Jerks are People, too

I ran into someone the other day at the mall, who used to bully me RELENTLESSLY in Elementary school. 

He started my childhood nick name "Maddie Fatty" (which to this day makes me cringe and I don't like talking about it...).

One day, in the 3rd grade, he shoved me in a trash can for playing pretend Poke'mon by myself...

So I reported him. And after being evaluated, he wound up being put in special ed.

He never messed with me again...but I always knew him as the guy I sent to special ed.

I never really thought much about it after it happened...but 15 years or so go by and I see him and I literally felt speechless. I put on my polite face and said hi and asked him how things were going, and he reciprocated the same energy I threw at him. It over-all wasn't a bad experience, but it really got me thinking about things...

What would have happened if I hadn't spoken up about this incident and what he had been doing to me? I don't mean in the sense on what would have happened to me, I was getting made fun of by more kids than just him, but I mean with his life. I don't know exactly the kind of problems he had, but I imagine that if they hadn't gotten him in the program when he did, he would be in a totally different place right now and would not have gotten to where he is now. He told me that he is at a technical college going to be an auto-mechanic...which is awesome! What if he had never gotten the services the special ed provided for him? I don't want to blame myself for his success...but one little thing led to another, in a sense. 

What would have happened to ME if I hadn't gotten services?

I don't think I would be at all who I am today. Let's see some examples...

Things I could not do if I were never in special ed or gotten the amount of therapy I had:

-I couldn't speak. I would have no sense of communication, or if there were, it would be 2 or 3 words at a time.

-I couldn't eat anything but PB&J, French Fries, and Mac & Cheese.

-Acting? Forget about it.

-College? Forget about it.

-Boyfriend? ANY kind of friend? Non-existent...

I'd go on, but let's just say this...I owe a LOT to people in the educational system. Not all of them were necessarily people I always enjoyed working with, and a couple of people made me feel pretty crappy, but the ones who were awesome to work with are the ones that stick out in my mind. It took me years later to see the impact that these people really did have on my life and my development, but now as an adult, it means the world to me. 

Parents, if your child is frustrated with their special ed, or they don't seem cooperative, please be patient. Your perseverance and your child's special educators are essential in helping your child find the best sides of Autism. No matter what your child might have, early intervention of it will make all the difference. Intervention can help your child bring the best sides of them out, when the negative seem to want to over-shadow them. Don't give up! Years later, they will thank you for never abandoning them even in the darkest of times. I know I have, and I bet that guy from my elementary school does, too.

By the way...Mondays suck. Just thought I'd throw that in there.

<3 Maddie

Let's "Get It" On...

I have many (claimed to be) "Neuro-Typical" people in my life, many of them who knew almost nothing about Autism before meeting me. There are so many people who I love and adore that I choose to have in my life, but still don't seem to "get it".

My dog doesn't seem to "get it", in the sense that she doesn't quite "get" how to poop outside. I swear, my dog, Jandy, (yes, that is her real name, I have no need to try and protect her identity) has the internal hatred of taking a poop out on the grass. I will spend a max of 2 hours being outside with her, and when I finally give in and have us go back inside, the second I open the door of my apartment, she bolts in and goes to her little poo-corner and does her little Pomeranian/Chihuahua thing.  I have gone so far as to buy the fake grass they sell at PetCo to see if she will do her business on that...nope, nothing. She really prefers either on our carpet or on a puppy pad (that is sprayed with the scent you can buy that tricks her into going on the places you spay...except outside!!!). As many times as I will yell and scold her for not going outside, and as many times as I try different approaches to this dilemma, my efforts seem to fail. The nick-name "Little Sh$%#" says enough for her.

I find it funny that people look at people with Autism and assume that they don't "get it"...like we are out of touch with normality and that because we function DIFFERENTLY, it makes it automatically not acceptable...to those people's standards. 

No, YOU don't get it.

...No offense.

Let me help you "get it" :)

What do I mean by "get it"? Here's the deal: the people I interact with on a consistent basis seem to lack understanding of how Autism works. My friends don't see me as Autistic...which is cool on the surface, but really the issue is that their "image" of Autism is only the severe cases they have seen in the media or tantrums in public places. What they don't "get" is that Autism has many faces and many ways it affects people...negative AND positive. People in my life hear about Autism and only hear about and or see the negative, and it affects the way they look at the spectrum.

Side note...the low functioning portion of the spectrum is not the entirety of the spectrum...also, it's not a disease and I refuse to refer to it as a disease.

Supposedly, people on the spectrum don't "get it". What is there to "get", anyway? Because we don't think or act the way that "neuro-typical" people do makes it wrong? We have many gifts and talents that our society could not function without. There are many people in history that people have looked back on and seen Autistic tendencies and ways of thinking in. One of the smartest men in history, if not the smartest, Albert Einstein, was thought to have had Autism. Many things would not have happened if we didn't utilize the way his brain worked and the way he formulated ideas and put them into our realities. There are many other examples of people like this in history, and even though people didn't know about Autism then, it doesn't mean that it didn't affect people, very very influential people.

