Interview with autism expert, author and lecturer, James Williams, on May 28, 2014
by Katie Anton, founder of In Writing Tutoring Milwaukee
Katie: Welcome to Milwaukee, James! Thanks for meeting with me today.
James: Thank you for the opportunity.
Katie: You co-wrote your first book, The Self-Help Guide for Special Kids and Their Parents, at age 8, and it was published when you were 11.
Also, you began your public speaking at age 11. Tell me the story of how you decided to write your books and begin lecturing.
James: Well, you probably noticed in the question that the public speaking career and the book publication happened at the same time. And that is not coincidental. In fact, ask any author and they’ll tell you the publication of a book usually triggers a speaking or presenting career.
And that’s pretty much what happened with me. I co-wrote my first book, The Self-Help Guide for Special Kids and Their Parents, with my mother when I was 8 years old. And when the book was written, my mother was offered speaking opportunities, by many people, on my behalf.
I also went to my first autism conference with my mother in 1997. And when conference heads and others met me, they were eyeing me to present. I, however, didn’t know it at the time and, in fact, didn’t even understand the idea or even consider the possibility of me speaking as a child. Finally, at age 10, my mother notified me that there were people interested in hearing me speak. And I said to her, “Kids don’t speak at conferences.”
Well, she explained to me that kids do speak at conferences–and I agreed to speak at a conference. The presentation I agreed to ended up being a keynote presentation, at the 2000 MAAP Conference in Tampa, Florida, when I was 12 years old. But my parents and I felt that it wasn’t really a good idea for my first presentation to be a keynote presentation.
So my parents arranged a test run, at age 11, in September of 1999. I was asked to answer questions about myself at the end of another presentation. And I was only supposed to answer questions for five minutes. The presentation was by Annabel Stehli, a parent advocate and the founder of the Georgiana Institute, and was sponsored by Terrie Silverman, currently the director of AIT For You. That five-minute question-and-answer session, however, was so successful, that it ended up lasting a half hour. Parents flooded me with questions. This event, which occurred at the Medical College of Wisconsin in Wauwatosa, began my career, and my speaking career was born.
Katie: Are you working on any books now, James?
James: Yes, I am. Currently, I am the author of two novels on my own as well as the book that I co-published with my mother. But this book is a little different than those books in that this book is a children’s picture book.
After writing two novels and seeing the trends and the market for books, I decided to try something different. I ended up deciding to write a picture book. Not just a children’s picture book, but a picture book for “lower-functioning” individuals with autism. My two novels were written for and about “higher-functioning” individuals with autism, and I decided that since lower-functioning individuals with autism are out there as well, a book needs to be written for them too.
Keep in mind that, when I use the words “higher and lower functioning,” I’m not trying to say that they are less functional, or have lesser abilities as individuals. Rather, I’m using the “official” terms that are defined, medically and professionally speaking.
Katie: Right, those are the terms our society tends to use.
James: Yes, but society uses them differently than professionals. Society tends to define the functioning level of a person with autism solely based on language. If you’re verbal, you’re “high functioning”; if you’re nonverbal, you’re “low functioning.” But, in reality, those who are classified as higher functioning versus lower functioning have much greater differences than just language. And functioning levels can be very uneven as well when you have autism. I know verbal people, for example, who have much poorer hygiene skills than nonverbal people, even though those verbal individuals are often considered “higher functioning.”
Katie: You point out an important distinction, James. I’m sure many people judge a person’s functioning largely based on the ability to speak without really considering the other areas of functioning you mention.
You make your work look so easy, so natural. You must have had some great mentors when you started out. Tell me about them.
James: Well, everyone has to start somewhere. If your vocation requires higher education, after all, you start by getting a certificate, one-year degree, associate’s degree, bachelor’s degree or a master’s degree, depending on your vocation.
