An Open Letter to John Elder Robison

Dear Mr. Robison,

We have a couple of mutual friends, or so I am reliably informed, and we share the same neurology. While I dislike the tendency of NT society to turn to you almost as a default when they need an autistic person to speak on something, that is not your fault. I’ve even read Look Me In The Eye and found lessons and stories in it that I’ve been able to apply to my own life, for which I am grateful. You write extremely well.

Your clear ability in that medium is one of the main reasons I was angry, frightened and offended by a recent article about you. The article appears to have been written with your full cooperation, and it is entirely plausible that the reporter misquoted you or embellished what you have said in order to craft a more plausibly heart-rending narrative (it is April, after all). But, as you are a grown man, responsible for your words and deeds, I have to hold you to account as well as the reporter.

“What It’s Like To ‘Wake Up’ From Autism After Magnetic Stimulation” (no, I refuse to link it) was the title of an article I was linked by a friend today, dealing with your experience in transcranial magnetic stimulation (TMS) as a method of “treating” autism. I refer to it as a ‘treatment’ because you did, incidentally, though I would question the wording. The headline, which I can assume you had nothing to do with (just knowing how newspapers work), is hideous enough – autism is not a coma; it is not a disease or a sickness in the colloquial sense. One does not “wake up” and the metaphor is appalling in its ableism. I read the article to see if it would be better than its awful start.

In that article, the reporter, Alexa Tsoulis-Reay, begins by detailing how “disconnected” you felt for many years. Really laying it on thick. Going out of her way to mention that “for a long time,” autistic people were viewed as if we were robots (as if there aren’t still so many people who believe that to be true, and gaslight those of us who show empathy and emotion!). In the end, after describing what TMS does as a tool for autistic people to “deepen their emotional intelligence,” she refers to you as “momentarily crippled by the weight of other people’s feelings.”

Mr. Robison, throughout the rest of the article, you refer to autism as something that “caused you considerable pain,” as giving you “problems with connecting people.” Ms. Tsoulis-Reay asks you questions that appear both leading and patronizing at the same time, such as “So you don’t feel you lacked empathy before?” or “So it’s not as if you didn’t have feelings …” I genuinely am sorry if an inability to read people has caused you so much pain. I hate the idea of a member of my neurotribe suffering because they lack a skill that this ableist society has decided is integral. But there are two points that need to be made here, neither of which you may be aware of, that culminated in making me so frightened and angry that I stayed in bed for hours after reading this article. You and Ms. Tsoulis-Reay appear to have made two significant errors that may adversely affect autistic lives in the future, and I am not able to stay silent on that score.

Frankly, we suffer enough.

The first point is that for much of this article, I noticed that what seems to be lumped into the category of autism and autistic symptoms is actually alexithymia. Alexithymia is not a diagnosis, as the excellent Cynthia Kim explains; it is a construct used to categorize those of us who have severe difficulty labeling emotions. It doesn’t mean we don’t have them. It’s just that we can’t tell people accurately what they are.

I love the way Cynthia explains it. There are three parts to alexithymia: modulation, determination, and discrimination. We often have trouble modulating the strength of our own emotions (for example, appearing coldly practical when someone gets hurt, or being emotionally gutted by something that NTs would ignore). We often have trouble determining how other people are feeling, and this is arguably worse in autistic alexithymics since we can’t read nonverbal cues. And we often have trouble determining when someone is just expressing emotion, versus expressing it at us.

Mr. Robison, a lot of what you two discussed is alexithymia, not autism. And I was angered and saddened by your statements about your reaction when someone is hurt – it is not a crime to react practically. It is not a crime to focus on what needs to be focused on. Yet you kept dogmatically repeating lines like “empathetic response from personal experience.” As if wanting to be practical when someone is hurt isn’t an empathetic response – how is wanting to alleviate a loved one’s pain not empathetic?

I am alexithymic. Sometimes I cannot discern my emotions beyond “good” and “bad.” I am blessed to live with someone, and have people in my life, who are patient and understanding – who know if they give me time, I’ll find the words, or the pictures, or whatever accurately describes the emotion. Once or twice I’ve used sounds. My difficulty finding words for emotions does not mean I lack such emotions, though I should likely be grateful that this quasi-libelous idea was not brought up by Ms. Tsoulis-Reay.

My point is that my way of communicating and existing is valid. It is entirely okay to interact with others in such a manner. You do not appear to agree, as all your responses and articulations in that passage of the article could not be more redolent of internalized ableism any more than if one had sprayed a particularly pungent cologne. If someone lacks the empathy and understanding to grasp that I communicate slightly differently than they do, or the patience to reach me, they are the ones who require a “deepening of their emotional intelligence” – not I!

