A Day in the Life of a Fourteen Year Old Boy with Autism

A friend of the family needed this information for a college speech class.  I had a little bit of fun with it along the way, and I thought you might appreciate reading it this weekend or whenever you get the chance.  I tried to tell it from his perspective, so enjoy it in the spirit in which it was intended.  I love my boy and I try hard to understand him and teach him things in a way that will make sense to him.
I wake up and wander into the bathroom.  W/o turning on the light, I pee in the general direction of the toilet.  I don’t wash my hands unless told to do so, and even then just barely get them wet, may or may not use soap, probably won’t use a towel because I just can’t be bothered with such nonsense when I’m in such a big hurry to get to some serious video watching.  I still prefer VHS to DVD, because after all, I can control my rewinding and forwarding much more exactly with VHS.  The whole point of watching videos is watching my favorite 10-second clips over and over and over and over…  Besides, I still dislike being forced to change from VHS to DVD.  Anyway, this goes on for about an hour.  I eat my Rice Chex dry because I can’t have dairy, but I don’t mix foods anyway so who cares?  Finally I eat about a dozen chewable vitamins and supplements and head out to the kitchen.

Mom has packed my lunch, which always consists of a plain hamburger patty, a peanut butter cookie, and a piece of rice bread.  I choose a fruit and a vegetable:  a cup of pineapple tidbits or applesauce, and either green beans, peas & carrots, or cucumber.  Btw, peas & carrots are just called “vegetables” and are the only food I eat that is two things mixed together.  The only reason I can mix these is that I started eating them this way before I quit talking and got autism.

Next I fill up my water bottle from the Ice Mountain dispenser.  At this point, if I’m having a really good morning so far, I proceed directly to drinking the rest of my supplements.  I can’t swallow pills because I can’t make myself not chew everything that goes into my mouth.  So mom buys liquids and powders, opens up capsules, and mashes tablets that she dissolves in warm juice.  I have a difficult time absorbing nutrients from my food, so she would probably have to give them to me in this form anyway.  By the time she mixes in everything that I need, I have a glass of juice about the size of a can of “Coke” so I can stand the taste, and I finish it off in about three big gulps.

If I’m not having a good morning so far, I HAVE TO do all of last night’s recycling before I can drink my juice.  This includes removing rings from and crushing any empty soda cans that dad drank last night while working third shift in his basement office.  If I’m lucky there will be an empty beer bottle I can take outside to the bin, and if I’m really lucky mom will have left me some empty metal or plastic containers to put in the bin and some empty cardboard containers to tear up before they go in the trash can.  I love doing the recycling; it’s my favorite job.  Finally, I drink my juice and strip my clothes off on the way to the bathroom.  Obviously I can’t wait until I get all the way to the other end of the house because I’m in such a hurry.

I faithfully drop my robe onto the playroom floor and my dirty clothes down the laundry chute.  I have to stick my head in the laundry chute to make sure each item falls all the way to the floor.  I’m in a hurry, so I quickly pee a little closer to the toilet than earlier and I jump in the shower.  Mom has to regulate the water temperature and help me clean myself, because I’m in much too big of a hurry to actually get myself clean.  I also use special soap and shampoo that have no fragrance or chemicals in them, because I’m allergic to all that stuff.  When the water is turned off, I repeat the words “drip first” while mom hangs up the shower head and my wash cloth.  I immediately start saying “shirt then comb” over and over, despite the fact that mom dries me off and brushes my teeth before we can leave the bathroom, and then I put on my aluminum-free deodorant, underwear, socks, and pants (always in that order) before it’s time for “shirt then  comb.”  Mom has to dry me off and brush my teeth because I’m in much too big of a hurry to do either completely before putting on my clothes and finally getting my hair combed into place.  Btw, my hair is kept short because I can’t stand to feel any bangs on my forehead or hair on the back of my neck.  Besides, it’s easier to keep it really short, because then mom can do it herself with those electric trimmers that tickle so much, and I don’t have to go through the agony of waiting for my turn at the hair-cut place.  After putting on my shoes with the Velcroâ„¢ on them (because I can’t tie my shoes) I’m finally dressed.

Now it’s time to load up my backpack.  I put the water bottle in first, then my lunch, then my “blue notebook,” which I must repeatedly remind both my mom and my teacher to write in before putting it in my bag.  I just know they’ll forget if I don’t remind them.  Anyway, it’s fun to say “blue notebook” over and over, and most days I just can’t stop saying it.  Next I put on my glasses and school ID, then I put on my coat.  This part I like, because after lots of practice I finally got my hands to work well enough to fasten the coat all by myself, and I’m very proud of this.

