Fractured reality: This is autism

I get so frustrated.

Adults with autism, and even some parents, tout autism as “not a disability” and that we are just “quirky geniuses.”  I’m not saying that autism doesn’t have its perks, but running around saying that it’s “just a difference!” leads people to believe that I should be able to do things that, at least right now, I can’t do, and that frustrates me.

I think many of these people who have jobs, and hubands or wives, even kids, don’t know what autism is like for those of us who live more like me.  I include in my list all of autism’s friends (anxiety, OCD, GI issues, possible seizures or whatever my “episodes” really are), as without autism, I likely wouldn’t have these issues.  For the record, I could also write a list of all of autism’s positives and paint an entirely differen picture of it.  I realize that.  But that’s not the mood I’m in, nor the point I’m trying to make.

So, autism is not having a car but being unable to cross the street by yourself, leaving you stuck in your apartment when staff isn’t here.

Autism is relying on other people (your mom or your staff) to help you communicate.

Autism is an innocent mother-daugther tradition (ice cream after unfun medical procedures) getting cut short because the ice cream makes you sick within minutes.

Autism is your mom having to deal with all of your professionals and clinicians.  This means having to share every. single. detail. of your life with your mom, even though you’re an adult.  I love my mom to death, but sometimes I wish I could have privacy.

Autism is having a sensory system so confused that you live in a fractured reality.  You go from present to not present throughout the day, and your memory falters frequently.

Autism is not knowing what day of the week it is or what time of the day without checking over and over again.

Autism is calling your mom because you want to hear her voice but being unable to actually speak to her.

Autism is underlying anxiety that’s so pervasive that you don’t actually know if you’re anxious anymore, since it never goes away.

Autism is wanting to work, but every time you try you end up hiding, cowering, crying, panicking somewhere, and your every waking moment becomes dominated by fear of going back to work.

Autism is every time you turn around, you realize you’re picking or scratching or biting at yourself.

Autism is being unable to sit through a church service due to sensory issues.

Autism is “feeling funny,” but being unable to tell if you’re hungry, sick, have low blood sugar, or have to go to the bathroom, or have a hair in your face.
Please, rather than going around saying that people with autism aren’t disabled and are just wired differently, try saying that autism is a spectrum that affects each person differently!

Mother’s Day in August

I know my timing is bad as it’s August and not May… but I keep reading something from parents again and again, and I want to get things straight between me (the kid) and you (the parent).

Parents, mostly moms I find, express their worries that they caused their child’s autism and that someday their child will blame them or say the parent didn’t do enough for them.

Get this out of your heads!

My mom has said that she feels like she should have done more, searched more, engaged me more… so yes, my mom feels this way too.  Mom is quiet and reserved.  She’s not a mama-warrior in the typical sense of the word.  She’s laid back and go-with-the-flow.  She’s also the best Mom God could ever have given me, and I want to tell you what I think of her, and what, I believe, many kids think of their moms.

Mom always puts me before herself.  I swear she wore the same pair of jeans for I don’t know how many years (ten, maybe?) so that we could have all our clothes and shoes and things for school.  She still wears clothes from when my 29-year-old sister was in eighth grade!  But I got a new desk chair a couple of weeks ago, because mine was hurting my back.  Mom always puts us first.

Money aside, she gives us something even better- her time.  Every Saturday is Momday, all day long.  Sometimes Sunday too, and don’t forget Thursday nights.  Oh, and if I need to go to a social group or something, she brings me.  And don’t forget all those doctor’s appointments.

You might think I get tired of seeing her, but far from it!  I get excited every single time I get to see her.  As I saw her out the door last week, I said, “I’m happy to see you tomorrow!”  I never, ever, not once get tired of my mom and her company.  She never gets on my nerves… I mean, it’s a little embarrassing when she dances in the grocery store… but as far as grating on me, never.

As I said, Mom’s not a mama-warrior like many of you moms think of the word, but she is in her own way.  She’s a mama-warrior when she spends hours on the phone sorting out my government aid, insurance, and doctor’s appointments… when she researchers what might be going on with me medically at work… when she brings me all the way to the Food Co-op on a Saturday so that I can get the supplements I need.  Mom may not be publically fighting for the autistic community, but she is a mama-warrior because she sets an example for all the mamas coming after her of how to be a mom to a kid with ASD.

And Mom knows how to engage me and never, ever snaps or yells when I say, “I have a cat” for the tenth time that day.  She always says something like, “What’s your cat doing?” or “Did you give your cat her medicine?” or “Did your cat eat her dinner?”  Never “enough of the cats” or anything like that, even if she is tired of them.

