Pretending to be normal: A photo story of Asperger's Syndrome

Hey folks! I thought you might want to read a piece I wrote for Street Roots (see below), a publication that creates income opportunities for people experiencing homelessness and poverty by producing a newspaper and other media that are catalysts for individual and social change. 

Leah Nash, an award-winning documentary, editorial, and portrait photographer followed me around for a year taking photos and documenting certain events in my life. To go directly to the video and narrative, click here.

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Don't DIS my ABILITY Campaign: Meet Audrey!

Heard of International Day of People with a Disability in New South Wales? If not, click here to check out the Don’t DIS my ABILITY campaign. Up to 100 events are held throughout November and December each year to celebrate the diversity and ability of people with disabilities.

Let's applaud full inclusion of people with disabilities joining the worldwide conversation about us! Nothing About Us Without Us!

World Autism Interviews: Anemone Cerridwen/Montreal, Canada

Anemone Cerridwen is a mixture of scientist and mystic who is most comfortable around people in the performing arts - unconventional people who DO things. She's from Ottawa, Canada, and has lived in Edmonton, Calgary, Pembroke Ont, Vancouver, and now in Montreal (but would like to move again soon - preferably to Europe). She's always changing and doing new things, torn between having a home and travelling, being in the centre of things in large cities and immersing herself in nature far away from everyone. She's been on her own for a long time - having outgrown the environment she grew up in a long time ago but not having found a new niche, yet. Her life is about probably mostly about exploration, inner and outer, rather than conventional social roles.


Elesia: I enjoy supporting authors on the spectrum. Please tell us about your project, Why it Takes Ten Extra Years to Grow Up: The Evolution of Adulthood from Prehistory to the Age of Complexity.

Anemone: I wrote this book originally as an introduction to a book I was going to write on what religion would be like in a world where people are defined by authenticity rather than by imposed rules from outside, and I was using Clifford Anderson's The Stages of Life as a starting point. My introduction got away from me, but I'm glad it did, because writing it was such a huge accomplishment. It took me 3.5 years full time - it was like writing a PhD, but without the course work or recognition.

The book looks at how the logic we use to understand the world affects not only how we do science, but also how we perceive ourselves and other people. So it affects behaviour and social systems. And right now (for the past few decades) we have been going through a shift where people no longer stick with linear logic and simple nonlinear systems (machine logic) but have expanded into chaos, complexity and emergence - the logic of living systems (and most of the universe). Well, when you start treating people like living systems instead of machines, everything changes. And it takes a while to figure it out.

People went through a similar shift in the Renaissance with the spread of literacy - a fully literate culture uses linear logic rather than the haphazard logic of preliterate societies, and social norms change as a result. And people went from starting work at around 11-12 (or earlier) to continuing in school for another 5-10 years. Some places in the world are still going through this first transition as they modernize. If you're familiar with cognitive development at all, some cultures stop at earlier stages than others do. All human societies reach a mental age of about 6-7 (the end of Piaget's preoperational period, and Kohlberg's stage 2 of social and moral development) but only literate cultures go past that point. And now we're going past the end point of "modern" literate cultures into new territory.

Elesia: What are the core messages you are in hopes readers will gain from your work?

Anemone: That they don't have to be all grown up as soon as they finish high school or university, and that there's an actual roadmap that can help them continue to mature. It should help with getting support from families, grad schools, etc., for those whose instincts tell them not to settle down yet.

Elesia: How do you feel the concept of it taking more time to grow up relates to individuals with developmental disabilities, such as autism? For example, I am very different in adulthood in comparison to childhood. And I am still learning new things everyday. Some individuals with disabilities are unable to develop beyond a certain point due to factors such as profound support needs, significant Intellectual Disability, and/or services and supports that do not meet the individual's needs. How does your theory apply to people with developmental disabilities who are in a situation where they are supported, self-determined, and able to make strides in regards to common life milestones?

Anemone: I don't think autism has anything to do with whether people continue to mature past linear logic or not. That has more to do with feeling like you have permission to think for yourself or not - whether you're immersed in an authoritarian environment (which doesn't allow that kind of growth) or not. And you don't have to be economically privileged either. Some people travel to Africa or Southeast Asia to visit foreign cultures - I went to the Native Friendship Centre downtown to attend sacred circles and sweat lodges. And I did an enormous amount of reading - libraries are a godsend. (And now the internet.) All you need is to be exposed to contrasting points of view (inside and outside yourself) and to be open minded enough to study their logic.

On the other hand, development past linear logic has a great deal to do with how autism, and disabilities in general, are perceived. My impression is that the medical model and the drive for a "cure" is linear logic, and neurodiversity and the social models of disability are complexity theory. There's more room for people to be different with complexity theory.

