NOTE: We're pleased to share this interview from our sponsor Safeminds. While many of our own children can not self-advocate, and the term has become tarnished by many in the Neurodiversity movement, it's important and we welcome those with autism who can help our kids to do so. Thanks, Lisa Wiederlight of Safeminds and James. Please visit the Safeminds site here.
An Interview with James Williams, Autistic Advocate, SafeMinds Communications Committee Member
Last year, SafeMinds Executive Director Lisa Wiederlight, had the privilege of interviewing James Williams, a 27 year-old man with autism. James is a bright, highly-intelligent advocate for and representative of the autism community. The text of the interview follows.
Please tell us about yourself, and provide some information on your background.
I am an adult with autism, age 27, who has lived with autism all of my life. Though my official diagnosis of autism was at the age of three, in 1991, I was filmed extensively as an infant as part of a research project to showcase "normal" child development, and this footage has revealed that my autism emerged at birth.
My diagnosis at the age of three was the product of two things--an "explosion" of autism symptoms that increased at 18-months that included a digression of language, and my parent's belief that my digression was a product of the "terrible two's," a belief that had to be discarded when I turned three and the behavior did not change.
I underwent many therapies and interventions growing up--physical therapy, occupational therapy, theraplay, auditory integration training, and speech therapy--you name it, I had it, with two notable exceptions--ABA therapy and psychotropic drugs. My parents did not believe in ABA or drugs, and refused to give me such interventions.
After a highly-successful early intervention where I regained full language, I began my presenting career at the age of 11, answering questions after a presentation by parent advocate Annabel Stehli that was organized by auditory therapist Terrie Silverman. This led to a full-time career as a traveling presenter that I continue today. I am also the author of three books, Out to Get Jack, The H.A.L. Experiment, When Gary Comes to Play. I have served on the leadership team for Camp R.O.C.K.S., a summer camp for individuals with autism, from 2007 to 2012, and also a professional musician who plays the recorder.
One other thing that shaped my upbringing was my mother's constant disdain towards the public school system. She opposed the curriculum and felt that she knew how to educate her children better than the public school system. Unlike most children, school was never mandatory for me-my mother never forced me or my siblings to attend school. We could always choose to be homeschooled. I therefore spent my education in and out of public school, depending on whether or not the public school was able to give me proper services, and whether or not I chose to attend school.
What are a few things you would like people to know about how you view autism?
When you have autism, you are not separate from it. You live with it 24 hours a day, seven days and week, and it shapes every part of your life, from starting school as a child to employment in adulthood.
A person's beliefs and mindset are the product of how they cope with and respond to their life experiences and the environment in which they live. I don't believe in a "nature vs. nurture" dichotomy. I believe our nature determines how we cope with and respond to how we are nurtured, and that both "nature and nurture" determine a person's personality. Since people with autism respond to their life experiences and environment differently than their non-autistic counterparts, a person's autism shapes the way they see the world, their beliefs and mindsets, and the way they define themselves.
During my high school career, I was in a public school with very good special educational services, and a very good transition program. What I realized, however, was that despite having a good special education program, my school was far from perfect, and there was one major flaw--it did not give those services to everyone who needed them, and did not treat everyone in the special education programs equally. Some kids got services, while others needed them but weren't getting them. And some kids who got services were being treated much differently than others.
As an example of this, one student who suffered from a hand deformity that made it impossible for him to handwrite was given a "scribe" as an underclassman who wrote for him. When he became an upperclassman, this accommodation was taken from him, and his grades declined immensely, even though he was quite intelligent, and I was notified that the school decided to make him "write on his own," even though his hand deformity was very visible to anyone who came near him. This experience helped me shape another belief-just because services exist doesn't mean they are good services. Services must be implemented properly in order for them to help the people with autism they are serving. My high school was one of the top schools in my home state for special education services, but still had a lot of problems nonetheless.
How have some biomedical interventions/treatments improved your life?
First of all, it is important for readers to know that I have spent most of my life living with biomedical issues alongside my autism. Indeed, I have rarely enjoyed a part of my life without enduring a health problem alongside of it. Yet, despite my health issues, I still enjoy life and work hard to ensure my happiness despite my health problems.
When you are chronically ill, your viewpoint on health differs than that of others. Most people think of illness as something that a person takes a "few sick days off" from school or work to recover form, and then resumes their routine. When you are chronically ill, you have to function and work when you are still sick and recovering from illnesses. Therefore, you don't have the opportunity to just "shut down" and recover the way people who periodically catch a cold or flu do.
When I was in high school, I became friends with a girl who was battling cancer. She routinely was deprived the ability to function and enjoy her adolescence. I'll never forget when I saw her, at a football game, despite knowing that it was not in the best interest of her health to do so. She basically said that she just had a need to enjoy life, and do what her healthy peers did once in a while. I have felt a similar feeling throughout my life.
When I was three years old, I started to endure would become one of many varying chronic illnesses. My mother has speculated that this was because I was breastfed from birth until age three, and that when I was weaned at the age of 3, my immune system, which had been compromised, lost the protection that her breastmilk had given me.
From age three to five, I endured a major sinus infection, which was diagnosed as "sinusitis." My nose was plugged up and, accordingly, I had trouble breathing for almost 2 years, and had a chronic runny nose. After spending over a year trying to diagnose what was going on, a doctor discovered that this was due to enlarged adenoids. I received an adenoidectomy at the age of five, and was fully recovered in a month. As a child, I called this getting my "nose fixed."
