Gaps In Our Communities, by Savannah Nicole Logsdon-Breakstone
For Want Of A Nail, by Meg Evans
You’ll grow out of it, by Melanie Yergeau
Table of Contents:
Oftentimes, when we discuss issues like autism and sexual orientation (or gender identity) we discuss them separately, but the fact is there is a lot of intersectionality between the two. Now, I am not saying that if you are LGBTQ you are more likely to be Autistic or vice versa because correlation does not imply causation. For me, my autism is just as much a part of me as my sexual orientation or gender identity and there are many similarities that Autistics and LGBTQ people share in regards to the fight for acceptance and equal rights.
Like the LGBTQ community, Autistics struggle with who they are. There is a period of time in which an Autistic person comes to the realization that they are Autistic and accept that fact. For some, this happens all in one instance, but, for others, it might take years. For me, this took years to accept. I was diagnosed at 11, but my parents didn’t tell me of my diagnosis until I was 13. However, I knew I was different before my parents told me of my diagnosis. I just didn’t have a name for my difference.
Growing up and learning about my diagnosis was a struggle. My parents didn’t tell me the details of what autism is. They kept their explanation very simple. However, I wanted more information. I found a book about Asperger’s Syndrome (my particular diagnosis) in my parents’ room one day. I took it, and I read it cover to cover. The book didn’t discuss Asperger’s in a very positive light and used the deficit model to explain what it was so I learned that being Autistic was a negative thing, and I thought that for many years. My parents (In hindsight, I’m thankful for this.) never put me into any kind of therapy for autism. The only thing they did for me was pull me out of my public school where I was struggling and falling through the cracks in the system and homeschool me. However, I essentially became a therapist to myself. I would force myself into social situations and study my peers and their social skills and social patterns. Even if I was becoming overwhelmed from having to be social or from sensory overload, I would not let myself take a break. I would call myself “lazy” if I took a break. There is something Autistics need to do to calm themselves and help process things around them called stimming, and stimming is any sort of repetitive body movement. The most common stims are flapping hands, rocking back and forth, and bouncing your leg up and down, though there are many other stims. Rocking and bouncing my leg are my primary stims. I’m rocking right now as I type this. When I was a teenager, I wouldn’t allow myself to stim, and I would scold myself when I did. My ultimate goal in life was to get rid of any and all characteristics of autism, and it was a compliment when people would tell me they couldn’t tell I was autistic when I would disclose my autism.
LGBTQ people experience similar things growing up. It has gotten better in recent years, but, when I was a teenager, the concept of ex-gay therapy was just barely starting to gather some criticism and protest. Ex-gay therapy is “therapy” that attempts to make a gay person straight through prayer (“pray the gay away”) and behavioral modification. Sometimes, shock therapy is even used. Shock therapy is still used for Autistic/disabled people today because it is still considered an acceptable treatment of whatever undesired (undesired to parents/caregivers) behaviors the disabled person is exhibiting.
It is learning that my autistic son has more to teach me than I have to teach him. It is learning that my words are not his. It is learning that my comfort is not a worthwhile goal. I’m not there yet. I’m so far from there. But I am learning that it is not about me and he is teaching me that every day.
Thanks for the opportunity to keep learning more.
Sticks and stones may break your bones, but words will stay with you always.
I remember the day I realized I was different. My 4th grade teacher decided that she was going to teach me something I would never forget. A life lesson, she said. She had me sit in front of the class, facing my classmates, and told them to look. Look at Ashley. Look. At. Me. Look at someone who will never succeed, who will never do anything or be anything but a drain on society. Look at someone who always fails and ignores everyone around her. Those are not things successful people do. To succeed, she said, I had to speak, I had to ask questions, I had to ask for help instead of doing things on my own, in my own way. Look at Ashley, she said. Look. At. Me.
I looked at my shoes and wished I were invisible.
