Great post.

 A must-read for all new "autism families."

I am SO glad you pushed through and finished this! You rock, girl.

And you're absolutely right. One of the things I always tell people who are following what I think may be cult-ish, spurious lines of medical reasoning is to keep in mind this old scientists' saying: The plural of 'anecdote' is not 'data'. I don't care how many people tell you about how their sister's boyfriend's cousin did well on this regime or that supplement...until it's been subjected to rigorous and widespread scientific scrutiny, it's nothing but rumor.

Thanks for sharing your personal experiences. Autism can be a devastating diagnosis, and parents often cling to promises held out by unproven therapies -- especially since there is so little research out there. As an editor of an online magazine (www.spectrumconnection.net) that supports families affected by autism, I've gone to many autism walks and conferences and have always been wary of exhibitors peddling programs that promise a "cure."

 First off, autism needn't be the calamity it's presented to be. Perhaps parents wouldn't be ripe for the claims of these modern-day quacks and charlatans if they knew this.

Second, if we form a bloc and share information, new parents might not fall victim to these programs.

tweeted and facebooked. :) I actually managed not to get sucked into the DAN stuff, but part of that had to do with not having the money to even if I wanted to, and the fact that my first turn was to check the electronic resources for the library I work for for peer reviewed material. I was oh, lovely, I can't afford 40 hrs a week of ABA.... did't know about all the resources I qualified for through our community mental health department.

Thank you, thank you, thank you.  I'm passionate on this subject as a former DAN! parent who tried chelation and who has to live with the regret.  When I put up a website for a local parenting group I got flak from a parent who wanted me to post links to "biomedical" sites.  I refused and we got into a little showdown re the site's policy.  I ended up essentially abandoning the site rather than give equal time. 

I think a big problem is still that post-diagnosis, parents are often sent into the hinterlands with no real advice on how to proceed.  We're often still thinking in terms of a medical model of treatment, b/c we've been to a medical professional, most likely, for diagnosis.  First-line providers and pediatricians need to be better and more proactive about giving parents guidance.  If we're left with only a diagnosis and no support, a lot of us go into research mode, and it can feel good: the "Lorenzo's Oil" fantasies, the Ph.D. in Google, etc.  We are parent warriors and we will rescue our children.  It's a satisfying narrative, but it wastes time and resources.

Glad to hear from like-minders. This was a challenging post, and I hope it draws a clear distinction between parents who rigorously investigate and document choices -- whatever those choices may be, and those whose need to "fix" their child makes them exploitable. The latter need interventions, for their own and their children's sake. Thanks for helping to spread the message.

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph

My sons were diagnosed in 98 and 99, which is when CAN and NAAR were started.  I have always shared that when I got the SLP assessment it stated "autistic-like" and also put me down quite a bit, I had two kids under three who did not talk in this small room and she had the audacity to write about my stress levels - the first of many assessments I hated. 

 I looked in the dictionary for autistic and then found a number to Autism Society of America (ASA) and spent several days ordering through their fax back system many documents on autism, still have some of those stapled pages. 

I called the Hospital clinic and refused to have my child be seen by that therapist and a new one called me and we spoke before meeting and she ended up with both boys for a few yrs.

Back then I joined a yahoo group DTT-NET and read a lot of their stuff but never went to UCLA to see anyone, we stuck with OT and speech at the clinic, where they did joined therapies with the boys and used the pool they had down the hall for many of these appts.

Few yrs later after the third SLP due to two moving away the SLP and OT sent a ltr to the Dr suggesting Matt have a g tube due to feeding issues.  Went to Childrens Hospital for a consult with GI and he agreed with me and our Ped that this was not necessary - then I stopped going there for therapy

Back when I first started writing in June of 05 at BellaOnline I posted about David Kirby being on Meet the Press and said I was just passing on the info not interested - I got hate mail that was so mean spiritied and a few yrs later when I mentioned we went to Ped and the boys got shots and TB tests more hate mail.

