Saturday, 20 December 2014

The Chihuahua that called itself a wolf




One day, a Chihuahua decided to call itself a wolf. Silly little dog, you are not a wolf; are you? Well as of 1993 Canis familiaris (dog) was reclassified as Canis lupus familiaris; yes wolves. Perhaps the Chihuahua was feeling a little manic and a little hyper and wanted to call himself a wolf. He wanted to feel strong and intimidating rather than to be seen as a small harmless dog that has closer resemblance to a rabbit the fierce hunter. He did not want to be thought of cute but as ferocious. Except that he is not! Most would agree that a Chihuahua is not wolf. But that is just it. Scientifically speaking, genetically speaking, he is the jury is out! So you can go call yourself a wolf if you like little Chihuahua. We will still laugh at you when you yelp and try to hump my leg. Now let’s say this Chihuahua wanted to call itself a Great Dane or a Collie; can it do that? By the same reasoning no. because there are different breeds of dogs and they are all wolves.
I was recently diagnosed with Autism Spectrum Disorder under the DSM-V. Right after the diagnosis there is a line stating that my presentation is well characterized by the diagnosis formerly known as Asperger’s Syndrome. Yes; I am an aspie! “But you should not call yourself an aspie because Asperger’s is not a diagnosis anymore,” come the nay-say-ers and the lumpers. Lumper is a term used in taxonomy to denote people with a tendency to reclassify a group of closely related species as once species. A classic example are those that prefer the classification Homo sapiens neanderthalensis over the more widely accepted Homo neanderthalensis. A Neanderthal presents a little differently than the average human and you would likely be able to differentiate if you saw one (they are extinct). Since the reclassification of Asperger’s in 2013; some people have been pondering whether to keep calling themselves aspies or if they should call themselves autistic. The answer is: both! On top of that, Asperger’s is still recognized as a type of autism. ASD-Asperger’s type is a classification under the DSM-V. it is listed next along with the more classical type and cases where the child appeared to develop normally and then lost the skills that it had gained around 27 months (or so). These ones do not have neat little names like “Asperger’s” but they are still different types and if someone asks, “what kind of autism do you have?” You could refer to these three classifiers or you could refer to the levels system (mild, moderate or severe). You could also use both if you want to get really accurate; alternatively you could just prefer not to specify and leave it up in the air. This is seen by some people on the spectrum who identify as this way as more inclusive.
This new classification is also good because people were not sure whether Asperger’s was just autism or not. Now we can say that it is! People also used to think of Asperger’s as ‘autism-lite’, “You are not really autistic…” This often led to aspies being written off for their experiences, that they do not need help and that they can get by just fine. Now you can be classified as Asperger’s type along with mild, moderate or severe on top. This can help providers better gage how much help you need and recognize the person’s ability to grow and adapt. A person’s needs can also change. A severely autistic child may grow up to be only a mildly autistic adult depending on the kind of support and therapy that they receive likewise their condition could worsen over time. But we must stress, this person is still autistic. Just as a dog will never be not a wolf; nor will it ever be a cat or a rabbit.

So if you want to call yourself an aspie if you were diagnosed prior to 2013 or if you were diagnosed after and you feel familiarity with Asperger’s then go ahead! I had a friend who I once knew often thought of themselves as an aspie (no diagnosis) and someone said, “Asperger’s is just autism now.” Yeah ok, that may be true. I also have a wolf at home; his name is Spot!

Tuesday, 29 July 2014

Saying Goodbye

We are the generation that has grown up on the word "Asperger's" we have invented pet words that we call ourselves like "Aspie" and "Aspergerian" to define us. The word "Asperger's", its diagnosis and what it means to people has left a mark on this generation. Asperger's meant that it was okay to be weird and that there were other people around the world who thought like and acted like yourself! It was a term that defined us by our gifts and our quirks and did not demonize people the way simply "autism" did. So it may take a little longer then the time it takes to put out a new book to completely say goodbye to Asperger's, but by starting to say goodbye to it, we can open a new door to what it means to be autistic for everyone on the spectrum.

