Presentation on theme: "James Williams Biomedical Issues From An Autistic Perspective: How Do We Experience Them?"— Presentation transcript:
James Williams Biomedical Issues From An Autistic Perspective: How Do We Experience Them?
Introduction Name: James Williams Individual with autism, aged 24 History of biomedical health issues Have not always been open about these issues
What will be included in this presentation… My personal experiences with biomedical issues How I dealt with those issues and how they impacted my life Stories of others I have met with biomedical issues What finally compelled me to open up about biomedical issues
This presentation is NOT an anti-vaccine or pro-vaccine presentation!
Let’s Not Forget… The vaccine controversy has been a major obstacle for accurate research on biomedical issues and autism People with autism still endure biomedical issues regardless of their cause and should still be researched Not all biomedical research is anti-vaccine yet is often stereotyped as being so
New Research Suggests People With Autism Have Body Differences Just As They Have Brain Differences! Dr. Jeff Bradstreet has found evidence of distinct medical ailments that he has only found in the bodies of children with autism Dena Gassner has uncovered evidence showing that hormone levels differ in the bodies of individuals with autism, discussing the possibility of “hormone poisoning” And many people with autism often have greater behavioral issues when they don’t feel well physically!
Let’s Ask the Audience… Raise your hand if you are a parent who has a child who has endured any biomedical issue, such as impaired digestion, food allergies, or an impaired immune system. Raise your hand if you are a person with autism who has endured biomedical issues. Have you or any of your children benefited from a special diet, or any biomedical interventions such as probiotics or vitamin supplements?
Case Study: Autism Oasis for Kids In 2011 I made several visits to the Autism Oasis for Kids, a special school for children with autism in Florida. The school’s director prepared hot lunches daily that were gluten-free, casein-free, and vegetarian, and every student enrolled in her school was given the option to receive these adapted hot lunches. The director noted to me that the students with autism who ate her hot lunches daily often showed improvement academically and behaviorally.
The physiological symptoms and biomedical issues with autism should not be ignored or dismissed! One could even argue, as I do routinely, that autism constitutes a physiological disorder as it does a mental disorder, and that biomedical issues and physiological symptoms are just as much a part of autism as are social and sensory issues. For this reason, I decided last year to start becoming vocal about biomedical issues with autism, as a person who has endured many of these issues myself.
Origins of this Presentation I have attended the AutismOne conference, a biomedical conference, for many years Concerned by the lack of speakers with autism discussing their biomedical issues and attempts to stereotype these issues as being the ramblings of incompetent doctors or nutty anti-vaccine activists Have benefited from many biomedical interventions myself, even those that have been dismissed as tomfoolery by others Decided I wanted to change things and share my story
Biomedical Memories Endured a major sinus infection, known as “sinusitis,” from age 3 to 5 Endured frequent headaches from age 5 to age 7 Suffered from two eyes that could not teem or work together and underwent intensive eye therapy around similar time Endured routine feelings of soreness in my feet and could not walk longer than two blocks without pain and exhaustion Was unable to keep my head straight while walking Had multiple cuts to my chin as a young child Endured several freak nosebleeds in the middle of the night at age 7
Biomedical Memories Many doctors were unable to diagnose the causes of those ailments at first Finally, some of them were diagnosed and treated The sinusitis was caused by enlarged adenoids in my nose and I received a major adenoidectomy when I was five The headaches were caused by an unknown allergy to gluten—after cutting out gluten at the age of 7 my headaches finally disappeared, and I have been gluten free for the rest of my life To this day I endure major physical ailments if I eat gluten, which can range from chills, headaches, hot flashes, a sore throat and runny nose, physical soreness, and diarrhea
Biomedical Memories Freak nosebleeds were never diagnosed Foot soreness was due to a combination of low muscle tone and improperly jointed feet, underwent extensive occupational and physical therapy as a child and wore orthotics in my shoes for over 10 years, today I routinely walk up to 3-4 miles as a time Improper walking posture was due to curves in my spine and developing scoliosis and I underwent extensive chiropractic treatments for over 6 years Chin cuts due to issues with balance that often caused me to have falls while running or walking
Biomedical Memories Important to remember: All of these issues happened concurrently with many mental issues of autism! Often struggled with communicating these issues to others sometimes due to verbal ability and other times due to not being able to know where and when to talk out of fear of being misunderstood or disciplined Often wondered if these experiences were unique to me or if this was the reality of childhood, since I was not aware of my autism until age 8 Spent many hours trying to focus on how to endure the pain I was going through However, I did NOT spend much time thinking whether or not these issues were caused by vaccinations!
Biomedical Memories During this time, I endured many cycles of being unable to regulate meals and digestion… At one part of my life, I routinely stuffed myself at meals, unable to entirely know when I was full I often felt intense hunger even after a large meal (sometimes only 5 minutes after previously feeling full) and a constant need to eat No diagnosis was ever given for this and this continued until…
My immune system and digestive system collapsed between the ages of 11 and 12 and I almost starved to death!
