Ruth Snyder, R.N. +James Williams

Biomedical Issues From An Autistic Perspective: How Do We

Experience Them?

Introductions

• Name: James Williams• Individual with autism• History of biomedical health issues• Have not always been open about these

issues

Introductions

• Name: Ruth Snyder, RN• Individual with autism, older than James• Parent of 4 children, 2 with autism• Kids diagnosed when searching for

answers• Health issues often dismissed as mental

problems, personality issues, or by choice• Have not always been able to talk, literally,

regardless of desire or choice

What will be included in this presentation…

• Personal experiences with biomedical issues

• How we dealt with those issues and how they impacted our lives

• How working together, ourselves, and meeting others with biomedical issues finally compelled us to open up about them

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 and medically treated

• Not all biomedical research/ treatment is anti-vaccine, yet people often stereotype it as being so

New Research Suggests People With Autism Have Physical Differences Just As They Have Brain

Differences!

• Dr. Jeff Bradstreet and Martha Herbert have found evidence of distinct medical ailments that have only been 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, James 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.

• Ruth has made a similar discovery in public schools.

The physiological symptoms and biomedical issues with autism should not be ignored or dismissed as fantasies!

We should be researching them and figuring out what these symptoms mean!

One could even argue, based on this evidence, 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, we decided to start presenting together about biomedical issues with autism, as individuals who have and still are enduring many of these issues ourselves.

Origins of this Presentation

• We have attended the AutismOne conference, a biomedical conference, for many years, where we met each other, though initially we were not willing or able to discuss biomedical issues together

• We both felt concern over 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...or the *conspiracy theorists*

• We both benefit from many biomedical interventions, even those that have been dismissed as tomfoolery by others

• We decided we wanted to change things and share our stories

With that, we shall now discuss

our history!

James’ 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

James’ 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

James’ 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

James’ 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!

James’ 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

TO BE CONTINUED…

Ruth's Biomedical Memories

Younger than 3 months:

“Sick, mom scared enough to almost take you to the doctor"

Many signs of malnourishment

Ruth's Biomedical Memories

By 2nd Grade:

I was too tired and weak to function, dismissed and sent to school until first "pox" appeared. Even after I was “cleared” to return, I never fully recovered.

Months later, my school RN, after several days, called parents, “You have to take her to the doctor, her fever is 103!” Suffered with pneumonia.

In addition, I suffered from Hallucinations, vertigo, as well as difficulty processing information. This was normal for me as was poor health.

Ruth's Biomedical Memories

My parents’ lack of knowledge and support allowed me to stay home when ill. My sister stayed home so they did not have to miss work.

In time too much missed school brought in the authorities. Their solution was to put me in the hospital.

As an adult, researching my medical history, I realized it was what we call a mental institution and my health issues were never looked into. Autism was discovered and mentioned, but my parents couldn’t process it.

Ruth's Biomedical Memories

While staying at the hospital, my medication had to be stopped due to dangerously low blood pressure.

Without intent, I was taught to believe everything physical is mental!

If I did not feel well after that, my mother called psychiatrist, not physician, MD, etc.

I learned to go to a counselor, if I did not feel well... mind... too much to explain.

Ruth's Biomedical Memories

My saving grace:

My pregnancy and my curiosity, which lead me to pursue a career in health care as an RN.

And *where* was Autism while all of this was going on…

RUTH: When my immune system collapsed in the 2nd grade my physical health affected all my abilities. Later, when I was institutionalized my physical aspects were neglected. Autism was diagnosed but not treated other than structure, routine of hospital. May have saved my life.

JAMES: My immune system and digestive system collapsed between the ages of 11 and 12 and I almost starved to death.

Our Autoimmune CollapsesJAMES: When I was 11, I had an extremely stressful experience in the fifth grade, where I was never able to feel calm in school. I 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. I started feeling abdominal pain after each meal and gradually lost my ability to eat normally.

RUTH: After years of similar gut issues I was diagnosed with Irritable Bowel Syndrome (IBS) in my 20s. The medical books dismissed my diagnosis as just being a mental disorder. It was not acknowledged as neurological/ physical until I saw the museum exhibit "Body Worlds", 2007.

Our Autoimmune CollapsesJAMES: As my autoimmune collapse began, doctors were unable to accurately find a cause of this ailment. Some of their interventions even made my problems worse. I gradually became unable to tolerate solid food and lived on liquid meal replacements for approximately 6 months. A blood test showed an autoimmune collapse, high levels of mercury, and an impaired digestive system, yet a pediatrician interpreted the test as showing I had “nothing wrong.” Throughout my immune collapse, I lost 45 pounds.

RUTH: Just because a doctor says nothing is wrong doesn’t mean the same as everything is all right. And things are going to get worse with the Affordable Care Act.

Our Autoimmune CollapsesJAMES: Although my abdominal pain eventually started fading, I started losing my desire to recover and started “enjoying” being sick. I was often force fed by parents in an attempt to stay alive, and started hearing schizophrenic-like voices in my brain, due to my malnourishment and starvation. I also endured major appetite loss even after my abdominal pain faded after meals, and started experiencing respiratory attacks after certain forms of exercise.

To start the recovery process, I joined a Buddhist temple and used meditation temporarily to help clear my mind, however, this eventually did not work for me. I also underwent drama therapy to help deal with some of my past autism-related traumas. Finally, an endoscopy showed signs of acid reflux disease. However, I was still almost on the verge of death until a turning point emerged 6 months after the collapse.

