Silence

Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.~ Harvey Fierstein

Silence is perhaps one of the most misunderstood states. I can be silent because I’m angry. I can be silent because I’m thinking. I can be silent because, well, I have no words.

Don’t mistake my silence for acquiescence. I’m thinking. I’m feeling. I’m trying to formulate a response. It may seem like I’m ignoring you. I might be 🙂

Silence is time. Time to come up with a response. Time to consider an appropriate response. Time to decide if I need to respond. Time I need to make sure I don’t blurt out something. Precious time.

Be patient. Give me time. I’ll let you know when I have something to say. Or, not.

World What?

April 2nd. Wear blue. Change a light bulb. Give money. Raise money at a walk for an organization that doesn’t give a rat’s behind about Autistics. Go you!

Seriously. If I ask 100 people if they know the word “Autism,” 99 will say yes. There’s your awareness. I ask the same 100 people what Autism “is” and 30 of them will know. Ask them if they know someone with Autism and 10 will raise their hands.

Therein lies the problem. You are aware of Autism. Cool. Now what? You know the name of a neurological condition. Good on you.

Now, try something new. You are reading my blog, so you  sort of know someone with Autism. Feel free to post a comment or ask me a question. Too much? Try some of the following from Giraffe Party:

Here’s a load of resources for you…

– What is autism? http://autisticadvocacy.org/about-autism/
– Why we don’t support Autism Speaks: http://autisticadvocacy.org/…/2013-joint-letter-to-the-spo…/
– Boycott Autism Speaks: http://www.boycottautismspeaks.com/
– Why you shouldn’t “Light It Up Blue” this month: http://thefamilyvoyage.blogspot.com/…/please-dont-light-up-…
– Instead, let’s Tone It Down Taupe! http://timetolisten.blogspot.com/…/tone-it-down-taupe-this-…
– What good is autism awareness? https://ollibean.com/…/…/01/good-autism-awareness-do-doesnt/
– Acceptance Not Awareness: http://imapartygiraffe.com/on-autism-awareness-month/

 

I’m Not Blue

I’m not blue. I’m Autistic. I’m not a puzzle piece. I’m a person. You won’t find me supporting A$….ever. Why? Because I’m not a disease to be cured. I’m not a voice to be silenced. I see the world a bit differently. And that is just fine. Why are you hearing my voice now? Because too many people think they are helping Autistics by supporting a charity that despises Autistics.

Give locally to programs that support families. Do your research. Is your money really going to do what you expect? Or did you just help pay for someone to present a “speech” about an epidemic that doesn’t exist. I’ve seen parts of the organization’s budget where they spend more money on catering than they do on helping Autistics. Yep, you just paid for a sandwich. Feels good, right?

Autism Blogging

I follow a number of pages on social media where the parent is writing about their experience parenting an Autistic child. Yes, I worded it that way on purpose. Unless you, the parent, has Autism, you are not an “Autism Mom” or “Autism Dad.” The story isn’t about you if you are writing about your children.

I have been following one writer for almost 5 years now. I’ve read about the shock of diagnosis right through today where the child is doing things the parent was told would never happen. The parent is respectful, in my opinion, not posting pictures or stories that might be a problem for the child later on. Yes, it is a carefully edited story. I don’t feel “left out” because I’m not told about the hard days. I know they exist just like the hard moments before something amazing happens. There were times I wanted to comment about how every person is unique and “don’t stop believing” should be a theme song. I read how the writer thought A$ was a wonderful organization straight through the eye openers and now the grass-roots movements the writer is involved in. These movements are making a difference…tracker bracelets and software for elopers, accessible playgrounds, community forums, meetings with first responders and training school staff across the district. EDIT: You can find this blogger at Flappiness Is.

I just started reading another writer on the recommendation of a friend. A very different perspective. This writer posts 3-5 times a day…the good and the bad. There are other family factors at play, but I know far more about this family than I probably should. There are happy photos right alongside meltdown photos. The writer talks about how exhausting parenting Autistic children is. The writer frequently states “how damn hard” raising a child with disabilities is (the writer’s words, not mine). The writer has no time for themselves because they are always playing catch-up.

Two writers. One sharing the story and their personal growth. One over sharing and unable to enjoy life. One raising an Autistic child. One being an “Autism parent.” Can you see the difference?

One writer choosing to listen to the child. Choosing to recognize that Autism is a spectrum. Understanding that the child was diagnosed at one stage of the spectrum, yet seems to be moving on to places that were thought to be inaccessible. Listening to other voices and finding their own in support of their child.

Yes, it’s been five years of growth for the entire family of writer #1. Family life can be fulfilling or, like writer #2, you can let it suck you dry. I’m not saying there are no “hard parts” to life. I am saying your response to the hard parts impacts how you feel about your child.

As April begins, realize that the audience for A$ is writer #2. The fear, the struggling, the inability to enjoy your child. That’s what A$ stands for. YOU deserve a break instead of having to muck through this dreadful life. That is the message.

I chose writer #1. I chose to work with my children to help them become the best people they could be. I chose to help others see that my children are not diagnoses. They are not statistics. The world is a better place with my children in it. I’m a better person for walking beside them. There is no room in my world for A$.

