Tag Archives: Autism Acceptance Month

Autism: Unique is Awesome – Expressions of PosAutivity: #AutismPositivity2014

By Katrina Moody

Let’s Mold Different Perceptions of Autism and Autistic People

Autism Acceptance - because Different is Beautiful When Suzanne Wright penned her opinion piece for Autism Speaks last November, she didn’t inspire me to action, she didn’t help anyone understand the spectrum of Autism, she didn’t help autistic people (adults or children) feel valued and respected.

If you haven’t read the letter you can Google for it, I refuse to link to it. I know there are some parents who feel Autism Speaks really does speak for them and their experience in dealing with autism. But after seeing her words literally call my kids a tragedy, imply that they are missing, imply my kids and others who happen to be autistic are singlehandedly destroying their families, their parent’s marriages …

I was convinced that someone somewhere at that organization had lost touch with the Autism I know and love. And they don’t know the autistic folks I know – because the adults and children I know, including the ones I adore and love and call my own – they are amazing, beautiful and unique people.

Respect our Differences – even our Differences in Opinion

I found, over the weeks and months that followed, that I was increasingly sensitive to the negativity, the almost dehumanization, that seems to accompany some forms of autism awareness. Even some parents would use words to describe their experience that made me flinch. Maybe they were having a bad day, or they were just at a different point in their journey, but it made me increasingly uncomfortable.

Why was I so sensitive?

Not because their experience of feeling overwhelmed was wrong … it’s not about being right or wrong … it’s because the negativity was becoming harder for me to deal with. I actually wrote a friend in a panic wondering if something was wrong with me. I found myself upset by these posts because they seemed to be all I was reading.

Let me reiterate that there’s NOTHING wrong with parents venting and dealing with their experience in their own way. And sometimes I vent too …  BUT I follow a few rules …

Our Rules of Posting:

  1. I don’t share deeply personal things in a public forum  –  when I post something or ask for prayer I won’t always include all the details (sometimes even friends-only can end up letting a LOT of folks see that private post).
  2. If I share something about my husband or my kids publicly, I ask myself if they would mind having it out there. And if I can, I ask them (Bobby and Andy always have final veto power over what I publish, and while Logan isn’t able to verbalize his wants yet, my goal is to share with respect foremost in mind).
  3. I’m careful of details I put in groups, too – Facebook Groups (and most groups and forums online, honestly) come with three different levels — Open, Closed, and Secret. You must assume ANYONE can see something if you post it in an open group, and should assume your own risk in other groups. Trust the people in the group before you share to even a secret group, because once it’s out there, it’s out there.
  4. Ask yourself this: Do you need to vent? Could it hurt my child’s feelings? Could it embarrass them unduly?
  5. There’s more but that’s the biggest part of my own internal checklist (please leave your suggestions in the comments!). There are safe places to vent, and there are safe places to go if you need help, or if you are in crisis. Please reach out to me if you need to hook up with any of those or if you just need an ear…

Read more at: http://katscafe.org/autism-unique-awesome

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An Autistic Brain #AutismPositivity2014

By Debra Hosseini

“Have you had a brain injury?” the neuroscientist asks me after performing an EEG.

“No,” I say.

She points to diagrams of my brain with the different colors which measure delta, theta, alpha, and beta waves.

“You have an autistic brain.”

“You see this?”

I look at the four pictures which are labeled Z Scored FFT Coherence.

It looks like a platter of tangled red spaghetti on all four pictures.

“You have hyper-coherence. Whether your eyes or closed or open your brain waves look the same.”

“Well, I guess that explains Kevin,” I say. Kevin is my Autistic son.

“I can help that with neurofeedback,” she says.

She places another cap on my head which has lots of wires. She puts some sticky goo in my hair and hooks the wires to a machine which is attached to a computer. She inserts the movie “Pretty Woman” in the DVD drive.

I’m to control the brightness of the screen with my brain. This is called brain training.

“You’re doing really well on this,” she says. I’m motivated to make Richard Gere brighten up so I try extra hard.

After the session she takes off the cap and my hair is plastered to my head with the sticky goop.

“I hope you aren’t going anywhere,” she says.

At home, after I wash my hair I call up my best friend and tell her about my brain training session.

“What’s wrong with having an autistic brain?” she asks. She like me has a child on the spectrum.

That makes me ponder.

“I don’t know,” I say.

I wonder how my hyper-coherent brain effects me.

