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On Autism: Whom to Trust, and Whom to Avoid Like the Plague

On Autism: Whom to Trust, and Whom to Avoid Like the Plague

Autism is a significant source of controversy. Terrible people are using this as an opportunity to scare people, take their money, and put their children in danger.

There are so many tales about how autism is caused–and how to treat it–that it can be stressful for parents just trying to make the right choices for their children.

We have an easy guide to help you distinguish the good resources on autism, from the scare-mongers and snake oil salesmen.


On Autism: Whom to Avoid

Don’t let these names fool you. These are the bad guys. They all lie to us about autism.


AutismOneAutismOne (AKA Focus For Health)

AutismOne Facebook post

AutismOne is notorious for vilifying vaccines, framing autism as a tragedy, and proposing horrific treatments for autism.

They adore Andrew Wakefield, who concocted a disgraceful “study” concluding that the MMR (measles-mumps-rubella) vaccine causes autism (it does not).

They adore Jenny McCarthy, who was successful at scaring many mothers into avoid giving the MMR vaccine to their children. Measles is back on the rise.

AutismOne conferences feature speakers such as Stephanie Seneff (who claims that aluminum and glyphosate cause autism–they do not), and Kerri Rivera (who wants you to force your kids to swallow bleach–Miracle Mineral Solution–to “cure” autism; see MMS section below).

AutismOne and Focus for Health have significant financial ties to other anti-vaccination powerhouses such as Generation Rescue and NVIC.

References

Age of AutismAge of Autism

Another group that claims that vaccines cause autism, and that autism is about the worst thing that can happen.

Age of Autism Facebook post

They breathlessly attempt to scare parents into fearing modern medicine and the CDC, while downplaying the dangers of measles.

Worse, they insist you try their special supplements to treat autism.

Then they ask for your donation.

References

Generation RescueGeneration Rescue

Generation Rescue makes the claim ”Autism is preventable and reversible.” There is no evidence for this assertion.

This group recommends an Autism Action Plan that includes a number of pointless responses to autism, including avoiding gluten, taking anti-fungal medicines, and avoiding “toxins”.

They hype Hyperbaric Oxygen Therapy as a treatment for autism–this is a money grab with no scientific support for it. They hype essential oils as a treatment for autism. They hype chelation as a treatment for autism. They give a platform on their blog and Facebook page for Jenny McCarthy, supplement hucksters, and other crackpots.

Like Focus on Health above, Generation Rescue is one hub on the network of the Dwoskin Family Foundation antivax network. Generation Rescue lies about vaccine safety, and recommends the unsupportable and dangerous “alternative vaccine schedule” concocted by Dr. Bob Sears.

CNNMoney Reports The money behind the vaccine skeptics
CNNMoney Reports The money behind the vaccine skeptics
References

Autism SpeaksAutism Speaks

Only recently, Autism Speaks reversed its stated position on vaccines. For two years prior, they claimed that there was a connection between vaccines and autism. In fact, the organization had been actively funding research with the sole intent to prove vaccines as a cause of autism (which it never could).

Autism Speaks has become fairly well-known among the general public. They really know how to get the word out about their organization. I’ve had our waitress at Joe’s Crab Shack give a pitch for Autism Speaks donations during our dinner.

Should you donate? Actual autism advocates dislike this organization; they say “Autism Speaks does not speak for me”.

They argue that Autism Speaks paints autism as a terrifying crisis–that a person with autism is barely better off than dead. That Autism Speaks is not trying to advocate for better support and opportunities of autistic people, but rather to rid the world of a population of people.

Autism Speaks’ choices for what they fund is questionable, and they don’t include anyone with autism on their board.

References

Talk About Curing AutismTalk About Curing Autism

Short and sweet: an anti-vaccination front. Jenny McCarthy was their spokesperson until 2008. They included Dr. Bob Sears among their speakers at their conference, with a plan to instruct attendees about how to decrease their next baby’s risk.

Dr. Nancy Hara will be speaking on:

…how germ overgrowth, GI inflammation, constipation and GERD can trigger aggressive behavior. Dr. O’Hara will discuss the diagnosis and treatment of yeast, bacteria, parasites and Lyme disease. Interventions to be covered include nutrition, nutrients, helminth therapy, HBOT and other immunotherapies.

Another will promote “Methylation Testing and Treatment”. Oh, there’s more. Alternative medicine fraud after fraud. Cash grab after cash grab.

Resources

MMS Kerri RiveraAny Proponent of CD and MMS

The use of chlorine dioxide (CD) and Miracle Mineral Solution (MMS) to treat autism is child abuse.

The marketing for MMS states that autism is caused by microorganisms that need to be killed. The instructions for MMS tell parents to mix it with citric acid. This results in a dangerous bleaching agent–the water-soluble gas chlorine dioxide. Then parents ask their kids to gulp it down. Or worse, it is to be introduced into the young body via enema. This causes severe damage to a child’s digestive tract.

MMS huckster Louis Daniel Smith was recently convicted of numerous federal crimes in relation to his business selling the stuff.

Another big voice for MMS was Kerri Rivera, who has now moved onto another woo treatment based on a completely different made-up autism cause. The State of Illinois made her stop making claims about the efficacy of–and peddling–chlorine dioxide.

Since then, many Facebook pages and websites that promoted MMS have been deleted or gone silent, but there are still a few groups around. We hope to get more shut down.

Resources

Moms Across AmericaMoms Across America

For a breath of bad air of another kind, Moms Across America founder Zen Honeycutt claims that autism is caused by genetically modified organisms (GMO) and the herbicide Glyphosate. Zen fears GMOs so much she’s grasping at the latest headline-grabber: autism anxiety. Zen’s waving around an article by Stephanie Seneff, a computer scientist at MIT who doesn’t know how to science.