If your vocation is not a college-required vocation, you usually start by learning from others or building an apprenticeship. In my case, as a speaker, a degree was not required, especially since I started speaking at the age of 11. As a result, I learned from mentoring. But probably another thing I also learned from was, for the most part, trial and error.
When you speak, what you say is dependent on how willing your audience is to receive you. Comedian Robin Williams pointed out, your longevity on stage often depends on if the audience likes you. If they hate you, they’ll boo you, and you might have to leave the stage.
Therefore, what really helped me as a speaker was, through time, not only being mentored on how to speak and what to say to certain audiences, but through trial and error—seeing what audiences liked and how audiences responded to certain things and ides I shared, and discarding or amending things if I saw that audiences didn’t like the way I presented them.
As for mentors, no one mentor helped me present, and no one mentor helped me entirely.
My mother helped me start my career, and my father helped me as well by giving me a lot of technical skills needed in order to be able to sufficiently manage the technical aspects of some of my presentation that venues that don’t have a tech support crew. I have also been helped by other speakers and also seeing other people present.
One other person I have to thank, however, is Canadian author and presenter William Rogers, who also has autism. Will Rogers is the author of a children’s novel and was another one of my primary mentors growing up. He gave me amazing advice on how to be a presenter and how to cope with many of my issues as a person with autism, and gave me a lot of inspiration for many of the ideas that are a part of my work.
Katie: So, did you join Toastmaster’s or anything like that?
James: I never joined any organizations like Toastmaster’s, and there’s a reason why. My presentations are autism specific and, as a result, I always had to tailor-make my presentations to a specific audience.
Toastmaster’s will help you generically with speaking, and that’s okay, but I had to learn skills related to speaking and addressing audiences in the autism world. For example, I have has to learn how to share and discuss subjects that are appropriate to share in the autism world but not in others. In fact, autism work is what I often call the “open science” in part because there are things that are often discussed in the autism world in presentations that are not appropriate to say in other fields.
One example is hygiene. Hygiene is a subject discussed extensively in the autism world because many people with autism struggle with hygiene. But, if you were to bring up hygiene giving a speech in another field, you’d probably embarrass yourself and probably make a lot of people upset with you.
Katie: To say the least! So, how does your autism make you better at what you do?
James: Well, I would kind of say that autism doesn’t make me better or worse. The obvious gift is that, having autism, I have internal perspectives I can share in my presentations. But autism isn’t entirely a gift. Sometimes, the same traits that make me a good presenter can also get me into trouble in other situations.
Katie: What kinds of trouble do you get into? Could you think of some examples?
James: Well, although I have worked very hard and have improved drastically on knowing what to say with certain presentations, I still have social deficits and sometimes can say things that, retrospectively, might not have been the right thing to say in my presentations.
In addition, there’s more to presenting than just being a presenter. You’ve got to grant interviews. You’ve got to interact with the public. You’ve got to talk to lots of different types of people, and that requires a social versatility and social skills that not everyone with autism has.
Granted, I have worked very hard to learn how to associate with different types of people, but I’m not always perfect, and sometimes my autism can get the better of me, and I can sometimes say things that might upset people. However, I’ve had to accept that, and I’ll sometimes humorously say, paraphrasing Albus Dumbledore from the Harry Potter book series, “Being a person of prominence doesn’t mean that I make less mistakes. In fact, being prominent, my mistakes are probably much worse.”
Katie: (Laughs). What parts of your work are least enjoyable because of your autism? What are some things that you’ve struggled with?
James: Michelle Garcia Winner talks a lot about helping people with autism understand that, even in things they want to do in life and things they desire, there are always the uncomfortable hoops that have to be shot. And that is very true in this work.
Probably the most uncomfortable thing I have to deal with is sometimes having to wake up early to catch airplanes or buses or trains. I am a night person. Waking up early is not easy for me and, as a consequence, although I’ve learned how to wake up early and have learned how to wake myself up without using an alarm clock, it’s still somewhat uncomfortable for me to wake up early to catch a plane or a train.
