~Rumi

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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17 October 2010

World Autism Interviews: Socialworks/Toronto, Ontario


Socialworks is a single mother of one child. She has a Bachelor's in Social Work with a minor in Public Administration, as well as a Master's in Social Work. She spends her time in community advocacy, namely accommodations and housing education. Socialworks is the Organizer for the Toronto Autistic Adult Network self-advocacy group, which started up in 2009. She enjoys cars, chess, home renovation projects, listening to all kinds of music, mechanics, and soccer. She's also a Star Trek fan (except for the most recent series).


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

Socialworks: I was 29 years old when I received a diagnosis. I was treated for depression and anxiety, and after being put through a bunch of medications that did more harm than good, I was assessed as having bipolar disorder. I did nothing with the diagnosis because it meant nothing to me. I was unable to see the mood swings that were supposedly evident in my vague generalizable answers. When I joined a local bipolar group and heard the stories and difficulties people lived with, it was then I knew I was not bipolar.

After having a 'meltdown' that landed me in the hospital, it was almost impossible to get professionals to listen to me because I was a "person with bipolar disorder." When asked what I needed at the hospital, I mentioned that I could not go home. They never asked me why. They didn't ask what I was reacting to. I was simply "bipolar."

I was put on medications again. But my routine was interrupted when the pharmacy fixed an error in the dosage and didn't tell me. I was functioning at a basic level, and with that medication change, I ended up in the hospital again a week later. I knew it was a medication switch, but no one was listening to me. In retrospect, I could have died because I was being given medications intended for individuals who are bipolar. Instead, I was autistic and didn't know.

Since I live alone, my family had no idea what was going on.

Months later, I decided to examine the root causes of my issues and the things I have difficulty with. I had to identify social norms and redefine the obstacles I was facing. It was then that I found my issues to be sensory related and went on to seek non-medicated ways of addressing the issues.

I was diagnosed during a three-session Cognitive Behavioural Therapy assessment for anxiety and depression.

Unfortunately, I had to struggle with the doctor to get the diagnosis because the doctor felt that labeling me wouldn't do much, and that there wasn't really much support for adults with Asperger's. I didn't care. I wanted the formal diagnosis so I could decide for myself what it was I wanted to do with it.

My family has been neutral about the issue. They have little to say and don't seem to be too interested in understanding. I don't think they believe me because I have been able to accomplish many things. Autism is apparent with other family members who either have persevered and have not experienced systemic difficulties that would force them to take a second look, or they live in environments where autism is never discussed.

I have also been bullied by relatives who don't understand Asperger's, and likely never will because I have chosen not to disclose to them for my own safety.

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

Socialworks: It is definitely considered taboo in African and West Indian-Canadian cultures. Many times, children with developmental disabilities are ignored, and when you are raised like that, 'coming out' to family is an uphill battle. Oftentimes, adults are mocked, ridiculed, or belittled. And the more we speak, the more familial disdain becomes apparent. You're not just outing yourself, you're also outing your family. There are few spaces to talk about disabilities in the African-Canadian community.

Although I have autistic members in my family, I wouldn't consider autism open for discussion. There are fears of labeling yourself or being labeled by others that, historically, we as a community have tried to get away from. It just is what it is...hidden.

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

Socialworks: In my family, being seen as a strong individual has oftentimes made it difficult to be heard. Subjectivity plays a huge part in how my family understands my difficulties. I tend to keep it to myself instead of trying to get them to understand. I can speak, but speaking is not my first method of communication, as it is quite tiring. Add in the emotional piece that exists (even if you can't tell) and the whole experience can leave me unable to function afterward.

In regards to being misunderstood, I find that the old "You don't act autistic" attitude exists within my family. Sometimes my autism is hard to see. I've also focused a lot of energy over the years trying to fit in. I lived with a belief that such challenges (of fitting in) was a skill that would be beneficial to have as I moved forward. It got much harder as I got older.