Intellectual disabilities are another matter. There are people who do not develop all the way to a mental age of 16, for whatever reason, and this puts them at a disadvantage culturally. If you raise the threshold mental age of an adult to late 20s or early 30s, then even more people will probably not make it all the way to the end, which could increase the number of people considered to be disabled. I don't know if IQ makes any difference past a certain point or not. I suspect that emotional intelligence may be more important for development into the complexity period. Regardless, this is something that will become relevant at some point down the road.

Elesia: Have you applied your theory to yourself? If so, what strikes you as most interesting in relation to your life experiences as a person on the spectrum?

Anemone: I went through all this before writing about it. I went through all of it before seeing it described in Anderson's The Stages of Life, even. So theory came after experience.

It's possible that going through all these new cognitive developmental stages myself has affected how I perceive myself as an autistic person. It's hard to say. I wasn't really allowed to be "disabled" growing up, and it was close to the end of my development (early 30s) that I went looking for a diagnosis. (I finished the whole growing up process at age 35.) I don't know how much of that was my development, and how much of that was society not being willing to see people like me earlier.

I can say that using complexity theory to understand myself and the world makes it easier to understand myself as a person with human rights.

Elesia: What is adulthood? And how can we define it beyond age of maturity?

Anemone: Adulthood is being able to think for yourself, determine truth for yourself, and having a sense of inner completion - you aren't missing any parts of yourself anymore. At this point, you lose the drive for inner development and shift your focus to doing things out there in the world. It comes from inside, rather than being a role we put on from the outside in.

Elesia: What currently prevents society (e.g. collective consciousness) from adopting the views you hold about evolution and the extra time required to reach what we interpret as adulthood?

Anemone: First, this is new, so it takes a while for it to seem normal to people. It's always hardest for the first generation or two, because you can't just do what your parents did and have it work. Second, it only seems to be happening when society shifts away from authoritarianism (which suppresses conflict in systems), and there's still lots of authoritarianism around. I think what started all this in the first place is the shift away from authoritarian parenting after WWII. Researchers wanting to prevent another Holocaust found a link between authoritarianism and bigotry, and that's what triggered the shift. And the first generation to grow up under the new parenting were the ones to get involved with the second wave of feminism, the civil rights movement, the disability rights movement, plus a shift towards authenticity and away from conformity. Take the lid off and all of this stuff comes out.

Elesia: Do you feel your experiences as a person on the autism spectrum have given you greater insight into your research? If not, why?

Anemone: I don't know if being autistic has made any difference or not. I mean, we're all different in the end. I do know that I felt a strong need to go through all this development myself because the scripts my parents gave me weren't working, but that might have been the case regardless. Certainly, I was abused, and I needed to rewrite that script. And I knew I didn't want to conform (actually, I tried, but I couldn't get it to work). At the core it was a drive to be whole and authentic, to live life from the inside out. I think that's universal, when people have permission.

Elesia: Do you have plans to submit your work for publication?

Anemone: I submitted to Jessica Kingsley last week at your suggestion. They say 6 weeks or less for a response (which is hugely fast) so I should know before the end of the year. If they don't take it, I will need help figuring out how to get published (and promoted). Hopefully your readers can help.

Help Improve Healthcare for Adults on the Autistic Spectrum

World Autism Interviews: Katie Bridges/Vancouver, Washington

Katie Bridges is a full time writer who lives in Vancouver, Washington. By full time writer, she means she hardly ever stops writing. Whether she's working on a piece of fiction or writing a letter of encouragement to someone, she's always at her computer typing away. She also enjoys hiking and nature. Children’s science books are another favorite. In fact, she's quite addicted to them and has a huge assortment she's collected over the years. Between writing, she spends time with my family, giving a great deal of care to her grandchildren. Together, they love to star gaze late at night and talk about the latest scientific discoveries. Check out Katie's website at warriorsoftheedge.com


Elesia: Congratulations on Warriors of the Edge! Give us a quick synopsis, plus tell us where we can go to find out more and/or place and order.

Katie: Tarek Ortzen wants what any twelve-year-old kid wants, a day to himself so he can play games in his gaming booth. He gets his chance when he signs up for the role of Stone in the latest war game, Warriors of the Edge. He figures the game will help him escape the real world and its troubles. But after one day of nonstop play, Tarek wishes he'd never heard of Warriors of the Edge. The game has brought nothing but trouble into his life.

When the game begins to blur the line between reality and fantasy, Tarek finds himself caught between those who believe in the game and those who oppose it. Is the game trying to warn him of danger or lead him into it? Tarek doesn't know who to believe.