Probably the second thing I have to do is, in order to travel, I have to have room and board, a place to stay.
Katie: That’s right. You’re on the road most of the time.
James: It is not always easy to find a person that will put me up in cities I go to, especially since there are many social rules in our society that are often barriers to finding a host. One example of a common barrier is if a family I have networked with in a city I am traveling to has a female on the spectrum and, because I’m male, they feel it’s wrong for me as a male to stay in the house of a person who is female and on the spectrum. I have learned how to be comfortable in cross-gender rooming situations, but not everyone is.
Another issue that often occurs is that not everyone is fully aware of how much I rely on people hosting me when I travel, so they might–even after agreeing to host me–cancel at the last minute, which might cost me hundreds of dollars of lost money I cannot regain.
Katie: So, when you network with people in order to get lecturing gigs, obviously you’re talking about autism, but do you disclose your own autism to people you’re networking with?
James: I always do. See, my work with autism, although I can present it to strangers as being separate from my autism, in my field, it is inseparable from my autism.
Think about it: All I’ve got is a high-school diploma, not really that much professional experience. What else would qualify me to talk about this? My autism. If I’m in the autism field, I’m going to have to speak openly about it.
Katie: Do you ever find that neurotypical people–people without autism–often don’t believe you have autism because you are so verbal and articulate?
James: Although some people might think that it’s hard to many to believe I have autism, that has never been the case for me, and there’s a reason why. I tell my back story. In my past, my autism was much more visible.
Plus, my autism isn’t as invisible as you might think. I, for example, do a lot of arm flapping, which is a consequence of my autism. It’s my “stim” behavior. Now, people accept it as a part of who I am, but that does show that, yes, I indeed am on the spectrum. Anyone who gets to know me well knows and cannot question it based on the mannerisms that they can see in other people they know who have autism.
Katie: James, you have some interesting views on gender and autism and how that has affected your relationships. Can you tell me more about that?
James: Yes, and this is probably the most controversial part of the work that I do. In 2006, Dr. Tony Atwood created one of the first research studies that poked holes in the conventional wisdom we have regarding autism and gender; namely, that autism is four times more common in boys than in girls. People still state that as fact, but a lot of research is poking holes into that fact, telling us that, you know what? Maybe that 4:1 gender ratio is not as accurate as we thought. And I wholeheartedly support that research.
One of the reasons why I support that research is, in part because, growing up, being a male with autism, I grew up in a school district and a social culture where, whatever gender you had with autism guaranteed you wouldn’t always get along with people of your own gender. In fact, your friends would tend to be of the opposite gender, and that’s the way it was for me growing up: My friends were mostly female, and many of those females had special needs and tendencies with autism, even though they were not diagnosed.
In high school, it was very sad to see how many females had tendencies of autism yet were not only not diagnosed but were not even getting services. In fact, it seemed as if there was a sexist attitude toward special education service in my high school. Males routinely got services when females didn’t, and that was what compelled me to support Tony Atwood’s theory.
Tony Atwood’s basic theory is that females who autism differently than males, and females are often less likely to get diagnosed because of sexism in our society, and I witnessed a lot of that growing up. In fact, I even saw through my female friends who, despite having the same symptoms I had, their experiences were very different than mine were.
For example, although I’ve never been interested in having any romantic relationships and openly consider myself asexual, if I wanted relationships, it could be very hard for me to pursue them. However, my female friends often had guys lined up who wanted to date them. They had the opposite problem. They had too many people wanting to date them, and that often made them very scared, sometimes putting them into panic attacks, whereas I, had I wanted a girlfriend, would have had to have worked very hard for it.
This phenomenon of polar-opposite relationship experiences was actually discussed at an amazing presentation at the Autism Society of Minnesota’s conference, where a man and woman with autism from England discussed this very difference and how it defined their adult lives.