Let me tell you a story, she said. A story about a girl named Ashley who was all alone and sat on a rock outside of a town. The girl was lonely, but didn’t talk to anyone to make friends. She just sat there, Ashley just sat there – I just sat there – on that rock outside of that town and starved to death because all she did, all Ashley did – all I did – was read a book and ignore the townspeople. And when this little girl did talk to someone, it was never to ask for help or food. When the little girl talked, she said, when Ashley talked – when I talked – she never said the right things or looked at people the right way. All she did was make people uncomfortable. And so no one wanted to help this little girl because they didn’t like her, didn’t like Ashley – didn’t like me. If you wanted to live, she said, you had to not be like that little girl, like Ashley – like me.
I looked at my shoes as hot tears of shame dripped onto my shirt.
When I was 12, I tried to kill myself. There wasn’t anything in particular that made That Day any worse than the others. I had made it through the day with relatively little trouble and violence, but for whatever reason, That Day was just one day too much. I remember staring at myself in the bathroom mirror at home, the words of my 4th grade teacher and everyone since running through my head. And as I stood there, I got angry. Angry at everyone. Angry at the world, at my school, at my classmates, at my parents, at myself. I was so angry at myself.
Every day, I was confronted with awareness of how far from this idealized version of normal I was. Every day, my peers and teachers made me painfully, perfectly aware of how different I was and how I would never be like everyone else no matter how hard I tried. And I had been trying. Every day since that horrible day in 4th grade, I tried to fit in, to succeed, to be the normal little girl everyone wished I could be.
I couldn’t do it, of course. I had been set up to fail. I realized that as I stared into the bathroom mirror. I was playing a game I would never be able to win.
So I gave up.
I was 12 years old, and my mom found me in the bathroom with a bloody left arm, crying because I didn’t want to go back to school, or church, or anywhere, and that I was sorry, so very sorry that I was such a freak.
It took a lot of work, but I found acceptance eventually.
I was 12 when I started to accept who I am, the whole me, not just the collection of deficits that had defined my existence to that point. I was smart; I could learn even if school said otherwise.
I am 29 years old now, and I don’t pity myself or let anyone else pity me, either. There is nothing wrong with me, Mrs. O’Reilly. Being different did not condemn me to uselessness. Being myself, accepting myself, silenced you forever. I have friends. I have over 200 credit hours of a college education. I have a dog. I have a job.
The voices I hear when I stare in my mirror have changed, too; they reflect the best of myself, not the worst of someone else.
“The thing I like about you is that you get right to the point.”
“You have a great sense of humor.”
“I admire you. I love how smart and caring you are.”
“I love your laugh.”
“Days when you work are treats.”
“Thank you for being you.”
“You’re my favorite person to get feedback from because you say what was wrong and how to fix it.”
“I understand sensory issues. I understand food issues. I understand social issues. I understand you.”
The acceptance of my friends and coworkers has helped me grow in ways I never thought possible as I sat there on that cold plastic chair in that classroom, crying.
Each year, I meet April with a bit of existential dread. Each April, I am once again made aware that to most people, autism means broken, defective, a victim of a fate worse than death, a problem, a disease, something that needs to be fixed, cured, and changed. This has been the predominant view of autism for decades.
That needs to change.
The world doesn’t need more awareness of Autism, it needs more acceptance of Autism. Acceptance is understanding. Acceptance is building on a person’s strengths to enable growth and independence, not viewing a person through the confining lens of ableism. Acceptance means acknowledging that different is not defective. Acceptance requires work. Acceptance is an action.
I am different, but I am the same as you in every way that matters. I think. I feel. I triumph. My differences make some things more difficult, but they do not make me less than you.
ACCEPTANCE is the most important word in the entire vocabulary of the autism and neurotypical dialogue.
I am a female on the spectrum. I’ve always known it ever since I first heard the word autism. Sadly I have met no professional people who believe that I know what I am talking about. I have not been issued an official diagnosis. It makes me angry beyond words. They have no ACCEPTANCE. They think their piece of educational paper means they know more about my life than my 54 years of living it.
I am a very lonely person. I do have a husband but he is all the family I have. My natural family has never had any interest in being in my life. I was shuffled through the foster care system when I was growing up. That was a nightmare. None of those families had any idea who I was as a person. Even now as an adult I face rejection often. There is no ACCEPTANCE. I am expected to be normal. I can’t because I’m not.
