Doctors, Politicians, and The Thinking Moms

Every year a Living with Autism Workshop is put on near my hometown by a local magazine and health care system.   I attended this conference a few years ago and it was extremely disappointing.   There was no information on the medical treatments of autism and no information to help educate parents in treating or healing their children affected by autism.  There was one “medical” session with a psychiatrist who discussed all the different types of psychiatric drugs to put your child on. The rest of the sessions involved behavioral therapies.  The keynote speaker was Jenny McCarthy who did a great job discussing biomedical treatments and dietary intervention.   I thought to myself I will never attend this “Workshop” again. 

Fast forward to last month and guess what? I attended the Living With Autism Workshop. A girlfriend of mine invited me and said Holly Robinson Peete would be the keynote speaker and she had an available seat at her table if I would like to go.  I figured I’d go listen to Holly and see what she has to say.   

I arrived at the conference 15 minutes late. I walked in and stood in the back looking for my friend.  There was a panel of pediatric psychiatrists, pediatric neurologists, and some other medical doctors sitting on the stage.  The opening session was Hot Topics in Autism Spectrum Disorders.   The women speaking was Dr. Allen who is the Director of the New Center for Autism and Developmental Disabilities and Coordinator of Pediatric Speech and Language Services.  She is a certified Speech/Language Pathologist with 20 years experience providing evaluation diagnostic and intervention services to children with developmental communication disorders, including Autism Spectrum Disorder.   This woman’s background consists of a B.A. from the University of Michigan, an M.S. in Speech/Language Pathology from Boston University, and a Ph.D. from Wayne State University in Detroit Michigan. I list Dr. Allen’s background because it would appear she is an expert in Autism Spectrum Disorders. She is not a medical doctor, however, she spoke as if she were.   

Within the first three minutes of listening to Dr. Allen from the back of the room, I felt like I was going to hyperventilate.  She told parents, “You do not need to try all those crazy silly diets out there. They don’t work.”   She stated, “There is no scientific evidence that changing a child’s diet will help. Again the science isn’t there.”   She was laughing and implying that the diets were a big joke, and went on to say diets are a waste of time and money.  Then, she started to speak very softly and in a very convincing tone she said, “You really need to put your money into ABA (Applied Behavioral Analysis) therapy,” and she paused for a moment as if we all would be able to breathe now that she just informed us of the cure all for autism.  “According to the science that is what will help your child.” 

 Dr. Allen then went on to the next topic on her outline on the big screen: Vaccines.  She said, “I don’t think we need to discuss this. We all know that it has been proven there is no link between autism and vaccines.”  Next topic, the latest numbers put out by the CDC that 1 in 88 children are now affected by autism.  She paused, took a deep breath, and stated, “These numbers really aren’t accurate,” as if the rate was really not this high.  By this time I had spotted my friend and walked to our table.  As I greeted my friend, she handed me the Autism File Magazine with Holly Robinson Pete and her son with autism on the cover.  My friend whispered to me that I needed to hide it because the Events Coordinator of the workshop told her that because it has the word TOXIC on it they would not allow her to pass them out to people, or place them on the tables.  I thought to myself, How interesting. This is an Autism Workshop event and your Keynote Speaker is on the cover of Autism File Magazine, and because the word ‘toxic’ is on the cover, it is banned?  It would have made more sense to me if they did not want to promote the magazine because the local magazine was putting on the event. 

By now it was time for questions for the great Dr. Allen and the medical panel of experts.  A parent sitting at a nearby table asked, “I have two young children with autism, my four-year-old only sleeps four hours a night. I am exhausted and I can’t function during the day. What can I do to help him sleep?”  The great doctor said, “Maybe your child feels that he doesn’t get enough of your attention during the day, and needs more mommy time from you.  Your child probably feels that in the middle of the night is when he can have you all to himself”… WHAT?  I almost fell out of my chair.  However, her brilliance didn’t stop there. She went on to say, “Some kids just don’t need that much sleep, maybe your child only needs 4 hours of sleep a night.”  I wanted to stand up and scream at the top of my lungs, “YOU IDIOT!! How dare you tell a parent this? What four-year-old only needs four hours asleep?”  I was completely outraged.  The panel fully-loaded with doctors and neurologist just sat there and said nothing.   I thought to myself, This is exactly what our Medical Community is doing to help families and children suffering with autism: NOTHING

It was now time for the break-out sessions which consisted of:

