2014 Interagency Autism Coordinating
Committee (IACC) Public Comments
The following are the full versions of
the two public comment presentations I gave to the IACC, the first on April 7th,
and the second on July 7th, in 2014.
Public Comment #1 (April 7, 2014)
I am a young male with
autism, aged 25. I was diagnosed with autism at the age of 3 in 1991. I
currently live in Northbrook, Illinois, a northern suburb of Chicago.
For the past 14 years, I have
written about and given presentations on autism all around America. My
presenting career began in 1999, at the age of 11, when I was brought in to
answer questions about my autism after a presentation made by Annabel Stehli, a parent of a person with autism, and the founder
of the Georgiana Institute. The event was held at the Medical College of
Wisconsin in Wauwatosa, Wisconsin. And I have presented on autism ever since.
There are many things that I
could talk about today, but I have decided to talk about biomedical issues with
autism from an insider’s perspective. Not from the perspective of a parent of a
child with autism or a MAPS doctor, but from the perspective of a person with
autism who has endured many biomedical issues in their life.
One year after my presenting
career, in 2000, I endured a major life-changing experience. I started enduring
issues alongside my autism that are referred to as “biomedical.” One week after
I finished elementary school, I suffered a major chronic illness that almost
took my life. I almost starved to death, and my immune system collapsed. I
lived on liquid meal replacements for almost 6 months and was unable to digest
solid food normally during that time. As I slowly became more emaciated, I
started developing symptoms of schizophrenia and started hearing voices in my
brain.
It took several months to
diagnose the cause of this mysterious illness. Although the symptoms were quite
apparent—loss of digestive abilities, followed by immune system impairments and
other issues, etc.—countless doctors struggled to find a cause to my chronic
illness. Many doctors sent me and my parents home,
despite being openly ill, and told them there was nothing wrong with me.
Finally, a holistic doctor accurately diagnosed my chronic illness as that of a
combination between an autoimmune and a digestive system collapse. My white
blood count was low and I was extremely malnourished.
I did finally recover after
being ill for 10 months. My recovery was made possible by a combination of
multiple remedies—including acupuncture, herbal teas, and mineral supplements,
such as zinc—a remedy that was recommended to my parents by Dr. Jeff Bradstreet,
a doctor who treats individuals with autism who endure biomedical issues.
To this day I take vitamin
and mineral supplements—“biomedical supplements”—in order to function. I also am
very strictly gluten-free, a diet I must maintain in order to function. If I
eat even a small amount of gluten, I get very sick, and can suffer chills, hot
flashes, a sore throat and stuffy nose, burning in my eyes, and sometimes,
attacks of arthritis. And if it weren’t for biomedical interventions during my
autoimmune collapse, I would have starved to death many years ago and would not
be here speaking to you today.
As the years passed, I have
met countless individuals with autism of all ages who endure biomedical issues
alongside their autism. And I have met adults much older than me who have
endured such issues at a time when biomedical issues were not even discussed in
the autism community. Some of the adults I have met that are biomedical
survivors were often laughed at when they tried to share their issues to
others. Ruth Snyder, a registered nurse with autism, in our co-presentation
“Biomedical Issues from an Autistic Perspective,” shared with me that when she
was growing up, the biomedical issues she endured were often ignored and she
was dismissed as being crazy and “mental.”
The stories of adults like myself and Ruth Snyder show that biomedical issues are not
new, and are not just issues that children with autism face. Indeed, these
issues might just as much be symptoms of autism as
sensory issues and social deficits are.
More research needs to be
done regarding the nature of the biomedical issues people with autism endure.
Research needs to also be formally done on the effectiveness of the emerging
treatments that are being used to help treat these issues. But more
importantly, research for these issues needs to be supported rather than
suppressed. The “vaccine” controversy” that has been going on for over a decade
now has delayed much essential research regarding biomedical issues, even
though not all biomedical research is “anti-vaccine.” And when individual
doctors who treat biomedical issues are disbarred or tainted by scandals,
countless other biomedical doctors are shamed and criticized.