Even David Kirby sent me email but never sent me his book, not that I would have read it.  For the past four yrs the most read articles are still -

Classroom Modifications, Supervised Visits and one on teenage suicide.  I get emails from parents that are full pages in posting about how they feel and can relate to my site.  I stated at the start that it was on my experiences and not on vaccines or cures.  For a long time even the Help Group kept sending me their Press Releases trying to get me to be their advertising, did that once and never again.

Last summer I joined twitter and first learned of BlogHer and still not really sure why this annual conference and such hysteria from mom bloggers, I was turned off last yr as all I read about aws the swag - new term for me as well, and the drinking, so this yr not really even paying attention, I was looking for the information shared and did not seem to come across a lot of that.

I am also disappointed that there is no twitter discussions on the annual conference through ASA, many of the autism Moms seem to prefer BlogHer and that confuses me as well.  I dont have time for any of that type of thing and seems many parents are doing all sorts of conferences and not sharing about their kids as much or even on autism.  

First question most ask me is if I am doing gfcf for my kids.  Or they feel sorry for me having two kids, but no one ever really asks about the kids and what their interests are and what books to read for them or toys, etc.

I started my blog to meet other parents since BellaOnline does not support comments, although there is  a forum that was more active in earlier yrs.  I was gung ho at first with the blog, but lost sight of the reason I started it in the first place. 

Now I am trying to figure out what to do next, both kids in middle school and I got burned out on writing for a while and dealing witb so much and so many wanting something from me.

Matt is not going to ESY due to late signing up and the location is not safe, a high school and his aide did not get accepted, so eight weeks home and think we will do LA Zoo evey Friday and maybe try beach, never did that with them both as it is a lot for one person to do and they are opposite issues.

I talked on the phone yrs ago to Dr. Rimland and used to read a lot of his stuff to try to understand things.  Kids have not been on supplements either and disabilities run in the family.  Father is schizophrenic, my sister had a brain tumor and is blind, Alzheimers on my side. 

Just recently a reader sent me an email saying that my kids might have brain injury from their father.  People read that the father has PS and they assume he has been with the kids when babies, same with a Dr long ago who instead of helping me with feeding therapy wanted to re dx them. Back in 98/99 not a lot of families with two kids so who ever got us thru Reg Ctr wanted to do all sorts of things, but I would get turned off by assessment and do nothing, did not want these people in my home.

I did parent training for floortime when MAtt was 9 and this one parent asked me why I waited so long to do the therapy.  I hate having to explain my family to others who think they are experts when their kid is only 2.

Anyway good article.  Glad to retweet it and share on facebook. 

This is such a refreshing article, being on the autism spectrum and a mother of a child on the autism spectrum I thought I would be embraced, by the autism community, but so often the autism groups that do not employ autistic individuals and many parents with autistic children often kept at arm’s length, it’s like how can she know she has the problem too!

As for myself the autism community have been brilliant and it’s great to see more and more none autistic parents listening to those with lived experiences. I realize the gap needs to be closed as autistic and none autistic parents with autistic children need to communicate and listen to each other more, for this reason I have already started a link on my web site Conversation Exchange - Two Points of view : http://asplanet.info/index.php?option=com_content&task=view&id=115&Itemi... and will add a link to this very well written insightful article.

When you say: "We started to realize that DAN! diet and supplements affected nothing except our bank account....... and I guess that makes us the recovered ones, not our son"
I am continually hear this more and more and I do agree when children first get diagnosed it’s a huge shock and often no real support, the amount of money grabbing fad treatments is unbelievable, parents need clear options, and my advice has to be listen to the autistic community, they are the only ones who have helped me on my own journey and parents like yourself who now realize all children grow and adapt whatever we do, but if we work with them and embrace their differences, a little extra support, time and lots of encouragement works wonders. Aspergers Parallel Planet