  • Debunking the Myths About Medication Options (which would focus on medication that is evidence based, or considered common practice, by psychiatrists specializing in children with autism) 
  • The Quest for the Request: Getting Kids Talking with Applied Verbal Behavior 
  • Make Your Next IEP T-riffic with these Tips and Tools, and Trends 
  • iTherapy: Using Technology to Facilitate Communication in Children with Autism
  • Let’s Be Friends! Teaching Friendship Skills to Individuals with Autism
  • The ABC’s of ABA Therapy  

This was the same as the last conference I attended. Again, no sessions on Diets, Biomedical Treatments, Homeopathy, etc… Nothing about treating the medical conditions associated with autism: brain inflammation, gut issues, viruses, bacteria, yeast, sensory issues, etc. With all the doctors at the conference who treat children with autism, you would think they would have more sessions with this information.   

Next up as Special guest speaker was the  Lt. Governor of our State who had just signed into law a package of bills which now require health insurance companies to cover childhood ASD treatments.  The treatments covered were Applied Behavior Analysis (ABA) as well as speech and occupational therapy.   The Lt Governor told his story of his child, he talked about how his child was hitting all developmental milestones right on schedule, but overtime things started to change and his child started having issues and stopped talking.   He said it was during a committee hearing for health policy, where a nine-year-old boy testified, describing what he was like before losing his autism diagnosis, that he realized that his child has autism. He went on to talk about how this was life changing for him and his family.   He said that his wife had spoken with the parent of this little boy who testified.  They had done ABA therapy and it helped her son.  I found it interesting, because I know this little boy and his family. They did extensive biomedical treatments and dietary interventions that also helped their son, but there was no mention of that.  I thought to myself, Here is our Lt Governor, who saw what happened to his child, as so many of us have. We have our babies, they are developing normally, hitting all their milestones,  then something changes. They stop talking, are withdrawn, and, in his case, started having “embarrassing” temper tantrums, and then BAM! You get the autism diagnosis.  Of course, the Lt. Governor was also pushing the ABA therapy for treating children with autism.  He also did not mention if they did medical or dietary interventions.  I was going to ask him this question, however, he was only taking two questions.  His last statement to all us parents sitting in the audience was “Autism is a gift.”  Sorry Lt. Governor, but my child’s sickness is not a gift. 

FINALLY, the keynote speaker: Holly Robinson Pete.  As Jenny McCarthy did, Holly Robinson Pete knocked it out of the park.  Not because she is a celebrity, but because she is a mom living and raising a child with autism.  She was one of us!  I LOVED that one of her slides in her presentation was the cover of the Autism File Magazine of her and her son.  Apparently, she was not told she was not allowed to show this because of the word “TOXIC.”  Her story was touching and real.  When it was time for her to take questions from the audience, I raised my hand and asked, “Have you done any biomedical or dietary interventions for your son, and, if so, what have you done? And have any of these treatments helped him?”  She stepped back, and laughed, and said, “I have done EVERYTHING, and still do a lot.”  She went on to say how when they removed Gluten from her son’s diet, “it was huge and life changing for him.”  I looked around for the idiot Dr. Allen who told parents not to try the diets to see if she was taking notes.  Holly also went on to explain the biomedical, homeopathy, HBOT, and other treatments that have helped her son.  She went on to talk about how her son had major sleep issues and she treated him with Melatonin and it worked.  She said her son sometimes still has sleep issues and he will ask her to give him Melatonin.  Again, where was that crazy Dr. Allen who said, “Some kids just don’t need that much sleep.”  Holly’s message to parents was to never give up, there is help out there for our children. 

This conference sums up what happens on a daily basis in the World of Autism: A therapist, who has no clue what autism is. (She looks at Autism as a behavioral disability, not a medical one.)    Doctors, who have no idea how to medically treat autism (and, from this panel of doctors, I would say they don’t seem to care).  A politician, misleading the public. (I would bet his child was vaccine-injured, and he is doing all the medical treatments for his own child, but would not dare discuss it to help others, for fear of losing his political career if he speaks out.)   Finally, a mom, who instead of mourning the diagnosis or accepting that “autism is a gift,” takes charge of her child and fights to save him/her.  Even when people think she is crazy, she does her own research and educates herself about her child’s medical condition.  A mom finds the best doctors and treatments, and never gives up.  

