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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10 March 2011

World Autism Interviews: Isabel Espinal/New England

Isabel was born in New York City. Her parents are from the Dominican Republic. As for college, she enrolled at MIT and nearly flunked out. She decided science and technology were not for her and transferred to Princeton where she wound up flunking her senior thesis. Eventually, she submitted a passing thesis, earned a Bachelor's degree, and then a Master's in Library and Information Studies. She has been a librarian since 1991. Isabel is a mother to 3 children. Her kids are now teenagers (and her son is in his first year of college). She loves literature and especially enjoys translating poetry from Spanish to English. Isabel is currently working on a PhD in American Studies with a focus on Literature.

E: How old were you when you received a diagnosis on the autistic spectrum, and how did your family respond to the news?

Isabel: I am 46 years old and just received a diagnosis two months ago. I started reading about Aspergers and autism through a friend of mine (Rachel Cohen-Rottenberg, who writes about her own autism since her diagnosis at age 50 on her blog Journeys With Autism). All of this is so new to me, so unexpected, and yet so wonderful too. I don't think I have completely assimilated the diagnosis yet--let alone my family. 

I have a big family and I have not told a lot of people, but as soon as I started to think I might have it, I sent an email to my sister and to a few close friends. I emailed my therapist, and I also told my kids. My sister reacted by saying that she said it made her wonder how many other people in the family might have also been on the spectrum. Autism definitely resonated with her as something that may exist in our family, and I found that very affirming. 

I had a friend who said, "No way," because I am very empathetic and the classic symptom of Aspergers (in her view) is lack of empathy. But I had done a lot of research and I sent her a few links that refuted that theory. She said, "Wow, I had no idea." 

Another friend was very mean. He said I did not have Aspergers, that it was a fad diagnosis, and that what he thought I had was Narcissistic Personality Disorder. It was very upsetting that he would dismiss my thoughts, as well as dismiss my own observations. I explained that there was a lot about me he did not know, but he insisted that his view was correct. I was so upset I could not stop crying. But that experience did not stop me from pushing what I felt was the truth about myself, even though I was sad not to have his support.

My boyfriend has been very supportive. We talk about it all the time. I can see how my autism has affected our relationship, and how the diagnosis and knowing about autism will improve how we relate to each other--it already has.

As for my kids, my oldest said he knew students who had it and he did not think I had it because I was not like them. But it's different now that it's not just my own suspicions, as I have a professional diagnosis. For me, I know that it's my kids who I most want to explore what autism has meant in our lives, as well as what my autism has meant for them, and will mean for them. I think it may help them understand some things, but I also think that we need support services so they can understand this and better deal with it. In this sense I feel very different from a lot of women I have read about. It seems that women and men my age who get diagnosed often do so because they have a child who is diagnosed first. Discussion of autism is already in the family in many adult cases. In my case it wasn't, so I have the challenge of being the person who introduces this concept to my children. And it may seem like it's coming out of nowhere. It's daunting, but also promising - I feel like this can really help us in ways not found in the past because we were solving the wrong problems.

E: In many communities, autism and disability are stigmatized. As an American-Dominican, do you feel autism is a stigma or taboo in your culture? If so, why?

Isabel: I don't think there is much understanding of autism, and of what the spectrum is. I certainly did not have that understanding until recently. I don't know if it's a taboo. I don't feel it that way. I feel that it would be much easier to talk about autism in my Dominican family than it is to talk about sexuality or divorce or religious alternatives, for example. My family is huge - I have 73 first cousins, and there are many 3rd, 4th, etc. I think there is a lot of variety and in many ways a lot of acceptance of difference. I have a cousin who has a daughter with developmental delays. I'm not that close to him so I don't know all the details, but for all I know it's probably autism. He and his wife have structured their lives around meeting their child's needs. They moved to Boston to be near specialists. This was a very difficult move for them because they are now far from the extended family. I visited them a few years ago before I knew anything about autism. Everyone treats their daughter with so much love and affection. In my family children are precious no matter what.

There are aspects of my own autism that garnered praise in my family. When I was a child, I was often complimented for my ability to sit still, quietly. For me it was natural, as I was often in my own world. It was easy to sit still at church or at a medical clinic. I remember one time I was picked to be an angel in a church event. They dressed me up in a silvery costume with silver wings. Everyone kept saying I was the perfect angel because I was so still. Another thing that earned praise and attention was my ability to read, memorize, and figure out visual things like maps and charts. People exclaimed things like, "¡Esta niña es una Biblia!" ("This girl is a Bible!") So when I recently read about autism and Aspergers and the "little professor" syndrome, I totally related. I probably cried reading about that because it was so close to my experience.