Great post!  I gave it a Digg.  Unfortunately, I feel iike there is an ever-widening division in the Autism community of those who believe in a cure and those who, to one degree or another, embrace Autism.  Autism isn't some contagious disease that my son caught somewhere.  It is part of who he is.  I want him to learn to function in this world to the best of his abilities, but if he never made an inch of progress from who he is today, I couldn't be prouder of how far he has come.  Autism didn't just happen.  In the past, people with Autism were locked away and forgotten.  It hasn't been that long since surviving childhood was extremely difficult due to disease and lack of hygiene and antibiotics.  How much more medically fragile than other children would an Autistic child have been during the cholera, yellow fever and other modern plagues?  Are we now willing to risk the return of diseases that should have been gone by blaming Autism on vaccines?

When my two were diagnosed in '94, they were still calling it Silicon Valley Syndrome. Our geneticist convinced us that our son and daughter were the victims of genetic mutation from my exposure to computer mainframes. Now that I'm coming out the other end of the Autism Spectrum tunnel with one starting college and one entering High School, I can safely say that the one thing that remains true is that every child is different and nothing works for everybody. Oh, and teens on the spectrum rock!

My Blog: http://www.cannedlaffs.com

As a "new" autism mom, this really spoke to me.  I've had a really hard time with all of these cults, as you rightfully call them.  ABA works.  Occupational therapy works.  Speech therapy works. 

My parents and siblings only know about autism via Jenny Mcarthy on Oprah and they wonder why I'm so irresponsible for not curing my autistic son exactly the way Jenny cured hers.  What's wrong with me?

And then, when I walk into any autism support group (online or IRL) I get treated
like I'm nuts for not being willing to try GFCF or chelation or pay a few thousand dollars to get my kid in with a DAN! doctor.  I'm
ostracized by the very group that I need to help me through this.  I'm a bad parent if I don't throw myself brainlessly into the cultish practices.

Autism has turned our lives up-side-down.  I can't deny that.  But like any parent to ANY child, I'm trying to help my son live the fullest life possible.   Thank goodness for posts like yours that help us out with that, and help us to know that we're really NOT alone.

'Twas Brillig

@Bonnie -- I am glad that you are now part of a strong community, and are willing to use your experience to educate and inform others. I am sorry that you get so much unsolicited negative advice as a result. It is not possible to please everyone in the autism community, but if we are confident, positive, and inclusive then hopefully more people will listen to us than to the fearmongers. You are helping people who don't always write in.

As for BlogHer, the conference is great fun (as reported by Susan Etlinger: http://susanetlinger.typepad.com/the_family_room/2008/07/blogher08-redux...), drinking is an avoidable sideshow for every conference I've ever been to, and the swag is everywhere (one of my favorite moments was when Liz Henry, piloting her wheelchair, took my nine-year-old daughter to the vendors and came back with bags and bags, saying, "No one could refuse the combination of me plus a cute kid!") If you're looking for an autism-specific IRL blogger meetup, then we'll need to work harder to have a big presence next year. But how many of us can get away, realistically...events like your autism twitter day are more inclusive at this point, methinks.

So sorry to hear about ESY. I have been thinking lately that we need to start a Peace Corps variation: Autism Corps, with the goal of helping ALL families affected by autism get respite, and all those with autism get needed supports. We'll need a celebrity spokesperson, of course. I'm voting for Joe Mantegna (rrrowr).

@TXPoppet: "I can safely say that the one thing that remains true is that every child is different and nothing works for everybody." Exactly. 

Everyone else, I am so grateful to you for sharing your experiences. Let's try to keep our voices strong and positive, so that vulnerable autism parents know they have other options!

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph

Miss Britt

http://www.miss-britt.com

"Dignity is Overrated"

Wow. Just wow.

Rita Arens writes at Surrender Dorothy and BlogHer and is the editor of Sleep is for the Weak.