When I google hyper-coherence I find Tourette’s and OCD are symptoms. I know I can get stuck on a thought. Kevin does this too. And so does Kurt my Aspie boyfriend. Stuttering is also a sign of hyper-coherence. I never stuttered but have difficulty with word retrieval sometimes.

“A lot of programmers have hyper-coherence,” Ben, my friend Nancy’s son, says. Ben is Aspie and probably hyper-coherent too.

My past occupation was as a computer programmer and systems analyst.

I continue the biofeedback sessions for six more times and get another EEG. Guess what? I’m no longer hyper-coherent.

Do I feel any different?

I feel my brain is a little sharper now. And I’m a little more relaxed.

“I’d like to do an EEG on Kurt’s brain,” the neuroscientist says.

“Kurt has Weitzulsucht,” I tell her.

“Huh?”

“It’s a disorder that causes incontinent punning. Oliver Sacks talks about it. He can’t control himself. It’s from a frontal brain injury when he fell into the diaper pail as a baby,” I continue.

“Well, I bet his brain EEG would be really interesting,” she says.

Yea, that’ll be another story.

So I’m writing this for the Autism Positivity Day Flash Blog. As I reread it I don’t know if it’s positive. I know that Kevin, my Autistic son, Kurt my Aspie boyfriend and myself all fall somewhere on the spectrum and I feel pretty positive about that. I do know I like to be around autistic people. They have no artifice, make good friends, and are empathetic (unlike what most people seem to think).

Freud once said that nobody is “normal,” and that to me is a good thing. It’s the people who pretend to be normal who may have the real issues.

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What We Have Learnt – #AutismPositivity2014

By Sabrina Landry and Rebecca Atkinson


2e0db-screen-shot-2014-04-21-at-6-45-04-pmToday is the last day of Autism Awareness Month which means that for all those whose lives are not touched by someone on the spectrum or living in the spectrum themselves Autism will probably become a passing thought until next April that is.

I love the Autism Positivity Project. To often the negative attributes of Autism are highlighted and the positive things that Autism has brought to us pushed aside. Autism may have it’s challenges but the people who have Autism are beautiful, caring, compassionate, intelligent, honest, driven, and amazing individuals. As a parent my greatest fears are that my Monkey will be perceived as different, not accepted, and that he will therefore suffer heartache because of this. I hope that by the time my Monkey is an adult there will be a more positive outlook on autism but until that day comes I will continue to build his confidence by reminding him of how amazing he is and all the wonderful things he can do. I always tell him that he can be whatever he wants to be when he grows up regardless of Autism and I truly believe this.

Rebecca and I decided that for our Autism Positivity Post that we would highlight how autism has positively affected us and what our Ausome children are doing…

Read the rest of this post at:http://spectrumwarriors.com/2014/04/30/what-we-have-learnt-autismpositivity2014/

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Quiet Please #AutismPositivity2014

By JD Scott  


I have an old self-portrait
That I made some years ago,
The last of several works of art
I’d stopped when feeling low.

 

See, sadness, pain and anger
Made me seek a doc or two,
Lo and behold, I soon found
My depression was a clue.

 

It turned out I’m autistic
With Asperger syndrome, gad!
It was a shock, but sure explained
Why I had felt so bad.

 

For being hypersensitive
And needing time alone,
For carrying out my loved routines
Or turning off my phone.

 

I wanted to retreat some place
That’s quiet, calm and slow,
The world was way too noisy
But what was I to know.

 

Well time has passed and I can say
I now appreciate,
What I perceive is based upon
The wiring in my pate.

 

JD Scott © 2013

@AnEndInItself

Listen for the Light (2010) by JD Scott

 

Published in Autism West Midland’s book, ‘Ultraviolet Voices: Stories of Women on the 2e0db-screen-shot-2014-04-21-at-6-45-04-pmAutism Spectrum’ (2014).

 


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Many Facets of Expression: Expressions of PosAutivity #AutismPositivity2014

By Angel Mindretrofit

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Today I am participating in the Expressions of PosAutivity, I was not sure if I was going to be able to express what I had hoped to … I am still not sure I did, but I do believe I share my positive experiences with expression and how important it is to not only be flexible with other’s ways of expression, but for ourselves as well.