My friends and family love me. I have a wonderful support system in my life...but often, I find that there are still many people with ignorance about the benefits Autism can have. Jokes are made about Autistic people in front of me...and it makes me want to vomit. Just because I have found a social tact that helps me with everyday relationships does not mean that I am automatically not Autistic, and it does not give people the leeway to think that their mocking doesn't affect me. I can yell at them like I yell at my dog until they understand...but it won't help anyone. Jandy won't do her business outside by me yelling at her, in fact, it might even make her more afraid of me. Patience is key. Change won't happen if I just stay angry at ignorance. Ignorance can be fixed, not stupidity. I don't have stupid people in my life...in fact, I have very many brilliant and talented people surrounded by me (each with wonderful gifts they will offer to the world), but there certainly is a good amount of ignorance going on. 

I know I have said this over and over again...but people on the spectrum don't need to change who they are. It's about finding educational strategies to utilizing the gifts that people with Autism have. Helping people on the spectrum reach a communication level with the people around them is different than trying to change the language entirely. There are many different ways that you can bring out the best in people without changing the person themselves.

I hope that people reading this blog have a better understanding of the spectrum...it's huge, it's a little confusing, but it's something that people need an understanding of, especially with the growing number of diagnoses going on.

Instead of calling it an "epidemic" it should be called an "evolution" with the possibility of many "solutions".

Get it?

<3 Maddie :)

Maddie: Never Defeated

This is amazing and horrible timing for this blog post...

I'm pissed off...

REALLY pissed off.

Oh yeah...Hi there, how's it goin? Long time no see...

By the way, in general, life has been treating me well...good things happening in Maddie-Land.

But now, I'm pissed off.

Care to continue?

Fair warning: this is probably not going to be one of those "warm and fuzzy" posts that you can find some sort of enlightenment from. I'm typing everything at the top of my head, hoping it will help clear my thoughts.
The exact situation is not important, but I am revealing to you a kind of vulnerability you might not have seen before. It's like seeing a mother bird after she's had a predator try taking her eggs away from her...

I'd imagine she'd be pretty pissed off and not be too inclined to have self-control.

That's what my autism anger-bursts feel like...

Let's just say...I get "Cray-Cray".

It's normal for me to feel frustrated about things, or overwhelmed, stressed out, whatever...but to get me absolutely FUMING is a whole other story. If I do get like that, you'll probably never see it. I might tell you about it after the fact, but I tend to not reveal the actual emotion. It ain't pretty. I got from 1-10 on the anger scale pretty quickly...a lot of people on the spectrum do. It becomes more than an emotion...it evolves into a physical anger where you feel like every pulse in your body is blood ready to burst from your veins. It's been an hour since I've had a complete melt down...and my heart is still pounding. Typing this all right now literally feels therapeutic...I feel myself becoming more and more relaxed as I go along, and things seem less and less like the world is crashing down. The pressure on my finger tips on the keys on the keyboard feel like I am releasing the pent of feelings I was storing. I came home from school tonight completely out of control of my emotions. I literally felt like punching something and screaming at the top of my lungs. Instead of that un-healthy behavior that could potentially hurt myself, I've decided to blog.  

Again, what happened to get me to this point isn't really important...let's just say I was hurt by a friend I care about a lot. I wish I had told them that I felt angry at them in the moment, and instead I bottled it all up and broke down when I got home...I hate that I do this. I don't like confrontation, but in the moment, it seems better than facing the problem "head on". I think at times, I feel like I can't tell people when I am angry, because I hate myself when I am angry. Unfortunately, I've spent a lot of my life feeling angry, and it's not somewhere I like to re-visit nowadays...running away and being alone always seemed better than putting it all out there and risk losing that relationship. As a defense mechanism, I think I like being the person who chooses to leave vs. being pushed away.

I don't like being angry...but I know that there is some importance in allowing yourself to be angry if you let it out in a healthy away. Punching a wall would be...ouch...and drinking my problems away would be even more ouch. I figure that sharing with people the way I experience the world can help them not only understand people with Autism, but also themselves. I know in my blog I might come across like I have things all figured out about life...but I don't. I have a lot to learn. I'm glad I know how I am when I am angry. Addressing it keeps me from doing stupid things in the moment...ignoring it never helps.

I want to be better at letting people know what I feel about things and being honest with them. I shouldn't have to reserve what I think and feel to keep others comfortable. If they've hurt me, they should know about it. They'll never grow as a person if they aren't aware of the way they might be affecting someone. I know this is easier said than done, but I think it is something that a lot of us tend to forget. You don't have to blow up at people to get your point across...that line can be difficult to find, but it's an important one. The best way I have found is writing it out...verbally communicating it in the moment can be bad because you might wind up saying things you don't mean, or it can be difficult to articulate in a calm way what it is you are exactly trying to say.

