Before the walk: 22 February 2019

Two years ago, I wrote about cognitive dissonance. I was stuck in a limbo between wanting to live and wanting to die. Later that month, I took a 5-day trip to my Walden, first flying to Melbourne and then a coach to Toora in the South Gippsland region and began my 3-day walk of the Great Southern Rail Trail. The walk brought me back to life. I figured dreams are worth fighting for even though during the process, you may get discouraged and exhausted. I’ve not forgotten that. I’ve not forgotten my dreams. I’ve not forgotten the sights and memories of the place I love. It’s just especially tough for the past year and I’m slowly rotting away in this decaying city, fighting for what I don’t even know, who knows maybe this is all my imagination, I turn everyone into my imagined enemies, an invisible voice in this universe. I really miss you so.

A letter to my fellow autistics

To my dear fellows in the autistic communities, you may not realize but I am one of yours, albeit separated by geographical distance and ethnic differences, but I feel your pain when I hear people in the communities talked about the abusiveness of ABA treatment, I feel your anger when people speak of the hypocrisy of Autism Speaks and I feel for the injustices suffered by Black persons and People of Color in the autistic communities. I know these are topics that invoke strong emotions and controversies so I am careful about raising questions on these topics for fear of triggering negative emotions and arguments. Privately, I’ve attended ABA seminars held in my country to learn more about how ABA is said to be effective in helping people on the autism spectrum, and why is it that parents send their children to ABA. It is not that I don’t believe what autistic people say about ABA and Autism Speaks, but in order for me to engage with others in my local community, I have to first understand it myself. As much as I dislike the principles of ABA, I have to say that there’s nothing much I can do or say to convince people why it is bad. You see, I am geographically located in a country where ABA is gaining traction. I also belong to a culture where obedience is a virtue. And in this country I live (Hong Kong), neurodiversity is a foreign concept. Separately, I was horrified when I learn that the local university where I am studying collaborates with Autism Speaks to deliver interventions (not ABA), don’t they know that the organization has a bad reputation among autistic people? But I realize there is no one else sharing my anger and horror, not in this country and not among the online autistic communities I belonged to because what happens in my part of the world is too insignificant for them to understand and I am just an invisible member in the online autistic communities that is dominated by Western-centric voices. Your reality does not accord to my reality (and vice versa). I learn that I can’t just react with anger like everyone else in the autistic communities do when someone brings up a controversial topic because anger is a bar to further communication and serves no purpose to raise autism awareness and understanding. Moreover, in a country where autism awareness and support for autistic people is lacking, who am I to judge parents for their choice of intervention? I was also getting increasingly frustrated with the divide in the autistic communities and the insistence, by some, on using the identity-first language on the ground that it is the preferred terminology of most autistic people, which I see as merely another form of minority oppression. As a result, I find myself increasingly distanced from the autistic communities, I felt left behind by the neurodiversity movement, which has a strong online but weak global presence. I am still doing the best I can to raise awareness and acceptance of autism where I am but without any allies, it has been a lonesome and tireless journey.

I am a doctorate student looking at how stigma and discrimination affects life outcomes and well-being of adults on the autism spectrum and I recently presented my proposal as part of my probationary requirement to our department committee members and students. I started by saying that I hope my presentation gives them an insider perspective to autism. I made it known that the challenge of doing research on stigma and discrimination is that the people I want to convey my results to are not the ones to whom my research is about but the people in the audience, the ones who belong to the dominant culture, the ones with power and privilege, and in the context of my presentation, researchers. I talked about how the medical model of autism and its focus on deficits contribute to the stigmatization of people on the autism spectrum. I gave examples of misrepresentations of autism by researchers, including a few local examples. I talked about how the implicit bias of researchers can cause harm to autistic people. I talked about how persistent deficits in social communication reflected a gap in mutual understanding between autistics and non-autistics. I talked about the challenges that autistic people face as a result of living in a less than accepting society. I admit I spent more time than necessary to address the above issues, I ran out of time to talk about my methods which I only briefly went through. After that, we took questions from the floor. The first person questioned about my choice of using an online survey and then suddenly, almost every question expresses a concern about the suitability of using online surveys for people on the autism spectrum as though I would choose a method that would not work for autistic people. Where did they get the notion that autistic people can’t do online surveys? I wonder. Okay, I don’t want to be accused of twisting their words, no one actually used that exact wording but somehow, they were questioning that online surveys are not an appropriate method for autistic people because they have difficulties responding to questions. I did mention, in my limitations, that the use of online surveys may exclude those with more complex support needs, nonetheless, why did they think online survey is inappropriate as a research tool for autistic people? If I were to come up with an excuse for them, alright I was nervous, I spent too much time on other sections of my proposal, I did not justify my methods well. It was a mandatory requirement for each of them to ask a question so they might have just picked up from the previous question and asked the same question. They had difficulties formulating the question, they could simply ask why did I choose to use online survey as opposed to other methods, rather than questioning the legitimacy of online survey as though they knew more about autism and the needs of autistic people more than I do. Is this the reason why there is a lack of research about autistic people in Hong Kong? Because researchers think they can’t answer questions, they can’t respond to surveys, they don’t speak, they don’t communicate? I should remind myself to add presumed competence to my presentation next time, whenever that is. And then people were commenting that I focused too much about the negative experiences. To be fair, I think what they were trying to say was that I should also look into the positive aspects (which I am but that was not the major point in my presentation). The reason I found this comment ironic was that it seemed like a double standard, they were the ones looking at autistic people through a deficit lens, not me. And I got the feeling my reviewer wasn’t happy that I criticized the lack of research on autistic adults in Hong Kong because that is an indirect criticism of the work they are doing (which focuses on interventions for children). My criticism, however, is grounded in evidence, based on systematic search of academic databases for publications of autism research that were conducted in Hong Kong. The reviewer hinted at my poor time management, fair enough. Some of my readers may recall my negative experience with the autism project team in the faculty. If I look at it from a more positive perspective, it is good to let them know that I exist and what I am purporting to do, that I am following what they are doing and that I am not afraid to speak up against injustice.