Silently Spoke

I had words,
but could not speak
my eyes misled,
my smile inappropriate,
this body danced,
it pounced and pranced — I spoke

I had many words without a useful mouth,
lips tied; double knotted, invisible string
eyes blinked immeasurable worlds
ears that sang colors for no one to feel
my hands stroked brushes in minglings,
emotions without voice — I spoke

my own personal meltdowns,
shutdowns raging in a stoic face,
masked and cradled in between scratching hands,
nails penetrating flesh,
scars coated in silenced words,
erupting to speak out,
words aggressively broke free,
these fingers glided letters in form — I spoke

~~~~~~

I shared a poem first because many times, it is my only way I can express myself. With poetry, I find that words flow out easily – they are the parts of me that are stirring, but I have no understanding about them. I can write out in bursts of words, then it can take hours, days, weeks, and yes, even years to finally grasp what my mind and/or body were trying to tell me. When the words come, in that moment I feel deeply connected to myself and others who may be in my thoughts. I may not have the fullness of why, but I do know that in that moment the expression makes perfect sense and will manifest answers or connections to other things at some point in time — that brings me peace and comfort.

I think that the Autism Positivity flashblog has been an incredible source of enlightenment.

I personally have gained new insights about how people communicate and express themselves since it started. As I have experienced the various ways of expression within our Autism Community in general over the years, it has given me insights into my children, my husband, and myself. Reading from so many perspectives and personal journeys has opened my mind and heart even more each time people share. I have enjoyed reading the posts shared in our community from Autism Positivity and find such a comfort when reading the posts. This year, I am very excited to read what others have to share about expression and more from their unique points of view.

As I thought about the inspiration, my heart flowed with what I have been experiencing over the last few months.

I have been more observant and mindful of the different ways that people communicate. I have been studying how to read facial expressions, the environmental and emotional reasons for their responses, the purposes and motives for communicating, and gaining new understandings about how communication is expressed in such vast ways. I had an understanding of all of this, but I had not made many connections nor did I fully comprehend how powerful it was to accept, motivate, cultivate, and encourage each person’s means of expression. There is so much that affects the way we communicate. As an Autistic adult, I still struggle with finding ways to communicate, but in the years since blogging and creating/sharing my poetry blog, I continue to press through.

The more that I have been flexible with finding ways of expression for myself, the stronger my identity and voice has become.

As a child into adulthood, one means of communication was dance. However, I did not understand this and I know that others did not either. In the midst of feeling overwhelmed, feeling a meltdown or shutdown coming, I would turn on music and flow with the words and/or tune. I had no idea that I could actually use this to communicate to others. I only used it as a means to “get out” all of the emotions that felt trapped within my mind and body. Several years ago, I allowed myself to try new ways of expressing myself through art of various kinds. I never thought I could paint or draw anything — I did not allow myself to try because I had been labeled non-artistic based on my art grades in elementary school and from the discouragement of my teacher.

My form of expressing art was not traditional.

Since I learned to write as a child, I found that it was what came naturally to me and it was something that I could keep hidden from everyone. Though the physical act of handwriting hurt and still does (I have dysgraphia), it was something that I HAD to do. The pain was worth it to write out all of the things, worlds, ideas, thoughts, that I had in my mind. I ached to share, but I did not receive positive feedback. I was even told by loved ones that what I shared did not make sense to them or it wasn’t their thing. That is discouraging to hear, but it did not stop me from writing or creating poetry. After so many years of hiding my forms of expression, I decided to write openly to an invisible audience without any idea what would happen.

For me, there were several reasons for beginning my blog.

If I were to narrow it down to the most simplistic reason though it would be that I was seeking an outlet for expression. I was seeking some way to communicate and connect to others and myself. I longed to be heard, but my voice had been trapped for so long that it was a struggle to find my words through any means. I had long given up sharing the most hidden parts of my mind, feelings, thoughts, and views. I had learned to mimic and mask, though I have always been an outspoken person for others. That is one reason why David was so surprised by many of the things I wrote in the past, I was so good at not being me that for him to read my inner workings was a little bit of a shock — for the good, but it took him time to process. However, for me I felt I had no way to share without being corrected, judged, condemned, misunderstood, or worse yet not being heard, thus reiterating my fears and pains of feeling invisible.

I wanted to share about my journey and share about our Autistic life, but what transpired was more than, I could have ever imagined.