Unfortunately, a few people are believing these ladies rather than arching a dubious eyebrow.

References

Billy deMoss

Billy thinks chiropractic treatment cures autism after vaccines cause it.

Bill DeMoss claims chiropractic cures autism


Sherri Tenpenny

A rabid anti-vaxxer, Sherri shamelessly foists any vaccine and autism myth she finds onto her Facebook page.

Sherri Tenpenny thinks vaccines cause autism


Thinking Mom’s Revolution

Thinking Mom’s Revolution

They say, “Autism is a tragedy that is showing up in households across America and around the world.” Their banner ads pimp alt med treatments that do nothing to help autistic people: IonCleanse, “gut health” elixirs, and iHerb supplements.


Autism Research Institute, and Defeat Autism Now (DAN)

Autism Research Institute FAQ

ARI and its brainchild DAN promote alternative treatments for autism that have been discredited by autism researchers. One of the worst is chelation, a potentially dangerous treatment that rests on the false premise that heavy metals in the body cause autism.

References

Anti-Vax Celebrities

Some of the more vocal celebrities on the topic of vaccines use autism like a terrifying bogeyman.

Jim Carrey Twitter tweet antivax autism
Donald Trump Twitter tweet antivax autism

  • Jim Carrey
  • Jenny McCarthy
  • Jenna Elfman
  • Alicia Silverstone
  • Charlie Sheen
  • Rob Schneider
  • Kirstie Alley
  • Selma Blair
  • Juliette Lewis
  • Esai Morales
  • Holly Robinson Peete
  • Kristin Cavallari
  • Mayim Bialik
  • Billy Corgan
  • Tisha Campbell-Martin
  • Toni Braxton
  • Robert Rodriguez
  • Robert Kennedy Jr.
  • Donald Trump
  • Erin Brockovich
  • Bill Maher
References

On Autism: Whom to Trust

You can count on these people to give you the facts.


Thinking Person’s Guide to Autism

This group is a true source of advocacy for people with autism. They have a book full of evidence-based information from 54 contributors. They bust autism myths left and right.

Website | Facebook


Autism Self-Advocacy Network

“The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens.”

Website | Facebook


Amythest Schaber

“I’m a writer, artist, public speaker, and Autistic advocate. I blog about Autism, disability, social justice, and living a neuroatypical life.”

Tumblr | Facebook | YouTube


ANCA: Autistic Network for Community Achievement

“ANCA focuses on ‘how’ the autistic mind processes information, or what ANCA terms ‘The Autistic Paradigm – from the inside out’–a mental/cognitive processing map that is unique and distinct to all autistic people–children, teens and adults.”

Website | Facebook


Life as a Feral Autistic

“I have decided to name my vlog Life As a Feral Autistic (LAFA) because I was homeschooled since 1st grade, never received any kind of autism therapy and was not diagnosed until I was 24 years old.

“I am naturally Autistic like a Mustang is naturally a horse.”

Website | Facebook | YouTube


Debunking ASD & ADHD Myths and Misinformation

“Detecting and exposing BS treatments and products marketed to parents with ADHD & ASD children. Promoting science, evidence, compassion and understanding.”

Facebook


Left Brain Right Brain

“Providing autism news, science and opinion since 2003.”

Website | Facebook


Natural Variation – Autism Blog

“This is an anti-quackery and pro-neurodiversity blog. Most posts here have to do with the author’s view that autism is not a new man-made phenomenon, but instead a natural part of our species that has always been with us, and should continue to be. Reasonable corrections and rebuttals are welcome and encouraged.”

Website


Autism Women’s Network

“Our goal is to dispel stereotypes and misinformation which perpetuate unnecessary fears surrounding an autism diagnosis. We seek to share information which works to build acceptance and understanding of disability.”

Website | Facebook


Parenting Autistic Children with Love and Acceptance

“A community for parents of Autistic children who choose to love and accept their Autistic children. A place to learn from the writing of Autistic adults. A place where parents can discuss supporting and accommodating Autistic children.”

Note from a commenter: Information provided at PACLA might be overwhelming for new parents.

Website | Facebook


Further Resources


Acknowledgments

The following friends helped me to collect and organize this guide.

Alison Bernstein of
Mommy, PhD at
fb.com/MommyPhD

Martin Fike II of
We Love GMOs and Vaccines at
fb.com/welovegv  and welovegv.com

Stewart Thorpe of
Pro-Vaccine Shills for Big Pharma, the Illumanati, Reptilians, and the NWO at
fb.com/provaccineshills

Katherine Elizabeth Hall of
Life as A Feral Autistic at
fb.com/feralautisticlife

This truly is a work in progress. I’ll be enhancing and updating this guide as new information is available. – Dawn

By Dawn Pedersen

Science advocate, web designer, educator, artist, and mommy.

115 replies on “On Autism: Whom to Trust, and Whom to Avoid Like the Plague”

You don’t need to post this, but since this is such a great list, and I will be recommending it to lots of people, I thought you might want to be aware of typos.

Under Thinking Person’s Guide to Autism: “The bust autism myths left and right.” I think you might mean “They”.

Great article!

Terrific list, but I have to warn about Parenting Autistic Children with Love and Acceptance; they often post great things but sometimes it can be a bit much for a parent still new to parenting an autistic child. They tend to focus on negative things or mistakes that parents have made, and will be very snarky and gang up on anyone who asks a question if it’s not in line with their thinking. I had referred a friend to that page and she called me bawling because she was at the brink of despair after interacting with some of the moderators there in a thread. I think they need to take some cues from TPGA in how they treat people, parents especially.