As the conference ended, I approached the mom of the child who does not sleep and asked her if she has ever been to the AutismOne conference in Chicago. She had never heard of it.  As I started giving her all the information, other moms standing nearby overheard us talking and joined our conversation.  I told them this is the conference you need to attend.  It has the top doctors, and presentations that cover every aspect of autism and much more, not just ABA.   

Last weekend I attended the Autism One conference and what a HUGE difference. This was a 5 day conference with over 100 presentations. The presentations ranged from how children end up with the autism label, to the many different interventions and medical treatments which can help children with autism significantly improve or recover. Plus, the added bonus to attending this conference is getting to see all my Thinking Mom friends and meeting new friends. I truly had one of the best times of my life last weekend and I want to thank each and everyone of you. I will definitely be going back to Autism One next year. As for the Living With Autism Workshop, count me out!


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25 Responses to Doctors, Politicians, and The Thinking Moms

  1. Pingback: Doctors, Politicians, and The Thinking Moms | The Thinking Moms … | Autistic Information

  2. Beverly says:

    Thank you for being a thinking mom and not one of the blind followers. I love reading your thoughts, wisdom and intelligent commentary. I recently went into a blog site of pro vaccine advocates to speak my mind about the dangers of vaccines and was shot down, belittled and harrassed. If you are up for a fight of words, log on to

  3. Kim says:

    I can’t believe how ignorant these “professionals” that we turn to to help us and give us advice can be!! Way to speak up :). I must also say though alot of you are frowning upon meds and saying how bad they are well I have a 5yr old Autistic son who IS on meds and it’s by the grace of god he is otherwise neither him nor I would be able to fully function through the obstacles of day to day life! It’s not a cure but it does help manage behaviors and mood swings and has been amazing for us along with every other part of his treatment plan.

    • Snap says:

      Hi Kim, I am not against meds. I believe there is a need for them, I just don’t think they are the solution in every situation. You know what is best for you and your child. Thanks for your comment

  4. Peripty says:

    Oh you must have the patience of an autism mom to endure those conferences. Thank you for sticking around and sharing the message of hope and recovery with those moms who wouldn’t have heard it otherwise!

  5. Tiffany says:

    Thank you for posting this…and for educating people you cross paths with. Autism is a physiological-biochemical issue-stacked on top of genetics…it’s beyond horrifying that a doctor would say that diet (or any biomedical protocols) won’t do anything…oh, wait, she probably took a *whole* semester of nutrition in her education. For the LOVE of God, people…when will we finally require that doctors actually have to learn about the way food affects our biochemistry? AND how medications often cause further imbalances in the body. That doctor’s completely ignorant statements are such a great example of how allopathic medicine looks at our bodies…with complete disregard for our body’s filtration systems, cellular function or building blocks of health.

    My son has the physiological-biochemical markers of many children with autism and mitochondrial challenges, without the neurological signs. Our doctors believe if we had vaccinated, or had additional chemical assaults on his system, we would have added neurological symptoms to his already very difficult constitutional challenges. It’s taking us SO long to find doctors who have any idea what’s going on with him…and now we are working with biomedical protocols with doctors familiar with similar labs-those working with mito and autism.

    I’ve officially, completely lost my patience and my filter. It is our obligation to call these people on the carpet. In my search to HIRE a doctor to work with us, I am plainly asking them challenging questions about the way they are in their practice, and telling them about our journey. I am polite, but VERY clear that we know what is best for our son and I am only looking for a team of people who will ADD their knowledge to help us make decisions, NOT for someone to tell us what to do with no education about the situation.

    THIS is our job, as our children’s advocates. To ONLY take people onto our TEAM, who add value and knowledge to our next steps to protect and heal our children. I pray that we all demand this kind of care enough, that more valuable doctors will appear…AND that we follow our gut instincts. Follow our maternal guidance, so that even in the face of adverse ‘opponents’, we can stand confidently and speak our truth…leading to more communication, research and healing for our babies.

  6. Sugah says:

    Thank you for taking the time after the conference to talk to the other moms. No doubt you changed some lives with that simple act of kindness.

  7. Theresa says:

    Snap, The local conference you went to was put on by a magazine and the health care system. Do any pharmaceutical companies advertise in the magazine? The psychiatrists(sales representatives for pharmaceutical companies) were there to talk about medications for Autism. What about the health care system? The Health Care system does not want to acknowledge the true health issues of these children because they would have to pay for it. My son was diagnosed 16 1/2 years ago. It’s upsetting that in all that time treatment for Autism hasn’t changed much in the official world. The medical research papers and presentations from the few scientists/researchers of Autism need to be sent to the presenters of the Living with Autism Workshop and all those like them. In my state of New Jersey there is a conference every year by an organization called Autism New Jersey. There also the majority of the presenters are education, speech, OT, and advocacy with very little biomedical. It is for that reason I only attended once.