Our Autoimmune CollapsesJAMES: This turning point began with sessions of acupuncture which gradually impaired digestive abilities. I also discovered some of my abdominal pain disappeared when I drank hot tea during meals, along with ice cream. I also gradually started eating soups to improve digestion.

These remedies were not sufficient, however, as I still endured a total appetite loss and had lost the will to eat. The final remedy that ended my autoimmune collapse was taking zinc supplements. With zinc supplements, my appetite loss ended, I started eating normally, and fully recovered from my autoimmune and digestion collapse 2 weeks after taking the supplements. By the time I had recovered, I had been ill for approximately 10 months.

Our Autoimmune CollapsesRUTH: In my twenties, I was too young to feel this old! I still believed In a greater good, though, and was optimistic!

Once I began working as an R.N., I began to get some sound medical advice, usually from conversations with colleagues at work hearing my story and pointing me to the right medical professionals.

I suffered major gut issues. I was diagnosed as having irritable bowl syndrome. I went home to read a medical dictionary, only to find that my issues were dismissed as a "mental" condition! My issues kept me from gaining weight. I had a “jello” diet, and society thought I “looked” good and healthy. As stated previously, not acknowledged as physical until 2007.

Our Autoimmune CollapsesRUTH: After the birth of my fourth child, I finally gave up all psych for spiritual treatments—if not spiritual then physical. Just because it can't be seen or touched doesn't mean it's not physical, Internet was helping with grasping this concept.

My son's medical issues being neglected and dismissed too. By now, it was going too far!

In the year 2000, another visit to doctor for another infection, Pink Eye. I also discovered weight shock. Socially, these conditions are “not that bad," but medically they are! A low carb diet was suggested. When I started, my weight came off but depleted health began to once again affect my functional ability at work. "My processor is jammed" and " I am not safe" was all I could say.

Our Autoimmune Collapses

RUTH: Fortunately my manager, and most professionals working with me, also could see and "assess" my struggle, even if none of us knew exactly "why." And that began my medical journey.

By now, my immune system and neurological systems were both fried. I had an "intriguing case“ of health issues, but my insurance ran out.

We've had many more issues since then, and still do, but that’s all the time we have for now.

So why did we decide to become vocal about biomedical issues?

JAMES: For many years, I was very quiet about my biomedical issues. I wrote several novels and spoke more about social and educational issues, as well as advocating for Auditory Integration Training. I also established myself as an author and presenter and have spoken at conferences all around the United States.

RUTH: I’ve been doing this long before I met James but was encouraged not to talk about it. I was told it was “too negative” and too controversial. But advocating for my children, refusing to let them go down the “mental” road, instead of the physical road, and refusing to neglect how their health issues affected their abilities, compelled me to speak about these issues.

JAMES: During my travels around the United States, I started hearing stories from people with autism and their families about their biomedical issues. I have also met many doctors such as Dr. Jeff Bradstreet and Dr. John Hicks who encouraged me to speak about these issues. Finally, I felt upset that there were not a lot of people with autism talking about their biomedical issues.

Seeing what I mentioned above, I decided it was time for me to speak out about them.

RUTH: Dr. Steve Edelson of the Autism Research Institute, invited me to go to DAN! Conferences, where I was introduced to many doctors and nutritionists, such as Dr. Martha Herbert, whom I discussed neurological connections related to autism. In addition, Dr. Andy Wakefield was the first person to hear my medical story. He said my medical history was “fascinating” and encouraged me to share the “Hope” that he saw I could share.

With that, we would like to share the following advice for anyone who is enduring biomedical issues, or wants to help a person who is enduring biomedical issues…

Advice

JAMES: Be aware that many of us are not always able 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

RUTH: We should learn to assess a person with autism and their issues, rather than judge them.

In addition, the cause of your child’s autism may not be relevant to all of your child’s issues.

Advice

JAMES: 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.

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.

Advice

RUTH: Redefine what is “normal,” what constitutes lifestyle modifications, and what “healthy” looks and feels like. In addition, learning about one’s self is an individualized educational journey.

We are teaching & always learning (NAC)!

Advice

JAMES: 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.

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.

AdviceRUTH: Like what is taught with the CAT Kit (I modified ours to help with physical not just emotional feelings). It is important to teach our children how to think not "what" and allow them to learn to understand how they feel inside. Be careful not to let them learn that “physical” is “mental.” This is a difficult challenge due to verbal abilities, sensory issues, and. "Black or white" thinking, but it can be taught/learned.

Examples: How do you feel today? How are you?

To conclude…

Conclusion

JAMES: Biomedical issues are real. They are not just the ramblings of quacks or doctors who have been disbarred from practicing medicine.

In addition, the disqualification of a few doctors who have worked with children with autism should not invalidate all biomedical research or all doctors that research biomedical issues with autism.

Conclusion

RUTH: When people with autism physically don't feel well, our language, be it our verbal language or body language, can change drastically.

As a mother with autism, I had to first “learn” how before I could “teach” how.

Conclusion

JAMES: 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!”

Conclusion

We hope that more people with autism in the future can be vocal about their biomedical experiences, and we hope we have given a voice to others in this presentation with autism who have not been able to communicate these issues.

Thank you for listening. We will now answer your questions.