While my family and I have NOT been directly affected by autism, I still read about it since it is so fascinating--just incredible the spectrum of it and how differently it manifests itself in each person.  Equally fascinating are the individuals themselves and their families and how they work through the challenges and celebrate the triumphs.  During the course of my reading, I kept coming across some of these questionable therapies and personally thought they smacked of B.S., but figured since I wasn't immersed in it due to a child or other loved one having the disorder, I thought I'd keep my mouth shut.  I'm glad to see someone like you has come forward to help guide the newly diagnosed away from the quackery and shams and towards more sensible approaches, including giving them a guide and tips to help them make better decisions for their particular situations.

Very informative.  Thanks.  I hope you don't mind this small typo-alert: "I consider DAN! an autism cult because they recommend putting autistic
children through their customized, costly, and rarely-insured diet,
supplements, and alternative medicine ringer"  I am sure you meant wringer and that the w ran off.

@chndlrs, thanks for the correction. Fnarf. 

@Rita & @MissBritt, glad you are wowed, hope you might use your powers of good to spread the word because damn there are a lot of people out there not questioning the cult-speak AT ALL.

@wineplz Question BS wherever you find it! You might even have more clout as a neutral observer.

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph

I appreciate this post on Autism cults. Why? My older sister has
Asperger's syndrome. And she was only diagnosed within the past six
months. In some ways, it was a relief, because finally there
was an explanation for all of her inexplicable behaviors. In other
ways... Well, now Mom keeps saying things like, "was it something I
did?" etc. She's considered trying some of the stuff mentioned in the
post. Good to know they're bunk, because they didn't make much sense.

Asperger's
syndrome is high-functioning on the autism spectrum. My sister is
college educated, but because she literally can't relate to other
people, the chances of her being able to hold down a job are virtually
nil. It explains her obsessions, too. She spends all her time at her
computer, mostly playing online games like Final Fantasy. It's
frustrating, because she won't do anything else.

And I mean
that literally. Mom made sure that all of us kids (there are six of us)
had the necessary life skills to take care of ourselves. That means
that even the three boys know how to cook and clean. Mary-Alice
refuses. If Mom and I weren't here to cook and clean up after her,
she'd starve to death and be drowning in filth. Mom has spent years
trying to teach her to pick up after herself, but it hasn't worked.
Heck, most days she has to be reminded to get dressed! The violent
temper tantrums make more sense now, too.

All my research points
towards early intervention (as in behavioral modification in the first
five years of life) being the key to at least help, but at this late
date, there's very little that can be done.  She's 36 years old. 

Sometimes life just sucks that way.

@bratling, sounds like you and your family (and likely your sister) have all had rough patches. But please don't give up hope; early intervention is important, but that doesn't mean that behavioral approaches stop working after a certain age -- they continue to work with people of all ages. I would recommend getting a consult from a behavioralist familiar with previously undiagnosed adults, if that is possible for your family.

In the meantime, it might help you to try and understand her behavior. I recommend readingFunctional Behavior Assessment for People With Autism: Making Sense of Seemingly Senseless Behavior by Beth A. Glasberg. I also recommend books by adults with Autism or Asperger's, such as Look Me in the Eye by John Elder Robison, Born on a Blue Day by Daniel Hammett, and Thinking in Pictures by Temple Grandin.

Does your sister have connections with peers? If not she might find it helpful. The Asperger's Woman Association is on Twitter at http://twitter.com/AspergerWomen and has a site at: http://www.blogtalkradio.com/AspergerWomen.

Good luck, and again please don't think it's too late to bring some harmony to all members of your family.

Regards,

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph

Shannon, I am a new autism mum (and is has been suggested a possible Aspie myself) My 5 year old son was diagnosed just 4 weeks ago...i was lucky enough to be taken under the wing of an amazing group of ladies who have set up a group on FB called Countering AoA http://www.facebook.com/group.php?gid=91368243169 (incase you fancied a look) as soon as i read what they believed i knew that was how i felt.

 My son is not "Vaccine Damaged" or "Broken" as some of the "Cults" suggest, he is plain and simply Alfie...my boy! 