Katie: As you’ve gotten older, James, are there things that have become less difficult for you as a person with autism? And would you be willing to share some of the strategies that you’ve used to manage symptoms?
James: Well, although I’ve recovered from many symptoms of autism, be them physical, biomedical and mental, I do not consider myself “recovered” because there are still issues I go through today.
Probably the one issue that has really, really improved over the years is my willingness to try new things. I used to be a very picky eater, and it was very hard for me to walk more than a block.
Today, I’m a connoisseur of many different foods, and I walk long distances with ease. What helped me with those things is becoming more familiar with the nature of certain foods.
Katie: What was it about certain foods that bothered you? Was it the texture or the taste or something else?
James: It was a combination of sensory issues as well as being aware of why I had to eat certain things.
As a child, I had a very hard time with chunks in tomato sauce and melted American cheese. There are other foods I would not eat, too, but as I grew older and started to realize what those foods stood for and what they meant, I became far more willing to try new foods.
As for my walking issues, we went to a podiatrist who diagnosed me with improper bone joints, and I underwent orthotic treatment for 10 years. Now my bones are properly jointed, and I’m able to walk normally like anyone else and actually can walk for miles without getting tired. Those are the two symptoms that, to me, improved drastically from when I was a child.
Katie: Are there any sensory integration issues that you currently deal with?
James: Yes. I have two major sensory issues. The two sensory issues I endure now are preferences with certain clothes and issues with sudden loud noises. Interestingly, however, sustained loud noises don’t bother me now, but they did when I was a child.
Sustained ambient rock music is not going to bother me, but a sudden loud noise like an alarm or a barking dog, or fire drills—that’s still going to bother me.
Katie: How do you deal with hearing those sudden noises?
James: I still feel intense pain. However, in adulthood, I try to adapt my environment to prevent the possibility of sudden loud noises. For example, in school, I was traumatized by fire drills. They were very painful for me. Now that I’m out of school, I don’t have to deal with them as much.
Katie: Yes, fire drills are horrible–even for people who don’t have autism.
James: Yep, and I remember coming to the conclusion I probably wasn’t going to work as a firefighter any time soon because I’d be subject to many sudden loud noises. Now, I have learned to accept some risks regarding loud noises, but as an adult, I have more control over my environment, and thus I can have more control in knowing if I’m going to be subject to those noises.
Regarding tactile issues, there are certain pieces of clothing that I will not wear.
Katie: Such as?
James: I will not wear T-shirts and shorts. I do not like the feeling of air on my body and thus will almost always wear long sleeves and long pants, even when it is hot out. Instead of adapting, I just tell people that these are my clothing preferences, and people tend to accept that when they understand why.
In addition, I also choose not to wear those clothes as an act of respect. In my high school, girls were often pressured by other girls to dress immodestly, I witnessed many of my female friends feel forced to and coerced to wear clothing that was immodest that they didn’t want to wear. I often fought for their rights to wear modest clothing. Thus, I consider my choice to not wear T-shirts and shorts, regardless of what my friends choose to wear, as a sign of respect towards them.
Katie: So, from our conversations in the past, it always seemed to me that your “special interest” is autism itself. Is that true?
James: Well, some people with autism do acknowledge that autism is one of their special interests, such as Dr. Stephen Shore, an individual with autism who considers autism to be one of his special interests. I consider autism to be one of my special interests as well, but I also see it as more than that—it’s something I have to live with and deal with daily. I also have many other special interests as well, such as history and Japanese anime. I also have a strong interest in anthropology and how different cultures function, and I sometimes relate these interests to my autism work.
But…one thing also needs to be understood regarding special interests. Many people consider having a special interest a symptom of autism, but when you think about it, that’s really because of the type of special interests people with autism engage in, and how people with autism engage in their special interests. Luke Jackson, a British individual with autism, once humorously said that an obsession is not an obsession when it’s about football. Somehow, it is okay for people to be obsessed with football and talk about details of it with each other without being considered autistic, yet when a person with autism has a special interest and talks about it routinely, we consider them to be autistic.
