered the "purgatory" of not-quite-there yet in terms of recovery. My son still is struggling with a noticable speech delay and he has difficulty initiating appropriately and coping in unstructured situations. He isn't near "conversational" yet. I can see where he is, at times, about 9 mos - 1 yr behind in certain social situations. Most of his play skills are "appropriate," but not perhaps exactly up to age-level. I also can't quite determine exactly how much he comprehends of different concepts, and am a little intimated about the academic demands that he will face a few years down the road. > I think we're definitely in the recovery-in-process stage, but it's very awkward having left the autism world, but not quite fitting into the 'typical' world yet either. > We just keep plugging away with all the interventions and therapies and hope we can inch our way closer to the "recovered" goal. > Andrea ================================================================================== From: > Date: Mon Jun 12, 2000 9:06am Subject: Re: To me recovered means .... Andrea, I was told time and time again as Ariana got nearer to 5 or older we would see her catch up fast that year or more she had been lagging behind for the past 3 years in her speech, language and conversational abilities. She turned 5 in January and within 6 months time she made up a year or so in language abilities. She is now having "normal" conversations whereas last summer it was difficult for her. I think the closer you get to five you will see much growth in the language and conversational abilities. Sincerely, Katherine ================================================================================= From: JoAnne LaGreca > Date: Mon Jun 12, 2000 10:07am Subject: Re: To me recovered means .... That's exactly how I fell, like we've left autism but haven't made it to the big leagues! Hey, I'll take what I can! JoAnne amterry@a... wrote: > In a message dated 6/12/00 1:11:51 AM Eastern Daylight Time, > ybrobst@h... writes: > > > 1) when my child's speech/language/social/communication/ > > receptive/expressive skills are all age-appropriate (including > > ability to make eye contact) > > > > 2) when my child is indistinguishable from peers (meaning no autistic > > behavior - hand flapping, shrieking, lost in own world, etc) > > > > 3) when other skills (such gross motor, fine motor, academic, etc) > > has caught up and are age appropriate > > > > Or when the doctor has tested my child and the doctor says my child > > is no longer in the spectrum > > > > I'd like to know what others think. > > > YB: > This description sort of fits what I would view as recovered. I am now > starting to vaccillate on my view of my own just-turned 4 yr old son's > progress. We have definitely rescued him from the the autism world- he > speaks, his eye contact is normal, he follows directions, he doesn't have any > gross or fine motor issues, and he is in a mainstream preschool with a > shadow. > However, I am starting to understand that we have entered the "purgatory" > of not-quite-there yet in terms of recovery. My son still is struggling with > a noticable speech delay and he has difficulty initiating appropriately and > coping in unstructured situations. He isn't near "conversational" yet. I can > see where he is, at times, about 9 mos - 1 yr behind in certain social > situations. Most of his play skills are "appropriate," but not perhaps > exactly up to age-level. I also can't quite determine exactly how much he > comprehends of different concepts, and am a little intimated about the > academic demands that he will face a few years down the road. > I think we're definitely in the recovery-in-process stage, but it's very > awkward having left the autism world, but not quite fitting into the > 'typical' world yet either. > We just keep plugging away with all the interventions and therapies and hope > we can inch our way closer to the "recovered" goal. > Andrea > ================================================================================== From: > Date: Mon Jun 12, 2000 2:12pm Subject: Re: To me recovered means .... In a message dated 6/12/00 10:08:25 AM Pacific Daylight Time, jblag@b... writes: << > I think we're definitely in the recovery-in-process stage, but it's very > awkward having left the autism world, but not quite fitting into the > 'typical' world yet either. >> Yes, it is an awkward position. With my daughter's diet and health issues, along with her gross motor delays, we don't fit into the normal world either. Plus, there's the loss of innocence. I watched my beautiful, animated 15-month-old disintegrate because of a government-mandated shot. In addition, she almost died from her second DPT vaccine. So, even if she could eat everything right now, and she didn't have to take thyroid replacement hormones, I'm left with the knowledge that a terrible thing has happened to our children, and that it's continuing to happen to other kids. I now realize various government agencies are involved in a huge cover-up. None of the shots our children received were properly studied. How many babies will die this week because they received a Hep. B shot? This knowledge alone makes it difficult to slide back into the normal world. Patricia ================================================================================== From: > Date: Wed Jun 14, 2000 2:56pm Subject: Re: Re: To me recovered means .... In a message dated 6/14/00 2:22:00 PM Pacific Daylight Time, babautone@m... writes: << absolutely key!! It's hard to think about