My Autoimmune Collapse When I was 11, I had an extremely stressful experience in the fifth grade, where I was never able to feel calm in school Suffered periodic bouts of stomach flu and abdominal pain during the year Finally, I woke up with extreme abdominal pain less than two weeks after I completed the fifth grade Started feeling abdominal pain after each meal and gradually lost my ability to eat normally
My Autoimmune Collapse Doctors were unable to accurately find a cause of this ailment and no interventions worked, sometimes, they made it worse! I gradually became unable to tolerate solid food and lived on liquid meal replacements for approximately 6 months Blood tests showed an autoimmune collapse, high levels of mercury, and an impaired digestive system yet doctors were interpreting the tests as showing I had “nothing wrong” Lost 35 pounds
My Autoimmune Collapse Although my abdominal pain eventually started fading, I started losing my desire to recover and started “enjoying” being sick Often force fed by parents in an attempt to stay alive, resulting in a constant “war zone” between me and my parents Started hearing schizophrenic-like voices in my brain due to malnourishment and starvation Endured major appetite loss even after my abdominal pain faded after meals Started enduring respiratory attacks after certain movements as well
My Autoimmune Collapse Joined a Buddhist temple and used meditation temporarily to help clear my mind, however, this eventually did not work for me Also underwent drama therapy to help deal with some of my past autism-related traumas An endoscopy showed signs of acid reflux disease… I was almost on the verge of death until a turning point emerged 6 months after the collapse…
My Autoimmune Collapse Started sessions of acupuncture which gradually impaired digestive abilities Discovered some of my abdominal pain could be resolved by drinking hot tea during meals, along with ice cream Gradually started eating soups to improve digestion
My Autoimmune Collapse These remedies were not sufficient, however, as I still endured a total appetite loss and has lost the will to eat Often viewed eating and drinking as a chore The final remedy that caused a full recovery from my autoimmune collapse was taking zinc supplements After zinc supplements, my appetite loss ended and I was transformed into a person who now felt hungry and was willing to eat and recover from my ailment
My Autoimmune Collapse Two weeks after taking zinc supplements, I had fully recovered from my autoimmune collapse I was eating normally and had regained digestive abilities My respiratory ailments and schizophrenic voices soon cleared up afterwards By the time of my recovery, I had been ill for a little over 9 months
I’ve had many more issues since then, but that’s all the time I have for now. So why did I decide to become vocal about biomedical issues?
For Many Years… Was very quiet about my biomedical issues Wrote several novels and spoke more about social and educational issues Established myself as an author and presenter and have spoken at conferences all around the U.S.
But during my travels around the United States, I started hearing stories from people with autism and their families about their biomedical issues.
Examples One of my good friends with ASD endures routine attacks of nausea that has sometimes made her unable to attend work or school At a summer camp for individuals with ASD, I worked with a girl with ASD who had major digestive issues (that she called her “tummy problems”) and the other staff did not always understand her issues Met a family with a young boy with ASD who has a weakened immune system and has been unable to attend school due to his physical ailments
After hearing these stories and many more I realized that since I had endured many biomedical issues myself, it was time for me to speak out about them. I have met many doctors such as Dr. Jeff Bradstreet and Dr. John Hicks who have been impressed at my ability to articulate my story with others.
I also felt upset that there were not a lot of people with autism talking about their biomedical issues. With that, I would like to share the following advice for anyone who wants to help a person with autism who is enduring biomedical issues:
Advice Be aware that many of us are not always unable to understand the science of our ailments but we still suffer and feel the pain. People with autism aren’t always focusing on whether or not vaccinations caused their ailments, and the vaccine debate should not distract people or get in the way of helping autistic kids who are chronically ill.
Advice Some children with autism may not be fully aware of what it means to not be sick since they have been ill much of their lives and may resist attempts to recovery because they may see it as an unknown change to them. And finally…
Advice Safe zones should be provided for people with autism to openly share their issues with people they feel comfortable talking to. They should be allowed to talk to people they are comfortable sharing with. Remember that social rules in society make many topics about health inappropriate subjects to talk about, and have hurt people with autism in their attempts to communicate their problems with others, and we need to find ways to help them speak.
Advice In high school, I had many friends who endured health issues and often felt frustrated that they could not speak openly in many social situations when they needed to about their problems. My friends and I created safe social groups where we had the right to be open. We should create these places for kids with biomedical issues.
Conclusion Biomedical issues are real and not just the ramblings of quacks. I hope that more people with autism in the future can be vocal about their biomedical experiences, and I hope I have given a voice to others in this presentation with autism who have not been able to communicate these issues.
My mother always told me growing up, “The ability to communicate your needs honestly is the best way for people to understand what you are feeling and going through!” Thank you for listening. I will now answer your questions.