Monday, 12 May 2014

Allistics, how to pass


1. Be honest
Say what you mean, do not use sarcasm or double negatives (unless you know how to use them) or ask ambiguously worded questions. Be straightforward. Ask for an explanation if you need it
 
2. Take what we say at face value
if you are told that you look fat in something, then do not be offended. Just know that it is the truth. Inflections do not necessarily mean that we are being rude or that we someone is excited. If you said something stupid then you said something stupid, you are not a stupid person. That takes about ten stupid things in one day, then you need to re-affirm someone’s trust in your intelligence
3. Do not make eye contact
When you first encounter someone it is good to meet their eyes, but only for an instant. Constantly looking at the person’s eyes makes them uncomfortable. Look around them and look them up and down. Get a good feel for the person and their surroundings
4. Do not be mundane
When you wish to engage with someone do not ask them about the weather or comment on the conditions of the day. Comment on something they are reading, mention a character if you know the book. A good way to start is to list three main interests and then proceed to ask them to tell you about their interests. This way you are engage the person
5. Move how you feel
When you are excited, jump up and down and raise your voice. When you hear something loud and annoying, start rocking and smacking yourself. When you are sad, feel free to cry if you like. It shows us that you are trying to understand what we are going through. It also shows that you are not afraid to express yourself in front of others

Thursday, 17 April 2014

"I have no right"


Every time someone tells me that I have no right to say "I have Asperger’s"
Is a reminder of teachers not knowing what to do with me whenever I threw a temper tantrum
Is a reminder of me crying in the corner when the phelt-board was taken away in kindergarten
I was four, she told me in probably the rudest way possible, "It has gone bye-bye; go play with something else!".
Is a reminder of me constantly going for the blocks during "free time" in school and creating elaborate shapes and patterns and not socializing
Is a reminder of not having any real friends all through grades-school
Is a reminder of me following people around in school and thinking they were my friends
Little to know they merely tolerated my presence
Is a reminder trying to talk to people only to be told that I am rude and unwelcome
Is a reminder wondering why kids just never seemed to like me
Is a reminder of spending hours on the jungle-gym alone
Is a reminder of me not letting anyone speak and jabbering on and on when talking to them,
And then walking away thinking they enjoyed that and that they were my friend
Is a reminder of teachers being astounded by my comprehension of science and math, yet puzzled by my obvious reading difficulties
Is a reminder of the constant Ns at the end of my report card in things like "conflict resolution"
Is a reminder of everyone recognizing my lack of social skills
Is a reminder of being so happy is someone showed even the slightest ounce of niceness to me,
I thought they liked me and drove them away with an obsession
Is a reminder of every time someone would tap me on the shoulder I would puch them in the face because of my hyper sensitivity
Is a reminder of people calling my brutal honesty refreshing
Yet getting upset when I give an honest and untactful opinion
Is a reminder practically becoming best-friends and jumping up to hug teachers and not understand why they are not
Is a reminder of my naiveté whenever someone said "do this and I will be your friend" only to have them laugh at me
Is a reminder coming to school wearing a too-short skirt and having everyone laugh at me and me asking, "What is so funny?"
Is a reminder of myself constantly answering rhetorical questions
Is a reminder of escaping into math problems because the world of numbers seemed like a much better place
Is a reminder of myself yelling that I felt like shit, during a pep-rally when everyone else yelled happy thoughts
and getting pulled aside for heckling
Is a reminder of being called sociopathic for not readily interacting with children growing up
Is a reminder of, at 12 years old, just wanting to die because no one liked me
Is a reminder of myself writing a poem comparing my mother to pig a for a simile assignment in grade seven
and the teacher telling me she could not mark it because it was not a positive comparison
Is a reminder of running off into the woods and using nature as my escape
Is a reminder of throwing myself at a guy and the next day thinking he liked me
Is a reminder creating elaborate role-playing games with myself to pass time
Is a reminder of me waking up at 430 in the morning whenever I missed my cartoon from the night before
Is a reminder that I still lay my clothes out for days in advance
Is a reminder of putting my clothes on underneath footy pjs before going to bed
Is a reminder of sitting in a corner during a formal meeting because I was overwhelmed by all the people and the noise
and the supervisor firmly telling me at 17, "only four year olds sit in corners"
Is a reminder of me climbing a try to decipher the species, thinking that I was taking initiative only to have my co-op supervisor tell me to get down or she'd kill me
Is a reminder showing up to a formal presentation at a big pharmaceutical company in sweat pants
because the teacher said you could not wear jeans
Is a reminder of constantly asking why to just so answers
and having the person on question just continue telling me "that is the rules"
Is a reminder of university professors praising me for my participation and yet telling me that I talk too much
that I take pride in interrupting lectures and that I monopolize class discussions
Is a reminder of a professor pulling me aside to tell me their story of how their son got diagnosed with Asperger’s like they knew that's what I have
Is a reminder of the woman who works with autistic children saying "ash-burgers" to me when I was twirling string and staring at it with extreme focus
Is a reminder of me telling my doctor at 18 what I have and him telling me that an evaluation would take months and that is would not be covered
Is a reminder telling a girl in biology class that I (may) have as Asperger’s, and she telling me that everyone in class already guessed that
Is a reminder of my X partner's telling me that his aunt asked him (and his mom) if I have Asperger’s because of my odd behaviour; and her son was HFA
Is a reminder of going half crazy and slapping myself on the leg whenever someone moved something of mine
Is a reminder of dreading summer vacation because school was over and my routine lost
Is a reminder of any spinning ride at wonderland making me feel relaxed
Is a reminder of spinning in the kitchen only to watch the ceiling dance
Is a reminder of finding the strangest places to study and having the teacher tell me to get off the ledge
and not understanding their concern for me
Is a reminder of climbing the highest tree because I did not have a good sense of fear
Is a reminder of my obsession for patterns and small detail
Is a reminder of my fondness of classification and identification
Is a reminder of my ability to memorize large sequences of numbers yet forget where my keys are
Is a reminder of being told I took advantage them because I did not understand the situation until it got too uncomfortable
Is a reminder of hating myself when I realised that I may be this way
Is a reminder of just constantly saying the wrong thing
Is a reminder of me just wanting to give my parents a normal child, but knowing that I could not
Is a reminder of just wanting to fit into a world where it feels like you are from a different planet
Is a reminder that no matter what I do, people look at me with a raised eyebrow
Is a reminder of someone telling me "you can do better"
Is a reminder of every little thing at once