 

April Blues

I have to admit, I am torn. April is almost upon us and it carries no significance to many. Easter has passed. Spring Break is a memory. The next big thing is Memorial Day and the end of school. Unless you are involved in Autism Advocacy.

Some people I am friends with on social media support Autism $peaks. The ads pop up telling me who likes the group. Then I wonder several things. Should I attempt education? Is it any of my business? They have a right to their beliefs, right?

Why do I boycott A$? I mean, they are internationally recognized, a non-profit and, well, they have a great PR team. What they publish makes sense in a way. If I were a young, or frustrated, parent….yeah, they make sense.

I would walk miles, collect pledges and wear blue. I think back 19 years and it would have made sense to me. These people want to help. They want to understand. They want my child to have a better future. Right up there with Uncle Sam, mom and apple pie.

Now, I can see things differently. A$ has only been around since 2005. Their message is that Autistics should be pitied and their carers should be pitied. Autistics have no quality of life. Autistics can’t function.

The Autism community has many divides in it because of these statements. Parents want a cure. They want a better life for their child. Who wouldn’t? Autistics try to speak over the cries of parents who state their needs are more important than those of Autistics. Parents tell those voices that they have no clue….that their child deserves better.

News flash….Autistic children grow up to be Autistic adults. Those voices that are being silenced now represent the voices of children who should be heard. By shouting over Autistics, parents are silencing their own children. A$ supports the idea that a parent deserves more….that their child is a burden….that the child won’t understand anyway.

But we do understand. Far more than we are given credit for understanding. Humans feel love. And they feel hate. They can tell when someone is dissatisfied with them. While your child may not speak, you are being told what is important. But if you listen to A$ for parenting advice, you are receiving affirmation that you are more important than your child.

So, no. No to changing a light bulb or the color of my shirt. No to supporting an organization that feels a cure is a fix. No to donating money that is being used to support a corporation that silences the very people it purports to support.

I’m no longer a naive young parent. I have two Autistic young adults. I was diagnosed Autistic three years ago. The message of A$ is that I have no value. My children are also without value. Yet, the three of us are successful in our professions. We live independent of government support. We love, feel loss and celebrate. Our lives are full of meaning.

It’s your choice to listen to A$. Your choice to give financial support. Your choice to make your children into burdens instead of celebrating them as individuals. I urge you to choose to support your friends and family instead of a corporation. If you want to give money, give locally to agencies that support families.

Listen to Autistic voices. Every person can contribute to the symphony that is life. The contributions may look different, yet each one is an integral part of the entire movement.

 

 

Why I’m angry

I’ve read a few blog posts recently as well as some social media that indicates a vast majority of people still struggle with disability acceptance. These range from posts about the 25th anniversary of the signing of the Americans with Disabilities Act to one post about how awesome a certain Autism organization presents itself. Many of these posts make me angry.

You need to understand I’m not a “person with a disability.” You cannot separate the things that are different about me from my core characteristics. I am the sum of everything that has happened to me. All of my being is wrapped up in a tapestry that you can’t just pull a thread out of and it will still be a tapestry. Thus, I get angry at many posts I consider ignorant.

Let’s start with “disability” and what it means to me. Yep, I’m physically disabled. Got the doctor’s notes and everything. Does that mean I should be tossed aside as useless? I think not. I work a part-time job, volunteer and have an adult family to tend. I pay taxes. I give back to my community. I don’t consider those “worthless.”

I’m considered mentally disabled as well. As an Autistic, I face challenges others do not. However, I hold to the label of Asperger’s and not the newer “ASD” label. My main issues are with social cues, not intellectual difficulties. I’m apparently sarcastic and dry witted. Traits not appreciated by many. I’m frustrated by those who insist Autism  needs a cure. WTH! The last time people wanted to “cure” my type of disorder, several million people were sent to their deaths in gas chambers.

Yes, I’m angry. Autism $peaks has marketed itself to the point where people think it’s a “good” organization, much like the Susan Komen organization. Both are very public faces of diseases. Both have been shunned publicly by the very people they claim to serve. A$ does not speak for Autistics. They promote eugenics, physical and verbal abuse in addition to painting a picture of despair. Bottom line, you “light it up blue” and you are saying Autistics don’t deserve to exist.

There are so many places you can learn about Autism. Support locally to make sure your time and treasure actually help people and not just generate hype. There is no doubt that Autistics need your help. We need your help accepting our differences. We need your help funding respite care for families. We need your help to ensure families, regardless of economic means, have access to therapies. We need you to understand that different does not mean less.

Can you help?

Rainbow

I will not light it up blue.

I do not support Autism Speaks in any of its forms. I do support Color the World, since each one of us is unique and individual as the colors we see. I also tacitly support Light it up Gold and Light it up Red. Light it up Gold is for the hearts of gold many autistics display. Light it up Red is directly countering light it up blue as red is perceived as the primary opposite of blue.

 

This was written by my daughter. Please take the time to read and educate yourself before you buy into propaganda. You can find the original at

https://www.facebook.com/notes/thoughts-from-a-female-aspie/views-of-the-page-admin-on-autism-speaks/288620804633865

This is a basic list of things to look into with Autism Speaks:

Per DSM-V, I am autistic (even though I disagree with DSM-V). I do not support this organization at all. I do support educating individuals who believe that I should be cured, and about organizations that they choose to support.

 

Other links to look at (some repeats):