Katie: This is so true, and it’s a real double standard in this society. Often if your topic is not mainstream or is perceived as “unusual”, you might be looked at as autistic.
So, could you tell me about the mentoring work you’ve done for people with autism?
James: Well, although it can be technically mentoring, I do not consider it that way. In fact, I rarely consider myself a mentor, in part because I’m actually not really trying to do anything official at all. Many parents for many years have come to me and said I have children with autism that have amazing mentors in their lives and amazing professionals, but what they need more than ever are friends. Therefore, although there is a mentoring component to it, I personally consider myself someone who’s willing to be a friend to a person who needs it. Many children and adolescents with autism, even adults, don’t always get along well with their peers. Sometimes they get along better with other people with autism. Sometimes they get along with people who are older or younger than they are.
Katie: Did you have that experience when you were growing up…that your friends were older or ?
Katie: Which one, were they older or younger?
James: Both. As a young child, I tended to prefer being around adults. As a pre-teen, I tended to befriend people I got along with, regardless of their age, and was friends with children, adolescents, and adults that I got along well with. Then, in adolescence, I discovered I interacted well with younger children. And adults were also there for me that were comfortable enough to befriend me when I was a child. In essence, I consider offering friendship kind of a way of paying it forward: Adults were there for me, now it’s my turn to be there for the next generation of children.
Katie: It’s great you’re doing that, James.
James: So, now, there have been times when I’ve done mentoring, but those were when I was working at two summer camps. I worked at two summer camps, one in Indiana and the other in Wisconsin, as a camp mentor for individuals with autism but, apart from that, the mentoring I do now is not professional nor is it official. Rather, it is just basically informally offering friendship either because an adult asked me to be their friend or because a parent came to me and meet and/or possibly befriend their child, regardless of their age.
Katie: Oh, sure. So, what do you think are advantages that your generation and younger generations have now that the “forgotten” generations who came before you may not have had?
James: Well, generation gaps occur among many generations, even if they don’t have autism.
And there is a growing debate as to who had it better: The forgotten generation or our generation. Temple Grandin has always been the believer that the forgotten generation had it better. However, of course, the younger generation tends to think the other way around: they had it better because there was more awareness.
I personally think that the forgotten generation and the younger generation didn’t have it better or worse: they just had experiences that were different. Or to quote Temple Grandin again, “Different, not less.” It is true that the lost generation or the forgotten generation did have to deal with a lot of things on their own. And that, as they have pointed out, this forced them to have a sense of normalcy that the younger generation doesn’t have to deal with.
Katie: Yes, and social skills and manners were emphasized–and generally taught at home…nowadays that may not be as much the case.
James: That is true. However, there is another variable that needs to be acknowledged here. Some of the older generation classifies the younger generation as being lazy because they aren’t as willing to adapt as they were. They try to cite the high unemployment rates that the younger generation has compared to the older generation.
But another variable needs to be acknowledged here: The younger generation, regardless of disability, tends to live in a much more difficult economy.
Katie: Right. Many people in their 20s without autism have experienced a delayed adulthood with the economy and everything.
James: In addition, there are far more people in the younger generation than the older generation. The older generation…also, too, the older generation was forced to do something that the younger generation has a choice to do or not to do. Had the younger generation been given that choice, would they have just assimilated? Maybe not.
Because of the different living situations the forgotten generation and this generation lived in, it’s difficult to say if one experience was better than the other; I just say it’s different, not less.
Katie: The employment statistics are grim for people with the form of autism that used to be called Asperger’s syndrome. Why do you think this is? I mean, you would think that people with autism who are completely nonverbal would have more trouble finding employment, but it seems like the people who have what was called Asperger’s have a more difficult time.
James: Well, the answer is actually pretty simple.
Pretty simple. But the problem is that, and what makes this more scary, is that there was a paradigm belief that a lot of people believed in that is now gradually proving to be false.
