Interview with autism expert, author and lecturer, James Williams, on May 28, 2014


James Williams in Milwaukee on 5-28-14

James Williams in Milwaukee, WI on 5-28-14

Katie: Welcome to Milwaukee, James! Thanks for meeting with me today.

James: Yes!  I’m glad to be here.

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 career at age 11. Tell me the story of how you decided to write books and lecture.

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 or even movie star and they’ll tell you the publication of a book or the release of a movie usually triggers a speaking or presenting career. I mean, ask any late-night talk-show host, Leno, David Letterman, and they’re going to tell you actors tend to come on their shows to promote movies. And that’s pretty much what happened with me.

The book, The Self-Help Guide for Special Kids and Their Parents, was published at age 11 and, at that time, my mother was offered by many people speaking opportunities on my behalf, but the offers actually happened before that. It actually began at age 8 when my mother started taking me to autism conferences.

I went to my first autism conference in 1997. And the moment that the conference heads and people 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 myself, “Kids don’t speak.”

Well, I found out that kids do speak–and then agreed to it. However, what I had agreed to was a keynote presentation when I was 12 in 2000; my parents realized a keynote presentation for the first presentation really isn’t a good idea.

So we created it as a test run, a presentation at age 11, in September of 1999. This presentation was actually more answering questions. And I was only supposed to answer questions for five minutes after an established presentation. It was a presentation by Annabel Stehli, a parent advocate and the founder of the Georgiana Institute, and was sponsored by Terrie Silverman of AIT For You. That five-minute question-and-answer session, however, was so successful it was extended to a half hour. Parents flooded me with questions. This event, which occurred at the Medical College of Wisconsin in Wauwatosa, began my career.

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. That different thing I decided to try was a children’s picture book.

Another reason for trying that was because, although my two novels are based on higher-functioning verbal individuals with autism, I realized that lower-functioning individuals with autism are out there and that a book needs to written for them.

Keep in mind that, when I use the terms “higher” and “lower” functioning, I’m not trying to say that they are less functional. Rather, I’m using the “official” terms that are defined, medically speaking.

Katie: Right, those are the terms our society tends to use.

James: Yes, and society uses those terms, keep in mind, 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 high and low functioning have many more variables than just language. 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 on the ability to speak without really considering the other areas of functioning you mention.

You make your work look so easy and 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, you start by getting a bachelor’s degree or a master’s degree.

If your vocation is not a college-required vocation, you usually start by learning from others or building an apprenticeship. Note that by “higher education,” I’m referring to all education out of high school, even education that might involve a one-year or two-year certificate from a technical school, or what was known as, in my neck of the woods, a community college.

In my case, as a speaker, a college degree was not required so, as a result, I learned from mentoring. But, for the most part, I learned from trial and error. When you speak, what you say is dependent on how willing your audience is to receive you.

Comedian Robin Williams once pointed out that your longevity on stage 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 respond to certain things and discarding things if I saw that audiences really didn’t like them.

Katie: Sure. You learned from experience–testing the waters.

James: Regarding mentors, no one mentor helped me present, and no one mentor helped me entirely. Yes, my mother helped me start my career, and I am indebted to her, and my father helped me as well by giving me a lot of technical skills needed in order to be able to sufficiently man the technical aspects of some of my venues that don’t have a tech person. I was also helped by other speakers and also seeing other people present.

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 how to say things that were okay in the autism world but not in others.

Autism work is what I often call an “open science” in part because there are things that you might need to say in the autism world in presentations that are not appropriate to say in other fields. However, those things are often critical in order to get your point across.

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 powers that make me a good presenter (sigh)…can also cause troubles with me.

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 might not have been the right thing to say at all 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 versatility, a social skill, that not everyone with autism has.

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, quoting Albus Dumbledore from Harry Potter, “Being a person of prominence doesn’t mean that I make less mistakes. In fact, being prominent, my mistakes are probably much worse.”

Katie: 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 that are often barriers to finding a host.

One example of a common barrier is if I need to stay with a family, and the family 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 social barrier that often occurs in finding a host is that not everyone is fully aware of how much I rely on hosts in cities, so they might–even after agreeing to host me–cancel at the last minute, which might cost me hundreds of dollars in 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.

Now, of course, if I’m on a bus and I’m trying to talk to some stranger I’m forced to sit with, I don’t have to say I have autism. I can just bring it up. Or say if I’m in a situation where I cannot bring up my autism because it’s inappropriate, I can’t do so, but usually, if I’ve been asked to present at a venue, you’re going to know I have autism because otherwise why would you ask some 25-year-old young man to present?

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: Never.

Katie: No?