I passed my probation but clearly, there is so much more to do to raise autism awareness and acceptance in this country. I am reaching out to the autistic communities out there because I don’t know how much longer I can do this on my own, without the support of fellow autistics AND non-autistics. If you are an autistic student or researcher working in the academia and would like to share your experiences of stigma, prejudice and discrimination in the academia or simply to offer support, please contact me or leave a comment below, I am interested in collating stories of the challenges faced by autistic people in the academia, particularly with the medical model of autism. If you are an autistic advocate, don’t forget about the minorities in the autistic communities. It is not neurodiversity without intersectionality. If you can help, please share or reblog this, or else I am just an invisible voice. I shall also be reblogging this in my old blog, as I have more autistic followers there. Thank you for reading.

The good and bad

Just a quick update to say I am fine, thank you all for your well wishes. I think it is fair to say that the reviewer and I dislike each other. But that’s fine. Despite all my anxieties and nervousness, I wasn’t worried that I would fail. I know people give face to my supervisor, and that is my privilege. I am going to pen a post about my presentation. Suffice it to say for now, for a topic on stigma and inequality, I felt discriminated against. And I know that this is a common experience for autistic students/researchers in academia. Clearly, I failed in my mission to raise understanding of autism. I’m hurt but fine. It wasn’t an entirely bad day as I talked to someone else in the department after my presentation who is supportive of me and I had lunch with an old friend today. If not for them and my friends here, I would have felt terribly worse.

In less than 24 hours…

would be my presentation…. I’m excited, nervous and anxious. It might not be the right occasion, but I am also hoping to use this opportunity to raise understanding of autism amongst my department. Dear oh dear, please be kind.

Presentation postponed

My presentation was originally scheduled for this Friday but I’ve requested to postpone it till 3 weeks later. Although I submitted my proposal last Friday, that proposal was done in a rush, there were details that I missed and didn’t explain well. When they set the original date, I thought it would be a rush, but I agreed with the date to take up the challenge. My anxiety back then was in part due to the lack of time. My supervisors didn’t think it was a good idea to postpone because they think I will delay it to the last minute. I wasn’t convince with their explanation though because I will still be within the probationary period if I do it next month and if they insist on me doing it this week, it just means I have to rush through the next few nights to prepare for my slides and presentation. I was nearly at the stage of burnout when I rushed to finish my proposal last week, I didn’t want to go through that again this week. Besides, who wants to postpone their probation if they can finish it on time? I must have my legitimate reasons for wanting to postpone it. I’m still anxious but not as bad. It’s stressed I am feeling now and a bit of resentment that nobody understood why I have to do this. I feel like they are trying to make students guilty for postponing because they have to inform everyone involved. But you know, I’m tired of always feeling guilty or apologetic, I still apologize for the inconvenience caused, but I’m still going to assert my entitlement and my right to mental health, even if it means putting up a fight.

Santa Claws is coming to town

Thank you everyone who read or left a word of encouragement in my previous post. I am still anxious and scared like my heart is popping out but at the same time, you have given me some strength. I haven’t been a very good friend or diligent blogger this year. I haven’t kept up with your blogs and I haven’t been checking my own inbox, and the longer I put it off, the more anxious I become. I’m sorry if I have ignored your messages, please forgive me. I really really miss Walden, and it really hurts me that I can’t be there. If you understood the very motivation driving this blog and the reason I live, you might understand that pain. I’m sorry for my absence this year and thank you for continuing to follow me despite my lack of activity. I seldom post pictures of my cat here but I will do something different this year. Merry Christmas to everyone, from my cat, Happy to you.

Have a safe and blessed Christmas! 🎄

Nerve-wracking

In about a month’s time, I will be presenting my research for the end of my probationary period. And I’m scared. Depression feeds on my enthusiasm. Anxiety freezes my brain. Adding to that, I’ve just been informed that my supervisor invited someone from the department to be my reviewer. He chose that somebody because he thought she had the most relevant experience doing research on autism. For those who don’t know or remember, I did not have a good experience with the team in our faculty that is doing autism work. The ironic of all, my research is about stigma. The stress is killing me, I don’t know how but I have to overcome it somehow. There is no other way. I have to push myself. I have to sleep less. Be tough, be strong, be brave. I can do this.