Next, I go out on the front porch, but I can’t go any farther until mom comes out here.  It’s so hard to wait – first for her and then for the bus.  I start saying lines from my favorite books or videos to pass the time.  Mom says I’m big enough to be quiet while we wait, but that’s just too hard.  She says I’ll wake the neighbors and that I draw attention to myself, but I don’t understand what she means.  She says I need to talk about what is happening now instead of just saying my favorite things, but that’s too hard.  Those things aren’t important to me; I’m in a hurry.  Mom says the bus will be here soon, but it takes forever.  FINALLY, I see the lights of the bus down at the end of the long block.  We’ve been walking to kill time, so we hurry back to my pick-up spot.  Mom holds onto me real tight because I might run into the street in front of the bus.  When the bus stops, mom walks with me and holds onto me until I get on the bus.  I  always sit in the same seat close to the front and put on my seat belt.  Then we head off to school, which is only a mile away but seems like forever because I’m in such a hurry to get there.

When we get to school, one of my teachers meets me at my bus and we go to the lunch room.  The kids are all eating breakfast, so I take a little apple out of my backpack and eat that while waiting.  If we have enough time they let me help clean up when everybody’s done.  FINALLY, we go upstairs to our room.  It’s a really cool room – big too.  We have our own bathrooms and kitchen and washer and dryer, because we are learning how to do chores and clean stuff.  I quickly put my lunch and water in the refrigerator, because I’m in a hurry.  My locker is open already, so I put my backpack and jacket away and lock my locker.  Then I go to my desk.

I see my teacher has put pictures on my schedule on my desk in the wrong order again.  I move things around in the order that makes much more sense to me and start doing all of my jobs.  Sometimes the teacher moves the pictures back in the wrong order again, but sometimes he’s too busy, so yay for me.  Typing on the computer, puzzles, stupid worksheets, yucky handwriting, lunch, gym, rocking chair, bouncing on the big ball, and lots of trips to the bathroom.

Some days we get to go grocery shopping or bowling, so we can practice doing these things and work on waiting, taking turns, paying money for stuff, being quiet, acting “normal,” and waiting some more.  I like going out and doing things, but sometimes the cash register beeping or the lights flickering just makes me want to hurry up and get back to the bus.  I really don’t like it when I hear a baby crying while we’re out.  It’s not too loud, but it’s a scarey sound that bothers me even more than the fire alarm back at school.  Anyway, we finally finish and go back to school.  I’m in a hurry to get back and get on to the next thing.

Finally, the school day is almost over, or at least it seems like it should be, so I start saying “blue notebook” and/or “backpack then bus.”  The teachers open our lockers for us.  It takes forever for everybody to get ready and slowly walk to the bus.  Our class gets on the bus first so we don’t run over anybody else and nobody else runs over us during that long walk from our room to the bus.  Then it takes forever for all the buses to leave the school.  I know it’s “only” a mile away, but I’m in a big hurry to get home.

I see mom in the driveway.  It’s all I can do to wait until the bus stops to undo my seatbelt.  The door opens, and mom says “Hi, kid.  How was your day?”  If it’s a very good day I say “Fine, thank you.  Chicken nuggets please.”  Most days I just say “Chicken nuggets please” as I’m running to the house and through the door, because I’m in a hurry.  I kick off my shoes, put on my slippers, take off my jacket, ID, and glasses, and get the “blue notebook” out of my backpack for mom to read.  I keep saying “Chicken nuggets please” because I’m in a hurry, while mom takes the nuggets from the freezer to the microwave, and while they are SLOWLY warming up.  I can’t stop saying “Chicken nuggets please” until I am in the playroom in front of my TV watching videos with a chicken nugget in my mouth.  I start to relax in front of my favorite video segments.  I also eat a pear, some “green chips,” and a coconut popsicle mom made in a juice glass.  I have  to have coconut water everyday – it’s kind of like my gatorade and it helps it not hurt when I pee so I don’t have to go to the bathroom quite as often.

I pretty much eat and drink the same things for supper every night too, because I’m on a special diet and don’t like very many different things anyway.  Some foods feel weird in my mouth and they make me gag.  I choke sometimes too, but mom says that’s because I eat too fast because I’m in a hurry.  I really love my “green chips” with supper.  They taste like peas, but they’re crunchy.  I don’t get potatoes very often because they can give me a tummyache and lots of gas.  I have a lot of gas anyway, because my insides were damaged from too many antibiotics when I was a baby.  My doctor said that’s why I have to take so many vitamins.