  8. Goddess says:

    One Mom at a time…this is how we’ll change the world. Go SNAP!

  9. Oh Snap… The words spoken by these “experts” made my blood boil! I am not a parent of a child with autism but one with suspected mitochondrial disease with regressions that can look very “autistic”…. your experience reminds me of a conversations I had with the “director of autism diagnostic services” at one of the largest children’s health psychological service providers in Houston. I asked her what medical and blood/ urine testing was done or recommended during their “autism evaluation”. She point blank told me, “there is NO need to do any medical testing on an autistic child, Autism is a behavioral and psychological!” so i took a deep breath and I went on to ask her if she knew what metabolic and mitochondrial disorders were and she said she had heard of them but was not sure what they were… So I filled her in on the connection between mito and autism and how my daughter can become “autistic” when we feed her foods with phenols and salicylates. Then she says, ” oh we’ll if the parents tell us the child has food issues we send them to a GI doctor, and some autistic children have seizures so we recommend they see a neurologist and some parents have 2 children on the spectrum so we send them to a geneticist, BUT Autism is not medical… It is a behavioral disorder.” I politely hung up the phone and screamed…… AHhhhh. ( then I emailed her some metabolic, mitochondrial and autism journal articles….. Hoping she reads them!!) thank you snap for using your voice to educate!

    • Tiffany says:

      Kristi! That is inexcusable! How can someone who is the director of autism and diagnostic services be so uneducated about those biological markers. Why is it all so disjointed? How can these doctors overlook all the physiological similarities in the HEALTH of these children. It’s unacceptable.

  10. Cheryl Bailey says:

    Yes, happens here too…and why do I feel like you are in Michigan? If so I know the Mom who fought to get the ABA insurance coverage..she does not support or believe in biomed, trust vaccines, and has a nice little note card pro ABA clip on youtube where she states that with ABA a child as a 90% chance of recovery!! God help people who fall for such.

    Thank you for speaking UP! Keep it up, we are slowly saving children from these harmful professionals who know oh so little and mislead parents left and right.

  11. Tanya says:

    Snap, this was an awesome recap! I live where you live and didn’t attend the conference because I knew just the BS that would be said. So glad that Holly brought reality to the conference! So sad that there is so few real resources here, but so ready to help change that. If you feel the same send me a line, I’d love to meet you!

  12. AmyinIdaho says:

    It’s all so maddening. On the surface, we are all looking to remediate behaviors. Some of us learn about how the body is supposed to work and take means to bring it back to health. Because of the ‘normalization’ of disease, some of us choose to give powerful drugs. Opportunity (money and supply mostly) allows others to choose behavioral therapies – usually in concert with natural or pharmaceuticals. It drives me crazy to have someone criticize my path (naturals and healing) and yet in the same breath talk about the 4 drugs their child is on. If their autism is such a freakin’ gift, why the drugs?

    I’ll never forget listening to an adult with Asperger’s talk about how she’s embraced her ‘quirks’ finally and how she wouldn’t be who she is without them. She then proceeded to joke about how she needed her “crank-me-ups/crank-me-downs/anti-depressants” and two other pills I can’t remember every day just to function (and “function” being relative because she is collecting disability because she is unable to work due to her “gift”). The real irony of her presentation was that she kept proclaiming to not needing to be “fixed”. Um, well – what are all the drugs for? Seems like she was trying to fix whole lot of something there.

    Good for you Snap in standing up and throwing Holly R-P that softball question – you knew what she was going to say and you knew it needed to be said. We all need to be saying it as often as possible.

    • Kristine says:

      A-freaking-men!!! I have always thought that about the “gift” contingent who are on multitudes of meds, collect disability, etc.

  13. Diana Gonzales says:

    I just took my son to a GI last week. We talked about how I was misled by the Dr s in OH. They told me that a diet change was not what LoRenzo needed. “He needs therapy “. This wonderful GI said “I have worked with so many parents of children with ASD, and I can tell you what I saw. I saw many make very big jumps in speech and behavior. I believe a diet change does work for many, and as for what causes Autism? I will be attending conferences in Congress and telling them your stories, you all say the dame thing without ever meeting! It’s time the medical community listens. We can’t keep telling these parents that they’re wrong when the sheer numbers defeat that statement, its like going to China and saying ‘rice is not a good food choice’.” I left his office with a new hope, not just for my son but for the medical community. These few brave Dr.s that are standing up to their own and saying “we don’t know it all and these parents are trying to reach us ” I pray that his speech does not fall on deaf ears!