In my community, there was an
orthodontist that engaged in dishonest practices and was considered a “quack”
by most other orthodontists. Would we argue that because one orthodontist
turned out to be dishonest that the entire field of orthodontics was flawed or
dishonest? Certainly not. Yet we often try to
discredit the field of biomedical treatments after individual doctors have been
discredited and disbarred, even when many biomedical doctors have never engaged
in dishonest practices and have never openly spoken out against vaccinations.
Today, I come to the IACC not
to complain, but to ask: How can we support research on biomedical issues? How
can we stop the vaccine controversy from getting in the way of conducting
research on the symptoms that so many people with autism suffer from on a daily
basis? And how can we give help and assistance to the countless people with
autism and their families that are enduring such issues?
I hope that the IACC and
other agencies start to take the biomedical issues of autism more seriously. In
the end, anecdotal evidence and data regarding an issue or topic should not be
used to discredit the issue or topic at hand, but to trigger further research.
Thank you for listening.
Public Comment #2 (July 7, 2014)
Good afternoon, IACC. Thank
you once again for welcoming me to give another public comment.
Today I come before you to
talk about another pertinent issue relating to people with autism. And that
refers to the struggles that adults with autism have in finding employment.
I shall speak to you today
excerpting a paper I co-wrote regarding this issue one year ago with fellow
self-advocate with autism Rachel Silverman. In this excerpt, the names of all
individuals mentioned have been changed to protect their privacy.
Based on my own personal
experiences, and the experiences of the individuals with autism I have met, I
have concluded that there are multiple barriers to employment with autism, and
that these barriers need to be addressed in order for individuals with autism
to succeed in the work world.
First, people need to
understand that although people attend school in order to get a job and join
the workforce, to many people with autism, school and work are two
different environments with very different expectations. Many individuals with
autism, such as my co-author, thrived in school but did not thrive in the work
world. When I left high school, I discovered that although my high school
education gave me knowledge that helped me in my work, very few of the social rules
and expectations that I needed to survive in school transferred into the adult
and work world. Yet ironically, teachers would often judge my social skills in
high school to predict my ability to function in the work world and adult
world. And students with autism often find that even with the proper
credentials for certain jobs, they still lack the social skills necessary to
survive in that workplace.
Second, many indirect
workplace requirements or indirect working conditions exist in any
given workplace or career field that are not always discussed when people with
autism pursue a job or career, such as social expectations in a work setting.
All workplaces have social rules, social expectations, and a social culture
that people have to negotiate when holding down a job, yet people rarely
mention that social culture when a person pursues a specific career and applies
for a job. At the same time, academic programs and job training programs may
teach the skills or lead to a degree required for a job, but often do not cover
the social requirements expected on the job that a person is receiving training
for completing a degree for. Instead, for most people, that culture is
something they learn instinctively without instruction, or when they start
their career and pursue it.
However, many individuals
with autism are not able to learn that culture due to their social deficits,
and as a result, they have had to leave jobs or have been fired from jobs
because they lacked the social skills to function in the social culture of
their workplace, even if they were qualified academically and had the skills to
perform the job. Some individuals with autism with advanced degrees find
themselves working high school level work because of these limitations. Researcher
Brenda Smith Myles, in several of her presentations, tells a story of a person
with Asperger’s syndrome who has a doctoral degree in
biology but currently shelves books at a library, unable to succeed as a
biologist due to his social limitations.
Workplaces also have sensory
inputs, and sometimes a person’s sensory issues can make them unable to
function in a workplace. The sounds may be too loud in a workplace or the
lights may be too bright. And many individuals with autism do not always learn about
those sensory inputs until after they have been hired for a job. Many job
applications, after all, usually don’t tell you the sensory requirements for
the job you are applying for.