I'm happy that I did this...I feel physically much less tense and I can think clearly without profanities clouding my coherent thought process. I figure things can go 1 of 2 ways...I could either let every time I face anger let it defeat me, or I can address it, solve it, and let it go. I've had a lot to overcome in my life...even when I feel worn out an ready to throw the towel, I've got to push through.

Anger can be a good thing...it can motivate people to seek change.

Guess what?

Maddie Dugan is never defeated.

Pinball Confusion

Autism has many faces. It's one of the most unique "conditions" out there. It is so diverse, mysterious, and quite possibly one of the most fascinating things a person can have. AND...it can affect anyone in many different ways.

It's been a weird journey being the "in between" of Autism...

Anytime I have mentioned that I have Autism to someone, most people generally have the same, glazed look on their face. I think I have mastered the art of mind reading, because as soon as it comes out of my mouth, people's brains start blowing fuses and the thing that was once their brain turns into a pinball machine. They are confused as to why the ball they are playing with in their game doesn't match up with the slots that they are aiming for. And, on top of that, a bagillion lights are going off making it unclear as to what game it is they are even playing anymore. No bonus rounds for them.

In other words...YOU? Really?

I wonder what people expect sometimes when someone tells them they are Autistic. Should I start rolling on the floor, flapping my arms, and foaming at the mouth? Autism doesn't equal freak show. With the look in their eyes, it's like they have opened a can of soda expecting coke and they get pepsi instead and they experience this weird shock. People's image of Autism is of the extremely low functioning, it seems like. If you do meet someone low functioning, they aren't representing the entirety of Autism. Even though there are children and adults on the very low functioning level, it shouldn't be the only thing people look for when encountering an Autistic person.

I don't have to be low functioning in order to be Autistic. I also don't have to have Asperger's syndrome. This also comes as a shock to people when I tell them I'm not Aspi. People's minds, if they know any amount of information on Autism, think someone either has to be, like I said, on the extreme level of low functioning or just have Asperger's. Just so everyone knows, I don't have the right qualifications to have the Asperger's diagnosis. Yet, everyone I talk to about my Autism automatically assumes this is what I have.

Stereotypes are all kinds of fun, aren't they?

This game of pinball I keep having to play with people just gets more and more exciting.

Stereotype pinball...interesting concept.

I'll never forget the one person, who I least suspected to, flat out tell me I wasn't Autistic or anywhere near the spectrum...

I had a therapist for many years of my life, I believe from the age of 10 to around the age of 17 or 18. I have technically been in therapy since the age of 2 (yes, 2...) but the therapist I am going to talk about was the one I had for the longest period of time. I grew to love her. At first, I hated her. A lot. I even told her that a couple of times. I hated her clothes, her hair, pretty much anything I could pick at her for, I hated. I was a little brat at times back then...
At the age of 10 was when I was ready to ditch the whole special education system, so it was then when I thought I didn't need therapy anymore, either. Actually, the big reason I wanted to leave special Ed was because of the embarrassing, large lady with a leg limp and a loud, Jewish mother voice who would come pull me out of my normal class. As if people didn't think I was weird enough, this lady would come bursting through the door and pretty much yelled for me to come follow her...the stares of my peers and snickering was enough for me to want to jump out of the window and go bury my head in the sand box. There wasn't a lot that really mortified me back then after a certain period of time and I was a little de-sensitized to bullying, but this lady managed to accomplish making my existence as an elementary student more of a nightmare than it already was.

WOW, getting a little side-tracked there...I hate having so much to talk about :-)

So, back to my therapist. Going to therapy became like going to see the large, Jewish limpy lady, only no one knew I saw my therapist except my family. It was the concept of it all...having to go see someone and further my feelings of handicap. My therapist was actually a really nice lady. When I was younger, however, I was done feeling like a freak...to me, going to therapy was seeing myself as the child who rolls around on the floor, flapping her arms and foaming at the mouth. I was done feeling like that because it's how I felt every time I got made fun of at school. My therapist helped me through a lot of those feelings, though...after while, I discovered that I was at my best when I was at therapy, in the sense that I was able to be completely myself without worrying how any one else would look at me. It became a place of weekly sanctuary...I personally think everyone would be a lot happier in this world if they went to therapy.

One day, in therapy (I was around the age of 16), we got to talking about my Autism, and I shared with her my feelings of resentment about being Autistic when I was younger, and how I look back at how much I have changed over the years. She looked at me, puzzled.

Remember that pinball machine I mentioned earlier? Hers was going off the charts. And hers looked like the Simpson's pinball, where every time you miss the ball you hear a loud "DOH!" from Homer.

She told me I wasn't Autistic. 

Proffesional with a Master's degree in Psychology say WHAAAAAAAAAAAAA??