Thanks to our Autism journey, I have found many answers to my past. After Daniel receiving his ASD diagnosis, I chose a path of working toward helping him in whatever ways were best for him. I had no idea that seeking answers and helps for him would also help me. Through my parenting journey, I realized how important it is to me that my kids all have a way of communication so they can share what they feel and what they think with us and the world. I did not know that an Autism diagnosis would lead me to finding my voice (Aspergers/Autism Has Given Me a Voice) that I had long tried to suffocate in order to make it through another day, nor did I realize how many people had stifled me causing me to feel as though my way of communication was wrong or did not matter.

While Daniel was completely nonverbal, his main source of communication was a way of aggression.

He had no other way of expressing himself. He was not punished or forced into other responses. I am not saying that was or is an easy task, but I feel as a parent I can control my responses and be more understanding, so it is my responsibility to do what it takes to help him. Some may not see this, but for me I feel that exercise/working out is a way to express emotions or things stuck inside me, such as frustrations and anxieties that I cannot find words for, those I try to store them up in an imaginary box. I save them for the Saturdays at my Kravfit class then, I put on my boxing gloves, punch and kick it all out. I am usually screaming and yelling too as it is an appropriate environment to do it. So I knew Daniel was telling me something when he was physically aggressive.

However, it took many guesses and long periods of time to figure it out.

It was frustrating for both of us. I will be honest we still have these days. By seeking ways to help him express himself, such as creating books all about his likes, dislikes, days, events, and adding social stories, he gradually learned more ways to express himself. He has since been able to express himself more so through verbal communication and at times he will attempt art, but throughout his life one of his main forms of expression has been through music. He has always made a beat – thumping, tapping, pounding, whatever he could use to make a rhythm. It took a while to figure out, but what I recently discovered is that many times Daniel is expressing his mood through beats or rhythm.

Was he telling me these things when he was nonverbal?

I would say most likely and I missed it. I do not see this as a lost opportunity, but as a new positive that can manifest even more ways for Daniel to express himself. I wish I had known at the time, but I did not. Now that I do know it opens up new thoughts, ideas, and possibilities to explore. Music helped him learn words when he struggled with them in the conventional ways. Music is helping now in music therapy – he is gaining more confidence in his own thoughts and voicing them. We hope that on those days when he loses his words that using the keyboard or iPad to share his expressions will give him the outlet he needs to express himself. He could find that typing out his words is much better for him.

He may use that as his main means of communication — we are flexible with that.

If that will work best for him, so be it. It works best for me! Learning more about how others communicate has helped to bring healing to my marriage and to our relationship. Since David has become more flexible, he has gained more understanding in how to communicate with the kids and I. It has opened up a relationship between he and Daniel that is amazing to witness. David has his own ways that seem foreign to me and I to him, but being open and willing to learn has allowed us to find ways to communicate better, clearer, and with more empathy. Ariel expresses herself through drawings. She tends to shut down or if she is deep in thought, I find her drawing out elaborate illustrations and pictures of her thoughts.

Joshua builds his expressions or he uses objects like tape, metal items, cuts up paper, and empty boxes to share his thoughts, ideas, or feelings.

I see this in our Autism community as well. We all have our own voice, our ways of expressing ourselves, our individual creative outlets that are a spectrum of greatness. Not everyone can communicate or has found their way to communicate in our community. Some of our children do not have a way to express themselves and even our adults who are so quickly forgotten. As a community, it is vital that we are open to flexible ways of expression. We need to be on the cusp of seeking out inventive ways to make it possible for those who cannot speak traditionally to discover ways to express themselves and share. I believe the future does hold a lot of promise for the generations to come, but we also need to be focused on the here and now.

For the parents who long to know what their child wants, needs, and the thoughts that they have to share.

For the Autistics now who desperately want to be heard and understood, we need to be mindful and observant of what responses are truly speaking instead of assuming or expecting everyone to express themselves in the same ways. I am not sure what to look for, but being in such a multiplex of ideas, expression, perspectives, and talent has broadened my awareness and understanding of my own ways of communication. It has given me an appreciation for how and why people express themselves the way they do. It fuels my desire to want to see everyone find their own way of expression and feel accepted for it. I see such value and importance in being flexible because it could be the key to helping someone who felt as though they would never be heard or overcome with feeling invisible the opportunity to express themselves and let their communication be loud.

Who knows what sort of wonderful ideas, thoughts, person we could be missing out on simply because we have not been flexible and accepting of their way of expression.

 