Shortly afterwards, and for the next two years, I endured frequent headaches, sometimes daily. No doctor was able to diagnose these headaches for over a year-until we found out that the headaches were migraines that were an allergic reaction to wheat. I cut out wheat at the age of seven, and later had to eliminate gluten from my diet at the age of 12 after recovering from a major biomedical collapse. Around the same time, I suffered from two eyes that could not team or work together, which caused a lot of pain while reading and focusing. I underwent two years of intensive eye exercises and eye therapy, which enabled me to recover from this ailment.
The climax of my biomedical issues emerged at the age of 11. At this time, 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 and had been "freed" from the horrors of public elementary school. This evolved to a feeling of abdominal pain, bloating, and a lump in my throat after each meal. I gradually lost my ability to eat normally.
Doctors were unable to find a cause of this ailment. Some of their interventions actually made things worse, such as taking Zantac. I gradually became unable to tolerate solid food and lived on liquid meal replacements for approximately 6 months. I had a blood test taken by a pediatrician who claimed I was perfectly normal. We took the results from the same test to a DAN! (Defeat Autism Now protocol) doctor, who evaluated the blood test and explained that it actually revealed an autoimmune collapse, and that I was far from being "perfectly normal."
I eventually hit rock bottom six months after the biomedical collapse. I had lost 35 pounds, was wasting away, was starving to death, and was developing respiratory problems and schizophrenic tendencies. A turning point eventually emerged when I started a regimen of acupuncture and herbal teas. This led to me gradually reintroducing food in the form of soups and stews. But I still suffered a loss of taste, a loss of appetite, and a loss of desire to eat and drink. Another DAN! Doctor suggested that I take zinc supplements to improve that. I did, and eventually recovered a month after taking the supplements. By the time I recovered, I had not eaten normally for 10 months.
Today, I take a variety of minerals and supplements to maintain my biomedical issues. I take Vitamin B and Vitamin D supplements, as well as a medication to prevent early-onset baldness, which has had a hidden benefit of helping to ameliorate my autism-induced hormone imbalances. The supplements also serve to assist with my elevated homocystene, a condition I have had since the age of 20, which can cause a heart attack if untreated.
What do you think of SafeMinds mission of "Ending the Autism Epidemic by Promoting Environmental Research and Effective Treatments?"
Although I feel proud to be autistic, and will never consider myself fully recovered or "cured" from my autism, I support SafeMinds mission for two reasons.
First, having benefitted from many behavioral and medical interventions and treatments growing up that have enabled me to be successful in adulthood, I support the continued research of new and innovative treatments to help future generations of individuals with autism. The struggles that the "lost" generation-the individuals with autism born prior to the "autism epidemic"-faced due to lack of awareness, should not have to be endured by the new generation of people with autism.
Second, I believe that although there is no one cause of autism, environmental factors may definitely cause autism in some individuals. Therefore, I believe researching these factors can be very beneficial to understanding the complexity of autism.
Although autism has historically been associated as a psychological and behavioral disorder, much research has proven that a medical side exists to autism as well. Yet our diagnostic criteria still focuses on the behavioral aspects of autism, and autism is often diagnosed via behavioral symptoms, not medical symptoms. Ideally, medical symptoms should be assessed when people are evaluated for a potential autism diagnosis.
I am aware that many self-advocates oppose the missions of organizations like SafeMinds since they oppose the idea of "curing" autism and "ending" the epidemic. I acknowledge this perspective, and admire the fact that many of these self-advocates are fighting for their right to be accepted in society as unique individuals with autism. While I do believe that society should be more accepting and accommodating of people with autism, I also personally do not believe that being proud of your autism should stand in opposition with supporting research for environmental issues and effective treatments.
Rather, they should work hand in hand. We should respect and be proud of the gifts people with autism have, and respect the right of any individual with autism to identify themselves the way they choose, but we should also research as many ways possible to help people with autism function at their full potential, and to study the many causes of autism, such as environmental factors, to improve our ability to diagnose individuals with autism properly and accurately.
Why did you decide to get involved in SafeMinds?
As a person with autism who has experienced and "survived" many biomedical issues throughout my life, I developed a concern that there was a greater need for people with autism to share their perspective about coping and living with biomedical issues in the autism community. I have heard biomedical doctors share their research, and listened to parents share their struggles raising medically sick kids, and felt that the perspective of people like myself-the people enduring and struggling with the biomedical problems-was an essential perspective to further biomedical research, and to understand the struggles of the medically sick child with autism.
What are the biggest changes you see that need to made in our society as they relate to autism?
Probably the biggest change that I think needs to be seen in our society, and the one most relevant to the mission of SafeMinds, is greater awareness and understanding that autism is not just a behavioral disorder, but a medical disorder, similar to Down syndrome. People with autism have many medical issues and are more prone to contracting other medical issues. Yet, many people still associate autism as a neurological disorder with primarily behavioral symptoms.
In addition, when a person is being evaluated for a possible autism diagnosis, their medical issues should be assessed alongside behavioral symptoms they might be displaying. Many medical issues that people with autism experience-such as digestive and immune impairments-follow distinct patterns that are common among many people with autism.
Finally, society needs to more tolerant of the social deficits that people with autism endure. Like all societies, there are "core" social expectations that are expected of people, and there are "unforgivable" social mistakes that society does not forgive a person for doing. And sadly, because many people with autism have social issues, they struggle to abide by many "core" social expectations that other people with disabilities can function with. I believe that society needs to be more understanding of these struggles, and to be more aware that not everyone who fails to follow the "core" social expectations is a bad individual worth ostracizing or rejecting.