That was the first time in my life that someone, an adult, who had known me for a very long time, told me I wasn't Autistic. She explained that, on my records, I probably had the right diagnosis as a young child, but that in the time that I saw her from the age of 10, she never would have given me that diagnosis. Stunned, I tried explaining all of my sensory integration stuff and how when I get tired you can see it, and she wasn't having any of it. She told me that even with all of that, she wouldn't label me as Autistic. She told me nowadays I just had dysthymia, which is a long-term, chronic depression. I got that, at the time, I was pretty depressed. But, not having Autism?

I got that I was high functioning after I developed throughout my childhood. I wasn't super low functioning, but didn't meet the requirements for Asperger's. It's not like I had been lying to myself...or that adults at school or my parents had lied to me. I felt very confused after she had said that to me. I can understand, after seeing me one day a week, for an hour each time, how you might not see the "Autistic" parts of myself.  Even though I had some pent up resentment from the label from when I was younger, I didn't know how could just "be me" without the label always on the back of my mind. It's like she had taken everything I was ever told, drenched it in gasoline and set fire to it. I had resentment about Autism because of the bullying, but it didn't mean that I hadn't clicked with many of the traits that come with it, or that there were parts of Autism that I wasn't actually kind of proud to have...

Over the years, since that therapy session. I've realized some things about myself. I discovered, thanks to my neurologist, that I am in the high functioning category of Autism. I also discovered the idea of a spectrum...that things aren't 2 sided in the world of Autism. I fall where I fall on it, and I don't need approval to be where I fall. I also figured out, with a little soul searching, that labels are over-rated. I know myself...really well. I see all the traits about myself laid out on a table, and even though I consider myself to be Autistic, it doesn't define me. No one's diagnosis should ever define them.

With all the pinball machines I have seen in my life, I don't really let it negatively affect me anymore. I see it as an opportunity for social change...Autism awareness goes past trying to find a cure or whatever. It's about seeing all it has to offer to our world. I might not fit some Autism stereotype, but I embrace the impact it has had on my life without letting it consume all of who I am. Just the other day, I was out with my best friend and his new girl friend, and I was talking about something and just casually brought up having Autism and kept going on with my story. I could see the pinball machine going off in her mind, but I didn't really care. If she really wanted to know more about it, she would have asked, I didn't need to fully explain my diagnosis or validate it for her. It was made clear that it was a part of me without it consuming the conversation. I could carry on and have a good time and just being me.

Pinball machines are all uniquely made, when you think about it...

Not one game is the same. Every game will have different challenges and a different end result. 

You can't always win. Some people are just going to be ignorant. I'm cool with that.

 I'll keep playing anyway.

<3 Maddie

Just a small town girl, living in a lonely woooorld...

Picture a young girl...

by herself, in a corner.

The other kids mind their own business, carrying on with their fun.

The girl watches, wondering what normality is like.

She doesn't LIKE being alone...

She would rather it be her choice than theirs.

I find myself to be a funny person. I don't mean funny in the sense that I laugh at my own jokes (ok ok well maybe that IS true...but not what I am referring to.), I mean funny in the sense that I am, and have always been, complex. As a child, I would always watch people, study them, and want to be around them...but their lack of understanding on why I was the way I was kept me from interactions. It was easier for me to sit in shadows and enjoy others play than it was for me to jump in and join...

The fear of rejection is a funny thing, ladies and gents.

Not funny "Ha Ha" but funny "Ha...ha".

Someone I go to church with asked me the other day if I considered myself to be introverted or extroverted. He commented that he found most people on the spectrum to be introverted and not all that interested in people, and thought it was interesting that I am so talkative and personable. I didn't know how to answer him exactly...

Again, I'm complex.

Things aren't black and white in my world.

Dare I bring up a "spectrum" of colors reference?

From the way I see it, most people on the spectrum that I have encountered appear to be introverted...until you get them talking about something of their interest or knowledge base...then you can't get them to shut up (I mean that in the BEST of ways, trust me, I love it!). As a child, I was more or less this way. I didn't really speak to people unless I was approached, or I would try speaking to people at inappropriate times and not in the most socially acceptable way. 

I've always been interested in people. People FASCINATE me...hence why I love theater. My favorite activity is people watching or facebook stalking (yes, I admit it, I am a HUGE facebook stalker). I like knowing what makes people the way they are...their tics, their joy triggers, their sense of humors, etc. Seeing romance blossoming is, to me, one of the greatest things a person can witness.

However, if you were to ask me to make a phone call to someone I don't know that well...

I freak. Big time.

I don't get full blown anxiety attacks or have a phone phobia or anything like that...I'm just really not good at initiating a conversation with someone I don't have a personal connection with. Not only that, but I am BAD at asking people for favors or asking them questions. I fear bothering people...I think so much of my life has been spent feeling like I was bothersome to people, or that people had to always go way out of their way to support me. So then those feelings of resentment have kept me from being able to verbally confront people, in a good or bad way. I can't speak for everyone on the spectrum or people who are "special", but I can't imagine this not being a common feeling among "my people". 