the future - even if your kid is doing great, what happens when they hit adolescence and those hormones kick in. FOr instance, I was thinking about those GFCF kids - what are they going to do when their friends are eating pizza and drinking beer (or doing other things I did when I was a teenager)!! Yikes!!! But what can you do - hopefully they'll be normal enough to have to worry about those issues. Adolesence is a worry for me, but I'm trying to take it one day at a time. The way I see it, my daughter would have no friends if it wasn't for the diet. Plus, I have another child without autism, but with celiac disease. Beer and pizza aren't in his future. I know puberty and hormonal surges could throw my daughter off kilter again. But I'm working with a good homeopath now to detox her and to try and undo as much vaccine damage as possible. BTW, once the database is compiled, maybe we should send it to that moron who was featured in the FEAT article yesterday. >> Sounds like a great idea. Patricia ================================================================================== From: > Date: Mon Jun 12, 2000 4:27am Subject: To me recovered means... ...........a child who is indistinguishable from his peers and one that is accepted as an equal by his peers. Alex ================================================================================== From: susannah g poe Date: Wed Jun 21, 2000 6:44am Subject: Re: To me recovered means .... I know I'm late on answering this post, but I did just complete a study on the definition of recovery (for a doctoral research project). I found every reference to recovery that I could in the research literature as well as parent's accounts, and then used a content analysis to determine the most frequently-described characteristics that defined recovery. I came up with this: A person is considered recovered from autism when he or she: *was previously diagnosed with autism, *has an IQ in the normal range with normal or above normal intellectual functioning, *attends school in a regular classroom(or holds a full-time job) without supports *no longer demonstrates autisitc behavior *is indistinguishable from his or her peers *and displays normal (or above) adaptive, social, emotional, and verbal functioning ================================================================================== From: YB > Date: Wed Jun 14, 2000 11:10pm Subject: Roll Call Database Hi folks: The database is ready.... Just click on DATABASE at the left side of the screen. This was a LOT of work! I am panting! Anyhow, you can review your entry, if you have any changes, Add a new record (copy your record and make your changes) and I will delete the old one. When you create your new record, just let me know that it is new by appending (NEW) at your group_member name - ie. ybrobst@h... (NEW). I will then delete your old record. Then I will edit the new record to take out the (NEW) indicator that you appended to your group name. I didn't want to give you edit/delete rights because somebody might accidentally delete all my work (I will cry!). Also, click on the printable report. And save the source HTML on your harddisk. This will not print very well on the printer because it is wide so you may be able to manipulate the HTML file. Otherwise maybe we can split it into 2 databases so it can print nicely. Just let me know...If we do split it to 2 databases...I am looking for volunteers ;). If someone wants to do stat analysis...feel free... I can't anymore. My eyes are bulging out. Thanks!! Have fun. ================================================================================== From: YB > Date: Thu Jun 15, 2000 10:14am Subject: Roll Call Database - Feel free to make copies of it Hi all again ... First off, I want to thank all that responded to the roll call. I just wanted to let you know that you are already saving the future of many children who are on their way to recovery (including mine). I have been reviewing your answers carefully along with my other research. Because this database was a lot of work, feel free to make backups of it occasionally just in case it gets lost. Publish the printed report HTML at your web sites... Tell people to link to it so they can learn from you. Publish it everywhere if the responders don't mind. Tell them that recovery is possible. The database is proof that recovery is possible - the people in the database are e-mailable (I think). Again, thanks.... everybody makes a difference. ================================================================================== From: > Date: Thu Jun 15, 2000 11:30am Subject: Re: Roll Call Database - Feel free to make copies of it Thank you so much for doing this. As an analyst, any researcher will tell you that "you have to be able to measure the results", in order to actually prove anything. The numbers are the proof. It would be so wonderful to not have people give you "the look" when you tell them that your child can't have that, and that by eradicating that food from their diet, your child is recovering. I believe this is the start of something really great. Once people start looking at the numbers that are truly recovered, it may help them look at this with an open mind. Thanks again - Tracy ================================================================================== From: > Date: Thu Jun 15, 2000 2:53pm Subject: Re: Roll Call Database - Feel free to make copies of it In a message dated 6/15/00 11:30:50 AM Pacific Daylight Time, Tracy_Reed@i... writes: << Publish it everywhere if the responders