Feelings and more

Feeling enraged and sad about recent events
Feeling lonely and wants to make connections, but can’t due to limitations
Feeling left out, because nobody wants to take me somewhere
Feeling angry because of injustices towards autistic people
Feeling pressured to conform to societal standards
Feeling pressured to become more spiritual and more faithful
Feeling like a failure, because my life is boring
Feeling not enough
Still having feelings for someone far away from me and probably doesn’t know that I exist
Coming to terms with my own sexuality
Feeling jealous of online friends, they do have their lives and I don’t
Feeling like I don’t belong anywhere
Feeling the need to free myself from the pressure to conform
My needs never come first, other people’s needs always do
My happiness is nowhere to be found
Freeing myself from religion, but it tries so damn hard to pull me back in (hence the pressure)
I just want to be me. I just want to be free. Free from pressures. I just want to be happy. Don’t tell me where to find my happiness. Don’t tell me I’m lost and confused. Don’t tell me that I have to be spiritual/pray/have faith. LET ME BE. Let me find my own way. Don’t control me, just let me be.

The dark side of advocacy

TW*/CW*: possible mentions of abuse, language.

When I first started with advocacy, I thought it was a great thing to do. I advocated for myself and I got results. As I got deeper (connecting with autistic people online and do online advocacy), I realized that it wasn’t all sunshine and rainbow. I realize now that advocacy has a dark side too. Too many times I see the voices of autistic people being silenced. And I can’t stand that. Too many times I see people deciding for autistic people how they should identify themselves (Person with autism, Person First Language vs. Autistic person, Identity First Language). When autistic people talk or just voice an opinion, it gets invalidated. In other words, they don’t want autistic people to talk at all. “People with autism don’t understand what TRUE autism is”, they say. “You’re too high-functioning or low-functioning”, they say. “You’re not like my child”, they say. “You don’t speak for my child”, they say. “You have no empathy”, they say. What should autistic people do then? Sit on the sidelines forever and just be grateful for people spreading misinformation on autism? Or mobilize and fight against ableism and abuse?

I joined advocacy to talk about the positive AND the negative sides of autism. But it feels like my voice and every voice of autistic people get drowned by Autism Martyr Parents™, experts and anti-vaxxers. Recently there was a local foundation that want to start an ABA (Applied Behavior Analysis, please Google it) therapy center. I am against ABA. I want to protest about that, but I can’t find anybody who can help me with the protesting. It’s very frustrating. It feels like my voice means nothing. Even my parents tell me to stop with the advocacy, because of the effect it brings within the family. I get mad when I see my autistic friends online get bullied and trolled. I get mad, because of injustices against autistic people. It feels like I’m in an echo chamber. Nobody is hearing me. I admit it, I am isolated, voluntarily and involuntarily. Advocacy was one of my passions, but it sucks. It doesn’t spark joy (as Marie Kondo from the Netflix show Tidying up would say). I’m left wondering: what else can I do?

*TW=Trigger Warning
*CW=Content Warning

Curing Autism Parents

Autistic Observations

Since I have been involved in the online communities of autism and autistic culture, I noticed a divide between self-proclaimed autism parents and allistic medical professionals, and autistic adults like myself.

Yet don’t we have the same goal, a betterment for autistic people? Chris Bonnello of Autistic Not Weird recently wrote with a parent of autistic kids about the hate mail she received about how she talks about autism.

I am against personalized hate mail, but I will admit to getting into arguments with autism parents to the point of being banned from autism support groups.

In my activism and life in general, I have received a lot of dismissive and hateful comments from autism parents. They insisted I was hateful and had no idea what it was like to be autistic. That I didn’t know about self-harm, stimming, incontinence, etc. That I was a burden to my parents and…

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This April, go #RedInstead for Autism Acceptance!

Speaking of Autism...

Coming up on April 2nd is “World Autism Day,” couched in what some people have designated as “Autism Awareness Month.” Unfortunately, for many autistic people, April has become a month of anxiety due to the darker sides of the “awareness” that is often pushed. There will be “autism walks,” wear blue days at schools and workplaces, and ad campaigns calling for the public to fear autism. Autism will be demonized, blamed for the world’s problems, all while autistic people are called “burdens” and “missing.” Autistic people will be spoken over by parents and professionals who will more-often-than-not spread more misinformation and create further prejudice against autistic people.

All this will be done in the name of “awareness.”