Parenting Autistic Children with Love & Acceptance does not “gang up” on new parents. It is an intentional community and we aim to keep it an Autistic friendly space, so a lot of things such as pathologizing language and dismissing Autistic voices are not allowed. Many of our moderators are Autistic and we do not apologize for their communication style.

Most spaces cater to the feelings of parents and not the actual humanity of Autistic people. At PACLA, that is simply not tolerated. We are also an activist page and are invested in disability rights and social justice. We do not focus on “negative things”, we discuss things that impact Autistic adults and children. We point out negative things that ableism does to harm our community and try to bring them to light.

Lei, I stand by my statement as an autistic person and a parent of autistic children. I appreciate your page and I do agree that you have an important focus that many parent pages don’t. I still stand by what I said above. Take it and consider it or leave it.

We are a page for parents to learn, not to support every feeling they have about their inability to understand or accept disability. We are explicit in saying that too.

Funny you say that, since TPGA bans autistic people for disagreeing with parents who bully them when they don’t like what autistic people have to say when advocating for themselves and their peers.

TPGA also regularly bans parents who say things they don’t like. One is only allowed to think in a certain way in the Thinking Guide To Autism. Which is kinda ironic given how vastly wide the spectrum is.

PACLA is an intentional community and Autistic safe space ran by mainly Autistic adults (TPGA is not an Autistic safe space) Our goal is not to cater to parents despite the use of the word “parenting” in the title (but, many of us are actually parents too). The intentions of our community are to give a space where Autistic people can safely exist with parents and give them insight/ advice. We are also a Autistic rights community, not a support community. (technically we are a intersectional social justice space) There are so many spaces that are for parents and not a lot that are for Autistic people. Many of us find spaces just for parents very hostile. And yes, PACLA is not for everyone, especially those who are new or are not ready to put aside their feelings.

We do correct people when they are wrong and we do call out what practices are abusive to us… and I can imagine it hurts a lot of feelings when something a parent has done could be harming their child, especially when the intentions were to help.

This is not ganging up on anyone though.

Most of our Autistic moderators have been abused and have PTSD from various practices parents try to defend to us every day in our space. Can you imagine how exhausting that can be? … So why would we continue to subject ourselves to that? Because we care, a whole lot. We want to prevent the traumas that have been done to us from happening to other Autistic people.

I hope parents don’t dismiss the possibility that a gluten and/or casein-free diet might help their autistic children, in the name of being “science-based”.

Experimental studies on the use of a GFD, CFD, or combinatorial
GFCF diet for ASCs have suggested an amelioration of symptoms
and improved developmental outcome for at least a proportion of
people on the autistic spectrum

from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3540005/pdf/fnhum-06-00344.pdf

Yes, if they have celiac disease it does. It they don’t then there is no reason and no peer reviewed research that it actually “helps”. In fact we are now seeing reports of children with deficiencies because they were on a CF/GF diet and were Not suffering from celiac disease.

While this is a great article, I disagree with your choice of image. I am autistic: I am 53. I am so tired of articles about autism being a “childhood condition” or a “parenting issue” that I didn’t click on this link for a long time. Using images of children on an article about autism perpetuates the stereotype that we are not adults, that we need looking after, that we need to be spoken for. Please reconsider this.

Perhaps you should say that right up front. I agree with her. I am an older person who was recently diagnosed with a lifetime of PTSD that has created quite a conundrum for me to navigate. I have very awful, terrible, mixed up days and weeks. I spent most of my life trying to mask the condition and failed when I moved into a rural intolerant culture. There is a Japanese proverb: “The nail that sticks out gets hammered.” There are issues that are very adult (sex and relationships, for example) and very important as well.

Great list! The only one that surprised me a little was the Autism Research Institute. However, as I think a little harder, I can certainly see why they’d be questionable, though maybe not an “avoid like the plague” organization like some of the more wacky ones listed here are. When my child was diagnosed, ARI was pretty much the only group in town, other than the Autism Society of America. The founder, Bernard Rimland, had aggressively challenged the “refrigerator hypothesis”. He also had developed a form, I think it was either the E-2 or E-3, that would gauge the likelihood of your child being diagnosed as autistic. It seemed they started out very scientifically. As I think back, I remember that they were reviewing and trying to collect data on treatments to gather more than just anecdotal reports. They published the rationale behind each one to share what others were investigating. (I read each one and determined that none of them fit my child, but was appreciative of the clear descriptions.) I also remember they were very interested in a vitamin supplement with megadoses of certain nutrients. I wondered then how a child’s kidneys would hold up to that supplement over time. All that to say, I saw Rimland as one who was sincerely searching for the truth, even though I did have concerns. I just did a quick search of their website, and they do at least have a warning up regarding chlorine dioxide. They also have an employment course for young people with ASD. For me, whose autistic child is now college age, that is really encouraging to see. A service geared toward an actually autistic adult! All that to say, I do still see the concern, but there is some good there. Unlike Autism Speaks, who only funds scholarships for the study of autism rather than for those who are actually autistic, it seems that ARI is more faithful in serving the autism community.

I’m sorry, whoever in the world does not think that gluten/dairy are inflammatory foods that in turn have a negative neurological effect on humans in general but even more so on Autistic people are in denial and not looking at the evidence. Not only that but using supplements can have a TREMENDOUS positive affect with behavioral issues. Kids are deficient in general but take a super picky autistic childs eating habits and they’re even more so vitamin deficient…..healthy kids have healthier minds. So, to not encourage a healthy more natural/less inflammatory diet is doing an injustice to the autistic community. My 3 year old is autistic and I have seen LEEPS and bounds improvement with his overall happiness with these diet changes. I love him just the way he is….I am NOT trying to make him look less autistic. I am trying to make my little guy comfortable and as happy and functional as possible. So the part that gluten and casein does not have a negative affect on them is not true! Maybe it doesn’t work for every kid/person and it certainly doesn’t “cure” autism but it absolutely eases some of the undesirable (for my son) symptoms. I could go on and on. I guess you’re also saying that refined sugar, chemicals in our food, dyes and gmos don’t make things worse……asinine!