I love my autism. I have friends on Facebook who are mostly all on the spectrum. They don’t turn their backs on me. We all recognize that we have what others might think of as weirdness. We also have trust. Autistic people are the only ones I trust. They put my mind at peace. They don’t criticize or bully. They just want to be involved in whatever it is that holds their interest. We don’t play superiority games. We are equals. Even if we can’t relate to each other’s interests, we don’t knock anyone for having those interests. We have ACCEPTANCE of each other. Actually, I think this makes us infinitely more interesting.
I make an analogy of autistic people to geodes. Geodes are plain looking rocks until you open them up. Then you realize that they have spectacular natural treasures inside. No two are exactly alike but they are all beautiful beyond description.
The thing I want people to know about autism is that we are human. News media talks about us as if we are from another planet. Nope. We all have to share this one. In order to do that peacefully they have to learn ACCEPTANCE of us. Talk TO us not about us. Even more important, LISTEN.
My hackles raise.
I smiled when I first saw the boy talking to himself as he entered the youth services area of the library. I wasn’t mocking him but thinking, I wonder how often adults caught me conversing with myself at that age?
Self-recognition and bemusement quickly give way to territorial instinct as he approaches. Judging this book by his cover, I assume he is too old to play with the foam blocks, over-sized wooden puzzles and plush story book characters stored in the children’s nook.
Philip has his back to the young man, completely absorbed in his play. He lines up three magnetic cars and puts a plastic chicken on top. He pushes his assembly across the table, replaces the chicken with a goat and repeats the process.
I am concerned that the too-old-for-this-area boy will disrupt Philip’s reverie. I flash back to summer at the park. Big kids invaded the tot lot, barging into a space they had outgrown, getting in the way of the kids who are supposed to be here, behaving rudely to the wee ones who need this enclosed, safe space to play in.
Here at the library, I worry that this boy carrying a handful of DVDs will behave like the punk kids at the park. He leans his too-tall-for-this-section frame over the case of board books. I eye him from one of the armchairs as he browses, picks one up, makes an appreciative sound and then returns it to the bin.
The boy leaves the books and sits in the chair beside me. I see now that he is holding a copy of Finding Nemo. I notice that the hood is still up on the black winter coat he is wearing. As he sits next to me, he begins rocking. And vocalizing.
Instead of seeing myself in this boy, I recognize my son. I find the familiar sounds comforting. Mannerisms that I once considered odd or found unnerving now make sense to me. I am no longer wary of the boy, but feel my protectiveness extend to him.
I sit back in my chair and then remain still. I am now the interloper. I cease my running commentary on Philip’s play (“Where is the chicken going? You put the goat on the blue car. Is he going for a ride?”) Despite my silence, the other boy covers his ears. He sits like this for a moment, then moves off.
Based on his behavior, I jump to another conclusion about the young man. The recent announcement by the CDC that autism has a prevalence of one in fifty children is on my mind. In 2012 when they announced an increased prevalence of 1 in 88 compared to 1 in 110 two years earlier, I had joined in the laments.
Over the last year, however, my perspective, like the statistics, changed. I no longer fear this boy I hear making sounds as he walks among the picture books. I accept him, just as I do my son.
Do you like being autistic?
What a strange question. That’s like asking if I like being human. As if I could perhaps choose being a cat instead. What choice do I have in the matter? I am diagnosed with an ASD. That’s it. It is what it is. Liking or not liking a fundamental aspect of my neurology seems like wasted energy. If this were not being asked by an autism advocacy organization, I might even be a bit offended.
A better question is “do I like my life?”. I know some very miserable “normal” people and some quite happy people that are clearly autistic. There are miserable people and happy people. I have yet to see any particular class or group of people where this is not true. Rich, poor, gay, straight, married, single – pick a category. Any one will do. It is possible to find misery and joy in every one of them.
An even better question is “does autism interfere with my happiness”. Yes. It does. At times. And there are times when some of my autistic traits are a source of pride and joy. Yet again, more like “normal” people than not. And I see”normal” people thoroughly messed up by their “normal” emotional and social acuity. Does anyone run around behind them asking them if they like being normal?
“Geez – you’re so unhappy, maybe we should find a cure for normal!”
I’m not interested in “liking” my autism. I am interested in liking me. In finding my way through life on my terms. In making today better than yesterday.