We have since set up our own forums and website to try and help/support others who are on the same amazing journey as we are.

feel free to come and have a look around...

 http://www.raisingautism.co.nr/

 When i read your Blog i round myself nodding along with your words, they are inspirational and, well for lack of a better phrase Spot on!

thank you for sharing your story

Xx 

I saw a you tube clip of Karyn Seroussi on The today show yrs ago and she says her son was "kidnapped"  at around 1:20 of the clip

http://www.youtube.com/watch?v=2EJUsyypI4Y

 using that term sure is taking it to the extreme level.  She sent me an email few months ago in response to my HARO and I researched her and after seeing that clip there is no way I was going to review her latest book.

A small point: ABA can, in my experience, be just as much of an autism cult as biomedical approaches. The whole "40 hours a week of intensive therapy started early enough and sustained long enough and your child *will* recover from autism" line was all too common around the time I became part of the autism families' community in the UK (around 1995). Based on a study of only 19 individuals, a 'cure' rate of 2/3 was consistently touted as a basis for local authorities funding expensive programmes but never replicated in any scientific way. A huge Europe-wide study that I was promised would prove it beyond question to be the only effective approach went quiet after a  few years and I never did hear the outcome despite repeated enquiries.

Bits of the ABA approach may be useful to teach certain skills, but then so are many other educational approaches. Fundamentally in my view if it's in the child, careful and appropriate (ie addressing he individual's strengths and weaknesses) education both formal and informal will bring it out - if it isn't, and the child's difficulties are just too severe, then it's far harder and no approach is guaranteed. The experience of many families  I know bear this out.

We were lucky - our now 18 year old will, with support, be able to live semi-independently. But a lot of that is intrinsic to him more than anything.

@Rufuscut Hooray for your intrinsically wonderful son!

ABA has changed a LOT since Lovaas and the 40-hour mantra/aversives/one-size-fits-all approach. My son's program has always been incredibly flexible and specific to his needs, with reasonable goals. It incorporates natural learning, Pivotal Response training, inclusive playgroups with typical peers, self-help skills, gradual generalization of skills (learning to do them independently in different and spontaneous environments, not just at the table with a therapist 10 times in a row), etc. 

And it's not just us. This kind of varied, customized program is what is recommended by most ABA providers, based on reports from recent ABA conferences.

However ABA is still data-driven. And for that I am grateful. I am able to track my son's progress not just month-by-month, but see yearly cycles of improvement (spring) and regression (winter).

My son thrives on the structure and routine of ABA. But I think any truly child-engaged, consistent approach with input from a knowledgeable third party (QA-style) would help. 

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph

 I don't attend as many parent support groups, mostly because I was turned off by the cults without even knowing the cults (or non) cults existed.

I am in the "Non Cure" - Embrace what it is school of thought....

 The Autism Corp idea is fantastic. I worked on a short film with Inclusion Films, a film company that teaches film making skills to folks with special needs and then helps them find work in making all sorts of film. Joey Travolta owns the production company and is a huge advocate for autism. He is speaking for the program my son attends in September. I thought of him immediately... anyway...

Great stuff!

= + =
Julie Jordan Scott is a Writer, Life Coach, Poet,
Speaker, Actor, Director and Mom Extraordinaire
http://juliejordanscott.typepad.com/

I hope another side of this story can be presented.  I've had a different experience that is equally as valid.  I'm sad to see you throw  blanket over an entire group of people and claim they have all been misled or are just too "susceptible" to "inappropriate" therapies.

I really agree with your point that all treatment options be evaluated and scrutinized - that's the same approach we have taken with our daughter as well.  I can speak for our medical provider who would say that nothing is guaranteed, that there is no known casue or cure, but that some improvements might be possible with certain treatments - if only you try them.

Do note that I agree with the medical community at large - and you - as it relates to chelation.  It's quackery for sure.  I do, however, believe that SOME of these kids can have metals problems and that taking steps to avoid further ingestion of metals is reasonable.  