As Tarek's home world faces the threat of destruction, he must determine whether the character he plays can make a difference in their real lives.

To find out more, visit warrriorsoftheedge.com or order a copy through Amazon.com or Barnes and Noble.

Elesia: What do you love most about the writing process?

Katie:  I love the way writing takes me to another place and time, far from my present reality. Reading does the same thing for me. I can be sitting in my house on a hot summer day and suddenly, I’m stuck in a snowstorm on a dangerous mountain top. The more descriptive the book, the more I’m swept in to that world. The difference between reading about a picturesque scene and writing it myself is that the imagery has a more powerful effect on me when I’m the one writing it. In order to produce a descriptive scene, I must enter fully into it. It has to be real to me. As I step into the scene, I’m looking around at the scenery. I’m seeing every detail. I’m observing whatever my characters might be experiencing in that moment. I’m literally feeling the impact of what is taking place there. If it’s a tender scene, I will have a big smile on my face. If it’s scary, I will likely be biting my lower lip. If it’s cruel, my forehead will be furrowed in wrinkles. If it’s humorous, I can be heard laughing out loud. I allow myself to go deep into that experience so that it feels real.

One of the scenes I’ve created for Warriors of the Edge involves a transfer station. It is much like an airport, except it takes you from one dimension to another. I have walked through that transfer station countless times. I can tell you what the entrance looks like, how wide the aisles are, and how crowded it is, depending upon the time of day. I have traveled from one point of that transfer station to the other. I’ve seen things going on in there that aren’t mentioned in my book. Because I always see more than I end up writing about, I’m able to experience my scenes more fully than my readers. This is the advantage of writing. Writing for me is an experience that makes life richer. I feel as though I know what it’s like to travel through space or descend into the depths of the ocean, all because I’ve written about it. 
     
Elesia: Do you feel being on the autism spectrum gives you a unique viewpoint of life that comes through in your writing?

Katie: Absolutely! Growing up, I had a very limited way of thinking, mostly due to how repetitive my mind was. I would get one thought stuck in my head and I would repeat it for days on end, being unable to think of anything else during that time. It didn’t allow me to catch on to other things going on around me. My world existed of that one thought. In the beginning stages of my life, this was a problem for me. I wasn’t able to learn as quickly as others because I wasn't taking in as much input as they were. But that “problem” also held great potential for an advanced thought life. It was by thinking on one thing for long periods of time that I was able to expand on that thought and figure out all that it entailed. It was my way of studying something to the inth degree. Eventually, after a few years, I would become an expert on that thought and then I would move on to other thought. I’ve kept up this pattern throughout my life so that I now have quite a collection of ideas and concepts I’ve developed along the way. This brings much flavor to my writings and adds to the details I come up with.

Another advantage I have in my writing is that I see pictures in my mind all the time. Those pictures tell me stories. It will happen in a flash. In a split second, an image will flit through my mind and an entire scene will unfold before me. I can see it so clearly that it’s easy to write up what I’ve seen.

I view everything with a questioning, analytical mind, always probing deeply, but I’m also quite emotional, and so I put a lot of emotion into my findings. This enables me to describe a scientific scene with feeling. I may not be well suited to laboratory work, but this combination of traits is perfect for fiction writing.

Elesia: What advice do you have for aspiring writers who have disabilities who might feel intimidated by writer's agents, the publishing world, and the press?

Katie: Facing a myriad of responses from all sorts of different people can be tough, especially if you’re easily intimidated. You need a way to compensate for this difficulty. The best way, I’ve found, is to surround yourself with supportive voices who can keep you encouraged during this process. What makes it even tougher is that there are people nowadays who don’t hesitate to speak forcefully or even hurtfully to others. I grew up in an era when adults would say, “If you don’t have something nice to say, don’t say anything at all.” Most people abided by that rule, more or less. It’s not so much that way anymore. When I’ve been unfairly criticized or handled in a rough way, I’ve gone to people who will speak out the opposite of that so they can undo the hurtful word I’ve heard. Then I cling to that and do my best to shrug off the negative remark. The more positives you can collect, the more you will be cushioned from these blows. You might want to write out the positives and keep them posted where you can see them. Anything that works for you, go for it.

My mother used to say, “Prepare for the worst and hope for the best.” It’s helpful to prepare yourself ahead of time so that nothing takes you by surprise. If you have a realistic expectation of what might happen, it girds your mind so that you’re better able to handle any negativity that might come your way. But the surprise could be that you run into people who handle you with care, making it easier for you. I’ve had some negative experiences along the way, but I’ve had far more positive ones. Thankfully, there are plenty of people out there who still believe that kindness is important. I hope they are the ones you run into!