I'm extroverted if you come to me. I can't explain why. I'm pretty much cool with talking to anyone and getting to know them...but if I am the person who has to do it, it takes A LOT for me to get there. I laugh that people think I am this huge social butterfly...

This butterfly still has cocoon wrapped around her wings.

Makes flying just a liiiiittle difficult.

You know those questions on surveys when you have to say your ideal working situation? I always say that I prefer working independently. Shocking to some people, right? I'm a thinker...I process everything in my head and formulate ideas best when I write. If I have to speak with a bunch of people in a collaborative manner, my ideas don't always come across in the best way. It's not that I don't enjoy working with people, because again, I like people, but I would rather work on my portion of a project independently. Again, the fear of having my ideas rejected is something I dread. Feelings on inadequacy...

I used to watch the movie "Shrek" and know exactly how he must have felt. Having people chase you down with burning pitch forks, running you out of town. I used to see myself in this light. The fear of showing who I was to the world kept me from real relationships. 

Knowing yourself is the most important thing you can do. I am aware of how I work best, but it's not because of fear anymore. I don't know when it happened exactly, I want to say more in the college years, I got over it. I decided that it was better to own who I was and be proud of it than to keep up this act of being a way that I thought people needed me to be like in order to like me. Pay attention...this didn't click for me until COLLEGE. It's not like this is the easiest thing in the world to come by...obviously I got glimses of it earlier on in high school and what not, but I noticed that I was never the same person around groups of people I knew.

Now, I'm me everywhere...

Politically, socially (acceptable and not acceptable :)), physically, etc.

I really appreciate those of you following my writing. This newly discovered vulnerability has not only been a healing process for myself, but it's reached parents and other people who have benefited from my story. I have found so much gratification from your notes, words of encouragement, and comments about my blog. It's nice knowing you aren't the only person who feels a certain way. What's better than even being able to write about it, is to talk about it...bringing up my autism casually in conversation has been the biggest relief and gift I could ever have.

All I've ever wanted, even from my childhood, was to help people. I feel called to it. I've wanted nothing more than to try and make a difference in the world. This is certainly getting me in the right direction. 

Rejection is done standing in my way. 

The movie never ends, it goes

On

and on

and on

an onnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnn

Oh Journey...why did Glee have to ruin you?

Anyway, hope you are all having a good summer :-)

<3 Maddie

Grass

Sometimes I wonder what it would be like on the other side...

they say the grass is greener...

but is it *really*?

I remember the first time my parents told me that I was autistic. I was around the age of 10. I had heard the term vaguely on T.V or in people's conversations, but no one had ever told me that I was autistic until later in my childhood. I didn't get it.To me, my behavior and functioning was just who I was...I didn't think it was labeled with anything other than "weirdo". I remember being told I was "special"...but aren't all kids told that they are special? I guess I didn't get what kind of "special" people really meant when they labeled me as "special"...

I remember not knowing how to really react to it. I was a little shocked, a little angry, and in that moment I felt more stupid having my ignorance being taken away from me than I did every other day before being told the news. Having that label being brought to my attention was probably the hardest but greatest thing to happen to me.
I obviously haven't owned having autism the entirety of my diagnosis like I have now, as an adult. "Autism" felt like this huge secret I didn't want people finding out about when I was younger. I was super emberassed of the word. With the way some adults in my life put the word on me, it was highly belittling of my actual intelligence. I have always been smart...I'd share my actual IQ with you, but I don't find much importance in doing so. The point is, I'm smart, and I pick up on certain things MUCH more quickly than people around me. When I was younger and teachers found out I had Autism, they didn't always treat me as a capable student. For a few years of my life, I ditched the special education system because I wanted a chance at a "normal" education and pretty much wanted to forget the fact that I was autistic (and did need some help with certain things still).
Obviously, there were times when everyone could see my behavioral abnormalities, my tantrums, my struggles academically. I would much rather have people think that I was a normal "alien-like" person than an actual alien. I can't remember the exact point in my life when I decided to embrace autism (and even go so far as to want to tattoo a puzzle piece on my arm), but I do now.

I see the differences in myself and neuro-typical people. I think differently. I don't act *as* differently in public nowadays, but I still see where the line is drawn.

I wonder about this line...is either side better than the other one? 

"Thank God I'm not autistic"...why? What is the point of saying that? I don't regret being autistic. I resent the people that treated me with cruelty because of it. Why are we, as all human beings, never content with how we are? I can't say that I've always been content with myself, but I certainly don't wish to be one of the people who treated me so badly just to be a "normal" person. Forget normality. It's over-rated. Even normal people have things they want to change about themselves. I just wish that people didn't say things like "Thank God I'm not autistic". It hurts. It takes away everything we have had to work toward to be able to associate with people, our natural intelligence, our ability to see the things you miss. Autism isn't a disability. It's a different way of looking at the world...and just because it isn't yours doesn't make it bad. 