Third, health barriers
to employment exist that people are not always aware of. It is believed
that autism strictly refers to a mental disorder, but new research has shown
that people with autism have health issues that are distinct to their
condition, sometimes referred to as co-morbidities. Dr. Jeff Bradstreet,
founder of the Bradstreet Wellness Center, has done extensive research that
suggests that autism has just as many physical symptoms as mental symptoms, and
that autism is just as much a physical disorder as it is a mental disorder. He
has attributed many behavioral issues of autism to health issues that he has
sometimes found to be more common in individuals with autism. And this is a
barrier to employment since people with autism are sometimes frequently ill,
sometimes resulting in them missing work.
I know an individual with
autism in her thirties who has routinely had to miss work because of
psychological treatments (due to her autism) that would often result in chronic
stays in rehabilitation centers, requiring absences from work. In college, she
sometimes would be unable to attend class due to bouts of nausea related to her
digestive issues.
In addition, the issues of a
person with autism, whether they are health-related, sensory-related, or
socially-related, sometimes limits the hours they are able to work. Some
individuals with autism are only able to work part time because a full time job
would be too demanding for them. This can also hinder the efforts of a person
attempting to find a living wage job.
Fourth, more awareness needs
to occur regarding the distinction between employment
and independence. Employment is often discussed in transition plans and is
often seen as a stepping stone to independence. But one thing I have observed
on my travels is that employment and independence are actually quite different,
and in many cases, employment does not lead to independence.
One of the realities that I
have seen when traveling is that most young adults I have met who live
independently do so with support via an SSI or disability check, not by
employment. Meanwhile, the majority of the jobs that my autistic friends and
the people I meet are not in “living-wage jobs”—that is, jobs that make enough
income to enable them to be independent. My friend Julia is a person with
autism in her twenties and has worked a variety of jobs yet is still living at
home because none of those jobs pay enough to support themselves independently.
Yet my friend Charles, also in his twenties, lives independently quite well,
and does so by receiving an SSI check, which gives him enough money to pay for
his needs, along with guaranteed coverage for health issues thru Medicaid.
Like Rachel, I dream of a
world where people with autism who desire employment and choose to work can be
accommodated in workplaces and that their dream of independence can be
fulfilled. I hope that someday the reality I have seen in the world today can
be changed.
Employment barriers are
complex and there are many issues that autistic people face when they pursue
employment. My life experiences and the stories I have heard in my travels from
others with autism have led me to conclude that the following questions need to
be asked if we are going to help individuals with autism find meaningful
employment:
If individuals with autism
are often employed in non-living wage jobs, is it worth it for them to pursue
higher education and advanced degrees before they pursue employment?
How do we find employment
that enables a person with autism to live independently, even with the
additional expenses that a person with autism might have due to their autism?
If an individual with autism
is pursuing a specific career, what are the social requirements and sensory
requirements necessary to function in the workplace environment specific to
that career, some of which may be unrelated to the work skills themselves?
Likewise, if welfare provides
superior support to adults with autism than conventional employment, how do we
challenge this perverse incentive that is an economic reality to these adults?
The answers are probably different
in different parts of the United States and the rest of the world, and the
right path is probably different for each individual with ASD based on their
specific issues, skills, and situation. But I believe that these are the
questions we need to ask ourselves to help people with ASD find employment in
society.
I shall also close by quoting
Rachel Silverman from her portion of the paper that we wrote: “I am perfectly healthy, educated,
qualified, and capable of working. My language skills include full fluency in
Spanish and intermediate reading proficiency in Russian. I have a masters degree in taxation. My work experience
includes publishing a newsletter on the Latin American Internet industry and
finding successful stock and real estate investments. I want to work
and earn a living with dignity like the rest of my Ivy League
peers. I don’t need or want a six-figure income, particularly since
I am childless and not interested in motherhood. But I know that I
don’t belong on welfare and that I deserve to be financially self-sufficient.”