  14. Robyn says:

    This is such a good article, I have found the same thing. I don’t understand why there has to be 2 camps, the biomedical, and the “accept it as a gift” and do therapy camp. I love my daughter more than life itself, and accept and love her quirks, but for someone to tell you that you need to just accept that she’ll be this way forever and there is no hope is BULL! I actually have found the total opposite, the behavioral therapies don’t work, or very little, and the biomedical has her taking leaps and bounds in development. What a crazy mixed up situation this is. How many years and children in pain and trapped in their own bodies will it take before mainstream medicine starts actually doing something!!? My first pediatrician visit started by me saying I had put my daughter on the GFCF diet, and the doctor saying “thats too bad” and when I asked why she would say that, her answer was “well its hard to do and expensive”. Of course I said she is worth every penny and ounce of effort, when you see such improvements! She then went on to tell me that there are lots of people taking advantage of parents on the internet, promising things that don’t work. As I went through her list of questions, about our education background and if we read books etc. I was so disgusted. She asked nothing about my daughters health, in fact she gave me a prescription for antibiotics and said to use it if I thought she needed it. She doesn’t have an infection! What a total joke! I left there and called a naturopathic DAN! doctor who is 2 hours away from here, booked an appointment and haven’t looked back. Finally someone intelligent and informed, who can really help and listens. I love my DAN! doc. She’s my shining light and I have so much hope for the future.

  15. Guilded Thinker says:

    I swear that panel of doctors must be consist of the same doctors I saw when my son was in the process of being diagnosed. They told us diets are dangerous. They told us our son would never speak. That ABA *might* make him manageable, but that institutionalization was our best option. At our appointment six months later, the doctors were surprised at how much better he was doing. We told them he was on the GFCF diet. Despite the obvious improvements, they still insisted the diet was dangerous and useless.
    It took me a long time to truly accept that the (majority of the) medical community DOES NOT CARE. They do not care if diets work because diets go against what they are taught in medical school. They do not care because they can’t get kickbacks from pharmaceutical companies from diets. We don’t NEED them to start a diet, but we do need them for a prescription. And, as evidenced by that doctor’s reply to the woman with the 4 yr old that didn’t sleep, they still prefer to blame the mother.
    Snap, I’m so glad you were there to point these moms in the right direction. My blood pressure was rising just reading the lies at this conference. As usual, you maintained grace under fire and made sure those moms knew their options.
    I loved meeting you at AO. You’re awesome!!! (and a neat eater, too!)

    • Heidi says:

      I can’t agree more with you that the medical and educational system do not care. ABA is about to be shoved down our throats next year and I am not looking forward to it.

  16. I am so disgusted with doctors, therapists and politicians thinking that ABA and OT/PT are all that’s needed to treat autism and that biomedical and dietary interventions don’t work (they do!). Keep spreading the good word. Not enough parents or even doctors know that children can be recovered!

  17. This reminds me of a Family Cafe Conference I attended in our town two years ago. I was very aware of the vaccine autism link at the time because I did my research. I wanted to know what “autism” aka heavy metal toxicity really is and found out. At this same conference they were offering vaccines. I felt like shooting myself!
    It is up to the autism moms with the knowledge to never stop telling our stories of how we are healing our child and the knowledge of how this happened in the first place.
    I was at an event yesterday called Nathaniel’s Hope. The emphasis was on fun and hope. There were numerous activities for the children of all disabilities at each booth. Very little opportunity to talk about treatment. As I walked around I finally met a Mom whose child had been born premature buy perfectly healthy and while he was in the hospital a procedure was performed and instead of putting it in the vein it went to his brain. This parent believes her child can be healed of a brain injury and will not give up. She told me her traditional Dr will now give her everything she asks for including supplements. This is the tenacity we need to have to recover our kids and this is what thinking moms revolution is all about. If parents would just attend Autismone we could go along way in stopping this daily travesty!

    • PoppyTMR says:

      Mary it was so good to meet you in person at AO! Thank you for always supporting TMR and being such a fighter in this battle. You are a gem xo

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