So...the greener grass? Spoiler alert: It doesn't exist. 

You are always going to wish you were on the other side, always wanting what you can't have.

Hitting the point in my life when I could be open about being autistic was one of the coolest things I've ever accomplished. Sure, learning how to put paper in a straight line was alright, and learning how to nod politely while people talked to show you were engaged in conversation has it's uses, but being able to tell people "This is a part of me" is beautiful. And guess what? No one gives me crap about it. People, surprisingly, like this fact about me. Subconsciously or consciously, it might change the way they look at me, but the ones who matter to me are the ones who have stuck around. 

I'm rolling around in a field...the grass is fresh, sometimes damp, sometimes dry, and it's open to all

I look up at the sky, and I don't dream for what I don't have, I dream for acceptance

I see all that is around me, and I wouldn't change a damn thing.

See your grass. It's green, trust me.

<3

Maddie

The Hitch Hiker's Guide to the Spectrum: Sensory

Come here often?

Good.

I have more to share with you :)

Last time, I talked about different ways you can handle situations in a classroom setting with an Autistic person. Now, I want to touch on something...

Hah...that's funny. "Touch on something"...

Let's talk about sensory (insert cool reverb here)!

"Sensory integration disorder or dysfunction (SID) is a neurological disorder that results from the brain's inability to integrate certain information received from the body's ve basic sensory systems. These sensory systems are responsible for detecting sights, sounds, smell, tastes, temperatures, pain, and the position and movements of the body." { Stolen from thefreedictionary.com

The way I describe to most people my sensory sensitivities is like this...we all, as human beings, have 5 senses (minus the deaf, blind, etc. obviously). 

Touch...

Sight...

Hearing...

Taste...

Smell...

And there's that one kid in that Bruce Willis movie who sees dead people. Good for him. The rest of us generally have 5.
Fun fact: We actually are born with MORE than 5...but I'm just going to cover the ones most of us are aware of :)

For someone with Autism, these 5 senses are amplified, or they are under the level of normality. Hyper and Hypo sensitivity.

One of the BIGGEST characteristics of someone on the autism spectrum is to have sensory processing (or integration) disorder. ***

***Note, once again...this is not speaking for EVERYONE on the spectrum. It is very common, however, to have some kind of sensory sensitivity or processing problem with autism.

If it isn't actually diagnosed, more than likely, people with Autism generally have difficulty, on some level, with sensory.

Here are some examples of sensory problems I have had (or still do), and what people should be aware of for dealing with people on the spectrum (because, from what I have seen, people with autism tend to feel similarly about certain sensory triggers)

TOUCH:

When I was younger, touch was a big deal for me. I hated being lightly touched. I either needed to be squeezed tightly in a hug, or generally not touched at all. I wasn't a cuddly child, and I hated having my hair brushed. For someone with autism, it can feel similar to an electrical shock, or a bee sting, or a paper cut...anything on that scale that is a sharp and often uncomfortable touch. I also liked being thrown to the ground. The pressure from falling and landing on the ground like a belly flop was REALLY soothing for me. My mother joked that she wondered  if people thought she was abusing me when I was younger, because she would literally push me to the ground and I would ask for it over and over again. The rapidness of it and the adrenaline rush felt good for someone who felt like they could explode at any second. Often, I felt all kinds of pent up tension inside of myself and often I would not know how to handle this build up of anger...

My parents had all kinds of tools they used for me when I was younger. I had a treasure chest filled with rice that I would touch, I slept in a hammock for a while (that was fun :)), I was in the pool A LOT (hours and hours and hours...I think being autistic made me a good swimmer!), all kinds of different things. I needed things to touch because every part of my body felt ultra sensitive. 

Today, I'm not as sensitive about touch...I enjoy hugs, I can handle people touching my shoulder when they talk to me, etc...if you read my blog post about being a werewolf, you'll understand that I am sensitive to it when I am tired. I tell my husband that the best thing to do for me when I am upset is to give me a big, tight hug where it seems like for anyone else it would be painful, or to just not touch me. If you were to brush a feather on me when I was tired or upset, I would feel literally like punching a wall it hurts that badly. Many people feel similarly if they are on the spectrum...

For the record...when I give birth some day, I WILL demand an epidural. I'm not toughing it out. 

Drug me up.

Things as a parent or person encountering a person with autism should know about touch:

 Ask. Ask ask ask ASK ask. If you find that there is some reason you absolutely need to touch us, it's better to be safe than sorry. Again, not everyone on the spectrum has an issue with touch, but it's appreciated when you keep that in mind! (This doesn't really go for me much except if I seem visibly upset or shut down...then your touch may be unwelcome.) If you have a sensory difficult child and need to touch them, firm is better than soft generally...don't be nice about it. The firmness of your hand on ours can feel comforting.

