This was an idea my mom had, since I was always writing about the same things, and people were probably getting bored. She asked people on Facebook to ask me any question they had for me. My dad and my sister also asked a few questions. I then picked which ones I felt like answering.
At the end, I asked my mom several questions, and her answers follow.
My Answers to Other People’s Questions
What do you remember about being able to speak?
I really don’t think I can remember. I don’t think I recall because I blocked it out to protect myself from the pain of remembering that I was just a usual kid at one point, only meeting with reality later on.
I remember that I very much wanted to get a funny joke out of my mind but couldn’t find the sound right away. The most frustrating thing about not being able to speak is that you don’t get to share the most immediate thoughts with people who might really get a laugh. Usually I want to tell someone that I am dying of boredom.
You will not understand what it feels like to not be able to speak unless you are autistic and have experienced a kind of loss that leaves you reeling with extreme sadness. I am whining–I know. But I am being honest; it is frustratingly difficult to be locked on the inside with no way to articulate your thoughts, unless someone holds a letterboard in front of you. Have you ever felt like you had a really important point to make, but no one would let you speak? That’s what it feels like to be locked in an autistic and unbelievably manic body.
What events in your life have been pivotal/game changers?
The most amazing period of my life is only just emerging and I am only now experiencing the breakthroughs that you mention. Nothing has been so life-altering (not expertly describing this) as getting the opportunity to have my thoughts known so that I am not so alone.
Now I am able to experience feelings of pleasure about my autism that I wasn’t able to feel when I was trapped inside my head. I am giving myself permission to experience the momentum of autism and not just its drag. Now I am ready to see autism not as a liability, and maybe instead as a way to make the world a more accommodating place for people like me. Maybe autism needs a more compassionate response from the world. I can help people understand more about autism, giving hope to the families of people like me.
Maybe the change that has meant the most to me has been the friends I have made, thanks to my newfound communication skills. Having a means of establishing friendships has been life-changing, thankfully. Forming relationships with other autistic humans is no small accomplishment; my mom must connect with far flung families like ours and only has so many hours in her week to squeeze these get-togethers in. I am less isolated as a direct result of her efforts.
What are the sounds and/or events that trigger you most?
Only the sounds that are not noticeable to normal people are triggering to me–noises that you wouldn’t hear if you weren’t listening really closely. You might not realize it, but really subtle noises are everywhere and autistic people feel every one of them uniquely in their bodies as if every heavy or light sound moves through each of their nerves. Consequently, each one of us is sensitive to noise like each one of you is wired to respond in unusual ways to various energies you aren’t feeling on a conscious level.
In contrast, I am not alarmed by noises that upset other autistic people. Getting distracted by noises is not a big problem for me.
Why do you enjoy listening to the noises and songs on children’s apps and toys?
Those sounds distract me from head-upsetting thoughts that would otherwise make me obsess over stupid things. You might not describe those sounds as soothing but channels between mild and loud are often nice for me to experience. I understand that these have become incredibly annoying over the years, but they stop me from ominous thoughts invading my head all the time. The music essentially rewinds something in my already demented brain, hindering any deafening noises that would otherwise interfere with my quiet.
Why do you like it when people yank on your hair?
I like the input it gives me. Having that unleashes a series of exquisite waves of pleasure that allow my mind to relax.
How did you teach yourself to read? How do you read words on a page?
I learned to read by intuiting the sounds that matched the letters on the page, quietly learning to make sense of each letter while stringing each word together until I entirely understood reading. I was able to teach myself, surreptitiously, by reading each tiny word on each piece of paper I encountered until one day, I decided that I had autistically taught myself to read.
I read by seeing the entire page all once, absorbing the meaning sometime later, making it hard to understand the passage immediately. Reading an entire sweep of text demands that I have some time to ingest the meaning and read nothing else until I have understood everything, making it possible to read more. The reality is that I need a lot of time to read in order to absorb the meaning, not the letters. Reading is challenging because, unlike other things, a decent amount of time is required before I am ready to move onto another passage. I mainly learn my lessons, like history and science, by listening.
Is there something you wish your sister would know or understand about you?
I understand that she is embarrassed by the way autism shows up randomly and it feels like an attack on her. I really just let autism take over and stop having control, not having any consideration for the people around me. Nothing I do seems to keep it at bay, despite my everlasting wish for happiness and a break from it for all of us. I am less optimistic about the latter, having no hope for a reprieve.
I not only wish I could be your normal brother, but I wish autism would go quietly kill itself in the night, leaving us to lead a deadeningly normal life. I love you a lot and want you to understand that I know how you feel when I act weirdly. Mostly, I want you to love me in spite of my autism.