Original post at: http://www.mindretrofit.com/2014/04/30/many-facets-of-expression-expressions-of-posautivity-autismpositivity2014/

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Autistic Healers Expressions of PosAutivity: #AutismPositivity2014

By Kmarie 

2e0db-screen-shot-2014-04-21-at-6-45-04-pmIn the last week alone I have faced four different “Newsworthy” negative reports on Autism advertised as “breakthroughs, ” “understanding Autism,” or “valid research”, and each one has left me in tears because these reports are what the world listens to. But then I found a glimmer of hope in the Autism Positivity Flashblog and my Autistic community. We can be a voice. I can be a voice.

I have several friends, family members and people in my community who are Autistic. They are a diverse group of people with different needs, beliefs and temperaments…but the one aspect I often find my Autistic friend’s have in common are their healing personalities. The lie that Autistics are non empathetic or non communicative is exposed when I am around each of them. They are the people who children and animals flock to, whether they want them to or not due to sensory issues. My Autistic friends are often the people whom the outcasts of society, the abused and the down trodden go to for a listening ear, for compassion and because these people groups feel the Autistics are safe. Generally we are. It is very rare for an Autistic to not be safe, innocent and pure of heart. In the news we hear the horror stories but most often, there are other factors at work that should be exposed. The very stats speak for themselves; the number of Autistic people that commit crimes in the overall population of Autistics verses the number of Nuerotypical people that commit crimes in their overall population makes the issue stunningly clear. Autism does not create violence. Like in any population group, there will be issues but in general, the Aspies I know are trustworthy, kind and considerate.

I am an Aspie/ Autistic and I am 30. I have three children and am married to an NT. We have a happy life. Contrary to popular Autism propaganda we have had a happy 12 year marriage and while having children was hard for me at first, I now love being a mom. While it is true that I can not face meal time every day without my husband or support system nor drive in the city due to executive functioning issues, I also KNOW I give back to the world with my unique set of gifts. Without a doubt Autistics need more support because the current culture is not set up for us. Instead of people fighting Autism we need them to fight Ignorance and stigma. 

There are many parents and practitioners who claim they are reversing autism in children.  They are not “reversing” the way the brain is wired…what is actually happening from the perspectives of Autistics is that they are helping deal with sensory onslaught or other symptoms of Autism that interfere with social interactions and minimizing them. For example, many Autistics have a leaky gut so going off of gluten really helps them think clearer to deal with sensory onslaught of the loud culture we live in, but our actual brain wiring is still unique and different. Cognitive therapy also helps re wire some anxiety that we experience due to being “differently wired” and can aid us in being thought of as more “normal” but we are still Autistic. Just with less “symptoms.” Technically these claims of reversals are actually just improving assimilation, which is fine in some cases but it needs to actually be addressed as it is, and it actually is an ethical conundrum that needs serious consideration. Many Autistic adults who can speak for themselves will tell you this. My son does not seem very Autistic on the outset, because we have worked with him since age 3 on eye contact and anxiety so he is less bullied, but he still works from a different mind theory than an NT. 

I may not fit into society the way it wants me to but I still am valuable and live a worthy life. I feel that if we get too genetically focused on Autism and too focused on “eradicating Autism”, this issue will become quite akin to what Hitler wanted to achieve. Let’s not go there. Diversity is the spice of life, we can help disabling features while still respecting the core…

Read the rest of this post at:http://worldwecreate.blogspot.ca/2014/04/autistic-healers.html

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AutAc Expressions of PosAutivity: #AutismPositivity2014

By Dani Alexis

It’s Autism Positivity Day 2014, which seems to me the ideal day for launching this blog.

This project started in a battered spiral notebook I keep next to my bed.  When I started writing, I wasn’t sure I wanted to blog something as intensely personal as an autobiography.  And I’m still not sure.

But there is something wonderfully positive and affirming about writing, specifically, about my autism.  I’m not alone in this; by writing about my autism, I join a community of writers and bloggers of which I’m proud to be a part.

There’s also something wonderfully affirming about autobiography, or memoir, or life writing.  This is particularly true when one is autistic.  It is a persistent irony that so many researchers of autism – themselves neurotypical – continue to believe simultaneously that autistic people are fatally self-absorbed and that autistic people are incapable of writing meaningfully about their own lives…

Read this post in its entirety at: http://autisticacademic.wordpress.com/2014/04/30/autac-expressions-of-posautivity-autismpositivity2014/

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What is Autism Positivity? Expressions of PosAutivity: #AutismPositivity2014

By Amy Sequenzia

We fight against stigmas. We fight to be heard.
