Tuesday, October 7, 2014

Questions for Alec, an Interview on Living Life with Autism, Part 3, by D.A. Charles, Making an Impact, Alec Frazier, and Autistic Reality

My apologies for the late post, some personal stuff came up that couldn’t wait.

Welcome to part three of Alec Frazier’s interview.

What kind of accommodations do you use in dealing with your disabilities? Do you require anything specific in your working or learning environment that might be beneficial for others to learn about? Is there a special piece of software or a special assistive device that is really important for you?
Dragon NaturallySpeaking Premium 13, Nuance Commincations
These days, I use a few accommodations, but not as many as you may think. Crucial to doing anything is writing. However, as I have mentioned, I have two writing disabilities. As a result, I use dictation software to speak into a voice-activated system which renders my speech as text on the computer. The current software I use is Dragon NaturallySpeaking Premium 13. In addition to working with a word processor, it also works with emails, Facebook, the Internet, and just about anything I do on the computer. Another accommodation, one I use at school, and occasionally elsewhere, is having notes provided to me by someone else. That is because of the writing disabilities. I also have time and a half and a quiet, secluded location for tests at the school. Often this goes hand-in-hand with use the voice-activated software. One accommodation that I have on paper is the right to have electronic textbooks provided for me. These e-texts are then fed into a reading software that reads it back to me. However, I have also become quite adept at speed reading, which is been sufficient for the last couple years. Believe it or not, that is all the accommodation that I have at the moment.

What are the greatest barriers for you as a person who is autistic? These differ greatly from the physical barriers we often associate with someone who has a disability.

The greatest barriers for myself and several other autistic individuals is that we do not perform socially the same way that others do. This entails a wide variety of behaviors. Sometimes we do not understand things, and often make fun of them for existing, making us seem like the bullies. What I mean by making fun of people for existing is that we often find simple things silly, such as people’s names, or the way they dress. I am not trying to say that an autistic person’s lack of social finesse is their fault, but rather that we end up perceiving things differently than the rest of the population, and this can cause difficulties. It is this difference in perception and the ensuing troubles that is one of the greatest barriers for an autistic person. Of course, we also do not make friends as well as most people do, as was mentioned earlier. Therefore, when many accommodations with disabilities would include a ramp or an automatic door, for an autistic person, they would include patience and a willingness to understand.

Tiffany would like to know how much of a change you have seen from when you were a child to now, about the way people handle the news of their child having autism or a disability. You and I have talked about later in life diagnoses of people on the autism spectrum and even misdiagnoses of other neurodiverse conditions that are later attributed to autism. Can you tell us what you’ve learned about how social, sensory and stress factors that didn’t formerly exist are now causing individuals whose behaviors might have been seen as odd twenty years ago to receive an autism diagnosis?
Alec Frazier and his brother Nick at Waterworld in Colorado in the 1990s.
What I have to say on this matter will be very comforting to parents of younger autistic children. I have seen dramatic, almost unbelievable improvement since I was a child. For example, I used to be almost completely incapable of understanding social cues, and the ramifications could often be quite severe. Nowadays, I not only get social cues, but I help people understand them and generate several myself! In addition, I used to throw temper tantrums quite often. Nowadays, that never happens. The last time I was physically violent towards someone was in self-defense almost ten years ago. Nowadays, I believe that belligerent violence is never the answer. Parents need to be able to educate their children on proper social cues, proper behavior, and other important matters. Sometimes it helps if the autistic child believes that they have discovered the proper method of behaving by themselves. Having autistic children talk about their problems with their peers as equals is always important. It is also most important never to condescend to your child or in any way make them feel like they are less than you. Be a fun parent! Do activities with them! Always tell them that you love them! It also doesn’t hurt to tell them that they are not alone in the world of autistic people, and that they share their beautiful minds with people such as Thomas Jefferson, Albert Einstein, Nikola Tesla, Bill Gates, Leonardo da Vinci, and many others who have been quite successful in life!

Remember that being autistic is not a fault, and no one is to blame for the child’s condition. Remember that the condition is genetic, and staying away from various substances or vaccinations would not have prevented it. Also remember that you can empower your child to live a more productive life! Just because someone is a nonverbal autistic person does not mean that they are stupid. I have met many nonverbal autistic people who are quite articulate, just in different ways.