Every time someone tells me that I have no right to say "I have Asperger’s"

Is a reminder that I put in an A+ effort at a C performance at being a normal person

Thursday, 3 April 2014

A metaphor for Autism in the Media

Lisa was the princess of the highest kingdom. She loved her sister dearly. They loved to play make believe games in the night around the castle together. Lisa loved her fondness for imaginary play. She soon discovered her fondness for creating new world and escape. She also had a brilliant gift for thinking and seeing patterns. Her sister claimed that there was no one else like that in the world. With this gift came a heightened sense of awareness, she could hear and feel everything around her more than anyone else in the kingdom ever could. When the noises got too loud, she would cover ears run away. Sometimes she would scream and thrash to make whatever was bother her lesser. Her parents were quick to see the negatives and they feared that she would one day hurt her sister.

So they looked her up in her room and tried to make her control her imagination and control her mind. But the need for control only increased her anxiety and made it worse. In fear, her parents never let her out of her room and never let her play with her sister. The once best friends grew further and further apart and began to resent one another.

With her 18th birthday came her coronation and came the big celebration. Lisa was allowed outside of her room and into a big crowd of people for the first time in over ten years. She was anxious, which only made the noises around her louder and her imagination run wilder. Everyone mingled with one-another, while Lisa remained in the corner, she did not feel like she connected with anyone there, all that chatter simply felt like bees buzzing in her head. It was hard not to drown it out. Suddenly, her sister came to her with a strange man she’d just met asking for her blessing. Lisa could not give her sister her blessing for a man she’d just met, not matter how much she loved her. Outraged, her sister yelled at her and accused her of being unfair. She accused her of shutting her out and being cold-hearted. Her voice got louder and louder and Lisa was having a hard time containing herself. She finally snapped and yelled to the high-heavens “Enough!” With that she stomped her feet and through her hands up in the air in rage of all the noise and all the people in the room. Everyone took a step back from her in shock. How could they ever trust such a volatile queen? Devastated, Lisa ran right through the castle and out of the kingdom, never wanting to show her face again. She ran away in hopes of finding a place she could be herself with her thoughts and never need to think of anyone else again.

Thursday, 27 March 2014

Self Diagnosis

I have heard many a backlash against self-diagnosis and post-hoc diagnoses of deceased people on the autistic spectrum; claiming that we have no right to identify with those on the spectrum and that our struggles are not as warranted as those with a piece of paper or a record.
Firstly: autism, particularly the high functioning types, are often misdiagnosed and underdiagnosed in women; on top of that, it can take months to years for an adult seeking an autism diagnosis to find someone willing to evaluate them. Even if an evaluation is given, they are often not properly reported or officially documentation is not given. 
Secondly, autism is often vilified in the media and in the general public as an awful disease and autistic people as these awful subhumans who are out of control, will never hope live a normal life and need to be locked away and marginalized. This picture of autism may lead parents, and caregivers to hold back on a diagnose on a relatively smart, verbal child with behavioral issues as a result of the backlash they will receive from mentors and peers.
    Self diagnosis is good because it brings awareness to a variety of people whom do live normal lives and their experiences with autism. Even if there are  people out there not on the spectrum claiming diagnosis they will be snuffed out by the autistic community because they simply do not match

Embrace who you are! 

Friday, 24 January 2014

Aspergers

I have been wanting to write something like this for a while but never knew quite had the words
When I was fifteen, I thought that autistic people were completely non-verbal and could only utter nonsensical sounds, that they would scream and make these weird noises all the time and that they were simply in capable of understanding what "no" meant
I thought that they were destructive and could not be responsible for their own actions
I thought that they were the children whom were not toilet trained until they reached close to double digits
I thought that they all had really low IQs and would not be able to learn their ABCs for anything
I thought that they had zero motor skills and could not hold a fork or write their name
I thought all the yelling and screaming that these people did was on purpose to get attention
I think what is most scary is that I saw these children as lessers and as subhumans
It also never occurred to me what happens to these children when they grow up.