Questions from Me to Mom
Don’t you yearn for a normal son?
I’m going to be brutally honest and say “yes”. I wish with all my heart (as does your father) that you did not have to struggle so much, that you could at least live with “Autism-Lite”. Life would be easier if you weren’t autistic. You and I have spoken about your battle with it, and your desire to find a cure for it, so I know that you and I are on the same page about this.
To be clear though, I do not wish for a “different son”. I don’t want to drive you to the store, return you, and come back with an entirely different model. I once wrote that it is perfectly reasonable for me to love you–to use that overused catch-all–”just as you are”, and to simultaneously wish that I could cure you of your autism. What mother wouldn’t wish that her son could do all the things he desperately wants to do, but without the fight, the mania, the uncontrollable urges and movements, the caregiver hiring & scheduling, the medications, and the specially-designed house we’re building to make all of our lives easier?
I think the even more poignant wish I can express is this one: how could I not wish to take away the thirteen years of being locked inside? During those years, you must have wondered whether anyone would ever discover your intelligence, sense of humor, and utter boredom from years of ABA and color-matching in school? Even now, as you mentioned above, you are still locked inside, unless someone holds a letterboard in front of you. Who the hell would want that for their child?
Despite these wishes–and here is where my atheism really comes in handy–just because we desperately want something to be true, doesn’t make it a reality. And what do we do with that? We roll up our sleeves and work with what we have in front of us. Hopes, fears, prayers, and wishes? They get you nowhere. But action gets you somewhere. I see little value in living under a mantle of regret and sadness. Instead, your father and I choose to shift the world, where possible. We created a non-profit to help your peers. We push the school system to widen their understanding (as we once had to within ourselves) of what non-speaking autism belies underneath the silence and “strange behaviors”. We set up trusts and paperwork and get on waitlists and make plans for how to give you a meaningful but safe adulthood.
I do not spend my nights actively wishing for a different you. I work with what I have, and move the hell on, slowly getting you closer and closer to the goals you have set for yourself. It is what it is. And I love you fiercely.
Do you get very tired of working really hard to get me an education?
Of course I do. No need to be gentle with my language here: fighting on your behalf is exhausting. Sometimes we fight less. Sometimes we fight more. It depends on your teachers and who is running the show, administratively speaking, in the school system.
Over time, your father and I have settled into a routine: he plays “Bad Cop”, while I sink into the more traditional role of “Peacekeeping Mother”. However, that doesn’t mean that I hand out hugs to everyone who is nice to you. Instead, I nudge them to try harder. I show them copies of your essays. I schedule meetings at your school to demonstrate to your teachers and aides how I work with you on a keyboard. I wield soft, but effective power by breaking down the school’s arguments, using the chat function in Google meetings, while your father is busy threatening legal action. Together, we dance the dance.
What choice do we have, really? I don’t think we could live with ourselves, knowing that we just coasted, taking advantage of the school days as a kind of child-care, and accepting that we had nowhere else to go.
I will say that having documentation, written by people with PhDs, certifying that you have at least a normal IQ, seems to have unlocked a few more doors for us vis-a-vis the school administration. And getting that official report was no small feat. I very much prefer the new norm, compared to the days when we were posing you in front of chalkboard messages, and then blowing those images up and picketing with them in front of a certain district’s department of education building and putting our story in the press. That kind of fighting was soul-draining…although I suppose it pushed us to create a dramatically different life for our family in the country.
(Confession: there have been some periods of my life where I did more accepting and less fighting. I’m only human. I have had doubts, just like any parent who is willing to be entirely honest. Moveover, I simply can’t advocate for you 24-7. I am no saint. I know that some parents throw away all of their personal plans, dropping their careers to become a full-time assistant to their children. But I’ve always felt comfortable drawing a certain line between my kids and myself. I entered parenthood with a strong sense of self and desire for a career, and I’ve never felt bad about maintaining those two ideas alongside raising my kids. Again, two identities (human-adult-American-woman and mom-special-needs-parent) can co-exist pretty peacefully inside my head.)
How do you feel about me?
There is definitely a theme to your questions. Couldn’t you just ask me how I feel about blue cheese or your sister’s taste in music? I honestly don’t know how to answer this.
You are so many things. You have so many facets. The same could be said of any human, and you are no different.
I’m still getting to know you, which is weird to say to a fifteen year old. But we have only really had solid insight into your personality since the summer of 2021, when you started to communicate more freely.
