what I want to tell you 

I want to tell you about how the last few mornings, Brooke has come into my room and woken me up by putting her head on my chest and staring me awake. I want to tell you how it’s been the greatest way to start each day, and how, no matter how hard the night before, how it’s filled my tanks to overflowing – this gesture of love and security and, yes, even need. 
I want to tell you that we’ve had some tough nights around here lately and that this little morning ritual has meant even more because of it. 

I want to tell you that this morning, Luau came in not long after Brooke had woken me up and said with a gentle smile, “There’s a latte in the kitchen for you when you’re ready,” as though he hadn’t walked over a mile to The Bean to get it. 

I want to tell you how he then brought a beautiful plate of meticulously sliced fruit out to the patio and said, “Don’t let the world get too far in, babe” as he placed it on the little table in front of me and walked away. 

I want to tell you how grateful I am for your presence here. How much your words mean, even if I can’t tell you that each and every time. 

But there’s something that I need to say first. Something that’s been weighing on me. 

It’s this …

Autism is a disability. Some may prefer to call it a difference. Some like to call it a superpower. I respect both and will shout to the heavens any and every autistic person’s right to define and describe, bemoan or celebrate their neurology as they so choose. 

In our house autism can be all three – a disability, a difference AND a superpower, often all at the same time. 

But even on the superpoweriest of superpower days, there is no denying that in today’s world, the one in which my girl currently lives and is forced to navigate day in and day out, autism is disabling. For some, it is far more disabling than others. For many, the degree of challenge changes from day to day, moment to moment, environment to environment. That’s true of all of us, isn’t it? Humanity’s strengths and challenges are not static. Autism doesn’t exist in a vacuum. No part of the human condition does. But, without question, autism makes the contrasts particularly stark. 

When I speak up to help raise the voices of autistic people who do not want a cure for who they are, I do not say not ever, ever, ever mean to imply that those same people do not need help. They do. And many of them need it desperately, urgently … NOW. 

When I say that our autistic children and their adult brethren need to be celebrated rather than feared, when I plead for respect for their dignity and humanity within the context of our discourse both public and private, when I say that no one should refer to the sentient, bright, beautiful human being standing right in front of them as missing, a burden, or Heaven forbid, say or imply that they would have been better off never having been born, I do not mean nor have I ever meant to say that they are not deserving of, and in need of, our support. Quite the opposite in fact. 

We distance ourselves from what we fear. We isolate ourselves from that which we are told by those who we assume know what they’re talking about is so different as to defy our understanding. We, inadvertently or not, devalue human beings when we share intimate details about them and their hardships that we would never dream of sharing about our own. 

And so I try to change the method of discourse. Because we support those that we believe capable of benefiting from our support. (Hint: that’s EVERYONE). Because we include those we have learned not to fear. Because we embrace those who we would never dream of denying are right here in front of us, taking it all in (even if we, with our limited capacity for observation, can’t find the proof of their understanding that we insist on demanding.)

Our autistic children and the adults who came before them need our help. They need it in myriad ways, from funding for research into how to make their lives better day to day: prioritizing the things I talk about ad nauseam here from the desperate need for innovation in augmentative communication to research into the efficacy and long term effects of a variety of teaching methodologies and the changing needs of older adults as they age to reform and support in the realms of education, housing and employment. And the co-occurring conditions – for the millionth time, I know not a soul who would argue against help managing epilepsy or any of the other challenges which so often ride shotgun with, yet are not, autism. 

My daughter needs help in a lot of ways. As she becomes more and more adept at communicating her immediate needs, I find that the help she requires appears at least to become broader and more societally based than it was before. For many, that’s just not the case. The help they need is in the moment – in a desperate need to ease the profound discomfort, pain and fear that seems almost never to abate. But no matter what the case, this population needs support to be safe, comfortable, productive in whatever capacity that word has meaning for them, and, above all, to be able to communicate their own wants and needs effectively. 

My mission, among many, is to ensure that when they DO communicate those wants and needs, we listen. And that we don’t stop listening if what they’re saying is different than what we thought it would be. Or should be.