While I do not deny that there are some "over-the-top" folks out there who verge on cultism - I feel like you're just sterotyping here and that's unfortunate because you seem like a truly well intentioned and erudite person.

I fear that a family might read this and not pursue an appointment with a DAN doctor and find them to be equal parts skeptic, realist and yet willing to try treatments that aren't "mainstream."  Maybe our doctor IS different, so even more reason to encourage parents to give it a try.

Since autism is a disorder that science knows so little about, we are all reaching out for answers.  It's an affliction that involves not only the neourological system, but maybe even the immune system and so it combines the two systems that science struggles with the most - should it really shock anyone that answers aren't "at the ready?"

Meanwhile, real kids and their parents struggle because there is no single playbook.  While we should always be inquisitive, scholarly and critical of any treatment we put ourselves through or our children through, I find it interesting that somehow you have all the answers.

I'm truly sorry your journey started out so rough - it's mostly terrible that someone would have indicated a cure was the goal or even an expectation - that's the real tragedy.

So we are all on our own journey until real research that is unbiased and well funded can give us more insight.  Unfortunately, the realist and the skeptic in me tell me that we're a long way from that.  Too many drugs are put on the market and then pulled off the market - and too many medical studies are conducted with desired results in mind.  So, we will all do the best with what we have - finding time to allow our children be children and doing our best to improve their life every day.

J. Handley http://vineschool.org

As I read your blog entry I felt truly baffled because your outcome with the DAN! protocol is so radically different from the three boys I have seen transformed from it! I guess if I had gone through this protocol with no results I would feel the same way.

My first experience is with my 4, almost 5 year old. His dx's: Sensory Processing Disorder, Adaptive Disorder with mixed anxiety and depression, OCD, ODD, tics. I'm shocked that he did not receive a dx for adhd... He tested very close to the autistic spectrum, but is not autistic (although he has many symptoms). Within about 2 months into the DAN protocol we witnessed the following changes: no more constipation, uricaria, allergies, asthma, severe croup, tics, stuttering; 90% reduction of "stimming";amazing ability to socialize and strike up conversations (he used to growl at strangers and run away); amazing increase in receptive and expressive language (used to say "what did you say" every time I spoke to him, now he looks me in the eye when I speak and fully comprehends what I say and correctly responds); more awareness of his environment (asks tons of why questions), I could go on and on....

Some of the findings in the bloodwork for my son: PANDAS (autoimmuntiy with strep infection which causes tics and OCD, requiring an antibiotic), Vit. D deficiency, Zinc deficiency, copper toxicity,need for riboflavin, food allergies (wheat, soy, eggs, garlic), intolerance to foods with phenols. We did not have to chelate, as my son's metals tested low.  

My second experience is with my 18 month old. He had many health problems and what appeared to be "regressions" or a severe "lack of progress"...good old developmental delay in all areas. There were times when he was completely mute for 6- 8 weeks. By the time he was 13 months old I knew that he was heading toward autism. He had not met any new milestones in 6 months, was quite delayed, and most upsetting, he would sit in the corner for HOURS if I let him. He would just sit there playing with toys in complete silence. If I sat to play with him, he would just go on playing like I wasn't there. I got him into the DAN protocol and within 2 WEEKS of the gfcf diet he began to crawl through the house looking for someone to "play" with! I couldnt' believe the first time I was loading the dishwasher and he came to me, pulled out a spoon and handed it to me! The doctor then added a couple of supplements which just made him come alive and want to verbalize. Example: he used to sit in the high chair like a bump on a log while I would feed him. Well, he finally started pointing to things that he wanted and tried to communicate to me. He started playing little teasing games, like throwing things on the floor just to enjoy my reaction, or he would hand me something and then take it away and giggle at me. Some say that this is just a coincidence, but I say NO WAY. He had zero development in 6 months and now he has blossomed within 2 -4 weeks! He continues to develop. We are only half-way through the protocol with him.