We like to feel secure and tight in small spaces (If any of you know Temple Grandin, google her. She talks all about this as an autistic person who studies animals...it's fascinating). If we are being tucked into bed, we like the feeling of a cocoon...tightly wound up, our whole bodies feeling hugged around. Sleeping in a hammock was actually really nice...it just didn't work well with the walls in my parents house. Think about this for your child, or if you have a hard time sleeping and you are an autistic person.

Just because we don't reciprocate physical touch does not mean we do not love you. I know many parents who feel like they aren't connected to their child because they don't enjoy their touch. Even though we might not like the way you show your affection doesn't mean we don't have any for you. It's important to keep that in mind...I know that neuro-typical people often have physical touch be a part of how they express that they care, but that doesn't mean it is the only way. We like you all the same if you try to understand the ways we show we care that may not be in your way :)

And now I have "Let's Get Physical" stuck in my head...

moving on...

SIGHT:

SO many people with autism are visual learners. As a friend of mine put it the other day, we miss the things you see, but you also miss the things we see. Although we can seem like we are oblivious to a lot of things, we actually have very heightened visual senses. I find that I see a lot of minor details that most people would normally overlook in certain situations. I notice many things...I find myself constantly looking around a room, seeing everyone in the room's faces, the cracks in the walls, whats out the window, counting the moles on people, etc. I feel like I can see everything without even trying that hard. People might find it rude when I don't always make eye contact...but a lot of the time, I have a better time retaining what you are saying when I don't look at you in the eye...I am an odd-ball for sure :)

I think sight is my strongest (and favorite) sense...I have a really good eye for color, (again) I notice things most people don't, I'm REALLY good at puzzles, I always pass those "mind trick" drawings, etc. I think the down side to my strong sight is that I have a really hard time being outside in the sun for long periods of time without sunglasses on...good thing they look fabulous on me :)

Sight is one of those things that, if I am tired, if combined with other senses, can be hard to deal with. If you are at a really loud concert with smoke machines and bright lights...it can get super overwhelming.
I am also VERY easily distracted...it can be hard to get a person with Autism's attention because we are so busy mentally soaking in everything in a room that we forget about what you might necessarily want.
People on the spectrum have a hard time keeping track of things...I find myself losing things CONSTANTLY. I have to work very hard to keep track of things among my "organized chaos".
There is also difficulty with spacial relationships...I have a hard time parking my car sometimes because I get anxious about hitting the car next to me, even though I may have "plenty of space".

Things as a parent or person encountering a person with autism should know about sight:

Here's the deal: Eye contact is a socially acceptable behavior in American culture. It is a sign of respect, and it shows that you are engaged in conversation. However, like I have said before...

We don't speak your neuro-typical language!

We modify behaviors to make YOU feel more comfortable...

I feel kind of strongly about this, and I know people won't necessarily agree with me. I feel like eye contact when speaking with someone isn't the most important skill to develop. I, personally, have worked very hard to change this behavior for myself because it is a big part of theater and it builds a connection with my scene partner. However, I don't see why people get so bent out of shape about eye contact...there are so many other things you could be focusing on with your child to help them relate to other people, making eye contact isn't the end all of end all. Look at some Asian cultures...a lot of them have a hard time finding jobs in America because eye contact isn't part of their culture. In fact, making eye contact with someone who is superior than you is considered rude. Employers feel offended and then that Asian person doesn't get the job, even if they were the most qualified. It's crap. We as an American culture should try and have a better understanding of communication, verbal and non-verbal. Again, just because we "special people" don't look you in the eye all the time doesn't mean we don't care. In fact, it could mean for some of us that we do care and that we are trying to tune in our auditory senses to hear what you are saying, and cannot do that at the same time as you are speaking. It's ok. Our culture has this thing about being offended all the time...

Get over it. 

https://www.youtube.com/watch?v=9tn2EhGK5ok

Now, I'm not saying that someone with Autism NEVER has to make eye contact...it can be a good teaching tool. But you don't have to nail it into our heads how important it is to look at your eyes...we get it. Saying it over and over again doesn't help and it doesn't help us see the point in doing so. There are worse things we could be doing, let's be honest. Some of you don't have very interesting eyes anyway ;)

Other than that...just keep in mind the things I said above about brightness, losing things and whatever. Again, if you have the ability to look into occupational therapy, I would highly consider it. Desensitizing senses can make life SO much easier for us (again, not for YOU, but for US).

Still with me?

Need a vodka break?

Stop it. It's 1 in the afternoon. 

Let's keep going!

