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!