James: Although some people might think that, that has never been the case for me, and there’s a reason why. I tell my past story.  When I was younger, I was much more autistic and in my head. The story that I tell is common among those with autism because, at a younger age, autism tends to be 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 would 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. However, being an adult, I’ve learned how to adapt my environment and to advocate for others so they are not issues anymore.

Probably the two sensory issues I endure now are preferences with certain clothes and issues with certain loud noises. I tend to distinguish loud noises that people with autism hear as sudden loud noises versus sustained loud noises. Sustained ambient rock music is not gonna bother me, but a sudden loud noise like an alarm or a barking dog—that’s really going to bother me.

Katie: How do you deal with hearing those sudden noises?

James: I still feel intense pain. However, I’ve learned to adapt my situation to prevent possibilities. 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: I’ve also learned that I’m probably not going to work as a firefighter because I’d be subject to many sudden loud noises. I have learned to accept some risks regarding loud noises, but I’m more controlled with 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 prefer the feeling of the clothes on my body. 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’ve just told people that, look, this is my clothing preference, and I’m going to wear this, and people tend to accept that when they understand why.

In addition, I also wear those clothes as an act of respect. In my high school, I witnessed many of my female friends feel forced and coerced to wear clothing that was immodest, that they didn’t want to wear, and I fought for their rights to wear modest clothing. Likewise, I see wearing that clothing as a sign of respect for 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 would acknowledge and say that they could have a special interest that is autism. Dr. Stephen Shore talks about this.

But my actual special interest far more than autism, because autism is not just an interest; it’s a thing I live with so I have to deal with it. I could abbreviate a quote from Family Guy in which Meg talks about how there are things she lives with, not that they are an interest of hers. I will not go into specific detail so as not to go off topic, but I see autism as something I have to live with.

The special interests I see more of is an interest in history, Japanese anime, and I am constantly interested in anthropology and how different cultures function. I have been able to relate these interests to my autism work, but those are the interests I consider to be my special interests.

But…one thing that also needs to be understood regarding special interests. Special interests, we consider them to be a symptom of autism, but that’s really because of the type of special interests people with autism engage in.

Luke Jackson, a British individual with autism, pointed out that an obsession is not an obsession when it’s about football. Somehow it’s okay for people to be obsessed with football and talk about details of it, but no one thinks of it as autistic, yet when a person with autism has a special interest, 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 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 ?

James: Yes I did! Yes I did!

Katie: Which one, were they older or younger?

James: As a child, I tended to prefer being around adults. Then, in adolescence, I discovered I interacted well with younger children. And adults were 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 generic mentor for individuals with autism but, apart from that, the mentoring I do 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 said, “I want my child or adolescent to meet you and possibly befriend you.”

Katie: 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…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. There was a paradigm 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 children 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 hopes that 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 extended the success rates in adulthood.

Dr. Brenda Smith-Miles did a very scary study which 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 term that two things 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 will tell you something about academic requirements, but they won’t tell you what the environment of the workplace is going to be like.

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 people should get out there and job shadow to experience what’s actually involved in the workplace.

James: I’m a firm believer in job shadowing.

Second, know that employment and independence are two different things. People like to make distinctions between jobs and living-wage jobs, and that’s very important because not all jobs are living wage. You might be full-time employed and still have to live with your parents. Be aware of that, and know that, if your goal is independence, you have to make sure that the job you want to get will enable you to have what is called a living wage, live independently, or, if that job will eventually enable you after certain pay raises to live independently.

Katie: And, like you said before, even people who don’t have autism are struggling with this, you know, with the economy.

James: Yes. 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: I agree with you–employment and independence are two different things.  

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.

Katie: Why?

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 may not maintain the memories of being autistic, and although I accept my condition and I don’t believe I can be recovered, despite having recovered from many symptoms, it might be a change for me. 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 neurological 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. 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, as well as live with physical sicknesses.

Some people with autism have told me, in fact, that they feel like they have a harder time functioning because of physical issues–even when they have been higher functioning before.

Those of us who know people with autism need to be aware that sometimes a physical ailment, be it digestive based, hormone based, sometimes based on another illness or immune based, can impair our functioning at any minute and to be aware of that if we ever have losses of functioning.

In addition, related to the questions earlier, we need to be aware of our physical differences and be aware of how they might impact us in our ability to function, get a job, and live independently. I know people, for example, who tried to live independently and work but found out that their physical differences made it difficult for them to do so. One woman I know worked full time but had to quit her job and move back in with her parents because her physical body and her health just couldn’t handle it anymore. So that is my last word of advice.

Katie: Thanks again, James! It was great talking with you today!

James:  You’re welcome!

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