Ruth%20Snyder,%20R.N.%20 %20James%20Williams

1
Ruth Snyder, R.N. James Williams

• Biomedical Issues From An Autistic Perspective
  How Do We Experience Them?

2
Introductions

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

3
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

4
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

5

• This presentation is NOT an anti-vaccine or
  pro-vaccine presentation!

6
Lets 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

7
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 dont feel well
  physically!

8
Lets 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?

9
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 schools 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.

10

• 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!

11

• 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.

12
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

13

• With that, we shall now discuss our history!

14
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

15
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 glutenafter 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

16
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

17
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!

18
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

19

• TO BE CONTINUED

20
Ruth's Biomedical Memories

• Younger than 3 months
• Sick, mom scared enough to almost take you to
  the doctor"
• Many signs of malnourishment

21
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.

22
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 couldnt process it.

23
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.

24
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.

25

• And where was Autism while all of this was
  going on

26

• 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.

27
Our Autoimmune Collapses

• JAMES 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.

28
Our Autoimmune Collapses

• JAMES 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
  doesnt mean the same as everything is all right.
  And things are going to get worse with the
  Affordable Care Act.

29
Our Autoimmune Collapses

• JAMES 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.

30
Our Autoimmune Collapses

• JAMES 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.

31
Our Autoimmune Collapses
RUTH 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.
32
Our Autoimmune Collapses
RUTH After the birth of my fourth child, I
finally gave up all psych for spiritual
treatmentsif 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.
33
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.
34

• We've had many more issues since then, and still
  do, but thats all the time we have for now.
• So why did we decide to become vocal about
  biomedical issues?

35

• 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 Ive 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.

36

• 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.

37

• 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

38
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 arent 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.

39
Advice

• RUTH We should learn to assess a person with
  autism and their issues, rather than judge them.
• In addition, the cause of your childs autism may
  not be relevant to all of your childs issues.

40
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.

41
Advice

• RUTH Redefine what is normal, what constitutes
  lifestyle modifications, and what healthy looks
  and feels like. In addition, learning about ones
  self is an individualized educational journey.
• We are teaching always learning (NAC)!

42
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.

43
Advice

• RUTH 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?

44

• To conclude

45
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.

46
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.

47
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!

48
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.