Sometimes it is our dreams that help carry us through impossible situations. For an easily intimidated person, having to deal with rough treatment can be an impossible situation. But the tenacity that develops from having a dream can bring you through that. Think of yourself as the Energizer Bunny, who just keeps going, no matter what. Keep going. Live your dream and the reward will be yours in the end.

World Autism Interviews: Shannon Reynolds/Portland, Oregon

Shannon Reynolds is a thirty-something wife, mother, and former teacher for Deaf children. She and her husband, Matt (both are Deaf), have two sons, ages 8 1/2 and 7, who are Hearing. Their eldest son, "Jordan" is on the spectrum with Asperger's. Shannon enjoys reading, drawing, crafts, antiques, gardening, farmers' markets, being in nature, watching films and spending time with family and friends. 

Elesia: Were you born deaf?

Shannon: In a nutshell, probably. For the longer version...

My parents suspected I was deaf when I slept peacefully right through the banging of pots and pans. They took me to the doctor and it was confirmed I had a profound sensorineural hearing loss, which means you literally have to yell in my ear for me to register any sound. I was 9 months old. I have come to appreciate the ability to sleep through any sound! That changed when I couldn't sleep through flashing lights that went off whenever our two boys as babies cried. Then, I got a taste of what it was like to be hearing and suddenly wake up to "noise"!

Many Deaf people list the cause of their deafness as genetics, illness, or unknown. My husband became deaf as a result of meningitis at 18 days old. Since my mother did not recall anything more than the common cold while pregnant with me and I did not experience illness associated with deafness as a baby, doctors put me in the "unknown" category. At age 2, way back in 1975, my family explored the possibility of genetics causing my deafness. Doctors then said it was a possibility that a recessive gene passed down by both my parents may have been a cause. Of course, they couldn't prove it. It would be interesting to explore that possibility with the advances in the genetic field since then! Both our boys were born hearing so the cause is still primarily "unknown". Doctors have always said I was born deaf and I have been deaf ever since!

Elesia: Do you use either hearing aids or a cochlear implant/s?

Shannon: I was fitted with hearing aids when I was 18 months old and wore them consistently until I was 30. They helped me hear noises however, I had to look at the person and lipread in order to make sense out of the words I was "hearing". Otherwise, it was mostly jumbled. Hearing people have asked me if what I "heard" sounded like the teacher in Charlie Brown specials, "wa wa wa wa wa". Kind of like that, yes. Lipreading involves many factors. Thick moustaches, stiff lips, looking away from me, or even over-enunciating makes it difficult for me to lipread.

I had to stop wearing hearing aids because of vertigo/inner ear/imbalance issues that developed later in life. Since I already depend heavily on sign language, I was more okay with it than not.

As for cochlear implants, I support them for whoever has weighed all the options available and still want them. Since hearing aids benefited me, I did not seek a cochlear implant until I heard that in some cases, it could make vertigo virtually disappear. In my case, the doctor believed it would make it worse. I decided right then that I would rather be standing upright vertigo-free, not hearing anything, and be with my boys as much as I can.

Elesia: Are you fluent in ASL? Do you have a preference for English or ASL?

Shannon: ASL is a beautiful language! ASL is a beautiful language and I cherish it, however, I am not a native ASL user.  A native signer usually is a person (Hearing or Deaf) who was born to one or two parents using ASL. Their first language is ASL. A native signer also could be a person who attended residential schools for the Deaf in which the curriculum was taught in ASL.

My parents were faced with the decision to place me (at 18 months of age) at either a residential school for the Deaf or the closest self-contained classroom for Deaf children. I grew up in a small town in California and the state school for the Deaf in Fremont was too far. I wanted to be physically close to my family rather than staying in a dorm overnight. My mother learned SEE (Signing Exact English), which was encouraged in many mainstream/self-contained classrooms in the 1970's, and she even interpreted for me everyday in elementary school. I started mainstreaming in 1st grade. She was a pioneer in those days when there were little resources available for sole mainstream Deaf children in small towns. And I am grateful to my mother for her dedication!

As an adult, I prefer to converse in either pure ASL or "ASL signs in English order". My husband is Deaf and most of our friends (Hearing and Deaf) sign to some capacity. It is much easier on my eyes and communication flows more smoothly this way.

To answer your question, I prefer to converse in ASL even though I write, think, and speak in English.

Elesia: Tell me about your family. You have a hearing son on the autistic spectrum, right?

Shannon: Matt and I have been married for almost 12 years. He is my soul mate and we are very blessed with two boys, ages 8 1/2 and 7, in addition to a cocker spaniel named M & M. Yes, now you know the name of our favorite candy! Matt and I are both Deaf and our sons are Hearing. Faith in God has carried us through many wonderful, challenging, and rewarding days.

