All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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24 July 2011

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.

E: 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.

E: 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.

E: 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.

E: 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."

E: 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.

E: 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.

E: 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.

E: 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.

E: 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.

E: 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.

E: 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.

E: 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.