E: Have you ever felt misunderstood by family members or friends who expect you to behave in certain ways?

Isabel: Yes, yes, yes! In particular, people did not understand why I liked to be alone. I'll never forget the day one of my aunts confronted me with the question: "A tí te gusta estar sola, ¿no es verdad?" ("You like to be alone, don't you?") I felt cornered, exposed, and ashamed because I liked something that was so seemingly horrible. Until recently, I attributed this difference to culture. I thought the fact I liked to be alone was a result of having grown up in the United States where people are almost obsessed with themselves and always seem to want their own space, as opposed to Dominicans.

Another thing that was criticized in my family when I was a girl and a teenager was the fact that I liked to read so much. I was always reading. I would bring books to the dinner table if I could get away with it. But this was a habit that worried some people in my family. Aunts would tell me it was not healthy to be reading so much. When I was a teenager in high school and college, a lot of family thought I was rude because I was not overly friendly. And in high school a lot of the girls thought I was a snob. I felt confused and hurt by this in both cases because it seemed so removed from my inner reality.  I had to learn so much – teach myself so many things about how to behave so I would not get that reaction. And yet, to some extent, I still get that reaction despite having worked on this so much.

Being bicultural gave an alternate explanation for a lot of my problems "fitting in." If I didn't fit in with my Dominican family, it was supposedly cultural. If I didn't fit in with my New England white co-workers, it was also supposedly cultural. But after I discovered autism, it made much more sense why I have never fit in anywhere.

Some of the aspects of Dominican culture that might have made my autism more hidden (when in the context of the dominant US culture) are things like interrupting conversations, blurting things out, being too honest, and talking too loudly or too softly. For example, I exhibit all these things at work, and they always made me stand out in that context, but not among Dominicans.

E: What has been most frustrating to you in regards to how you might be perceived by others who share the same cultural heritage (do you feel you have to cover up, hide, or overcompensate for being on the spectrum)?

Isabel: I don't live among a lot of Dominican people anymore, so it's hard to answer. I think in both my cultures it was frustrating to be misunderstood. It's frustrating to have people put expectations on me based on how they think and perceive the world and to assume that I perceive the world the same way. Because I have been successful in academics and work, people expect more of me. Parenting has been very challenging for me and it's been very hard to always have people say, "Why don't you just..." or "How could you let.." People expect me to be a certain way or assume that because I have a certain outward appearance that certain other things should be easy or be common sense. It's frustrating that what is common sense to some is very hard for me and really needs to be broken down in ways other people I know cannot seem to fathom. I guess my sense is just not common.

E: Do you know anyone else of color, on the spectrum, who has also expressed similar cultural struggles?

Isabel: No, only the people I have read about on your blog and maybe a few other blogs. But I have seen very little even in blogs about people of color. Most autistic blog writers seem to be white. I would love to read more from people of color on the spectrum, especially adults and people my age.

E: In general, do you feel a healthy percentage of Dominican parents are likely to look into further diagnostic testing if either they or others (e.g teachers) notice non-standard development in a child?

Isabel: The kind of behaviors I had I'm not sure would cause either Dominicans or non-Dominicans to seek diagnosis--even today. I wasn't a disturbance to anyone. I wasn't a problem. Adults loved me. Teachers loved me. I was often set up as a "model," which made me uncomfortable. I don't think the field of diagnosis and diagnostic follow up has caught up with kids who are similar to what I was like. Other autistic individuals are likely to be treated differently, especially if they are more easily identifiable. But even there, I think because of economics, Dominican parents would not have the resources to get the kinds of diagnoses that whites can get for their children. I think the differences from the "standard" would have to be more severe for Dominicans to get help. Based on what I'm reading on parental blogs, the kind of intense help and attention that autism spectrum kids are getting is probably not fully available to Dominicans.

E: Do you feel accepted and understood by the Autistic community regardless of your cultural heritage?

Isabel: It seems like in some ways being autistic itself is a kind of culture. I feel I have so much in common with people in this community, that I can't help but feel identified. When I received a diagnosis, I emailed Rachel Cohen-Rottenberg to let her know and to thank her. She asked if she could post my response on her blog and I got a lot of nice welcoming messages. On the other hand, I feel that a lot of people in this community have limited cultural perspective in general and sometimes I wonder if some of the things that are assumed to be true of all or most autistics might really be more indicative of European-heritage autistics.