All our foods are made of chemicals. Refined sugar breaks down into glucose in our digestive system like any other carbohydrate. There is nothing wrong and everything right about genetically modified foods.

Do you have a plausible explanation for how nutrients can travel backwards in time, to reverse differences in cognitive development in the womb?

You are promoting the very nonscientific explanations I am decrying. You’re promoting ideas that are victim-blaming, and without evidentiary merit or plausible mechanism.

Dawn, wow. Here we have a mom with actual, first hand experience, telling you that the GFCF diet helps her son, as it has been known to help thousands of other kiddos with autism and you are pretty much calling her a “liar”. Here’s some advice, Dawn. Go get some first hand experience….all in the name of “science,” of course….

Spot on. Inflammation is being linked to all kinds of neurological issues, including depression and anxiety, as well as ASD. The information and studies are just coming in, but I share the belief that decreasing inflammation and irritating foods can make a huge difference. My MD has an autistic son and claims that when she took all food dyes (particularly red food dye) out of his diet, his painful behaviors and problems decreased dramatically.

And, if I may, a book that deals with ways to support that I found very compassionate and insightful is: Autistic Nation by Iris Maye, MA, available on Kindle.

Otherwise known as, anecdotal evidence. Go get some basic training in science. No air quotes needed here, when referencing actual science. “

Is this a joke? Did I read that right? There’s nothing wrong with GENETICALLY MODIFIED FOOD?
Im speaking first hand from experience with my 3 year old son. The changes I’ve seen in him are undeniable!!!! I do my own research and at the end of the day that’s all that matters to me. I know what’s right in my heart and what I see in front of my very own eyes.

Carmen, the problem is that you are taking YOUR experience and expecting that it be applied to everyone because of an out of context quote from a study at the National Institute of Health, rather than saying something like “GFCF did wind up working for me because blah and we did foo, and did this and this and thusandsuch in addition. I realize I may be a unique case, but it may be worth closer study rather than just dismissing out of hand.”

Your gross overreaction is pretty much like that of the parent who belittled my own experience as an autist, and said that orgs like Autism Speaks were a great resource for autistic people–why? Because AS bought her nonverbal child an iPad.

Your GFCF experience is being wielded against us like that iPad. If you refuse to understand that, and if you refuse to understand that your language and your reaction to criticism are being perceived as attacking and belittling those of us who directly and indirectly suffer at the hands of quacks who preach GFCF and other such things as “miracle cures for teh autizmz!!!1”, then I really don’t know what to say other than that I feel sorry for your child–because gods only know how you’re really treating him.

Carmen, you are the type that scared me when my son was diagnosed. He’s made leaps and bounds without all your b.s..

Great! Fantastic. WHAT is bs about changin my sons diet and seeing positive results????? Whatever you’re doing that has worked for your son…that’s great! It’s not like I’m pushing some weird ass drug or strange therapy. IM TALKING ABOUT A HEALTHY DIET????!!!! What’s so wrong about that??????? You’re obviously an angry person.

Carmen, I’m so glad you’ve spoken some sense. I’m just an interested bystander here but I do know that there’s not much that can’t be fixed by diet. I was getting quite alarmed at all the uninformed denial I was reading! Carry on doing whatever so-called BS works for your son and keep on speaking up about it. Good luck!

Anecdotal, but if you are seeing positive results (and I assume those results are positive for your son as well; kids with challenges need to be understood just as much as they need positive results) then great. No one is taking that from you.

What an incredibly disappointing article. Many parents navigating autism with their children know that different things work for different children, I have tried a number of things you consider controversial with great success. I researched thoroughly and knew what to look for and what questions to ask based on my own research. Unless you have a child with and have undertaken each and every therapy/treatment you deem dangerous or without merit you are not experienced to comment. Perhaps you just don’t know the right questions to ask. I hate to think that parents don’t undertake their own research based on your very limited view.

And I ask myself why it’s ok for people to accept experimental and often harmful “therapies” on autistic children and adults that they would NEVER allow to be done to their neurotypical children and adults?! As a parent, when my now teenager was diagnosed I educated myself with peer reviewed research not antidotal “evidence”, and I educated myself on Autism. It is a neurodevelopmental “condition” meaning the brain “operates” differently. Different does not mean less than or worthy of crack-pot “cures”..
I defer to my friends, adults on the autism spectrum who say ” nothing about us, without us”.
And again please ask yourself if you would allow any of these so called “therapies” if your child was not on the autism spectrum. If the child does not have celiac, CF/GF is useless and depreciates the body of much needed nutrients the child needs to grow.
GM foods have been proven scientifically safe again and again so there really is no reason to avoid them other than your choice. That is your right. But you cannot expect others to follow your opinions, especially if they are not based in real science.

I think your list is a helpful tool. There are a couple of sites you may have overlooked IMHO.

https://www.ianresearch.org/ I good place for current research and information. As far as I can tell they are not interested in selling anything. Or have a predetermined agenda.

http://wrongplanet.net/forums/ While I have not visited for awhile. This is a forum founded and run by people on the spectrum. Not the most parent friendly. But it’s not because they dislike parents. It’s just “A little” problematic to read because people on the spectrum write and post at times (having a hard time describing it) more literal with less emphasis on empathy. I find them very helpful because my daughter is Non-verbal and some of the members can shed a little light (I Hope) on what seems to be an endless string of mysteries.