You’re funny. You have inherited my non-goofy, rather dry, tell-it-like-it-is sense of humor and manner of communicating. The other day, when you came home from school and I asked you how you were and held the letterboard up in front of you, you answered “I’m autistic and I’m hungry.” That’s it. Just the facts, ma’am. I thought that was effortlessly hilarious!
You also don’t have much tolerance for stupidity, a trait we also share. I’m sure you have to endure more of it than I do, however, since you don’t get the same opportunities I have to subtly remove yourself from stupidity, or brush people off, vocally.
You once said to me “I am your autistic equivalent”. I believe that to be true. I think that–if you could speak–you and I would share several inside jokes, and sit in the corner at parties, exchanging snarky pseudo-sociological observations of everyone there, while chewing on Gummi Bears and Sourpatch Kids. You have your father’s ridiculously good sense of direction, and energy level. You probably have his math skills. You most certainly have his love of large words. But I believe, deep down, that you are me. You are mine.
(That’s okay. Your sister is his, wrapped up in my physical traits.)
You are a fighter, although I think you’re probably a friendlier person than I’ll ever be.
You want to make this world a better place. And I have faith that you will, as long as people give you the support you are entitled to, as a human being.
I see you gazing at nature, giggling and sprinting with happiness. Thus, I believe that you possess a sufficient sense of wonder and joy, as a human with only one life to live.
But above all, you are patient. You had to be, after all of those years, locked inside. I think this is a valuable quality that will get you far in life, as you live with your autism. To transform the world, one must be patient, and even a bit flexible. You have both of those qualities in abundance, and I am grateful for that.
I love you just the way you are.
Do you truly believe that I can have a real, independent life?
I believe that you can lead a more independent life, one where you don’t live with your family, but one where you will continue to need support from caregivers who will need to drive you, cook meals for you, and ensure that you get your medications at the proper times of day, among other physical care activities. I realize that this may be hard to hear, but I suspect that you also see your life playing out along these lines.
Specifically…
I believe that you will go to college, starting at a local community college–perhaps. And then, thanks to the flexibility of online degrees from accredited universities, you will achieve your dream of getting a four-year degree. You certainly have the intelligence needed to accomplish this.
I believe that you will live in the house next door that we have already prepared for you. You will live with a roommate and a caregiver. You will (and to some degree, you already do) make choices about what you want to do for the day. You will choose what you want to eat. You will choose whether you want to shower, watch TV, write, go for a walk, listen to live music, go to a museum in DC, etc. You will do all of this because you are now able to communicate with us.
You will publish your writing. You will attend conferences and advocate for people such as yourself, as your older peers are already doing. You will meet up with friends, which you are already doing–now more than ever–despite all the hoops we have to jump through to make those events happen. (This is because a lot of families that live closer to us aren’t yet aware that their kids could communicate, if given the right tools). You may even succeed at implementing your idea about a social network for “spellers” like yourself, although I think you need to flesh out this goal a little more. 😉
You will lead a meaningful life, full of social connections, social improvement, fresh air, love, and humor.
But your flavor of autism, combined with other diagnoses, means that you will always need someone there to make sure that some of the more basic activities of daily living are accomplished, while you are busy with the equally important meaningful stuff. That is a simple fact. And you know me: I really suck at sugarcoating stuff. Again, I think it’s a better use of everyone’s time to simply acknowledge that and then move the hell on.
You believe me to be clearly intelligent, but many people assume otherwise. How do you get through to them that I am actually intelligent?
This one’s easy. I show them your writing. I go to your school and have you type for your teachers. I put the letterboard in front of your face, when we are interviewing new caregivers, and ask you to spell out any questions you have for them. I make sure you get a chance to express your opinion, when we are having lunch with another family. Let them see your intelligence for themselves. It’s pretty hard to dispute, once you have the means to communicate in front of you.
I tell people how sorry I am for not knowing that you were “in there” for 13 years, and acknowledge how easy it might be to assume that someone who moves predictably unpredictably, makes strange sounds occasionally, and who needs support with some basic activities of daily living, might seem to be intellectually disabled, but is, in fact, highly intelligent, despite his “weirdness”. It’s an easy mistaken assumption to make, and I think it’s only fair to put that out there, up front, when we meet new people, and then immediately tear it down.
Have you noticed the theme here? Let’s acknowledge the hard stuff and then move the hell on. Actions mean so much more than the hand-wringing that a life like ours might otherwise lead to. As your mother, I don’t want to spend my life wondering what it all means…Why you? Why us? That gets us nowhere fast.
We tell people that you are intelligent. We show them that you are intelligent. And then we get on with it.