Biomedical Issues From An Autistic Perspective

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James Williams
Biomedical Issues From An
Autistic Perspective: How Do We
Experience Them?
Introduction
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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
With that, I shall
now discuss my
history!
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.
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