Thanks for the post

Dawn, have you heard of the Senior Researcher at the CDC named, William Thompson? Or, the address that was heard given by Representative Posey on C-Span about a week ago??? The reason there are SO many of these autism groups that believe vaccines and GMO’s contribute to autism is because they do. Thousands of parents have witnessed it first hand. THOUSANDS. There isn’t anything in your “blog” that will actually benefit the autism community. You are actually doing a disservice. What exactly is your experience with raising and recovering an autistic child? Let me guess? You’ve never done it, so it can’t be done? If your child had cancer, would you sit back and watch them suffer? Or, try and heal them? Autism is physically painful. Were you even aware of that? No parent in their right mind will sit back and “accept” a child suffering pain. My son is who he is because of his heart, his kindness, his sense of humor, his perseverance, his love of life, his desire to learn, his adoration of his sister…all these things and more are part of who he is. Autism is an injury he suffered. One that he heals from a bit more everyday!

“The reason there are SO many of these autism groups that believe vaccines and GMO’s contribute to autism is because they do.”

Assertions offered without evidence may summarily dismissed without evidence. Note that “personal anecdotes” are not evidence, sorry. We’re talking about FALSIFIABLE evidence.

Wow, these lists and the outlandish accusations are shocking. I am disappointed to see TACA (among others) on a list of “whom to avoid like the plague.” This organisation has helped my family and my son tremendously. Saying its cash grab after cash grab is a major allegation, does the author of this post have any explanation to back that up? I sincerely hope that a parent looking for guidance on how to help their child doesn’t read this and feel discouraged to seek help from a supportive group like TACA.

Wow TACA? Talk About CURING Autism?!?

There is no cure for autism it is a developmental “condition”. You can not “cure” a Brain that just thinks differently.

Thanks for the awesome list of resources in your opening. I am always looking for more stones to turn over. There is no one answer to autism.

note there is little to no info or guidance directed to ASD teens!! I was sold the early intervention dream and got a shock when my child hit puberty and secondary school. My point autisim can not be cured – social skills and language can be improved but ASD thinking , executive functioning, ridgidity and melt downs/ shutdowns are still a factor. parents of older kids and adults with ASD deserve to be supported and told the truth. Just because kids can eventually play “nicely” in the play ground does not mean Autisim characteristics are banished for the rest of the persons life . Where is the info for 16 plus group after the years of early intervention are finished???

Why are you low functioning autistic reteards writing a irrelevant blog for no reason. Shouldn’t you’re parents or caregivers be supporting for autism speaks and they will invest you guys a brain implants, so you guys will be cured and no longer be retarded. As for you high functioning autistic activist , stop attacking autism speaks when they achieved more than you and they have the money to buy you guys some aids to help you guys be independent, instead of whining about why don’t you guys have a JOB OR MONEY. Why don’t you guy work for autism speaks and MAKE SOME IMPROVEMENTS. Stop making up false allegations or else your parent wish the low functioning autistic were never born, cuz you’re lives are worthless and you guys are less than a human. If you guys delete it, I’m calling the cops and they will arrest all of the autistic activist and I’m telling Facebook to close your boycott autism speaks and other autistic self advocates page DOWN.

P.s I support autism speaks they are the one who cares for autism speaks and seek cure for my son. YOU MENTALLY DISABLED PEICE OF SHIT!

Sincerely, mom who has a autistic son.

Given the amount of venom you’re spewing in that one post, it’s pretty clear that you don’t save your ableist rage for simple trolling on the blog of an autistic adult. I sincerely hope that CPS takes your child away from you ASAP and places him with a family that will actually treat him as a human being, rather than as an unwanted burden that needs to die.

I debated whether or not to publish your comment, Unknown. I decided to let everyone see what kind of people we are up against. Even in an era when we are learning heaps about autism–and recognizing the value of every individual in a neurodiverse world–there are scumbags like you who are full of rage and hatred for human beings.

There’s nothing to be gained from investing time and resources into an organization that has done more damage than good. Not when there are plenty of smart and loving organizations out there, based upon research and true compassion.

Dawn, thank you.

As an autistic adult, I see people write crap like this all the time, and it enrages me. If the vision I have of an Autism Civil Rights Act came to pass, people who write crap like that would not merely have their children taken from them and put in the hands of people who will not abuse said children. They would be executed. Because the amount of suffering they have wrought upon myself and others like me is such that I will never know a day without the pain that they have caused me. Human overpopulation is a very real thing, and ridding the planet of spoiled, self-entitled brats who want to be able to hurt other people solely because of the characteristics those other people were born with is a good start towards fixing that problem.

I do not think we need to see what we are up against. Hate speech is hate speech and should not be on your page IMHO

Actually respectfully as upsetting as it was to read that, I believe it should remain. Many do not understand the venom spewed at the autistic community. I say highlight the ignorance and hate showing it for exactly what it is.

As an Autistic adult, I think I should inform you that the problem with GMO’s has to do with power and money in agriculture. They haven’t been promoted in Africa, for instance, because there’s no money there. Dietary treatments may work even if the evidence is anecdotal. It may be due, in part, to steering away from autistic cravings. I’d also say that PACLA trends towards the PC whiner category. I’ve definitely seen some material that is: “Autistics are special people who must be allowed to be themselves and act out all they want.” This about people with disabilities who spoil it for the rest of us. Of course, those of us who are in the know understand that we actually don’t have a disability. You people have the disability!

The comments on this article have devolved into “atrocious.” Especially the ableist shithead “The unknown.” Where is the writer/moderator??