After I eat, I poop two or three times.  I don’t want to do this at school or anywhere else, because I need help wiping afterwards.  Sometimes I have to yell “Help to wipe the butt,” because mom may not hear me the first time.  Just to be sure, I keep saying it louder and louder until somebody comes to clean me up.  I’m still proud of myself, because I recently stopped pooping in pullups, and it was VERY HARD to give them up.  It’s so hard for me to learn to do things, because I’m always in a hurry and I hate to slow down and practice new things.  Change is so hard.  Besides, I like to keep things the same because the world can be so random.

Some days I have therapy after school:  talking, exercising, or acting “normal.”  I like to see the teachers who help me with these things, but I’m always in a hurry.  Talking is so hard!  I can make all my sounds except “L” now, but I have to slow down so people can understand me.  I say things the same way every time, because it’s so hard to learn how to say things.  My head knows how to say it but my mouth doesn’t always do what my head tells it to do.  I have to practice saying things many times before they come out right.  I don’t really care how it sounds anyway, as long as somebody understands what I’m asking for.  I didn’t used to talk at all, so I’m proud of what I’ve learned.

Exercise is fun, but it’s hard too.  I finally learned how to swim, and that’s my favorite exercise besides jumping on the trampoline at home.  Water feels good, especially standing under the heavy waterfalls at the inside pool, but the jumping on my trampoline is easier and makes me feel good all over.  It helps me feel my hands and feet, and it stops some of the tingling on my skin and other weird feelings I have when I’m not jumping or bouncing.  I always feel more calm after jumping for awhile.  I also like to swing at the park, but the teachers are trying to help me act “normal” while I swing, and I just can’t stop flapping my arms and making my happy noises when I swing.  It’s just too hard to be quiet, and it feels so good to swing.  I swing very high, which makes my teachers act scared.  One time my mom told another kid who was swinging next to me that I am a professional swinger and that he shouldn’t try this at home.  Whatever – I think I  could swing forever, but eventually we have to go home.

The other teacher tries even harder to help me act more like other kids.  This is hard, because I’m in too big a hurry to notice how the other kids act.  I just know what I need to do and that’s pretty much all I see.  The hardest thing is to not make my happy noises and repeat my favorite lines from videos and books.  I don’t know what the big deal is – I can’t stop even if I want to, which I don’t.  Why did they even bother to teach me how to talk in the first place?  It’s hard enough to make the word sounds, and now they want me to make certain sounds only at home.  I don’t get it.  It’s hard to look and listen at the same time too.  Anyway, I’m in much too big a hurry to worry about that stuff, but I try because it makes them happy and me proud when they tell me I did it right.

In the evenings when I’m not in therapy with any teachers, I can relax and do whatever I want to do, but I mostly do the same things every evening because that relaxes me.  I love using my iPad, because mom doesn’t have to help me much like she has to with the computer mouse.  I love YouTube, but mom says I need to watch big kid things instead of the little kid things that I love.  I don’t like change, so I wish she’d just get over it already, but I try to make her happy when she helps me find new things to watch.  The whole time I can’t wait for her to leave me alone so I can watch Barney or Big Comfy Couch or the Teletubbies magic house, etc.  I deleted the spelling app., but mom put it back on.  Now I have to do spelling and reading and math first before I can watch videos on YouTube.  I do all that stuff first, but I’m in a big hurry so I do it as fast as I can.

Other than watching videos, I read a little, keep pictures of my favorite things in baseball card holders in a binder, help mom fold towels, sweep the floor, and look for recycling to do.  As soon as it starts to get dark, I start saying “night, it’s night” over and over until mom tells me I can close the blinds and turn on the outside lights.  I like to lock doors and close cabinets and drawers too.  Mom says I need to slow down when I do these things, because sometimes I lock her or dad out of the house or close somebody’s hand in a door when I’m in a hurry.  I don’t know what the big deal is – I always let them back in again when they tell me to and I don’t hurt anybody on purpose.