My family doesn't see me when I not 'on' for the most part. They don't understand why I spend so much time at home alone, and why I don't react positively to spur of the moment invitations outside of the home, or to invitations to most social gatherings. My family never asks, and only recently did I know what was really going on myself. I grew up being called antisocial, selfish, narcissistic, "having emotional issues," strange, weird, etc.

My behaviour is what has been misunderstood for most of my life.
My family doesn't understand why I won't go certain places, why I can't work in certain spaces, why I'm a picky eater, why I feel cold most of the time, why I don't speak much in groups, why I carry all of my heavy grocery bags at once, why I go grocery shopping rarely--and only during the wee hours of the morning, why no one really visits me, why I've worn dark coloured clothing most of my life, why my walls are virtually bare, and why I seem to avoid most things others find appealing.

They do not understand, and I no longer see much of a benefit to them gaining an understanding. It's important to be understood to a degree, but it's more important to understand yourself. It is only then that you can decide for yourself who you want to be. Anything less (i.e. being defined by what other people tell you you are) tends to hurt the self-esteem.

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)?

Socialworks: I think the fact that attitudes and assumptions are the same, if not more, by others who share my cultural heritage. It is frustrating to try and share a part of your identity when doing so sometimes closes the doors to being seen as a human being, or "more than just [this or that]..."

I will say that I have been in various spaces where, based on discussions--which had little to do with ASD--it was clear that I was not in a safe place to be open about myself. Hostile discussions around gender roles, sexuality, race, cultures, education, and the reinforcement of linear thought around these issues have repeatedly told me that if I speak out on any of these topics, my social location alone would set me up for a battle I can't say I am always up to fight.

For the most part, I feel neutral about it all. The only times I get heated is when my apparent neutrality makes it difficult for others to believe me when I say I am experiencing some sort of emotional difficulty. Then I feel frustrated. It is then, and only then, that I wish I could better communicate my feelings so as to avoid the doubts of others.

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

Socialworks: Yes, I have met other people of colour who have a diagnosis of ASD, and we share similar struggles. Our age differences, access to opportunities, and general life experience may play a role in how we internalize societal pressures to hide or fit in, but the issues are the same.

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

Socialworks: The scars of black children being labeled in the school system and streamed are still there, so many parents are hesitant to seek a formal diagnosis for their child, and when they decide to, service providers rarely approach assessments with a deeper understanding of the complexities around disability within culturally specific groups.

It can be tough for any parent to accept that their child could be having difficulties. I do not believe that more parents will look into further testing without community outreach. If parents seek services through the school, they have to keep in mind that schools are not necessarily eager to swallow the costs of assessments. In addition, once a child has been assessed, the school must take action. Add the fears of the parents, and the fears of the school being seen as labeling another black child and/or labeling too early in the child's development, and nothing meaningful really happens.

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

Socialworks: I do know that I have not felt rejected by the Autistic community because of my cultural background. At the same time, I don't feel included. I see it has another dimension to the third person perspective I find myself in most of the time as an Autistic adult.

E: Is there anything I have not asked, you would like to share?

Socialworks: The most frustrating thing is that people rarely ask why. If we begin to ask why, and if we value the lived experience of individual persons at least as much as we do those who perceive, we could dispel a lot of misconceptions. We need to take into account some of the cultural attitudes we have around autism and disabilities, as well as open up spaces for understanding and change. We need to help others fight for and access needed services in ways that protect the dignity of individuals, as well as their families and communities.

3 comments:

  1. Thanks for the great interview, Socialworks!

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  2. Thank you. This is so good to read. I am Dominican and American, 46 years old, and have just been diagnosed. I am glad to see you bringing up questions of culture in this blog and in this interview. I also felt that it was very helpful to have a diagnosis especially after many years of trying so many things and diagnoses that did not fit what i felt was going on inside me.

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  3. Thank you for stopping by, Isabel! I agree that discussing the many diverse ethnic backgrounds, cultures, and heritages of people on the spectrum is of great importance. All my best to you and yours!

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