The world is not generally friendly to Autistics. We still need to remind people that the same rights they have, rights they expect to be recognized, also apply to us.

We celebrate Autism Positivity because we know we are not a collection of deficits. We know that because we, like everyone else, have assets, abilities and gifts.

We know this because we are human beings.Autism Positivity 2014

Autistics can be extra sensitive to sound and light. While this is seen as a deficit by a majority that is still not accepting of the need for accommodations, Autistics can experience the beauty of the colors in music, in the words we hear, and in the people around us. We can see the wind and hear the silence.

We celebrate Autism Positivity because we experience amazing beauty most people can’t see.

Many of us can’t speak like the majority can. That’s also is seen as a broken feature. But we are listening and learning at a faster pace than the neuromajority is. Give us the opportunity and the right technology, and our thoughts will enrich your life.

We celebrate Autism Positivity because what is inside our minds is worthy the wait to hear our typed, written voices.

Autism Positivity is the freedom to flap, rock, spin and jump.
It is the accepting presence of those who “get it”.

Autism Positivity is feeling intensely every emotion around us.
It is felling safe and finding comfort being alone, with ourselves.

Autism Positivity is having the courage to be ourselves.
It is seeing our lives and actions help young autistics to do the same.

Autism positivity is learning to say “no” to forced compliance.
It is refusing stereotypes, it is fighting stigma and wrong assumptions.

Autism Positivity is reclaiming our right to make decisions.
It is rebelling against practices that seek to fix what is not broken.
We are not broken.

Autism Positivity is exercising our humanity.

We celebrate Autism Positivity because we are human beings and we are pretty awesome, in our Autistic way.

 

Original post at AWN (Autism Women’s Network): http://autismwomensnetwork.org/what-is-autism-positivity-expressions-of-posautivity-autismpositivity2014/

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Unstrange Mind: Expressions of PosAutivity: #AutismPositivity2014

By Sparrow Rose Jones

Autism Positivity 2014 Flash Blog
It’s April 30th. The last day of Autism Acceptance Month. And the day of the third annual Autism Positivity Flash Blog. I didn’t write for the last two iterations. The first one, I didn’t hear about. I was not part of the online Autism community at that time because I was taking a break from the stress of things — I had met my first local Autistic adult and it turned out horribly with stalking and threats. And I was living with a partner who hated autism and Autistic people. I did not know that I am Autistic when I got together with him and my diagnosis was pretty devastating for the relationship (which still somehow continued for another decade afterwards.)

I first learned about this project a few months after it launched for the first time and I was kind of shocked into silence. You see, I have a tendency when frustrated to treat Google as a sort of oracle. I will type a complete sentence in, like “He calls me stupid all the time but I’m really smart.” Once I typed in “My rat died and I’m very sad.” The hits that are returned from these sorts of non-questions are often enlightening, sometimes comforting, sometimes informative.

So I honestly don’t know if I’m the person who typed, “I wish I didn’t have Asperger’s,” but it was so much like the sorts of things I do type into Google when I’m feeling lost and distressed and, with all the stress I had in my relationship and with university and fighting for accommodations no one wanted to let me have and getting accommodations that just made my classmates so angry they bullied me so much I wished I had just dropped the class instead — I did actually drop out of becoming a math major because the attitude toward accommodations in that department was so hostile that I knew I wouldn’t be able to finish the degree either way — with all that going on, I was having a really hard time and so much of my stress and struggle was centered around being Autistic.

I will never know if I’m the person who triggered the first Autism Positivity Flash Blog or not, but it was so much the sort of thing I would have done, that I could only sit in shock and read through all those letters to . . . . if not me, someone exactly like me.

So I didn’t write last year because I was still too overwhelmed by the bigness of it all. I sat and read every single entry from that first year and I cried a lot and, most of all, I felt supported. I was afraid to say anything to anyone about the possibility that it might have been me they were writing to. I figured it didn’t matter, because whether it was me or not, there are so many other people out there who desperately needed to read those words. There are hundreds, maybe thousands, of “me”s out there feeling miserable about the cards life dealt them and wishing they could play any other hand but that one. And I still have no idea if it was me or not, but I’m revealing now that it might have been me because it’s important to know that if you are going to understand what my Expression of PosAutivity really means: it might as well have been me and this project gave me something to rejoice about at a time in my life when there really didn’t seem to be anything good about me or my Autistic life.

I didn’t necessarily believe every word that I read, but it awakened something in me. A few months later, I re-opened this blog. I had shut it down after the bad experience with the local Autistic. I was afraid and I was ashamed. I re-opened the blog and in that first post, I published my photograph and my full name. I was protesting Ann Coulter’s use of the R-word and I was putting myself out there to say “this is who you are hurting when you use that word” and also putting myself out there to say “I am no longer afraid and ashamed. I will be known.”