Before I tell you about the third experience, I want to comment on what my boys' pediatrician has to say about all this. She has not seen much of my 4 year old (because he never gets sick anymore thanks to the DAN protocol), but she does see my 18 month old for his check-ups. When I saw her at the 12 month check up she sent my son to a neurologist because he has some type of "syndrome". She wouldn't tell me what "syndrome" she was thinking of, but I knew that she thought there was something very wrong with my son's development. When she saw him again at 16 months she couldn't believe that he had made so much progress. She knew we were seeing the DAN. She knew that my son was gluten and casein free. She said that he must have celiac disease since he responded so well to the diet. I say, maybe she's right, but I think there is more to it. I think he had or was close to autism and the DAN protocol was just what he needed to get him back on track...I'd also like to add that since birth he has had chronic colds, infections, and constipation (he also started becoming "croupy" right before starting the protocol). Not anymore. If he does get a little cold, it is over in a day or so with no secondary infections.

My third experience: my friend's 4 year old son diagnosed with PDD-NOS. As she saw my boys improve she decided to persue the DAN protocol with a different DAN than the one we were using. When she gave him the first supplement, it was clear to both of us that he would be a responder. He is now on about 6 supplements (all of which were prescribed based on bloodwork) and is a different child. This is a child I have known since birth. This is a child who has always been developmentally delayed and was in his own little world. This little boy never spoke to me, even when I would try to speak to him. When my 4 yo would try to engage him to play he would just sit there and ignore him and bang on a toy or something. NOW, 6 weeks into the DAN protocol, he strikes up conversations with me, LOOKING ME IN THE EYE! He calls me "Miss Stephanie"! He engages in play with my son, he even initiates play! I have to be honest, I am almost jealous of the response that they have seen. I had to do the gfcf diet (among other diet alterations) to get that kind of response. All she had to do is add some supplements! They still have a lot more to do, but I have a feeling that he will be simply amazing when she is done!

If you are still reading this, I'm not going to say that this has been an easy path. I have been putting 2 boys through the protocol at the same time. My husband and I have had to give up all extra spending. We have even tapped into savings. When the doctor suggested Hyperbaric Oxygen Chamber for my 4 yo, we actually had to stop because we can't afford anything else beyond the expensive food and supplements. Yes, in going down this path you are taking a risk of losing a lot of money if you don't get any results. But if my kids had cancer, I would still treat them even if there was only a 30% chance that they would live. My doctor was very upfront about his abilities. He says that he doesn't know which child will respond and which won't. Maybe I am just one of the fortunate ones. But I will say this, the DAN protocol has changed our lives. I used to spend hours every week in the doctors office (pediatrician, allergist, etc) with my boys and the doctors just put bandaids on their booboos. My 4yo's asthma/allergies started to become life-threatening. On two occasions I had to throw the kids in the car and head to the ER. Every time he would get sick (at least once a month), he would need the following: antibiotic, steroid, nebulizer. Not anymore. When he gets a cold now (which is very rare), it is over in 24-48 hours. No doctor appt, no medication. We have not used the nebulizer in 7 months (we used to use it about 4 days/month). Chronic urticaria (hives)? The mainstream MD's prescribed antihistimines which made my son CRAZY. After starting the DAN protocol, no more hives. Constipation? Both of my children were on Miralax (4 yo was on it for 18 months, couldn't poop without it). We were able to get both kids off of Miralax within a couple weeks. In a nutshell, our lives have changed and my husband would say the same thing. We think it is a miracle and an answer to prayer.

 I am not posting this to make anyone feel bad who did not have a good experience with the DAN protocol. I just want both sides to be represented. You need to do your own research and don't be swayed by what your "friends" are doing. You need to research any doctor that you go see, mainstream or alternative. There are alot of incompetent doctors out there who will do more harm than good. Our DAN (Andrew Levinson, Miami), and my friend's DAN doctors (Bradstreet and Rossignol, Melbourne, FL) are very well respected and well-known in the autism community, and they are known for having a high success rate.  Anyone can become a DAN, you need to do your research before signing on.