I don’t want to be autistic. Nor do I want to be “normal”. I just want to live, and FEEL alive. It just so happens that my living and feeling is through a different lens.
Autism is a word for the ways I will never, can never be normal.
It is also the word for “why this doesn’t bother me.”
Autism makes me a foreigner in my own country.
It also protects me from culture shock, as I am accustomed to being “other.”
Autism makes it harder for me to find friends.
It also keeps false friends away.
Autism makes it harder to take notes in class.
It also means I don’t need to.
Autism makes mint, strobes, sirens all painful.
It also allows me to stim.
Autism makes oral speech less natural to me.
It also provides my abundance of words.
Autism means challenges.
It also means solutions, if only I am allowed to use them.
As I get more aware, I cower under the weight of knowing the kind of appropriateness that matters to people. My friend said she would twirl and dance in the aisles at the store, until one day she realized people were watching and judging; then she stopped. Awareness is crushing that way. Awareness of convention is not necessarily an improvement, and may take away from awareness of self.
I desperately want to come out of the closet. I feel like I have so much potential and I can’t wait to find out who I am. I have only the slightest inkling of what I could be. It feels possible that I’d be nurturing, maybe even fun or generous.
On the day I discovered autism, I went out to the patio and walking, almost floating in spirals of thought I said to myself: I have autism. no, I am autism!. no, I am someone! The shame had been so deep that I didn’t consider myself to be anything much prior to then, and the experience of finding out there were other people like me gave me permission to be something more definite.
In autism circles there is talk of “support” all the time. Sometimes it means having an assistant for a certain task and other other times it means having a more general kind of encouragement that one is OK. What would support look like now? I think with support I’d be able to come out of the closet, and I wouldn’t sacrifice awareness of myself.
I can more easily say what anti-support looks like: when I get othered. For example if I do something in the autism “community”, and I’m the token disabled person, there’s a subtle assumption that I’m automatically wrong. That experience eats away at me and makes me weak.
Sometimes I see someone and I think “she’s one of me”. I’ve come to see that the concept of “other people” really doesn’t exist – if there is to be no othering, there are no “others”. People say someone is “one of my people” or “in my tribe” – but I suppose I don’t say that because I don’t mean to say there is some division between my people and other people. So I say “one of me” to mean that with that person, I can feel the oneness and the accepting of each other without reservation.
I find the kind of compassion I know about mentally is hard to manifest outside the rare people who I can feel are one of me. My dream of being supported is having a continuous link to enough allies so that I’m not going through life in protection mode, and I’d be outwardly compassionate.
(Condensed from https://ianology.wordpress.com/)
I have been living with autism all my life, but I didn’t know it until I was diagnosed with Aspergers at the age of 36. I am functional, but highly impacted. I have sensory processing issues, especially auditory, olfactory, tactical, and taste. I have a form a synesthesia. I sense colors with different emotional states and with people. I guess you can say that I sense auras. I will also taste colors. I have problems with social skills. I can’t always find the words when I need to talk to people (selective mutism), I need to script out conversations beforehand. I can’t always determine what emotion I am feeling, especially when stressed and overloaded. I still have meltdowns as an adult, but I can recognize them and can act accordingly. Since my diagnosis just over a year ago, I have allowed myself to stim openly. I stim when I am excited or stressed. Stimming helps me calm down. I am not trying to hide myself anymore and I feel better for it. I can’t pass for “normal” anymore, but it is not a big deal to me. I would rather be myself. I also want my children to feel that they can be themselves. My son, who is ten years old, was diagnosed with Aspergers at the age of seven. My daughter, who is twelve, was diagnosed with bipolar at the age of eight and with PDD-NOS and ODD at the age of ten.
Autism is interwoven into everything I am. It is also interwoven into both my children. It is what makes us who we are. Being autistic can be hard, especially in a world that is designed for primarily one type of neurology, but there are good things about being autistic, too. I am very loyal and honest. I can hyper focus and do tasks that my husband, who is a neurotypical, finds daunting and/or mundane. I love to do research and I can disseminate information quickly in a user friendly format. Due to the differences in my perception of situations, I can see solutions where others may not. I can really only say that I have two friends, but they are dear to me and I treasure them. My son recently told me that he likes having Aspergers, because he believes it makes you not want to hurt people. He truly believes this. He can’t stand the thought of hurting anyone or anything. My daughter is such a caring person and she likes who she is. Neither one of my children wants to be “cured” nor do I.