Our oldest son is on the autistic spectrum. I will call him "Jordan" during this interview for privacy reasons. Please know that we are not trying to hide our son's identity or him being on the spectrum. He is still very young and when he is ready to declare himself to the world, we will most definitely support that! Jordan is a *whole* person who happens to be on the spectrum and we don't want people zooming in on his "label" without first knowing him for his strengths and what he offers to the world. Whatever "label" we have, I think every person deserves a chance to be known first.

Jordan was born with very intense eyes and ears. From the start, we knew he was an incredibly sensitive boy. When he was less than 24 hours old, he turned his neck towards his daddy when he talked. We knew without a doubt that he recognized Matt's voice. He was sensitive to loud, sudden noises and would cry for a long while. Sometimes it would be challenging to get him to smile. Looking back, we now know why. His eyes always looked thirsty for knowledge. Jordan was first introduced to a book at 4 months old, and he was mesmerized. He has been in love with books since then! He talked early, could recite the whole alphabet at 13 months, read full sentences in books at 2 1/2 years of age, and is now reading at a high-school/college level. He has competed in two school spelling bees and won the first one. He recently finished 2nd in a neck-to-neck competition with a 7th grader and hopes to compete in the Scripps National Spelling Bee someday!

He loves Jeopardy and Wheel of Fortune and anything to do with spelling and trivia. He loves to read novels, comic books and reference books and to do research on the Internet. He loves Poptropica, Wikipedia, Marvel superheroes, everything Mario, the history of the U.S. Presidents, the Diary of A Wimpy Kid series, Big Nate, Adventures of TinTin, The Edge Chronicles, and the history of arcade and video games (and so much more). Jordan tends to dive into a subject and learn everything he can. He is a movie buff and can recite the 10 top-grossing films of all time and the amount each movie has made. He has an amazing memory! He is particularly close to his younger brother and really prefers to be with his family and a few close friends.

When Jordan was almost 2 years old, we noticed some behaviors that made us suspect autism. He loved lists and would repeat them, and had some other behaviors that were a result of either being over stimulated or seeking sensation. We took him to an autism clinic and they diagnosed him with PDD-NOS, with a possible diagnosis of Asperger's when he was older. We are now convinced Jordan is on the spectrum with Asperger's. Because he is also profoundly gifted with some aspects of ADHD, it was not crystal clear until he was 7-8 years old. Obviously, we are learning and there is much to learn still!

Jordan knows about Asperger's. And he is amazed to know about famous people who also are on the spectrum. He has befriended a few kids at school who are on the spectrum. When he first discovered he was on the spectrum, he said, "It's no big deal. You and Daddy are Deaf, so..." :-) Jordan seems relieved to know and he understands himself even more as a result.

Elesia: What is the predominant language used in your home? And how does Jordan feel about ASL?

Shannon: Because both my husband and I grew up with Signing Exact English (SEE) and learned ASL as adults, we now tend to use ASL signs in English order in our home. We have always signed with the boys since they were born--even though they can hear--because we wanted to know them and them know us. We usually talk and sign at the same time with them, although we turn off our voices occasionally.

Jordan has always been willing to use ASL, even though he is a strong auditory learner. He wants to communicate his thoughts and ideas with us and he knows that we depend on ASL to understand. He sometimes wishes that we could converse in speech only because it is easier for him, but he is also used to signing. It is what he has always known.

Elesia: Some individuals who are both Autistic and Deaf mention that they find ASL to be demanding, as the language relies heavily on interpretation and use of facial expressions and body language. Do you feel Jordan struggles with that aspect of ASL?

Shannon: Yes, Jordan struggles with different aspects of ASL. He is able to maintain eye contact with us though, and perhaps because we are family and are familiar to him? Because of his ability to maintain eye contact, he does see our facial expressions. We think he does rely heavily on the *words* being used and if we did not use facial expressions, he would still get the message. I suppose Jordan probably doesn't depend as heavily on facial expressions for understanding, as Deaf people do.

What Jordan struggles mostly with is the speed of his thought processes and signing them out. He would much prefer to fingerspell. It is the opposite for most Hearing people who know signs. They internally groan when they have to fingerspell long lists of names at graduations and are relieved when they can sign full words again. Not with Jordan! It's almost soothing for him to fingerspell. Signing can be cumbersome for him, especially when his mind is racing so fast. He does have a good ASL vocabulary ready to use if we ask him to "Slowwww down" or "Switch to signing mode". After a minute or two, it's back to fingerspelling!

Elesia: What challenges do you face being a Deaf parent to a hearing child on the spectrum (if any)? And what is something you feel would help you?