This has been the story every April since the advent of the autism awareness movement in the early 00’s. And it is, at least I believe, one of the largest contributors to many…

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Thump

There is that sound, thump.
Again and again, thump.
Seeing powder blue coming towards me and there’s that thump.
Trembling and screaming and that thump sounds again in my head.
Seeing my life flash before my eyes, thanking God that I’m alive.
But the sound of the thump still remain and seeing that street haunts me for ages.
Trying so hard to process and trying so hard to remove that thump sound out of my head.
Close my eyes and the thump sound comes alive.
Go away, thump sound. Don’t bother me anymore!

Why?

This is something that’s been on my mind for a few days.

Why?
Why do people talk over autistic people?
Why do people have the need to silence autistic people, by assuming that we’re “too high functioning” or “not autistic enough” or “too autistic” when we talk about autism?
Why do people always have to correct autistic people when it comes to self-identification (person first vs. identity first language)? Ask yourself this: does person first language TRULY put the person first?
Why do autistic people always have to defend their rights to exist in this world?
Why do people abuse autistic people?
Why do people have a horrible attitude towards autistic people?
Why does Autism Speaks want to eradicate us?
Why do people tell us that we’re difficult, a burden, a tragedy, barely living, a shell of a human being?
Why do people have sympathy towards murderers of autistic people?
Why do some parents use MMS (bleach enema) or super restrictive diets to “cure” their autistic children? Don’t they realize that autism is a neurological condition and not a disease?
Why do some parents film their autistic child’s meltdown and put it online, for the world to see? Don’t they realize what damage it does to their child’s future?
Why do certain parents get book deals and put very intimate details of their autistic children in their book and the book promotes abuse and/or forced sterilization of autistic people?
Why do people think that ABA is the best therapy for autistic people? Don’t they realize the damage that the therapy does, just for the sake of being “normal”?
Why do people always focus on being “normal”?

Let that sink in.

What autistic people want is plain and simple:

  • Acceptance
  • Understanding
  • RESPECT
  • Dignity

Autistic people are not:

  • A tragedy
  • A burden
  • Barely living
  • A neurotypical hiding in a shell of the autistic person
  • Broken
  • Missing (Or MSSNG)
  • In need of fixing

I want to ask you this: please don’t be the kind of person who talks over, silence and be a bully towards autistic people. Just LISTEN to what autistic people have to say. We DO have solutions for certain problems (sensory sensitivities, meltdowns, alternative communication, etc.). Remember, autistic adults break the barriers every day, so that autistic children won’t have to endure what we’ve endured. Remember, any attack on one member of the autistic community is an attack on the entire autistic community. Be a good ally to autistic people by listening and helping the autistic people with kind words and gestures. Don’t force them to stop stimming or take away their cellphone and/or tablet or take away their comfort items and/or stim toys. Help the autistic person to believe in themselves and the world will be a better place. Make accommodations for the autistic person. Acceptance and understanding go a long way.

autistic adults
Image description: A golden background with red broken rectangles and a foot. “Every barrier that autistic adults break down today is one that autistic children will not face tomorrow.

 

Connecting to the autistic community

Within a short amount of time into my advocacy, I connected to the autistic community online. I’m learning a lot from them. I even discovered things that I didn’t know existed. I learned from them that Autism Speaks is a hate group. I learned about some co-occurring illnesses and I learned about Autism moms (TM). I learned about person first vs. identity first language. I learned about ableism and how ableism affects the entire disabled community. I learned about meltdowns and shutdowns. I learned about ABA and how damaging a therapy that promotes indistinguishability from peers can be. I learned about functioning labels and why we shouldn’t use functioning labels. I learned about the struggles of an autistic person in the neurotypical world. I learned about inspiration porn and how it’s never about the disabled person, but about the non-disabled person “doing good”. I learned about the sensory sensitivities of autistic people. I learned about how the autistic spectrum is not linear, but round. If I haven’t connected with the autistic community, I wouldn’t have seen how autistic people around the world deal with things in their lives. And to see the autistic community coming together online makes me feel great. Why? Because it makes me feel less lonely. It makes me feel that I’m part of something. It makes me feel like I belong.

International Charter of Autists Rights & THE 10 POINTS OF Âû (The Autistic Union)

International Badass Activists

Note: The International Charter of Autists Rights has been officially adopted at AmericanBadassActivists.org. Please support, share and help educate others on Autists Rights.