For me, Autism Acceptance is purely that, acceptance. It is not just acceptance in the people around you, but acceptance of yourself as well. In the year since I was diagnosed, I have found myself, my true self, the one I had hidden away for so long. I feel so much freer now and I am healthier for it.
Happy April everyone, especially to those on the spectrum! I know this month is technically “Autism Awareness Month”, but I prefer “Autism Acceptance Month”. It’s not necessarily for political reasons, or to protest against organizations that see little value in adults with an ASD. It’s due to my stance on how I see my autism as.
I rather embrace and take advantage of the exceptional traits that come with autism than just know what they are. Besides, would you rather be accepted for who you are and gain valuable allies? I would think so, and I believe that people on the spectrum would appreciate it if NTs can embrace and support them more. We don’t want for anyone to just know what autism is. Anyone could learn what a medical condition is, but only a handful of people would want look beyond the label.
I will apply the same notion to Autism Awareness/Acceptance Month. I understand that more people should have knowledge of autism, its symptoms, and how it affects daily life. But is that all to autism? Are we celebrating Autism Awareness Month just to memorialize those on the spectrum? I want more than just recognition and those on the spectrum would appreciate it if NTs don’t show pity towards us.
Instead, I picture this month as Autism Acceptance Month where we celebrate people with ASDs. I think of it more like how I celebrate Black History Month. The latter month is about remembering those who did exceptional things as members of the African Diaspora. I take the same approach to Autism Acceptance Month. Let’s celebrate the Dr. Grandins and Donna Williams of the world. There are many aspies and autists who did great things on Earth. Those are the people who helped made the way for us to continue to shine, even when people may use our ASDs against us.
Most importantly, I rather celebrate Autism Acceptance Month than Autism Awareness Month because we get to share our daily lives in the spectrum. We’re not just specialists in certain topics who like to avoid people. We are people too. We joke, we laugh, we cry, we work…we do things just like NTs. As Temple Grandin would like to say, we’re “different, not less”. This month, along with the other months of the year, is a great time to express how autism is beneficial to our lives. I’m sick of hearing how our condition is a burden to those around us. That’s for Autism Awareness Month. I want this month to be the month where we’re loved and embraced by NTs and fellow autists and aspies.
by Anonymous Parent
When I first heard my son was going to be given the label of autism spectrum disorder, I thought, how could this be? My happy, affectionate, bright son? The one who was counting to 10 at age 1, who loved to snuggle, and whose smile and enthusiasm captivated children and adults? It didn’t seem possible.
Although I now know that every autistic child, and every autistic person, is different, my difficulty of reconciling the strengths I saw in my child with the label of autism led to me search for other ways of viewing this condition. I found books, articles, and blogs promoting acceptance of autism and neurodiversity, which led me ultimately to where I am now, trying to educate others.
My autistic child is a far greater source of joy and pride to me than of concern or sorrow. Here are some of the ways he doesn’t fit the some of the generalizations and stereotypes that exist about autism:
- He is very social and has been interested in other people, especially children, since he was a baby. I’ve seen him approach unknown kids in the park to play.
- He is very affectionate—loves hugs—and kind to other people. His “niceness” has been commented on by many people, kids and adults, and he has gotten student of the month for the last two years for the attribute of “caring.”
- He is very sensitive. He picks up on unkindness from others, and his feelings can get hurt easily. He has shown empathy toward other kids, noticing, for example, when a kid is afraid of another even when nothing has been said.
- His interests, while they can be intense, do change and evolve. He’s been into everything from superheroes, dinosaurs, Star Wars, and Lego video games in the past year.
- Although he likes routines and schedules, he also usually deals pretty well with change and surprises (especially surprises of the happy kind).
- He is doing fairly well, even with his challenges, in the achievement-oriented public school where he is now attending a regular first grade class, but he doesn’t seem to be a savant in any particular area.