Shannon: The biggest challenge I face being a Deaf parent is not being able to overhear people around us who talk with Jordan. If another child is trying to befriend Jordan, I feel ill equipped at the moment to guide Jordan through their dialogue. During their conversation, I have to depend heavily on facial conversations to see how smoothly it is going. I find myself relying on scripts, conversation etiquette, and social "rules" I have learned as a Deaf person. That has helped whenever Jordan and I talk about a social interaction *before* or *after* an incident. *During* has been the most difficult. Not only are we dealing with challenges with Asperger's, but with Deafness. These are two similar, yet different, worlds trying to communicate with the bigger world out there at the same time.

I think it will always be a challenge because we live in a predominantly non-Deaf and non-Asperger's world, but in the meantime I think what will help is:

1) Time.

2) Patience.

3) Humor.

4) Prayer (lots of it!), hoping that things will turn out all right in the long run.

Elesia: What supports does your community lack that you would like to see for your family?

Shannon: I would like to see support groups for Deaf parents who have a child on the autism spectrum. There are support groups for Hearing parents of children on the spectrum and certainly Deaf parents can attend and benefit from them. This usually means the cost of hiring an interpreter, which can be expensive for the groups already struggling with low funds. There are unique aspects to the Deaf parent raising a Hearing child on the spectrum that it almost requires a whole different support group.

Hearing children on the spectrum also could use a support group. They have double challenges, being Aspergian in a non-Aspergian world, and being Hearing in a Deaf home.

The invention of a device that captions/translates the dialogue between my son and a Hearing person would be most welcome! I know that's far-fetched wishful thinking, but with the technology age we live in, why not?!

Elesia: Do you see any similarities in challenges between autism and deafness?

Shannon: Yes, very much so. Each person on the autism spectrum and deafness spectrum are unique individuals, both the same and different. I think a person who is both autistic and deaf is the best person to answer this question because they experience both worlds firsthand.

We have learned over time that we are "different" from the majority, but that we must embrace our differences and realize that we ALL are in the same majority on a journey called "life".  A person who is Deaf may depend heavily on facial expressions and miss out on verbal cues such as tone of voice or idioms/phrases that Hearing people use. A person who is Autistic may depend on the written word and other avenues and miss out on the social cues such as facial expressions and nuances. We learn that we "miss out", but we also learn that others actually miss out in the wonders of our world. A Deaf person sees things a Hearing person doesn't, and an Asperger's person sees things a non-Asperger's doesn't. In the big picture, we ALL miss out and gain something as a result.

I believe many of us seek people "like us". It gives us a sense of likeness, unity, understanding, and knowing "we are not alone." This is why many Deaf and Autistic children and adults seek friendships with those who truly do understand the unique challenges they face. This is evident in both Deaf and Autism Spectrum cultures. This is why each culture has its own advocacy groups, websites, forums, annual conventions, and the like.

Elesia: Do you feel your son is accepted and understood by your local Deaf community?

Shannon: It's too early to tell whether Jordan is accepted or understood by the Deaf community. The Deaf community's viewpoints are diverse. Some would say Jordan is not accepted because he is Hearing. Some would say he is not accepted because he is Asperger's, and not Deaf. Some would say yes, he is accepted because he has Deaf parents and makes every effort to communicate in ASL.

What we focus on is not the community at large, but the circle of family and friends around us. The friends we have who are a part of the Deaf community, I do feel they accept Jordan. Not because he has Deaf parents or because he is Asperger's but simply because he is Jordan.

Elesia: What do you wish the Deaf community understood (as a whole) about people on the spectrum?

Shannon: Eye contact is very important to most Deaf people. It is their gateway to communication, either through signing or lipreading, or both. Many Deaf people feel it is rude to look away during a conversation because it can be interpreted as "This conversation is over." For some people on the Autism Spectrum, it is painful to look at another person's eyes. It's not a choice for them to look away. It is a necessity to function. My hope is that the Deaf community as a whole understands that there are creative ways to communicate with people on the spectrum if eye contact is an issue. When there is a will, there is a way!

Elesia: What do you think parents, educators, and service providers should know about individuals who are on the spectrum? What valuable insight have you gained that you would like to share?

Shannon: I am amazed at how many people are able to look beyond the label of autism and see the individual as that...an individual. A large part of that is truly listening to adults on the spectrum who are voicing to the world who they are, the joys and challenges they face being on the spectrum, and through books (John Elder Robison, Donna Williams, etc.), documentaries, movies (Temple Grandin), and especially advocacy networks/ websites such as yours, Elesia. Your championing neurodiversity is a great asset for future generations of people on the spectrum and those who love and work with them. On the behalf of our son, thank you!

