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.”