I have come to view autism as a different way of being for my child, one that comes with gifts as well as difficulties. And I feel, on balance, that it’s a blessing to know what his challenges are likely to be as he gets older, because all children will have them, as indeed do all of us. I believe that widespread understanding and acceptance of autism and neurodiversity can help make our world a better place for everyone, and for the sake of my son in particular, I would like to do all I can to bring that about.
Acceptance is about taking me seriously when I say that I am the way I am. Acceptance is following through with your actions.
It’s not arguing when I say the thumping of the bass is making causing a pounding headache and making it so I cannot think. It’s also going and asking for it to be turned down, when I cannot do so, because of acknowledging my symptoms.
It’s listening when I’m using an AAC app, and responding to me, rather than ignoring me because I’m not speaking, or telling me that I’m verbal and should be speaking.
It’s not pushing me to answer quickly when I’m struggling to respond. And it’s giving me time to adapt to changes. Because just knowing those symptoms doesn’t help if you still push and I still freeze, shutdown, and cannot function, because everything is too much.
It’s listening to me. Learning from me.
It’s treating me like an equal.
It’s not forcing things on any person that they are not okay with.
Acceptance is listening to me about how my autism is, listening to autismdoggirl about hers, and not stereotyping either of us, or expecting either of us to be like each other, or like anyone else you’ve met with autism. We’re individuals. We’re also autistic.
It’s is once listening, taking what you’ve heard into account. When you’ve heard that I have issues with salt, providing food with less salt if you’re providing food.
Acceptance is not being afraid when you’ve heard the word “autistic”, and instead getting to know me.
It’s letting me have needs and letting me be me.
Acceptance is bothering to think, bothering to remember, and bothering to treat us as individuals.
Don’t be afraid to think.
We’re not scary once you listen.
(Also posted on http://turtleisaverb.blogspot.com/)
by Maia (Sibling)
About: In which Maia tells the story of her path to autism acceptance as a response to Autism Acceptance Month. Click through to youtube for all the links mentioned in this video.
by MelissaAutism Acceptance 2014 – Melissa
I’m named after my grandpa Aaron who died before I was born. My mom says he was a really great guy who would have totally loved me and he was very wise. One of the things he used to say was ‘actions speak louder than words’. My mom says this is how we can tell how the friends or foes are in the autism community, in the world.
One person who really gets me is my mom. She watches, listens, loves me just as I am. Sometimes she asks me to bend to social ‘rules’ sometimes she asks others to bend for me. She learns from others who have autism and speaks loudly for our true inclusion. She says part of asking the world to be inclusive is being inclusive ourselves so that’s why I need to bend for others not just have it one way all the time. She is always doing things for me and others with autism. We’ve spoken at a college, lobbied for legislation, fought school cuts, spoken to professional associations and fund raised. She believes in me. Totally. She sees great gifts in me. Her acts show me that me I’m awesome.
My public school was a really bad fit for me. I was a stressed mess. No matter what my great special ed teacher did it just wasn’t working. The people in charge there just didn’t get it. So mom found a school that really fit me. I go to Kradwell School now. It’s a small little school with teachers how understand autism and other special needs. They have a condensed school day, more days off and everything is individual instruction. If I need to pace they let me. If I need to work faster or slower it’s fine. This place truly supports those with autism. I wish all schools could do this. I wish all kids had a Kradwell near them.
Aaron with his church group
Another place that is completely accepting and inclusive is my church, Spirit of Peace Lutheran Church (formerly Divine Word Pentecost). My church, my ENTIRE church, walks on my autism society walk team. They move the service there that Sunday. They include me in discussions and votes. When I found out that many kids with autism aren’t welcome in church because they are considered disruptive that hurt my feelings. I’ve only felt that when we’ve visited places. My church has always been ok with my stimming, pacing or asking questions in the middle of the sermon. So I decided to do my Boy Scout Eagle project on this issue, I did a video called ‘All are Welcome’, Aaron Krause, it’s on youtube. Because we found out that families in Milwaukee don’t have autism support groups like people in the suburbs our church started a support group and social group. They are doing events to help those with autism because they value us as people. They hear what we say. I know I am accepted, more than, included.
Aaron – I’m the top of the pyramid
16 year old