I could not have found that courage if I had not read all those letters to . . . . someone like me . . . . that were written back in 2012.

So the joy I want to write about today is this: life dealt me a hand but it wasn’t Aces and Eights. Sure, I haven’t figured out what to do with that Trey of Hearts yet, but it’s not a Deadman’s Hand and, what’s more, the cards are merely slips of paper that only carry as much power as the players choose to assign to them. What life also dealt me was a table filled with players who have decided to turn the game into something we all can win. I am seated with great people who want to help me figure out where that Trey goes. I am seated with generous people who are willing to show me their cards so we can all play together instead of against one another.

I still struggle with the notion of “Autistic Pride.” It’s not easy for me. Inch by inch, I approach it. But in those dark times when I am unable to take pride in myself, I can always look around me and take pride in my community. We — Autistics and allies — are strong, brave, loving people. We are people who work hard to make the world better for us and those who will come after us. We are people who will take the time to write anonymous letters of hope and love to people we’ve never met — anonymous people crying out for some relief from the pain. I take joy in my people, my tribe, my family.  We are a loyal people, an understanding people, a forgiving people. I am honored to sit at the table with the wise and noble souls I find myself surrounded by.

I no longer refer to myself as “having Asperger’s.” For one, it’s now a historical term, like Dementia Praecox or Invert or Hyperkinetic Reaction of Childhood. For another, I’ve learned that what I am is Autistic and I have no need for a special label that attempts to place me in some hierarchy of “functioning levels” (and couldn’t place myself there very well even if I tried, since my “function” is so variable from task-to-task and from day-to-day.)

But also, I no longer wish I didn’t have Asperger’s (or autism of any stripe.)  I’m dating someone different — someone who loves me and admires all of me and understands that I am who I am because I am Autistic, not in spite of it. I am on a different life path so I am no longer fighting with a university for accommodations I need but am punished for requesting. And I can now see that being Autistic is not only who I am, through and through, pervasively, but it is something that connects me with a warm, welcoming, compassionate community of the most decent and loving human beings I’ve ever met in my life. Not a perfect community, because it’s made of people are none of us are perfect. But a community that has repeatedly taken my hand and helped me up when  I fell to the ground and lay there, hopeless.

This is what I am PosAutive about. Being Autistic put me in the middle of the grandest community of people I could ever have hoped to find.

 

Original post at Unstrange Mind:http://unstrangemind.wordpress.com/2014/04/30/unstrange-mind-expressions-of-posautivity-autismpositivity2014/

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Filed under Autism Positivity 2014, Autism Positivity Flash Blog, Expressions of PosAutivity, Flash Blog Posts

Expressing PosAutivity in A Negative World #AutismPositivity2014

By Kerima Cevik

Dear Mrs. Çevik,

I have spent the past week of ESY getting to know Mustafa. He is a pleasant happy 5 year old. We have discovered he has developed his own gestural language. He is able to communicate his needs very well. There is no need to send lunch, unless you are concerned about allergies. He enjoyed his sandwiches, grapes and juice with his classmates. He had a great deal of fun today.  I have attached a list of supplies he’ll need for next week’s activities. I am looking forward to working with him.

                                                          Sincerely,
XXXXXXX XXXXXX, M.Ed
Image of multicolored background with uplifted arms
and hands reaching upward  with the words
Autism Positivity 2014 Flash Blog written in black
them

There was a time when my son Mustafa spoke Turkish. Turkish imparts more meaning with less verbiage. I believe this is why he chose Turkish,  despite hearing two other languages spoken in our home. When expressive language failed him. he created his own method of communication, using a combination of the simple ASL signs he was learning and gestures, sometimes grasping objects and putting them together in order get his message across. Once he entered kindergarten, al his attempts to communicate were ignored everywhere except at home. There was a push to invalidate his attempts because they did not fit into the definition of the language he was expected to speak. PECs were half heartedly presented as an alternative and we were asked to reinforce their use. When I asked how he was supposed to learn grammar from these cards, I was told it didn’t matter, because according to professional opinion, he was not competent to create more than two word sentences.

How low would your frustration level be if you used every possible thing at your disposal to communicate and you were deliberately ignored?

When I say my son is heroic, what I mean in part is the way he handles the issues in his life like systemic ableism . Were I in his place, I believe I would meltdown repeatedly for hours on end. Yet my son gets up each day, and puts all his effort into finding any way he can to send messages to a receiver. Communication can only occur if the receiver accepts the message sent.