Autistic people are people, who happen to have a differing neurology to most of yours. It is not a tragedy. It is not a burden. It is not a nightmare. It is not something that requires a cure. What requires a cure is the ableism and ignorance of society, and the limitations placed upon those of us who don’t think or act in the “normal” way. If you see your child as something to be fixed, you need to give them up. Too many of us have died because of thinking like that.

Anyone here who listens to neurotypical people as the primary experts on autistic life is misinformed at best, and actively bigoted at worst. Would you take the word of a white person as gospel truth about the black experience? No. (If you would, you’re a racist as well as an ableist.) Listen to the people who are autistic, because we see what you don’t. I find it repulsive how often I have to explain this to your type, commenters.

This list is a good one, though I would caution against TPGA if you are autistic; they don’t like it when you disagree with their parent moderators. Though, frankly, I’m sick and tired of having to cater to parent feelings. It’s parents who treat us like subhuman shit and murder us. Almost 80 autistics have died in the last five years at the hands of their parents and caregivers – and every single time, it’s justified and rationalized by parents. Don’t waste your time yelling at me; go google London McCabe. Robert Robinson. Nicholas Richett. Daniel Corby. When we die, it’s autism parents first in line to rationalize and explain it away.

So parents, shut the fuck up and listen. Your feelings are not what matters here. What matters is the right of autistic people to dignity, humanity and respect. If you don’t like that or you can’t give that, surrender your children to people who can. Maybe fewer of us will die that way.

If you “couldn’t have said it better,” then please honor the intent of my words and remove the hateful, ableist, bigoted comments from “The unknown.” Using the R word is ableist. Insinuating we aren’t “really autistic” is ableist. There is a difference between allowing differing opinions to be aired and allowing hateful ad hominem attacks to stand.

Please do not delete them. People like these should be named, shamed, and outed. I desire a law that enables us to track them down, tell their employers what they have said, tell their neighbours what they have said, and in extreme cases just shoot them and call it self-defense.

There will one day be an Autism Civil Rights law, and people who spew the curebie rhetoric will be made to understand how much pain they have caused.

no, those words are trauma inducing and increase fear for those who have been attacked. it would be like publishing a rape or death threat and leaving it so people can see how bad someone is. doesn’t need to be here.

It’s really disappointing that you are so against the parental voice. Yes, their feelings DO matter. How our children will see themselves are formed primarily by their parents. Not all of us “hate” our children, but you also should realize that sometimes caring for a disabled individual is hard. If you are on the “low” end of the Spectrum, and require almost full time care, yes that is hard on people. It’s the same as any person caring for another person who requires a lot of care. Acknowledging the difficulty of that is not the same as “hating” their children.

Caring for people full-time can be very hard on the care-giver. Parents of autistic kids often need and always deserve support. But nobody should have to feel like a burden. And while parents have the right to make decisions about how to raise their kids (provided they’re not abusive!), I think it’s important to recognize that the only true experts on growing up with autism are those who have done it. The specific challenges may vary but some of the most important ones (the right to and fight for respect and privacy, etc.) are universal.

Thank you for this post, Dawn. Hopefully you’re not letting the trolls get down. Ignorance is sad and harmful, but ‘the good fight” is always worth fighting. Gradually progress will be made, person by person, interaction by interaction.

Agreed–it’s sad that the anti-vaxxers have shown up along with ableists like Carmen (who has outed herself as an AVer with her reply to an AVer above). But we will overcome their ableism and hatred, because it’s what a lot of us have become really damned proficient at doing.

Hi, I know it’s a nit-picky comment but the title should be “Who to Trust” not “Whom”. The latter word is only used with indirect objects such as in “to whom it may concern”. I know it’s nothing compared to this issue but errors are particularly noticeable in headlines. This is not for posting, just to help improve the site.

Anyone that uses David Gorski as a reference is a complete idiot. Vaccines can, have and do cause autism. There are 22 peer reviewed scientific papers that prove it.
http://www.activistpost.com/2013/09/22-medical-studies-that-show-vaccines.html
Vaccines can, have and do cause harm. If they did not, then the VICP would not have paid out 3.18 billion dollars to vaccine injured kids.
It is not alright for you to impose your “greater good” mentality onto others. It is never alright for a parent to expect another parent to adopt a medical procedure that carries risk for the safety of another’s child. Not OK. Never was, never will be and currently is not OK, got it? What is it about you people that wants to force everyone to get vaccinated, huh?

The original study that tied vaccines to autism had an experimental group of less than 15 people. For a generalization like that, the group should have been in the thousands. The journal that published the study withdrew the paper and said it never should have been published in the first place. I can’t speak for the other studies but it wouldn’t surprise me if there were similar issues at play. And as for why kids need to be vaccinated – many children and adults have autoimmune diseases and can’t be vaccinated at all. Being around non-vaccinated children puts their lives at risk. I don’t intend to be disrespectful but you should know that the decision not to vaccinate affects more than just your kid.

== The Science ==

Here is a list of 5 of the more than 20 reputable studies that have found no relationship between MMR vaccine and autism. These studies were selected because they illustrate the variety of methods that have been used to investigate whether MMR vaccine is linked to autism.