don't mind. Tell them that recovery is possible. The database is proof that recovery is possible - the people in the database are e-mailable (I think). Again, thanks.... everybody makes a difference. >> How do I access this database? Thank you so much for doing this. Patricia ================================================================================== From: Prokofiew > Date: Sat Jun 17, 2000 7:14am Subject: Re: Roll Call Database - Feel free to make copies of it Where is the Database? Did I miss it? Was it posted here? ================================================================================= From: YB > Date: Sat Jun 17, 2000 4:32pm Subject: Re: Roll Call Database - Feel free to make copies of it Hi Patricia: At the left side of your screen (for egroups) where you have the menu (ex. messages, post, etc.) click on database, then click on roll call. Thanks. ================================================================================= 6 months later..... ============================================================================ From: "YB " > Date: Fri Jan 19, 2001 4:32am Subject: Roll Call of Recovered Kids for Jan 2001 Hi all: It's been six months since our first roll call of recovered kids back in June 2000. I am ready to update the RecoveredKids database and ADD new recovered kids. Could I take a roll call of recovered kids again? If your child is listed already, I am willing to update the info. Maybe you may have had a new intervention that worked better. If your child is listed already but has no new info, don't worry - your info will stay in the database. Please note that this database and the original text is published widely on the Internet for others to see. Thanks so much. Example: Age of Child Today : 4 yrs 4 months Age at diagnosis : 18 months What was the diagnosis : Autistic Spectrum Disorder Age at Recovery : 4 yrs 1 month Interventions: Special Ed - includes Speech Therapy, OT ABA GFCF Diet B6/Magnesium Labs Tests (if any): Chromosome Blood Test Yeast Stool Test Again, thanks for your input. YB ======================================================================== From: "YB" > Date: Sun Jan 28, 2001 7:40pm Subject: Re: Roll call of Recovered Kids Some added info -- Listmembers, If you have a child that has recovered, please visit The current published database is at The original posts are at Thanks so much. Yvette Brobst aka YB P.S. This is the only recovered database on the Internet. Please let our pediatricians, health insurance, and schools know that recovery is possible! ============================================================ From: "Kim Ryan" > Date: Fri Jan 19, 2001 2:48pm Subject: RE: [RecoveredKids] Roll Call of Recovered Kids for Jan 2001 Age of Child Today : 3y 8m (female) Age at diagnosis : 23 months What was the diagnosis : PDD-NOS with mild autistic tendencies Age at Recovery : 3y 3m (no longer tested on GARS or CARS scales and tested with age-appropriate language, and motor skills). Interventions: *ABA-intensive and very, very closely monitored with the finest of therapists (started with Lovaas, switched to NET/errorless) started ABA at 26 months. *OT-starting at 24 months *efalex / efamol (see www.efamol.com ) - not on this all the time - only about every other month *reduced dairy diet *one dose of secretin (gaspretin - a japanese brand) Labs Tests (if any): Urine Organic Acids Yeast Stool Test Fatty Acid Profile Thyroid studies -Kim ========================================================================= From: "YB" > Date: Thu Feb 1, 2001 8:13am Subject: Re: Roll Call of Recovered Kids for Jan 2001 Kim: Congratulations! But I just got to know - what is "errorless" under NET. Is NET natural environment training? I always hear about errorless and thought it was some kind of a pun with ABA. (duh) And how many hours ABA per week may I ask? Thanks so much. YB ================================================================== From: "Kim Ryan" > Date: Thu Feb 1, 2001 2:45pm Subject: RE: [RecoveredKids] Re: Roll Call of Recovered Kids for Jan 2001 Thank you. Errorless is NET (yes, Natural Environment Training). The child is not "noped" as in the traditional Lovaas style of therapy. They are prompted very quickly, instead, if the answer isn't quickly and properly produced by the child. This is what Sundberg/Partington and Carbone promote and it is strictly "Skinnerian" (i.e. brought by the original works and theories of BF Skinner). Lindsay received up to 40 hours per week of the Lovaas-style of ABA and then switched to errorless at 36 months at 32 hours per week and then at 40 months, she went down to 20 hours per week of errorless. We are looking now to go to 6-10 hours per week of errorless, at the most. Her next IEP is tomorrow. -Kim ============================================================= From: > Date: Thu Feb 1, 2001 4:29am Subject: Recovered Kid Hi YB, I saw your e-mail about looking for info on recovered kids. We just got the results from Austin's re-evaluation this week. He is no longer autistic. The doctor said he does have an auditory processing issue but that he can overcome this. I have known for a couple of months that he was no longer autistic. Evelyn Age of Child Today : 4 yrs 10 months Age at diagnosis : 3 years 10 months What was the diagnosis : PDD-nos, Hyperlexia Age at Recovery : 4 yrs 10 month Interventions: PPI Classroom Auditory Integration Therapy GFCF Diet Supra NuThera Occupational Therapy Speech and Language ( Private 2x wk, In PPI 2 x wk, Pragmatics Therapy 1 x wk, Group Therapy) Sensory