He is, unlike presumptions based on his labels, an incredibly patient preteen.  His frustrations are natural considering his circumstances. I didn’t learn this overnight. It took directly working with him for years, looking at him based on what he did in homeschool and not what we were told to believe. He is not a secret genius. He is not, like Big Bird, eternally 6 years old. He is not a nonspeaking infantile angelic figure in a growing asexual body here to test my faith. He is an 11 year old boy, with the mischief, hopes, dreams, good days and bad of anyone else his age. He has great challenges and he spends each day of his life in a battle to overcome them. He needs three things to express himself; communication supports, a person willing to accept all avenues of message delivery from him, and that all those working with him assume he is competent to communicate expressively. He does not require verbal speech. He needs respect and the belief that if given the assistive technology and supports he needs, he can express himself.

Sometimes the world of activism is so gruesome and harsh, and so much negative news hits so quickly that it is overwhelming. I watch people get caught up in passionate battles to be heard, to get their points across because sometimes those points mean saving lives in the balance. But the internet distances and that can cause great harm. It creates people who don’t really behave the same way offline. Hurtful nasty individuals who carry their unhappy lives online and attack others for no good purpose. I see deliberate posting of inflammatory content with the intent of spiking hits on social media. I see people looking for answers who are caught in the autism wars of groups with cult like followings and dangerous destructive agendas that condone murder and I feel myself reeling back from it all. I feel the need to unplug.

When I need air, when I want to find my center I look at my son. How tall he is now, the unmistakable mustache, the glimpses of a calmer spirit. All the professional warnings of puberty and its struggles notwithstanding, the mother who wondered what would happen when her son towered over her is now sitting beside him each day and breathing to the motion of his rocking in his seat, smiling when he reacts with joy at making himself clear. The pall lifts from my life because I remember he is the reason for what I do. He has already surpassed other’s expectations. I feel the air filling my lungs. Exhaling feels like walking in sunlight.

Blogging was never for me. It was and is for him. It was to leave a trail of words to help him find his way to the reality that he was, is,  will always be, a loved person. He matters. In a world where his peers will always be measured by the worst moments of their lives, he needed to know, everyone needs to know, that our son’s person-hood is measured by all the moments of his life. The joyful moments are so happy because we can look back on the where we began this journey and see how far we’ve come together. This body of work is a legacy for him to know, whether we are here or not, that we love him as he is. Not because we hope to change him. But because we can see him in his entirety now and we know he is an amazing person. He is a stronger person than I am. He perseveres. He overcomes, regardless of how long it takes him. He does not give up. These are the qualities of greatness. .

I could tell you that he uses a TouchChat HD somewhat to express himself. I can tell you that once all the other myriad medical questions he deserves answers to are addressed we will dedicate all our energies to this single task of helping him master the AAC app. I can tell you all about how occasionally but rarely,  he has spoken words. His voice is changing. We are surprised to learn that his changing voice is becoming a true baritone. But that is really not what this is about. This is about telling you that I believe that my son is competent to express himself without verbal speech. His performance art in communication is patient and beautiful.

I am positive that my love for my son is returned. He demonstrates that each day. Without saying a word. By his patience, an arm around my shoulder at movie time,  walking back into a room to hug out an apology for something gone wrong. I know he has very few people he cares for in this way. I am aware therefore, of how very important it is to be one of those he loves.

I cannot impart on you what it does to an autistic child when you understand them. Their entire quality of life improves. They gain confidence. They begin to self advocate. They try their best each day. Many parents have stories of learning their children must have been in excruciating pain for days weeks even months and not been able to communicate it to them. Looking back on the meltdowns and behavioral issues then has them wondering how any child could endure such things without melting down continually or lashing out more frequently. Behavior is communication.

If you want your life with your loved one to change for the better, start by changing how you feel about them. They know, in your body language, if you are disappointed, angry, ashamed. When you have done that work on yourself, begin to observe your loved one. What happens before a crisis. What happens before joy. Then do whatever is necessary to help your child complete the communication cycle with you. Be the open receiver to the message.

Love your child. Or as my late uncle John used to say when we ended our phone conversations.

“Take care, kid. Enjoy your child.”

 

Original post at: http://theautismwars.blogspot.ca/2014/04/expressing-posautivity-in-negative-world.html

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Filed under Autism Positivity 2014, Autism Positivity Flash Blog, Expressions of PosAutivity, Flash Blog Posts