THE 10 POINTS OF Âû (The Autistic Union)

  1. I am Autistic. [or] I support those who are Autistic.
  2. I embrace my Autism as a very significant part of my identity.
  3. I embrace those who would sacrifice to protect all Autistic life.
  4. I embrace the belief that Autism does not need any “curing”.
  5. I embrace the self-advocacy goal of “Everything about us, with us”.
  6. I embrace the definition of Autism as a neuro-social difference.
  7. I embrace measures directed at protecting Autistics from attack.
  8. I embrace a person-centred approach to all Autism issues.
  9. I embrace rigorous scientific approaches to co-occurring conditions.
  10. I embrace Autistics leading their own welfare organisations.

1. THE RIGHT TO LIFE 

We will prevent eugenic elimination of autistic people by opposing pre-natal testing for autism.

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Merry Christmas and a Happy New Year

As we are nearing the end of 2017, I’d like to share a couple of things with you.

It’s Christmas time again. It’s a time of togetherness and love and for some, a time of sadness. If you are religious, it is a time to celebrate the birth of Jesus.

But for autistic people, it can be a time where they may be confused, due to a change in routine. Christmas can also be a lonely time for autistic people. And it can be a time where meltdowns may be increased, due to change in routine, noises, flickering Christmas lights, smells, etc.

Here are a few tips for autistic people and parents:

  • If you are celebrating Christmas with your family, remember to take some time for yourself in case it gets too much.
  • Make sure that you have your communication device (cell phone and/or iPad) and remember to bring your comfort item and/or stim toys.
  • Check out the menu to see if there is something that you eat. Or if you’re at a relative’s house and that relative knows you eating habits, rest assured that you will find something to eat.
  • Please respect the autistic person’s way of communicating. And if the autistic person in your life doesn’t want to be touched, DON’T!!
  • Don’t force the autistic person to hug somebody that he or she doesn’t want to hug.
  • Don’t force the autistic person to sit in between members of the family without their comfort item or stim toy or their headphones.
  • Plan a way to get away from it all when it gets too much.

I hope these tips help you.

 

2017 was a very challenging year for me. It was a year of change. In my personal life and at work. I changed to another department at work. And now it’s going much better.
I connected with more autistic people on social media. And it feels so good to connect with them and share our experiences.
I started with a Facebook page dedicated to this blog.

I wish you a Merry Christmas and a Happy New Year!! May 2018 be a better year!!!

Autism and dance

It’s been a long time since I’ve blogged. I was going through some personal things. But now, I’m back.

There is one thing about me that most people don’t know: I love to dance. I’ve been a closet dancer since I was a kid. I used to dance alone in my room and make choreographies, but I didn’t go to any dance school. I used to mimic the choreographies from the old Venezuelan TV show “El Club de Los Tigritos”. I always wanted to learn to dance, but because I was reminded of my poor motor skills, I didn’t up until now. Now I’m taking jazz ballet and classic ballet/modern. I started with jazz ballet at first a few years ago. I even danced during a recital! It was a challenge, but it was fun. I always wanted to learn classic ballet, but I was advised not to take it, but to take modern instead. Well, I persisted and I’m taking classic ballet now, but combined with modern.

Dancing brings a few challenges as well. Coordination, balance and timing are the main challenges here. But for me, as an autistic woman, I struggle with all three. But I keep pressing on. It takes time to process the choreographies, but I can do them pretty well after a couple of weeks. I love to learn the dance glossary. I love the fact that the ballet glossary is in French. You learn words like: plié, degage, grand battement, arabesque, etc. The most challenging position for me is the fifth position, shown below.

balletfifth

Ballet has helped me improve my posture and it helped me with exercising. And ballet helped me with more choreography ideas!

Here are some tips for dance teachers:

  • If you have an autistic child or children or adult(s) in your class, please make sure that you let them take time to process the entire choreography.
  • Explain and show bit by bit what exactly you’re going to do.
  • Keep in mind that the autistic person may become frustrated with the progress. Check up on that autistic person. And if there’s need for correction, show exactly what you want to correct, for instance a higher leg kick or how to hold the barre correctly.
  • Make sure the autistic person is at ease. A steady routine must be followed and tell the autistic person ahead of time that the music will be loud. And if the autistic person must stand in a certain position, please move her or him away from the speakers.

And this is for the parents: If your child wants to learn ballet, let your child learn. Call the dance school to make an appointment for your child to watch the class before joining.

I believe dancing is a way to stim. You move your body in so many ways. Keep calm and dance on, even when the music stops.