I know Mom spoils me, but she also knows how to teach me to be more independent.  She insisted that I move out on my own (one of the best things that ever happened to me!).  She made sure I got staff so that I didn’t have to depend on her so much.  She encourages me to go to and takes me to social groups so that I have people other than her to hang out with.

I could go on, but I think I’ve made my point.  Next time you fear that your child will blame you for his autism… well, I can’t speak for every child, but I really don’t think he will.  I can say that the thought never crossed my mind.  What has crossed my mind is everything my mom has done for me.

New book giveaway!

How to win a free copy of Living in Technicolor: An autistic’s thoughts on raising a child with autism, when it comes out in September:

1. Go to my Facebook page. (The link is on the right of my blog.  Funny story- I’m not sure how it got there!  Brother must’ve added it when I wasn’t paying attention.  Good ol’ Brother.)

2. Leave a comment telling me how you’ve been affected by autism (this is purposely vague… I’m curious to see what you have to tell me!)

3. Include #livingintechnicolor in your comment so that I know you’re interested in winning a book.

I’ll pull the winning name at the very moment I publish my book, and Sister will get it in the mail to you.

That’s it!  No strings, no nothing.  Just hoping to help someone out who couldn’t otherwise afford to buy a book (which, believe you me, I totally understand).

Happy commenting

 

Looking back and finding answers

These days, my memories are few and far between.  From yesterday, I remember that my khaki capris were hanging over my laundry basket and that’s it.  I don’t know where I went or what I did or who I saw.  I’m not even sure what day it is.  Today, whatever day it is (well, by now I’ve checked, and it’s Tuesday) I… my BSS wore pink nail polish.  Looking around the room, I see one of my elephants and so I know I’ve been sewing.  I don’t know if it was hot, or if it rained.  I don’t know what I did at speech.  Fuzzy; it’s all just fuzzy.

But there are some early memories that I hold onto.  And, now that my thoughts and memories are becoming so fuzzy and confusing, I hold onto them even tighter.

I can remember being four years old and sitting in the back of the car on my booster seat in the blue minivan we had.  I was wondering, to my four-year-old self, whether a person can be born to do something that isn’t natural.  For example, can a person be born to drive?  Or are people only born to do things that are part of this natural world?  I puzzled on that for the longest time.

And, even further back, I found my answer.

I was still in a crib.  Since I moved into a toddler bed upon our move to Georgia when I was 13 months old, that means I was probably around a year when this happened.  I had a dream in which I was a baby boy and my name was Ashley.  I knew that was my name because, on the wall to the right of my crib, centered over its side, was a blue-with-white-polka-dot, quilted sign that said Ashley.  I can still see that sign in my mind’s eye.  I woke up and saw the clowns on the bottom of my crib.  There, the memory ends.

Now, I know a person can’t be born knowing how to read, but if I was able to recognize words at just about a year old… well, I’d say that a person can be born or created to interact with the world via written and typed words, wouldn’t you?

And so I was.  And so I am.

All at once

Life sure does happen all at once, doesn’t it?

In the last 24 hours, I have…

- talked to some well-known autism advocates around the world

- been offered the chance to speak at Slippery Rock University’s Autism Conference next year

- had it confirmed that the Patch (online newspaper) will do a story on me, Blue, and my books

- sold a few hand-sewn items I will make (stuffed elephants out of puzzle piece fabric!), the proceeds of which will go to bring Blue home.

Life happens all at once, when it happens.

But then, I’m still in my fog through all of this.  I just sat here, miserable, trying to figure out why I felt so icky.  I thought that I was hungry, so I ate… and felt worse.  Guess I wasn’t hungry.  Only in autism world do things like, “Am I hungry?  Do I have to go to the bathroom?  Do I itch?  Am I sick?  Did I forget my meds?  Do I hurt anywhere?” have to go through your mind every time something feels off.  I think (correct me if I’m wrong) that most people just know, somehow, when they’re hungry or hurting.  Not me.  I have to play guessing games.

It didn’t help, then, that what I ate had cheese in it.  In fact, I think the large about of casein I consumed at dinner, via cheese, is the reason I feel so bad.  Of course I didn’t realize this until after I eat the second portion.