When it’s finally bedtime, I get mom all to myself and I love this.  We spend a little time on the daybed where she gives me squeezes and tells me that I’m a good boy and a big boy and she’s proud of me and loves me.  I giggle and wiggle and say “I love you” because she always smiles at me and squeezes me again when I say that.  Then we go to the kitchen, where I get out my lunch bag, a spoon, a napkin, and a fruit cup for tomorrow’s lunch.  Mom gives me another glass of vitamin juice.  Then I run back the hallway while pulling down my pants because I’m in a hurry, and pee mostly in the toilet.  I flush the toilet and wash my hands because mom is here now, and then she brushes my teeth and it takes forever.

I jump in bed, and mom puts the sheet over me, then my favorite soft blanket, then a heavy bedspread, always in that order.  (The heavy bedspread is too hot sometimes, but it helps me fall asleep.)  I tell mom “mommy sing to you, yes, okay.”  Then mom sings the same songs and prayers to me every night and I say the same prayer every night.  I say it really fast because I’m in a hurry, but mom said that God understands what I’m saying.  If it’s a good night, I fall asleep fast and stay asleep all night.  If it’s a bad night, I have trouble falling asleep or go to sleep right away and wake up after 3 or 4 hours.  I don’t wake up early very much any more, which is good, because mom and dad don’t like that.  Mom says it’s because now I take medicine for heartburn at night, but I don’t know.  Whatever – I can’t think about that stuff because I’m in a hurry.

13 thoughts on “A Day in the Life of a Fourteen Year Old Boy with Autism”

  1. This joke “article” is absolutely disgusting. Including the mentions of how you treat your child (he can’t watch certain shows just because he likes them? What the FUCK is wrong with you?!). This article is from YOUR perspective, not his, and your perspective is clearly one of arrogant hatred while pretending to actually care about your child. Just because you don’t like the way he brushes his teeth does not mean he “not doing it all the way because he doesn’t want to”. You are disgusting. And if autism is the only thing your child has, then he is also going to be capable of writing with skills higher then the level of a 4-year-old.

    1. Mewgirl,
      Every commenter here is welcome and encouraged to share their opinions on our content. That includes strong disagreement. However, we ask that all commenters convey their opinions in a respectful manner. While “respectful manner” may be open to interpretation, it certainly includes refraining from obscenities and personal attacks on the author. Please refer to our commenting guidelines for more information.
      -Hattie, Persphone Co-Editor

  2. If readers are looking for ACTUAL perspectives from Autistics, there are plenty of us out there. And hey, some of aren’t as radical about dis rights (human rights) as I am. But I found this offensive. Can we get a counter from someone actually on spectrum posted as an article, PLEASE?

    Suggestions of bloggers- some women/female ID’d ones even!- On the spectrum:

    Amanda Forest Vivian: http://adeepercountry.blogspot.com/
    Sara: http://autisticcats.blogspot.com/
    Zoe: http://illusionofcompetence.blogspot.com/
    LOVE-NOS: http://lovenos.wordpress.com/ (And seriously, Grabbers is a Must read from here: http://lovenos.wordpress.com/2011/02/06/grabbers/ )

    Also, mandatory plug of the Org I’m Director of Advocacy for:
    Autism Women’s Network: http://autismwomensnetwork.org/

    BTW, I’m sure we could hook Persephone up if Y’all wanted some articles or recs or outreach… also, our forums are open to both ASD women and our allies be they ASD guys and non-binaries, parents, service providers… two rules: Be pro-woman- no sexist behavior or outright misogyny allowed (Goes for Transmisogyny too, y’all.)- and pro-Autistics- no R-word, please, avoid ableism, and support Autistic self-determination. So, not excluding y’all if you wanted to check it out.

    1. Thanks for linking me. I agree on this article being offensive, though it has a lot of good points. I really appreciate the neutral tone and the lack of melodrama in describing this boy’s life with his mom. I think that if readers don’t know anyone with autism, it can be really helpful to read something like this which is realistic and doesn’t portray life with a disability as an unending tragedy–just life.

      That said, I really don’t think there’s any good reason to write from the perspective of someone with a disability that you don’t have. It’s disrespectful because it implies that a non-disabled person’s construction of a disabled person’s feelings is equal to the real thing in accuracy and authority. The writer does seem pretty sensitive to her son’s experiences, which is great, but everything that is valuable in this piece could be represented just as well, and more appropriately, in the form of “my son does this and I think he feels this way” rather than “I, the son, do this and feel this way.”

    2. We would totally welcome posts from the perspective of an Austistic, if someone would like to write one. I know I would enjoy reading it, and I think it would be a very interesting counterpoint to this article. If you are someone you know would like to submit an article, seriously, click the “Contribute” button in our nav bar and e-mail Ophelia.

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