But that all changed one day, and I was forced to re-examine what it meant to be autistic
Ever since I could remember, I loved spinning. I would twirl in my house until I was sick;
My favourite thing in the jungle-gym was the tire swing and just spin until I was sick
I have always been mesmerized by rhythmic gymnastics, watching that ribbon twist and swirl
I would pick up pieces of string and ribbon and swirl them whenever I had the opportunity
I guess that is how it started; a woman who worked with autistic children at the time saw me doing just that;
She had also heard me talk about autistic children with a kind of ignorant smugness that mad her upset.
She started laughing and said, "Oh my god she's stimming, she stims just like my cousin who has "ash-burgers". Oh my god this girl has "ash-burgers""
I kept my head down this entire time.
"That is it, I am diagnosing this girl with ash-burgers!"
I looked up at her and went on with the rest of my day, seemingly glazing over what had just occurred.
I refer to what she said as "ash-burgers," because that is honestly what I heard out of her mouth that day.
That evening, I put the words "ash-burgers" into Google expecting nothing
Thankfully Google came back at me with "aspergers" instead. "Sounds good enough I thought"
I read the description over and over
"high functioning autism"
"often normal to high intelligence"
"Absence of speech delay"
"Lack of ability to interact socially with others, has a hard time with communicating with people, lack of innate social skills"
"Problems with empathy and relating to others"
"brutally honest and very literal"
"High anxiety and trouble in crowds"
"Prone to temper-tantrums way past what would be considered a "normal age""
"Lack of understanding of personal space"
I quickly realized that this definition was me. That I had aspergers, that I was autistic.
I had to drastically change my understanding of what it meant to be autistic and what is meant to be viewed as having a disability
This took me years to really change my thinking completely; and to this day I am not sure I have yet
I always knew I was different; but I never even thought that I could have a disorder of this magnitude
I also felt like I was a lighter version of the people those textbooks and websites described
And then I read that this condition was understudied in girls and often was more mild when documented
When documented, does that mean that there are people out there that are like me, walking around having this thing, "this disorder" without even knowing it?
I brusshed it off, no way I am autistic! I kept going on with my life
But everytime I did or said something that was slightly offbeat and strange the word "aspergers" would pop back into my head almost reflexively
It hurt, I always knew that I was not normal and that everyone saw me as strange and avoided me like a virus
But I never thought it was because I was "clinically not normal"
All my parents wanted was a normal child, and I could not give them that no matter how hard I tried,
After everything I had put them through with not being that normal child I could not bring myself to say to them
"Guess what, I will never be normal, I am autistic!"
Also, I just thought that my parents would never understand the implications of what I was saying, nor would they take it seriously
This is why we still need aspergers in our vocabulary
To give people who may not be readily recognised as autistic a voice, a voice that is separate from autistism
Most Doctors, even now, will not consider an ASD diagnosis if the kid can talk and has a reasonable IQ; even less so if the child is past a certain age
This battle becomes even harder once the child has become an adult and has gone off to college
It seems like psychiatrists tiptoe around autism as if it does not exist but are all too happy to throw antidepressants at me
The new definition is of autism in the DSM is broader but also much vaguer
which will leave more and more people behind, people that need help communicating and just want someone to understand when they feel overwhelmed rather than having someone telling them to "Suck it up!"
They need people to understand that they not purposefully being rude and defiant, that they genuinely do not understand certain things that others just seem to know
People with autism need to embrace what they have as a gift, a gift for seeing the world in a way that no one else can
We see the world with fewer limitations and fewer rules
It is this view that simply helps us to navigate it differently
Not recognizing these people as autistic means that they are more likely to be arrested for being "disruptive" when they are really just overwhelmed
Not recognizing these people as autistic means denying capable people opportunities because they think that they do not want to talk to people
Not recognizing these people as autistic means walking away from someone who has lots of potential because you thought they were rude or insensitive
Not recognizing these people as autistic means means that you deny people an opportunity to reach their fullest potential
On the other side though, calling someone autistic and placing them in a special learning class where they cannot learn anything hurts them more
This is why we need aspergers, so that eccentrics and oddballs that would normally just be labelled as weird and rude have voice
And that people recognise that we have abilities and that what we do can be enduring
We are not choosing to be rude and defiant, we just simply refuse to walk through life the way Neurtypicals do
It took me a really long time to be comfortable with being autistic; but now I realise that it is the only thing that makes sense!