Integration Therapy Labs Tests (if any): Yeast Stool Test Hair Analysis Blood Test Urinalysis ====================================================================== From: YB To: RecoveredKids@yahoogroups.com Sent: Thursday, February 01, 2001 12:07 AM Subject: [RecoveredKids] Re: Recovered Kid Evelyn: Wow, this is great - Recovered in one year! Okay what is the secret? What is a PPI Classroom? I thought I knew every intervention there is ;) And may I ask who provided all these therapies - your own or through special ed? Congratulations! And welcome to the database! Thanks!! YB ==================================================================== From: > Date: Fri Feb 2, 2001 6:51am Subject: Re: [RecoveredKids] Recovered Kid Hi YB, PPI is for Pre-Primary Intervention. I am thrilled to have found this group. I also belong to the GFCFkids list. I would like to share our story with the group. Austin is a twin, born 12 weeks early. His brother is doing fine. Austin weighed 2lbs 5 oz and spent 9 weeks in NICU. The ear infections started at 6 months after I stopped nursing. For a year, he had repeated ear infections/fluid. We took him to an ear, nose throat specialist when he was 18 months. He told us he had no hearing at that point. We had tubes put in. I think the damage was already done though. I suspect that he had little or no hearing for during that year. Austin was dx'd PDD-NOS, Hyperlexic last March. At that point, he was not able to answer a 'wh' question. He rarely interacted with other children. He had poor eye-contact. I can count on one hand the number of times he had asked us a question. He was echoing and scripting alot. He was reading at a college level (they stopped the IQ scoring at 157 because the doctor said 'No use taking this any further'). We were told that reading without comprehension gives the dx hyperlexia. The IQ test ranged from 60 to 157. He was all over the map. That was then. This is now. The low IQ scores have gone up to the 100+ range. The psychologist who did the re-evaluation told us he has an auditory processing issue and that once this is resolved, he believes these scores will go up. All of the concerns that gave him the original diagnosis have been resolved. I am going to have him go through another round of AIT. Also, we are going to seriously look into the FastForward to help with the auditory processing issue and to help him catch up. He lost almost three years. Everyone who works with him is amazed by his progress. His memory is phenomonal. The AIT last May was the first intervention we did that gave us wonderful results. I will never forget the third day of treatment. Brian (Austin's twin brother) was standing at the top of the basement stairs. He called out to Austin to go play in the basement. Brian looked at me, with resignation and a big sigh, and said "I'll go get him." The reason being, Austin never responded to his name the first time you said it. Before Brian could turn around to go get him, Austin was standing behind him saying, "OK Brian, let's go!" I cried. On day 10, I overheard Austin and Brian talking. Austin was telling Brian how he had given Cindy (the audiologist administering the therapy) flowers for her birthday. Austin had NEVER told us what he had done in the past. The second intervention we did that we saw amazing results with was the gluten free casein free diet. We took him off the gluten and casein and I watched him go through withdrawal for 5 days. He completely stopped talking. I went to a speech by Paul Shattock while Austin was so sick after the start of the diet. He told me that the worse the withdrawal the better the outcome. Well, he was right. Austin is no longer the same child. Austin has had bowel problems since birth. This too has almost been resolved. All of the other interventions (speech and language, occupational therapy, physical therapy, pragmatics therapy, etc) have been necessary to help him catch up. Well, that's our story. I know it's long but I want to share it for a couple of reasons. The doctor that did the initial dx gave me a list of people to call for assistance. One was ARC (association for retarded children) -- I never did call them. Another was ARI (autism research institute). At that time, the only thing I knew about Autism was that it was incurable. I cried for 2 weeks. Then I sent for information from the ARI and I found hope. I read Lisa Lewis' book "Special Diets for Special Kids" I read an article about Karen Serousi and how she cured her son. I went to a DAN conference in San Diego. I went to a speech by Paul Shattock. The ARI, Paul Shattock, Lisa, and Karen not only gave me hope, they gave me a plan. It was with their help that I was able to help my son. Evelyn ===================================================================== From: "YB" > Date: Fri Feb 16, 2001 5:15am Subject: Recovered Kids Database has been updated Hi all: The roll call database has been updated at --- 3 children have been added. Please check (& recheck) your records. The published database is at --- Note that some sites link to the above URL. The original text is at Again, old-timers and new folks to the roll call, the original messages are published so the visitors can understand the database better. The current one is its original form with the typos, etc. Actually, in my opinion, reading the posts after 6 months, I find that the posts are so original, so real, so great -- Please review this text anyhow and I will remove anything that you wish to be removed. Thanks all for this database! YB