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!