Despite breakthroughs in education, science, and technology, some parents, educators, and service providers *still* see only the "pathology" in a Deaf or Autistic person. As a result, they are left feeling inferior. What service providers don't realize is that Deaf and Autistic people can sense that a mile away and are deeply offended. We want to be seen as people, period!

One major issue I have with medical literature and their criteria of being on the spectrum is this: "lack of empathy". Every time I read those words, I get so angry! I have seen Jordan cry because his brother is hurt, asks me "What's wrong?", or wanting to put on a play so he can earn money for those affected by the earthquake in Haiti, wanting to give all of his money to those who are starving, and he also says "I love you" often. One Asperger's adult said it so well: "Sometimes, we have too much empathy!" I strongly and firmly believe that. In fact, some non-Autistics have no empathy at all! 

Those words "lack of empathy" are very misleading and detrimental to parents who have moments throughout the day where they do see empathy from their autistic child. It can actually prevent them from seeking critical early intervention services because those concepts just do not fit their child. That needs to change...now.

Thank you to those who allow us to have our VOICE. Our voice...Deaf or Autistic...DOES matter!

World Autism Interviews: Jessica Sergeant/Kingston, Ontario

Jessica lives in Kingston, Ontario. She is profoundly deaf and uses American Sign Language (ASL) as her main mode of communication. Jessica was recently diagnosed on the autism spectrum. She has a Master's degree in Business Administration and a Bachelor's degree in Accounting. Jessica is studying for her Certified General Accountant certification, which she expects to complete in 2013. She is a globe trotter, and has traveled to over 30 countries! And she likes to scuba dive whenever she can. Her current interest involves learning as much as she can about Asperger's Syndrome as she is in hopes of becoming an advocate in the near future. Jessica will be presenting at the Canadian Deaf Women's Conference in Niagara Falls in July of 2011.

Elesia: Were you born deaf?

Jessica: The cause of my deafness is unknown, but my mother suspects genetics. There are several distant relatives of mine who have hearing loss. I have never met them, so I am not sure what type of hearing loss they have.

Elesia: Do you use either hearing aids or a cochlear implant/s?

Jessica: When I was growing up, I wore hearing aids everyday until I transferred to a residential school for the deaf, which then was limited to weekends. I stopped using hearing aids at 19 years old. Additionally, I quit speech therapy at age 12. Both of them did not quite benefit me as all I could hear were garbled sounds and I felt that I identified myself as a culturally Deaf person.

American Sign Language (ASL) is my first language, and it is the language I communicate and access information through. Spoken language never really was advantageous and was tremendously stressful to learn.

Elesia: What was school like for you? Do you feel your needs were accommodated? If not, why?

 Jessica: I was mainstreamed until age 11. There were no sign language interpreters and I had to rely on looking at other students' work to get an understanding of what was expected. In addition, I had an educational assistant for an hour 2-3 times a week. Classroom access was nil as I could not understand any of the students or the teacher. Reaching my potential to the fullest was inadequate. The mainstream school was ill-equipped for deaf students.

When I was 11, I started attending to a school for the deaf. All students were Deaf and the classes were instructed in ASL. I could understand everything that was going on in the classroom. My peers looked at me as an equal rather than a “defective” person.

Between these 2 experiences, the school for the deaf was more beneficial as appropriate supports for me were in place as Deaf person. Students at my mainstream school weren’t very accepting of me because of my deafness and I was excluded. And that wasn’t the case at the school for the deaf.

On the other hand, I always did felt different amongst my Deaf peers. My socialization and communication skills weren’t on par with my peers. It seemed that I struggled substantially in these aspects, but was doing academically well and was involved in various sports/committees.

Since Asperger's Syndrome was not recognized until 1994, I fell through the cracks and was not diagnosed with it until last year at the age of 30. I self-diagnosed myself with it a year after first learning about it through the TV series, House, M.D. Then I obtained an official diagnosis of my self-diagnosis.

Elesia: What could have been done to make your schooling experience better for you?

Jessica: Well, I think I would have benefited greatly if I had a mentor for socialization and communication skills. That individual could have been someone to turn to whenever I had difficulties in those areas. Additionally, awareness about Asperger’s Syndrome would have benefited myself and my peers. They might have been more understanding of why I was “stubborn" or "self-centered," or why I had to "have things my way."

Elesia: Did your parents ever suspect something else in addition to hearing loss while you were growing up?  

Jessica: Since I was deaf, I would assume that my family never suspected something else. They most likely attributed my differentness to being deaf. My peers did mention to me that they did feel that there was “something” about me, but could not pinpoint what it was until I disclosed my Asperger’s Syndrome.