Lack of Association between Measles Virus Vaccine and Autism with Enteropathy: A Case-Control Study by Mady Hornig et al. PLoS ONE. September 2008. Vol 3: page e3140.
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0003140
.
Age at First Measles-Mumps-Rubella Vaccination in Children with Autism and School-Matched Control Subjects:
A Population-Based Study in Metropolitan Atlanta by Frank DeStefano et al. Pediatrics . February 2004. Vol 113: pages 259-266.
http://pediatrics.aappublications.org/cgi/reprint/113/2/259
.
Immunization Safety Review: Vaccines and Autism. Institute of Medicine. The National Academies Press: 2004.
http://www.iom.edu/?id=20155&redirect=0
.
A Population-Based Study of Measles, Mumps and Rubella Vaccination and Autism by Kreesten Meldgaard Madsen et al. New England Journal of Medicine. November 7, 2002. Vol 347: pages 1477-1482.
http://content.nejm.org/cgi/reprint/347/19/1477.pdf
.
Autism and Measles, Mumps, and Rubella Vaccine: No Epidemiological Evidence for a Causal Association by Brent Taylor et al. The Lancet June 12, 1999. Vol 353: pages 2026-2029.
http://www.freenetpages.co.uk/hp/gingernut/lancet/Brent%20Taylor%20June%201999.pdf

hi , thank you for all the information posted above.

i would like to ask however why everyone seems so angrivated at a number of oppions stated by others in the comment section. Everyone views things differently and everyone has another oppion , when has this not be the case . whether or not somone agrees with anothers oppion isnt the point of this. this is a collection of sites , to do with as we wish. in the end if we agree differently we dont have to use the information presented. thank you once again. have a good day.

Our children are in foster care right now.they are transitioning them back to our care..once our house is up to code. I requested at the permanancy hearing that my children(3 out of 4) be seen at the child study center. 1 child had been diagnosed autistic. Two others recently diagnosed with autism and adhd. Our 5 yr old daughter has been put on adderol and the other 2 are about to be medicated. The supervisor over my caseworker waved away my request and our court app. attorney said nothing during the entire meeting. They claim never to have heard of The Child Study Center and they have made the decision that the children will be taken to Autism Speaks instead. We dont know what to do and really need to spend the money repairing our home instead of finding a decent attorney. Anyway..this article has me concerned since evidently we wont have a choice in the matter.

I don’t trust anyone in autism. Sorry. I certainly don’t trust the celebrity experts. I don’t trust a money grubbing organization like autism speaks. But sorry if I also don’t trust some of the of the organization’s you recommend. They present autism as one thing. All autistic people must fall in line and think as they do. Yes, their information is medically correct. But gawd forbid you might have another opinion. You must step away from the popular table of the autistic community. I’m a true divergent thinker and I don’t follow.

Great article, well-researched and very informative. Just one little point of criticism: you list Mayim Bialik among the anti-vaccine celebrities, yet I remember reading that she said the rumours that she was an anti-vaxer were false, and that her own children were vaccinated. If my information is correct and Ms Bialik is indeed not anti-vaccine, could you please remove her name from the list?

Thanks, now I see her statements from the past which are definitely problematic.
It is possible that she has since changed her ways, but maybe she is only trying to avoid the “anti-vaxer” label; Jenny McCarthy herself has been using that tactic, saying she is not anti-vaccine when she clearly is.
As a trained scientist, Mayim Bialik should really know better though; it’s always disappointing to see a smart and well-informed person fall for the dangerous nonsense that is anti-vaccine propaganda.

Great article, and a concept that we need to see more of in the web-sphere. But I just want to point out one very serious issue with it. At least once, you have called us “people with autism”. Do not.

Separationist language is not a matter of preference, and it is not okay. Even if it did not set off my PTSD symptoms to an extent similar to Tom Hardy’s performance at the beginning of Mad Max: Fury Road (“you let us die!”), there is a much more pragmatic reason why inclusionist language is right, separationist language (“…with autism”) is wrong.

Imagine a world where an autistic person is understood to be autistic, having been autistic since birth, and autistic is just a descriptor like male, medium height, white, heavy build, to name some descriptors used with me. What do you imagine would happen to the ilk of Jim Carrey, Autism Speaks FNA, or anyone who thinks like them? Would people even stop to consider what they have to say? Or simply write them off as bigots, no different to the racist or sexist? This is a serious but rhetoric question. I know the answer. ASFNA would have no leg to stand on.

I have a big scar in the right side of my face where a large skin cancer was removed at the grand old age of 23. I have had diabetes for 28 years as of this July. When you call me “person with autism”, you are effectively communicating to me that you think of my near non-existent olfactory centre and amygdalae or oversized linguistic centre, my brain, in the same way you think of diabetes or cancer. This is offensive, and trying to tell me otherwise only serves to make me give lie to the idea that all autistic people are geek culture stereotypes that I could break over my knee a la Bane. Now, please pardon me whilst I go sing Jello Biafra’s classic line about how your emotions make you a monster. If I ever meet him in person, we will discuss, laugh together, and he will know that he did not know the half of it when he sang that line.

As an older adult who is on the spectrum, I am continually disappointed by so many groups only looking for ‘an intervention’ or a ‘cure’ for Autism. Blah, blah, blah. That’s a waste of time for those of us out in the real world trying to exist. Why don’t all of these groups put their money into helping Autistic people to better manage their lives, their jobs, their relationships? I don’t want a cure, I want some help in building a bridge between my world and the NT world. I would like to have a better job, to make more money, to live a bit better than the existence I have right now. I don’t want a hand out, just some help.

Also, while I will admit that our current food is full of chemicals and other stuff, I think it’s a gross generalization to say that GMOs/vaccines/etc. all ’cause Autism.’ I (and a lot of other Autistic people I know) was born before GMOs and other purported Autism causes. I’ve been Autistic all my life, I didn’t ‘become Autistic.’ There are also a lot of young children today who exhibit signs of Autism BEFORE ever being vaccinated. So while all these factors might contribute to Autism, they are NOT the sole cause of it.

In conclusion: yes, many Autistic children/adults may find some sort of ‘relief’ (whatever that means to you) from changing their diet. But many may not. Parents, try it and see if it helps. But also don’t buy into all the crazy ‘miracle cures’ and treatments that are now being proposed. Bleach? Forget it! Rather, as a parent, try to find out how to work with what skills/abilities/interests that your children have, to make their lives better for THEM, not you! Unfortunately, I see a lot of parents/grand parents/family members who make a child’s Autism all about themselves, while forgetting the child. Instead advocate for better schooling, better community resources, better research into helping Autistic people who are here and now, live better lives.