Many people believe that autism is caused by vaccinations or something in the water, or something else environmental. That is complete hogwash. The rates of autism have not gone up. Instead, a convergence of factors has made it seem more frequent. For one thing, there are more people on the planet than ever before, which of course means more autistic people. In addition, various stress factors that exist in today’s society and formerly did not cause autistic tendencies to manifest themselves more frequently. Social media alone can be a nightmare for people with autism. Due to our sensory difficulties, living in a modern, urban environment often brings out more stress. Due to the fact that the development of modern urbanity has only happened in the last fifty years, this makes autism seem much more prevalent. When you add that a lot of the other stimuli provided by modern technology and way of life, it is easy to see why there appear to be more autistic people. In reality, the percentages have not changed.
Let me explain two words that everybody on the planet should know and use. Neurotypical is a word used to describe people without mental variations. Neurodiverese is a word used to describe people with mental variations. Autism, depression, ADD, obsessive-compulsive disorder, and Down’s Syndrome can all be seen as forms of neurodiversity. This concept was conceived by an autistic sociologist in the 1990s as an alternative to thinking of these mental variations as illnesses or problems. For this reason, I frown upon the term “mental illness”, because the word “illness” treats the mental conditions at hand as if they are problems. With proper accommodation and work, they do not have to be problems. I also frown upon the term “handicapped”. This is because of the origin of the word. Back in the day, people with disabilities would hold out a cap in their hand begging for money. Using the term handicapped is demeaning and speaks to a very negative stereotype. The idea of thinking of disability as a form of diversity, instead of a problem, is called the social model of disability, as opposed to the old method of thinking of it as a problem, which is called the medical model. Once you learn to accept disability as a form of diversity instead of a problem, much of the stigma goes away.
In the interest of full disclosure, I do use the word “retarded”, but there are a number of conditions to my use of that word. First of all, I never use it to refer to the disabled, but rather in its completely different slang meaning which originated before its use as a diagnostic term. As a slang term, it refers to someone who does not “get” things, someone stupid, regardless of their mental state or condition. Therefore, it does not refer to the disabled, but rather to the stupid. Secondly, I never use the term in a working or political environment, as the term has no place in business. It should be noted that my use of that word has gotten me in hot water with the Autistic Self Advocacy Network (ASAN), who have stated that I do not have the right to use that word, even in my private time. They terminated my employment with them, but I do not want to work for them anyway, because I refuse to work for any person or entity that violates the First Amendment to the Constitution. I have the right to use slang on my private time, and since my use of the word does not refer to the disabled, I see any offense that someone takes to the word as perceived by them, regardless of the actual meaning of my usage of the word, which is not meant as harmful to the disabled.

You’ve posted a collage on your Facebook describing the way other people see a person with autism vs how your life really is… When people hear someone is autistic, they automatically think of someone who is locked inside their own mind, unable to interact with the world, or they see Rain Man. While I love Dustin Hoffman as an actor, I suspect that the Hollywood version of Autism is sort of like going to one of those Americanized Chinese Buffets where everything is served up to meet people’s expectations of what it they think it should be versus the authentic version.

The upper left image is of a number of my friends at a creative meeting, at least three of whom I would guess are autistic. The upper middle image is of a helpless child, embodying how Autism Speaks sees the autistic population. The upper right image is of a bunch of protesters—political hell-raisers—which is what the Autistic Self Advocacy Network (ASAN) wishes to make of us. The middle right image is of a woman being confronted by an absolutely crazy creature clearly about to disrupt her life by throwing a pie in her face, which explains how many neurotypical people may sometimes view the neurodiverse. The middle center image is of a poster for the film “Rain Man”, which, as you mention, has come to embody the iconic stereotypical pop culture view of autistic people. The middle right image is of the cover to the children’s book The Little Engine That Could, which features the train engine that overcomes tremendous obstacles, representing how the parents of autistic people often see them. The bottom left image is of me with a lot of my friends at my birthday party at the Buffalo Zoo, to illustrate how autistic people actually are with their friends. The bottom center image is of me hugging my mother and enjoying a tender moment, to illustrate how autistic people actually are with family. Finally, the bottom right image is of me giving a keynote address to over a hundred people in Auburn, New York, illustrating how autistic people actually are at work.

I’ve read that individuals with autism are more likely to have an interaction at some point in their lives compared to the general public. This is a frightening statistic. The Justice Department released a comment in July that it is working on a curriculum to educate local officers about interacting with citizens who have cognitive disorders. It seems the state of California has become forward thinking in this aspect as they have begun offering seminars for individuals with autism to be able to interact with law enforcement officers so both groups have better understanding. What advice can you offer a parent with a child who is autistic in preparing their child for a possible interaction with authority figures? We teach our children to go to the police if they are lost or in danger, but it’s a confusing situation when those same children must be warned that the officers who are supposed to be protecting them can cause them potential harm, how does one find a proper balance where their child is educated but not fearful?

The main piece of advice I would give to an autistic person dealing with authority figures is something they should excel at. Provide the authority figures with their diagnosis, and what that entails. That means that if they are having a stressful moment, they will need to calm down first. Nonetheless, this should be pretty easy since we can compartmentalize so easily. Autistic people love dealing in facts and volumes of information. Conveniently, this is something the law enforcement and other authorities also require to do their jobs. Failing that, make sure that the autistic child is well-versed in the parts of the Bill of Rights to the Constitution which protect them from any abuses by law enforcement. Mind you, the advice that I just gave you is best suited for autistic children on the higher end of the spectrum, who can talk and interact with law enforcement. Another good tool for an autistic person to deal with authorities is a card explaining their situation that can be put in their wallet, something like the following:

Card identifying an individual with autism, SEOPittsburgh, 2010
In order for a child to be educated, not fearful, let me speak to the parents of autistic children for a moment. Parents, if there is one lesson for you, it is to push your kids. Push them, even if they resist tremendously. Mainstream your kids in education. Make sure that they know how to use public transit. Try to make sure that they know how to fly on their own. Help them navigate public spaces. Encourage them to go out on their own, so that when they reach a certain age, they are doing things by themselves, instead of always having a parent do everything for them. I know that most of these lessons are good only for someone on the higher end of the spectrum, but if you are on the lower end and have an aid, go out with your aid and try to navigate the world with their help, and not with a parent. My parents often created incentives for me to go out and do things on my own. I understand that children are precious, but they should not be coddled. In terms of dealing with law enforcement, make sure that your child knows their rights, and that they know to stay calm in any situation involving law enforcement. I do understand that law enforcement sometimes has very low patience, but it will reflect positively upon the autistic person in question if they are not the ones at fault.

Many families who have a member whose diagnosis falls under the category of neuro-diversity, be it Alzheimer’s, autism, a cognitive functioning difference; worry about that person wandering off and being harmed or worse. A few years ago, a little boy in my community wandered off at Christmas. His father had recently passed away, it was a very stressful and frightening time for the family. The little boy was never found in time and unfortunately, he succumbed to the frigid weather conditions. His disappearance inspired a huge grant program funding tracking devices for individuals at risk of wandering off and not being able to find their way home. This is a controversial subject, many caregivers see it as a Godsend, many individuals with disabilities see it as a huge invasion of privacy. Your thoughts?

Whoa boy. This is a tricky issue. I definitely prefer not to have tracking devices of any kind on people. The idea is, that if you are a good parent or a good caretaker, these tracking devices are completely unnecessary. Let me draw a parallel. I know somebody who got a talking ball from a pet store, and gave it to their autistic child. They recorded it with their voice, and let their child take it everywhere, including school. This idea is completely idiotic, because it makes our children completely dependent on their parents, and uses a ball—I repeat a ball, you know one of those round things that is supposed to sit there until you throw it—to do the parents’ job, and do the teacher’s job. The relevant point is that parents and teachers and caregivers should do their job, instead of relying upon technology to do it for them. I actually feel rather strongly about this.

And last, but certainly not least, you’ve recently become the director of your own company, Autistic Reality. How did that all come about? What made you decide to start your own business and what types of services do you offer to the public?
Alec Frazier giving a keynote address in Auburn, New York as part of his services with Autistic Reality.
I have realized that I have a rather unique philosophy in life. I am more liberal than Autism Speaks, who view the autistic population as helpless victims, but I am more realistic than the Autistic Self Advocacy Network (ASAN), who view us as revolutionaries who must fight like hell, almost to the point of open revolt. I believe that life is a person with autism should be governed by realistic expectations for the world around you, and realistic behavior, embracing such customs as slang, clapping during presentations, and other social behavior. Believe it or not, ASAN believes that these customs are inappropriate. Most of the people in that crowd call themselves advocates, but are actually activists. I do find the difference between them in that advocates work within the system by having talks, meetings, and trying to cooperate with people, while activists throw protests, rallies, vigils and tend to sue people before they try to work with them. Therefore, with this realistic philosophy towards life, I decided to name my new firm Autistic Reality. It has recently been legally incorporated as a sole proprietorship consultancy firm.
The logo for Autistic Reality. The idea is that reality is being viewed through a lens. I intentionally avoided puzzles and puzzle pieces, light bulbs, and the color blue. The logo itself was devised by my friend and mentor, Emil Novak, Sr.
As for what the firm does, after a wonderful life of learning how to advocate for myself and others, I realized that I had services to provide. I discovered that I am a wonderful public speaker, have a knack for photography, can put on some awesome events, can do promotional work, but most importantly, that I can advocate on behalf of myself and others. I have been through the corridors of power advocating for changes in disability policy. When I was in middle school, I got a state constitutional amendment passed to raise funding for education. What I consider my legacy up to this point in my life is the establishment of the Community Living Administration, a federal agency. Since the late 1960s, the Independent Living movement has been trying to establish a federal agency to promote their interests. One day, I and approximately eight other people spoke to a staffer for Sen. Chuck Schumer, urging him to promote the creation of said agency. What happened next was completely unexpected. The very next day, he went into the Senate chambers, and proposed a bill creating that agency. Even more unexpected, the bill passed and the agency was created. I know that I can enact change in this world, and the big lesson for everyone else is that they can too!

If you’d like more information on Alec’s Business, Autistic Reality you can find him at http://www.nothingaboutuswithoutus.net/

You can find Autistic Reality on Facebook at https://www.facebook.com/autisticreality

You can find Alec’s book, Without Fear: the First Autistic Superhero, on Facebook at https://www.facebook.com/withoutfearautism

I’d like to extend a huge thank you to my readers for joining us and for posting questions for Alec; and Alec, I’d like to thank you for taking the time to answer and for being an integral part of my pre-publication team. Your time is greatly appreciated.

Thank you, Denise, for the questions, and all of the hard work that you do!

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