This brings me to my second point. While you never asked for it, and I am aware that to a degree, this is out of your control – when you speak, people listen. (Except, apparently, for the board of Autism $peaks!)  Therefore, you have a responsibility to consider your words and to ensure, to the point it is possible, that you do not misrepresent our community or expose it to danger.

Temple Grandin is another autistic person in a similar position, and frankly, I do not believe she considers the greater autistic community in her thoughts and public statements. She has said extremely ableist things about those of us who need more support, stating that those who are “low functioning” (when such labels are ableist to begin with) should be cured, while the “high-functioning” among us should be allowed to thrive. Such statements harm the entire autistic community, because they are used against us. “One of you thinks this way!” we hear. “She’s autistic, so you have to be okay with how she thinks!”

No. We don’t. And while you are of course entitled to your personal opinions, it is imperative that they be presented as such. Whether the fault of Ms. Tsoulis-Reay or yourself, this was not done. That entire article is rife with leading questions and statements, barbed insinuations that all autistic people should undergo TMS and be able to experience the same world as neurotypicals. Even in the passages where you described the unimaginable pain it caused you, this was framed as a good thing, a necessary thing by rhetoric and word choice. While such a ‘treatment’ may have been beneficial for you – which I’m truly glad for, make no mistake – there are many, many, many of us who do not fit your narrative or your place on the spectrum itself, and this article did not do enough to underline that fact.

You stated that you did not believe this therapy to be a cure, as it does not change who someone is, but I would have to disagree. A cure for an inability to read social cues does change the very essence of who someone is, especially when they feel as strongly as many autistic people do. And that is a very problematic slope to begin to slide down.

I fear, genuinely fear, a future where I will have to change my brain in order to interact with society. I instinctively rebel against such a fascist ideal – neurodiversity is one small part of the diversity of humanity, and to squash a square peg into a round hole does nothing but damage the peg. But laymen reading this article will lead to increases in parents thinking “well, this will fix him/her/hir.” It will lead to increases in autistic suffering.

Also, Mr. Robison, while I don’t intend to make this personal or insult you, you have missed one truth: I know many, many autistic people – primarily women, for what it’s worth – who are as empathetic, as warm and who feel as much as any neurotypical. I would count myself among them. And most of us have had to work, and learn, and experience to get to this point. There are other ways to learn tact, gentleness and unity besides submitting to Clockwork Orange-style ‘adjustments.’

I wish you well, sir, but this article is not something I can appreciate, nor can I in good conscience think it should have been written the way it was. Regardless of whose fault it may have been, this article does more harm than good in terms of humanizing us, in terms of making the average neurotypical realize we are just like them inside – we may be Japanese speakers, and they may speak English, to use a metaphor, but we are all human. Autistics and alexithymics need and deserve the understanding of a society able to use our strengths and accept our weaknesses – not a deliberate and focused hunt to eradicate a fundamental part of what makes us who we are.

Regards,
CC

Advertisements

3 comments

  1. here here or is it hear hear?
    Regardless, there seems to be a pattern to the things Mr Robison says and that pattern strikes a chord of ableism to me.
    I don’t think I read that actual piece your refer to, however I did read a piece that he himself penned and it was horrid ableist bullshit.

    1. It is, and always has been, hear hear. It was a way of stating extreme agreement with the speaker.

      As soon as you, CC, mention Robison saying “waking up” from autism, I feel livid. Livid like I feel toward Bob De Niro, whose films on BD that I possess now have a date with my fireplace.

      Small wonder, then, that one of my writing projects concerns itself with a superhero whose powers revolve around sucking up what people feel and transferring it to others. If Robison got a headful of what writings like his make me feel, he would cut his own face off because seeing it in the mirror would make him feel that sick inside.

      I do not need “waking up”. Since diagnosis day, I have felt more alert, aware, and conscious of how despicable can be, than ever before.

      Robison is an example of why we need an Autism Civil Rights Act. I used to sau it would provide for us to deny normies the ability to speak about autism without our revocable permission and ability to rebut. But now it should also provide us with the option to say that this person who claims to be autistic is persona non grata and thus disallowed from speaking about us.

  2. Thank you CC for this brilliant letter. I hope JER is reading and listening. He’s crossed a line and I’m so glad you spoke out. I feel his blend of dabbling with neuroscience and memoir on top of his standing as an advocate is misleading and dangerous for autistic people.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s