F*ck the cure! I just want to live a better life.

Great list, something I wish I’d had all those years ago.

For the new parents – ANY organization that says your child can be “cured” or “recovered” is suspect for a variety of reasons. First and foremost of which is it’s a lie, and it will keep you from accepting your child. Your child will grow and mature and with therapy will have the tools to deal with life in a way they didn’t have before – but they will always be autistic.

And that’s not a bad thing.

While I mostly agree with you on some of these pages. I think there is medical research out there showing that there is a link between Autism Spectrum disorders and the use of Glyphosate on our food supply. Try looking at the following doctors Facebook page Shreenath Doctor, MD, DDS, PHD. He has articles and references about this. It is more than Autism, there are multiple disorders that have similar symptoms. Glyphosate is safe for human consumption. It’s not so good for your gut. Hence the need for probiotics and magnesium or cleanse.

As a mother of a severely autistic 14 year old I still find this list helpful even after being in the autism game for more than 12 years. I thank you for it and think you have provided a needed and valuable service.

How I feel about autism has evolved and changed over the years of parenting my child. I try not to be too hard on parents of little ones who are newly diagnosed, as they search for answers and “cures.” It’s a difficult and confusing road, especially at first when everyone from your doctor to teachers are telling you how important it is to do early intervention and therapies to “improve” your child.

It took time for me to get to a place where I can say that my son is wonderful just the way he is, no more and no less. He remains nonverbal but continues to mature and make gains in communication and self care as well as developing leisure time skills. I want for my child what every parent does, him to be happy. I accept him and embrace the person he is and regret every minute I spent mourning how I thought things were supposed to be. He is wonderful just as he is and makes me laugh and brings me joy daily. It’s not a tragedy. It is what it is and he is who he is, and that’s okay.

As an autistic, and parent, I wonder why the paaarents aren’t able to see that co-occuring conditions aren’t autism. If your child has allergies or mastocytosis, that is not autism and isn’t what we are talking about. Even a bad reaction to vaccines can happen, but that isn’t autism.
Those of us who are sick might have lots of co-occuring conditions, and treating them will decrease stress and improve our quality of life and perhaps our ability to be understood by you. That is not a cure, our autism is still very much there, and if you run around telling the world I am ‘cured’ I won’t trust you or share my truth with you, you’re perpetuating shame onto your ‘cured’ child who is just a healthier autistic person. They (I) dont want to hide this information from my parents, or makes them sad and ashamed by letting you know I am still autistic. You could even be preventing them from establishing closer relationships with their peers, you, and other autistics by this damaging rhetoric. We all deserve to feel loved and unashamed. Please don’t tell your child they are cured because you treat co-occuring conditions. Please don’t believe that we can’t have happy and fulfilling relationships and lives. No matter how ‘low’ functioning, growth happens. We progress. The more acceptance we have the more we can contribute to everyone’s lives and community. If you forget, remember that the high functioning programmer is the same low functioning self harmer at different times of the day. Dont let a momentary ‘bad’ behavior keep anyone from trying to continue the day as positive and guilt free as possible. See us as people. We will remember what you say and do later, and so will you. Don’t let either of us be ashamed of that, by being kind and real. Thank you.

i encourage parents who have a child with autism or any adult with autism to find a DAN doctor. We have and because of it we have seen some amazing positive change in our son. Keep in mind every human is different. This article is misleading. You have not turley done the research on CD or generation rescue. If you would have you would know that medical intervaetion can work. Generation Rescue was created by parents of children with Autism. The idea is to figure out why a person has Autistic Symptoms. I.e. Thryroid issues, GI issues…ec. Lab results don’t lie. These are real people trying to help and your article is discouraging and not official. we speak from personal experience (generation rescue) my wife and I would be happy to share our experience with any open minded individuals. FYI GENERATION RESCUE spent more money on us (they paid for doctor visit …ec) then we did in them. these type of post encourage us to write our own blog to share our story. Because to sit here and tell people not to trust Generation Rescue is completely misleading. It hurts to see people believe you.

This is ridiculous. You can not cure autism. It is not a disease it is a disorder. CD MMS are highly toxic solutions that will destroy your child’s or your own intestines. Please stop using and promoting this!

It hurts that people are abusing their children and encouraging others to do the same. STOP TRYING TO BLEACH THE AUTISM OUT OF YOUR CHILD.

I wish I knew exactly who you were so I could report you to CPS. You don’t deserve to have a child, you fucking abusive monster. Shaming your child for having a disorder and further physically abusing him.

Hey Dan, how exactly do bleach enemas and drinks help an autistic kid? What is the mechanism of this cure? The CD protocol says autism is caused by gut parasites, “round worms”. How come only Kerri Rivera and her acolytes say this? How would putting bleach in your colon while taking vet grade antiparasitics work? Why would the bleach kill these fictitious worms but not harm the person? Chlorine dioxide is a bleach. Unnecessary enemas is a form of sexual abide. Are you suggesting autistic kids need anal rape? Because that’s what it reads like. None of Kerri Riveras “cured” kids is publicly identified, there are no trials. No genuine medical professionals involved in Kerri Rivera’s torture program, Andreas Kalcker bought his doctorate in the philosophy of alternative medicine from a shopping mall diploma mill.

Thank you Dawn for posting this list, from a parent of a teen on the autism spectrum, professional working over 10 years with children on the spectrum and a friend to many wonderful autistic adults ( their term)

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