Back in 1990, when the Baby Boom of autism occurred, and the numbers of kids with autism started rising, it was believed that the way you helped your child with autism was to make them higher functioning. Regardless of their diagnosis, the higher the functioning, the better.
And parents spent thousands of dollars on therapies, early interventions, in the hope their children would have a better chance in this world. Some parents even declared bankruptcy in the process.
However, something scary has occurred: although functioning levels indeed have increased as a result of those interventions, that has not universally extended the success rates in adulthood. Dr. Brenda Smith-Myles did a very scary study that showed that the employment levels of higher-functioning individuals with autism aren’t really that much higher than lower-functioning individuals. Although they are higher, they are higher by less than 10%, far less than what we would want to see.
Why is that? I believe it’s because another variable was overlooked when people were told to help their children with the higher functioning…and that is societal expectations.
In mathematics, we have a concepts that two equations can cancel each other out. In my opinion, I believe that is happening here.
What has happened is that the higher social expectations imposed on higher functioning individuals cancel each other out. Thus, you can be higher functioning, but the higher expectations and the less leeway you are given in society cancels out their benefits.
Plus, some people who are higher functioning tend to feel like they don’t need services when they do. Not because they’re big shots or egotists but because they grew up thinking they could be normal–even though a small part of their autism still remains. Thus, those individuals are less likely to get help when they need it. I consider this the product more of misinformation, not necessarily egotism.
Katie: I would agree. So, what career advice would you give readers with autism who may feel hopeless about future employment and being self-supporting?
James: Well, prepare for the worst. If you fail to maintain employment and fail to live independently, don’t feel bad about yourself. Many people have failed before you. Don’t think of it as because you’re a bad person: you have a disability. Not that you should not pursue employment; I’m not saying that at all. But, if you do not succeed, don’t blame it…don’t take it personally.
When you are looking for employment, always know the educational requirements of the job. If you don’t want higher education, then you won’t be able to pursue those jobs.
But do more than just that. Also try to find out what the social and sensory requirements are of a job as well as the academic requirements.
If you’re going to get a college degree or a master’s degree to pursue a field, make sure you’re able to perform in that field. Job requirements are going to tell you academic requirements, but they won’t tell you what the environment of the workplace is.
Suppose you get a bachelor’s degree in a field that requires you to work in a place with loud noises…and you can’t function with loud noises? You might find you got your degree pretty much for nothing, then.
Therefore–know the working conditions of your job before you pursue it regardless of the education required.
Katie: So, maybe job shadowing and get out there and actually see what’s involved in the workplace.
James: I’m a firm believer in job shadowing.
Katie: And, like you said before, even people who don’t have autism are struggling with this, you know, with the economy.
James: Yes. In addition, employment and independence are not the same thing. Turning 18 will not automatically make you become independent. Teachers like to make you think that, but it is not true.
Katie: And now for the last question–and you probably get this question all the time: If there were a pill that you could take to rid you of autism and live the rest of your life as neurotypical, would you take the pill?
James: Well, Temple Grandin has notoriously said no. However, I probably would say yes.
James: Just because I’ve lived my whole life with autism, and I just want to see what it was like to be neurotypical. I might be able to understand why so many rules that have put me down actually exist. They weren’t created to put me down- they were created for people who are different from me, and I’d be able to learn that.
Katie: Do you any parting words that you’d like to say?
James: Yes. Autism, in my opinion, is not just a psychological disorder. It is a physiological disorder, and many people with autism tend to have physical issues as well. I, for example, am gluten free because I suffer major digestive issues. I get very sick if I have gluten.
In addition, we need to acknowledge that these are indeed bona fide issues of autism and not to stereotype them as being the product of vaccinations.
In addition, one subset of these issues are related to hormones. People with autism tend to have hormone imbalances that can often impair their functioning.
Katie: Thanks again, James! It was great talking with you today!