HEARING:

I hear everything or I hear nothing. I can hear a conversation clear as day in another room, or you can be trying to get my attention while I'm sitting right next you and I literally can't hear you. It's much better now than it was when I was younger...trust me. Hearing is one of the biggest hurdles I have tried to overcome, and many people like myself still are trying to overcome. My parents thought I might be deaf before I was diagnosed...I wasn't responding to my name and I also didn't really speak till age 4 (now you can't really get me to shut up!) Remember my blog about the fireworks? It's like that with any kind of sudden, loud noise...I tend to freak out a little. I only do a little on a normal day, but the werewolf thing can happen when I am tired, and it becomes a much bigger deal than it really needs to be. I feel like I can walk into a room and hear all the details of every conversation, I memorize songs by listening to them once...hearing can be quite fun. Or a big pain in the ass. Being given instructions or notes about things can be ridiculously hard for me...if I look at you funny after you have given me a list of tasks, just know it probably went way over my head and that I either need it repeated or I need to go write it down. I've gotten better at advocating for this sort of thing, but it can be hard to remember in the moment. Surprisingly, I have a really easy time articulating my thoughts or ideas, and a lot of people on the spectrum struggle with this. However, I think I may have undiagnosed dyslexia when reading things out loud for the first time (why did I go into acting again...?). It's like hearing the sound of my own voice catches me off guard when I am also trying to process the information I just read. Too many things going on at once. I hate hate HATE when multiple people try talking to me at once. I literally cannot process everything all of you are trying to tell me at once, and it gives me a great amount of frustration. Hearing is awesome and awful all at the same time. Unfortunately, sometimes one of the only things to help myself when I am frustrated and tired is to swear, it's therapeutic. The crispness of cuss words literally feel like I am popping bubble wrap...it's soothing.

A little advice...

-When giving instructions to someone with Autism, if you can, write it down. The combination of you telling the tasks to us AND showing them can help us process it better. 

-Try not to have multiple people speaking at us at one time. Most likely, it won't stick, and it drives most of us nuts more than it helps. 

-Be mindful of loud, sudden noises...we can't always help feeling overwhelmed by it, and things happen, but if you can, remember it.

-Calling our names from across a room isn't the *best* way to get our attention...in fact, for many of us, that is one of the first signs in getting our diagnosis. Come closer, we don't bite...hard.

-If someone can't articulate a thought or an idea verbally, see if they will write it out. That can help them process their thoughts.

TASTE:

There are some foods in my life that I have maybe tried once or twice that I will never eat again in my entire life. Did it taste bad? Not necessarily. More often than not, someone with Autism will have a hard time eating certain foods because of the texture. Hypo side of this: I would eat weird things and not realize that it was bad...like the one time I ate a slug when I was little and it had no effect on me what-so-ever. Luckily, I grew out of a lot of my texture sensitivities...seriously. I've come far. I was the kid that literally ate nothing but Peanut Butter and Jelly sandwiches the early parts of my life. Up until the age of 19 or 20 I literally didn't eat vegetables. Now, I've found stuff that I like that is good for me. It can be really hard to explain why texture is a big deal...it literally feels like eatting nails when some things have a weird texture to them. Now, I don't walk around looking at foods and going "that looks weird, or is bumpy, so I won't eat it" (to be honest...somethings I haven't tried because they are kind of strange looking). But, you never know unless you try. I've had to learn that my whole life...not just with food, but with everything! The best thing a parent can do for a child with Autism is to guide them to try new things...food seems like such a basic idea to do this, but it really is a big deal. If I hadn't had my husband getting me to eat new things, I wouldn't have found some of my new favorite foods! We don't have to like everything, but if you give us options, eventually we will find something we like. Parents: you don't have to settle and stay comfortable with the same foods...find what works, and then see if you can build off of what you find is good. Finding foods your child likes is good...but there are so many possibilities you might not have even thought of. If they are having a hard time getting a balanced meal, look into what options you can find. Lack of veggies? Try veggie juice to get the right servings. We don't need to eat like the rest of the world to get what we need out of life...try and find what works. A big part of the whole taste thing is age...many autistic people grow out of their taste sensitivities, like all humans do with age, it's just more of an extreme for us.

SO...

Don't knock it till you try it :)

SMELL:

To put it simply, Autistic people with sensory integration disorder...

-have difficulty discriminating unpleasant odors

-are unable to identify smells from scratch 'n sniff stickers

-don't notice odors that others usually complain about

-fail to notice or ignores unpleasant odors

-make excessive use of smelling when introduced to objects, people, or places

Some of us need a little help :) Keep us away from poisonous things, obviously. But if we like things you don't, or vise versa...not judging. Ok? Thank you.

It's kind of cool how I can smell a lot of things...but it can get overwhelming. I am really good at differentiating similar smells.

So, I know this was super long, but I hope you got a lot out of it...

I think I have harnessed  my Autistic tendancies into a super power...

Turn bad things into good. Don't dwell...accept.

<3 Maddie

:)