Elesia: As for being on the spectrum, did you always feel there was something different about you, even when you were around other Deaf people and immersed in Deaf culture?

Jessica: Even though I was a part of the Deaf community, and everyone was "accepting" of me, I still felt like I was an outsider. Often I felt like I was the fish in a fishbowl - watching, but not really interacting. Everyone seemed to know "their place" while I was trying to figure out "my place".

There seemed to be this invisible expectation that everyone knew how to follow and I felt like I was on a social minefield. Social steps I took were often disastrous or out of extreme fear.

Elesia: Do you presently feel accepted and understood by the Deaf community?

Jessica: Before my diagnosis, I did not feel truly accepted for who I was. It often felt like that I was constantly failing to meet social expectations and I felt false as an individual. There were masks that I was wearing and I wanted to yell out that I was *Jessica* and wanted to roam around being true to myself.

Since my diagnosis, I am slowly letting my authentic self come out. However, since my diagnosis is very recent, I’m still coming to terms with how it defines me as an individual. There has been a paradigm shift since my diagnosis. I have disclosed my diagnosis to several people. To date, they have been accepting and understanding.

Elesia: What do you wish the Deaf community understood (as a whole) about people on the spectrum?

Jessica: ASL can be very demanding of me. There are facial expressions we are expected to identify and read since it indicates grammatical meanings. Body language meanings, which I often struggle to interpret, are also very important and signers are expected to know them. Too often I have missed things until someone points out that I have should know better. It was “obvious” that this or that happened.

The Deaf community is infamously known for hugging everyone we know upon greeting or before parting. This can be taxing sometimes because of my sensory issues. In the past, I have been accused of being cold or rude for not hugging “hard” enough. It is not my intention and it is just that my body sometimes is oversensitive to other people’s touch.

Elesia: What unique challenges do you face as a person who is both Deaf and on the spectrum?

Jessica: Since my diagnosis, I have recognized that I face double barriers. First, I need accommodations related to being Deaf. That means I require an ASL interpreter for interviews, meetings, and appointments. Interpreters are difficult to obtain on a short notice, and I get very stressed if one is not arranged. That can be a barrier to finding employment. Second, it exhausts me to socialize since I have to pay attention to key social rules. For instance, I’m constantly reminding myself to sign within my body, smile when appropriate, take turns in conversations, and not talk too much about a topic.

Elesia: What do you think parents, educators, and service providers should know about individuals who are both Autistic and Deaf (or individuals who are on the spectrum and who also have a significant hearing loss)?

Jessica: That is a tough question. Basically, both being on the spectrum and Deaf is a double challenge. There must be double strategies implemented in order to integrate in a world that is often confusing and full of invisible barriers.

Even though I may not show it, I often suffer in silence. When an ASL interpreter is not arranged for anything, I meltdown within myself. Thus, when I want to participate in my special interest and an
interpreter is not provided, this is a double whammy for me. Without the interpreter, I am not included fully in my special activity.

Back in April, I attended John Elder Robison’s lecture and requested an ASL interpreter and was THRILLED that one was provided. Imagine that if I was refused, I would be unable to attend as I would be unable to understand anything.

Also, it is important to note that I also struggle with accessibility issues related to captioning and subtitles. It often frustrates me that I want to watch a YouTube video that was viewed informative by others, but cannot watch it due to lack of subtitles. Anything related to knowledge building that lacks subtitles irritates me. I feel that I have missed out a lot on important information.

Elesia: Is there anything you are--or want--to do to raise awareness about our unique population (Autistic and Deaf)?

Jessica: I will be presenting about Asperger’s Syndrome at the Canadian Deaf Women’s Conference in Niagara Falls on July 26th. This will be my first public advocacy about the spectrum. Recently, I was asked by a local autism chapter to give a presentation, so I am looking into this. Since I was only diagnosed last year, I think I have done great strides in such a short span of time. I will see where this
leads to and perhaps I will become an international advocate. Right now, I am taking it one step at a time.

Elesia: In my own experience, I have expressive language issues, and it does not matter whether I use English or ASL, I still struggle to express myself unless I use written communication. Do you also struggle with expressive language? If so, how do you feel about English and/or ASL?

Jessica: When it comes to expressing myself, I am better able to articulate through written words rather than through ASL. Sometimes, at the moment of expressing--when using ASL--I am unable to find the words that would fully explain what I am thinking/feeling. Too often I have felt pressured to make quick responses when they aren't exactly what I had intended. The words did not come across as I had intended or it was an incomplete response. Also, the Deaf community is known for waving "I Love You" to everyone. I personally don't practice that as I don't see the point in flaunting that sign to everyone.