Because when we do, we lose. We lose the opportunity to our help our kids. And we lose our humanity in the process. 

Listening to autistic adults, including them in the conversation about their needs and their lives, is not just a moral imperative, it’s not just necessary to show our kids that we respect them, but it’s imperative if we’re ever going to make their lives better. 

The other day, a reader left a comment on diary in which she explained that her nonverbal son had been gravely self-injurious and aggressive for many years. They were at their wit’s end after seemingly trying everything to help him. And then they met an autistic adult who spent time with them, got to know them, consulted with them and their son’s school. They followed the suggestions offered. And everything changed. (He’s still non verbal, but he’s no longer dangerously self injurious nor aggressive. He is, as his mom described him, happy. 

That story is not isolated, nor should it be surprising. We (non-autistic people) often spend so much time lamenting our lack of insight into our children’s unique wiring that we can miss the best possible opportunity to gather insight into our children’s unique wiring – from those who share it. I know I did. I thank God every day that I don’t anymore. My daughter’s life is vastly different than it might otherwise be because of their guidance. 

The bottom line for me is that the fact that autistic people should be celebrated does not negate the fact that their autism is, at least in the world in which we live, disabling. Autistic people need help. We can’t possibly know what KIND of help without listening to autistic people. And we won’t get it from the general public without respecting them.

My daughter has woken me up the past few days by putting her head on my chest and staring me awake. And it’s been the greatest way to start each day, and no matter how hard the night before, it’s filled my tanks to overflowing – this gesture of love and security and, yes, even need. 

That’s what I wanted to tell you. 

13 thoughts on “what I want to tell you 

  1. I am new to your blog, but not to the world of autism–my son is 15. I have experienced many emotions reading them–good, bad but definitely not indifferent!! I appreciate your viewpoints–you have opened my eyes and my heart to some new perspectives. I guess I just want to say thank you–and keep ’em coming!!

  2. I’ve been thinking lately that we need a national Autistic Big Brothers and Sisters organization, run by autistic adults who are willing to do this kind of mentoring of younger people. Because I don’t really know how someone who isn’t you (or someone like you) gets this kind of in-person, one-on-one help without that. I would love for someone who can connect with my son at a different level than I can to spend time with him. Or does that already exist and I’ve just missed it?

    • I don’t know of an organization that does it. I’m not sure if you saw my response (along with Chavisory’s) to your comment on an earlier post, but we both suggested ways to meet people. You don’t have to have a blog to comment on autistic blogs nor run a page to ask questions on an autistic run page (like PACLA or Karla’s ASD page or tons of others). You don’t have to be me (;)) to go with your kid to an autistic-run conference like AutCom or to bring your son to Autreat. It might not be s structured thing somewhere, but there are myriad opportunities to find people who are not just willing, but eager to help guide the next generation.

    • Agreed, we do. I don’t know of an organization dedicated to this, either.

      We also need an organization for the support and mentorship of parents more along the lines of PFLAG…where parents can express their anxieties and struggles and get real support for how to work through those things in the ways they need to but not at the expense of their autistic children.

      As per always, I know of so many people who would love to be involved in something like this, but time and energy amongst jobs and lives and children and other advocacy are always a problem.

  3. How can I express to you my thoughts and feelings about your family? You inspire me in my own life, and I find myself at times feeling something very close to jealous of you for having an autistic child, a sibling who gets it like your older child does, and a significant other as supportive and savvy to his family’s needs as Luau. I know your life is complicated, but whose isn’t? Yours is more so than others in a lot of ways and I admire the way you and your family deal with life in general. Thank you for sharing with the rest of us.

  4. Your brilliant eloquence is much appreciated – again! On behalf of my daughter, and the hundreds of thousands of others you inspire, my gratitude and thanks.

  5. I needed to hear this, Jess. I was getting confused by the other sayings about super powers and such. Yes, my grandbaby is disabled. Her anxiety can be crippling. Her socializing, or lack thereof, can be heartbreaking. She is perfect to me, of course! I wonder how I could go about finding someone with her flavor of autism to help me to advocate better for her?

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