A Letter to Jeanafer

Leo Jones posts A Letter to Jeanafer on Neurologic

Disclaimer: This piece does not apply to all parents nor all my friends. If you're worried it might, you can e-mail me at neurologicpodcast@gmail.com; I welcome such conversation, and the willingness to examine one's self after reading this letter is a significant sign that such worries are misplaced.

I've wanted to write this for at least five years, possibly more. It has harbored a place in my mind, changing shape but inherently being the same message. Even now it took over four months to finalize, and I'm still aching to tweak it.

Unfortunately it's hard to articulate that message in a way that is listened to, accepted, understood. I know the reaction will be so insecure, so angry, so emotional, that before it's processed, it gets rejected.

But I have to get this out. I have to document this, expunge it from my system, at least once.

Jeanafer, I do like you. I think you're a quality human being whose heart is in the right place; you work way harder than what is expected, and often are not paid more than lip service for it. You care deeply for your family, and you put them first. I have learned from working with you, and despite what I write here, I would be willing to do it again.

But I need to set some things straight first.

You and I keep hitting the same repeated arguments when it comes to autism - more specifically, autistic civil rights, neurotypical parents of autistics, neurotypical-led autism charities, and the issues that surround these topics. While we don't always agree, I keep on thinking that if I explain it well enough, describe it well enough, parse it down enough, that somehow that will be..well, enough to have you understand. On some topics this has changed - but mostly, it ends up devolving to an online screaming match, and I end up walking away feeling worse, feeling like I have failed both you and the autistic community.

What sticks with me is not the issues themselves, but what you've said and written.

“I wish my kids could be as expressive as you are and do half the things you can do, but at this point in their life they cannot.”

“I think some parents wish their kids were like you and it is hard for them because they are not at where you are at.”

You've told me why you left Autism $peaks - not because of their terrible, bigoted stereotyping of autistics, not because there was no one autistic on their board of directors, not even for some of the more callous, abysmal and exaggerated propaganda pieces (I Am Autism, Autism Every Day, etc) - but because they centralized all funds raised by local chapters instead of keeping the money local. And while you've gone on to state that you definitely do not agree with them based upon the above, I cannot be sure where you would stand today if the funds raised local had stayed local.

But I bring up these two specific quotes not only because of their emotional impact, but because they are commonly repeated to me by other parents - often used in conjunction with words like ‘inspiration/inspiring', ‘well-spoken’, ‘put-together’, or some semblance of not being able to ‘tell’ that I'm autistic.

When someone says ‘I wish my kids were like you’, does this make you feel good? Are you complimented, does it come across as flattering?

I’m seriously asking because for me...it never, ever feels that way.

I know that the intentions may be good by the person stating this; it's why I work to avoid responding in a negative or hostile fashion, eke out a smile, and either ask them ‘why?’ or redirect the conversation elsewhere. It has never felt like anything but a punch in the gut for me. It makes my stomach drop, as though I were standing on the edge of a bottomless pit with no railing or safety.

And then comes the realization that the person I'm talking to clearly doesn't know me at all - and instead of wanting to, has decided that they have me figured out; that they ‘get’ me. No matter what is discussed afterward, this thought stays prescient in my mind. It's not that they don't WANT to know more, it's just they have seen enough, and anything beyond that doesn't apply or fit their personal narrative of the individual they view in front of them.

Worse yet is when I think of their kid, and how they're being compared to an adult. What child would be able to rise to such impossible standards? Does the child even know they're being judged by a clearly faulty comparison?

Unfortunately, instead of coming correct and chewing the parent out for this pseudo-compliment that demeans their child, I end up not saying anything. What good would it do?, I think. Should I tell them about the struggles I had growing up, how they mirror their own child's issues, and how - even as an adult - I still have difficulties in daily life?

That last question is an easy one to answer - absolutely not.

It's bad enough to get treated as some sort of ‘miracle’ autistic, as the idyllic autistic offspring the parent wishes they had - but can you imagine how I'd be treated if that mask dropped?

Well, I know. And it would be silence. Massive amounts of silence. And not the soothing silence of one's home or headphones - no, the uncomfortable silence that comes from an abrupt end to communication, socialization, inclusion. No longer given responsibility for significant or important tasks, not taken seriously when expressing an idea, thought, or opinion, and relegated to a shallow acquaintanceship that never establishes bonds of legitimate trust.

But Jeanafer, I'm exhausted. I'm tired of just sitting or standing there and taking this gut-wrenching, so-called compliment. And though I maintain a job, pay my bills, cook my food, save money, have lasting friendships with people who truly care for me as much as I do them - referred to in common slang as ‘adulting’ - I still face difficulties as an autistic adult.

And even though you have an autistic child, the fact that you compare them to me truly reinforces the fact that you don't know what my life is like.

You don't know the days I've taken away from work because I just don't have the spoons to leave the apartment.

Or when I'm so unable to function I can't even put on a fucking sock - not a pair, just one goddamn sock.

Or the days that I'm so depressed I consider suicide.

You don't know the days where I spend hours thinking that I don't truly have friends, but people that merely tolerate me.

Or the days where I can't remember anything, especially people's names or dates or events, etc.

Or the days I have literal trouble speaking and socializing, coming across as silent when I don't want to be.

You don't know the days where I have the overwhelming urge to clean everything, draining me of spoons to where I can't do anything for days afterward.

Or the days where my adrenaline levels are so high I can barely string words together in a coherent fashion, trying to come across as calm and factual, while my brain speeds on, my hands and my body shaking as it courses through my veins.

Or the days when I physically stim because I'm incredibly happy and pleased with something, especially an accomplishment - even when it's something minor, like successfully trying a new recipe or getting all the tasks on my to-do list done in a day, or just enjoying something fully and in the moment.

And you don't know every single day, wearing my mask so much that I honestly am unsure as to who I really am or what I would be like without it.

Honestly, I'm afraid all you've ever seen of me is that mask.

I know you've heard of masking, and I want you to know it is a seriously real thing. I knew about it before I heard the term; taking each social situation and conversation and piecing together the unwritten rules, guidelines, taboos, norms, rituals and embedding them through practice and application. Years of this created a much more accepted person based on the restrictive society, at the cost of my own mental health.

As a child, I was desperate to be accepted, to have friends, to be included - because to do otherwise meant isolation. I forced myself to learn to behave like others behaved. Early on this resulted in a lot of trial and error - more error, because imitation and replication come across as mockery, and some people's behavior only works for them. It was hard, tedious and at times I never thought I'd figure it all out, at least not to the level I'm at today. I spent my college years getting an education in social relationships this way; and despite taking twice as long to earn a two-year degree, I'm glad I was able to learn how to make friends.

But it comes at a mental cost. Do I let my autistic tendencies out? Do I even know, truly, what they are? Will they be accepted/accommodated in all areas of my life?

What I do know is this: you do not know me. At least, not nearly as well as you think you do. And the fact that you refuse to acknowledge the person behind the mask - beyond your assumptions, beyond even the passive jealousy you have regarding my independence and advocacy - is increasingly eroding our once respectful and platonic relationship.

You admire and cherish the mask rather than the autistic behind it, and I'm weary of wearing it.

So I'm not going to, at least not around you, anymore. Maybe one day you will learn to accept me at face value; but considering the reality of masking that autistics deal with on a daily basis, I don't have much hope.

Unmasked regards,

Leo Jones