I wish there were some degree of contuinity of experience in my life.  If I think back over the day, I think… I have visual flashes.  I can see my khaki capris laying over my… what do you call that thing?… then I can see staff sitting on the couch, then I can feel my nose itch.  But what did I do?  Where did I go?  Who did I talk to?  I must say, I haven’t a clue, and that is rather frustrating.  The only reason I can remember what I listed above that has happened is that I have logs of it all in my email.

I do feel as if I’ve been reduced to my typing.  I can’t remember what my real-life world is anymore.  I don’t know how present I appear, but with no memory of anything that happens… well, I’m not really there.

Book giveaway winner!

Danielle!

Email me at autisticspeaks@gmail.com (or, you know, Facebook me like you usually do) with your address, and we’ll get it in the mail.

Everybody say a big thank you to Annemarie, my friend from college, who is sponsoring this giveaway!

Book giveaway!

In light of my second (and hopefully third) books coming out…

I’m doing a giveaway!

Leave a comment on this post, and I’ll enter your name into a drawing to win a copy of my first book.

Thanks to the one and only Annemarie for making this possible!

Presence

After my endocrinologist appointment the other day (during which I got a fantastic report!), my mom said, as she often does after taking me to the doctor, “I don’t feel like going back to work.”

And, as always, I said, “So let’s go somewhere!”

Mom always says that she can’t, that she has to go back to work, that Aunt Mary needs her…

This time she said, “Where should we go?”

I squealed!  In case you’re wondering, we went to my favorite Mexican restaurant (where Mom would go back that night, so it was very, very nice of her to take me) and then to the fabric store to get new things to make.  I was antsy and cranky by the end, but it was a lovely time with Mom, and on a weekday!  What a treat!

While we were in the car, we talked about the conversation Mom had with the man who’s doing my reevaluation.  She mentioned that she told him about how, when I was little, I wasn’t really “present” a lot of the time.  I was… gone away, somewhere else.  I asked her if I am present now, and she hesitated.

“Well, maybe sometimes, yeah.  But sometimes definitely not.”

I sat with that for a minute.  I know what she means.  Sometimes, when I go “away,” I can’t even get my eyes to focus, the sensory stimuli is so overwhelming.  Things morph and blur, and I can’t make sense of them.  It’s just like when you hold your hand two inches away from your face and you can’t focus on anything, except the whole world becomes like that.

And my ears feel like they’re underwater, kind of.  Voices hurt because they’re so loud, but I can’t sort out the words.  They come at me in waves, and I get the crest of each wave, at best.  Sometimes I don’t get anything.

My skin feels like someone has taken a cheese grater to it, or like I’m being attacked by fire ants.  I hit and pinch and punch and scratch and bite, trying to calm my body down.

And my molecules.  Oh, my molecules feel like they’re either so tight that I can’t think, or like they’re floating away.  I can’t feel where my body is in space, so I run into things and bruise my arms and legs.

My thoughts float in and out, but they don’t catch on anything to stick around.  I can’t make good sense of them.  There is only what I feel, not what I think.  When I sit down to type, I can watch my thoughts take shape on the screen… but unless they’re typed out, I can’t get hold of them.

There is an odd combination, sometimes, in that I am not really present but my speech still works.  Somehow, I must hear what you say, and I respond… but it never sinks into my head, what anyone’s said.  This is why I actually get angry at myself when I talk, because I don’t know what I’ve said or what you’ve said and I get scared that I’ve offended someone.  There’s no way to tell.  It’s worst on the phone, so I keep most communication to email.

Sometimes, it looks like I’ve gone away, but I’m actually very much there and know exactly what is going on.  Be careful in your assumptions.  If you think your child isn’t hearing you, don’t just say whatever you want, because he very well may be hearing every word!

I guess the best way to know if I, personally, am present is to ask me, because I can let you know.  It’s not always easy to discern by what you see.

Well, then.

 

Me: Something’s wrong.  Something’s wrong.  Mom?  Something’s wrong. Fix it?  Mom?  I have a problem.

Mom: Okay, okay, calm down, what’s wrong?

Me: I don’t know! (major whining)

Mom: Are you low?

Me: No!

Mom: Is it a feeling?

Me: Don’t know!

Mom: Are you sick?

Me: Don’t know!

Me: All better.

Mom: What? What was it?

Me: Hair in my face.  Bye.

Books

Check out the new tab on my page, titled Books, and find out about my new book that will be available this fall!  The proceeds will go toward bringing my dog home.

If you’d like to submit a question for me to answer in the book about my life or about children with autism, please email me at autisticspeaks@gmail.com.  I will try to respond to all questions, even if I don’t include them in the book.