Sunday, April 3, 2016

Autistic Pride and Autism Acceptance.

#REDinstead selfie
Today was to say the least, a very moving day for me. I woke up early, with a solution in my head I should have thought of sooner, that I could do at the very last minute.  And that's NOT what I'm here to write about.

Had you seen me anytime in the last half hour, I would have seemed every bit a "low functioning autistic" one of those poor helpless children that that Autism Speaks wants to make you both afraid of, and aware of, because every year at this time, they have their "light it up blue" campaign to raise awareness, and money.  And yes, they do, without knowledge or consent, show autistics walking in circles, pacing, flapping their hands, flailing their arms, making strange noises that aren't even close to being "vocal" or language based because they cannot speak, only moan and act out their "suffering."  So here you have this "poor, wretched soul lost to an epidemic of autism" who will never have a normal life, never know real love, never do anything except be a burden on the families they destroy, because you know autism means marriages and homes that are broken too.  At least that's what Autism Speaks will tell you.

So before we go any further, let's revisit that "poor, wretched soul" spinning, flapping, flailing unable to speak, expressing, and acting out her feelings. MY FEELINGS.

I'm going to be 52 this year.  And that solution that moved me so much? Moved me to the point of flapping, flailing, spinning, and "moaning?"  That wasn't because I was suffering in a way you could every, every understand.  That was being so filled with light, love, and blinding joy that I was expressing my overwhelming feelings in a way that is doctor approved safe and healthy for me.  What I did to get there isn't important other than the idea was logical, efficient, and took someone else's feelings into consideration.  Yes, I experience empathy. I can, and do relate to what other people are feeling.  I experience and feel love for other people too.  So without thought of how I would feel, I did the most logical and efficient thing I could do for someone else, so that she could feel good for no other reason than I love her.  So after talking to her on the phone about what I did, and feeling with her, her own feelings of joy and happiness and amazement (which is not why I did it) I got overwhelmed with all the feelings and light coursing through me.  Within some circles it is said karma comes back to you three fold, and not always in the next life. Sometimes with in minutes.  So it was today.  I got off the phone with this person I love, started making some tea, and then I was walking in circles, pacing, flapping my hands, flailing my arms, making strange noises that aren't even close to being "vocal" or language based because I could not speak.  Because I'm autistic, and was so filled with light, love and feelings that I couldn't function "normally."

But wait, didn't I say "started making some tea?"  Why yes dear reader I did.  You see the imagry Autism Speaks is evocative, but doesn't tell a story correctly.  All they see are ruined lives, profound suffering, and an epidemic.  I make my own tea, my own meals, pay my own rent, love my family deeply, I ride my bike like a lunatic, and I even, gasp, drive a car. A car that I own, that I maintain, that I paid for, that I keep legally on the roads.  Yes, I'm a "low functioning" autistic, or to use the offensive language of the person first movement, I'm a poor wretched lost soul with autism.

Except there's not truth in that whatsoever.

I am autistic, it's a neurotype (the way my brain is constructed and operates) and that is so different, so "alien" to many neurotypicals, that I simply must be broken and suffering.

Which for many years of my life I might have agreed with, especially the many times I've been in so much pain that I wanted to end my life so I wouldn't have to feel that pain anymore. But not because I was autistic, but because of the way the world treated me and dealt with me so long.  But I've grown so much, just in the last four years alone.  So, that "low functioning" stereotypical behaviour associated with autism?  That was happiness, joy, light, love and so much more, that I was so filled with, I was incapable of speech, or any other more "normal" form of expression.  Mind you, as a sometimes nonverbal autistic, I have an AAC device that will allow me to type, and have speech come out of it.  It goes with me everywhere in the event I need it.  Which is part of that growth I was talking about. And brings me back to Pride and Acceptance.

I have been living in this apartment, alone, for 8 years come June 3rd. It represents the first and only time in more than half a century that I have lived alone, on my own, with no support, or other people messing with my life in any way.  It's a major accomplishment, one I am inordinately proud of for reasons I cannot even put into words right now.  When I first moved here, I was a shutin.  I left the house only when I was forced to get more food, or go to doctors appointments.  That was it.  I weight 340+ pounds, and I lived in the dark, in the silence, rocking, and trying to heal.  For the first two years I lived here, I would walk up to the walls (instead of into them) and pet them and whisper "mine."  I'll not bore you with how I grew passed that right now because I'm trying to stay focused.

Yeah, focus. That can be a challenge with so much feeling bouncing around inside my head, heart, and body.  Which is why while the tea was steeping I was walking in circles, pacing, flapping my hands, flailing my arms, making strange noises that aren't even close to being "vocal" or language based because I could not speak. And you know, six years ago, four, even three years ago, even just flapping would cause me to burst into tears as the guilt/shame/fear/pain slammed into me. Understand here, that flapping, rocking, and so many other typical autistic behavoiurs are under ABA and worse "therapies" beaten out of us early on.  So when I first moved here, not even knowing what anything was, I'd get up to walk to the loo, and get slammed with that guilt/shame/fear/pain because without even thinking, I'd start flapping. And then the PTSD would kick in, and I'd be a mess.  Guilt/shame/fear/pain you ask?  I'm glad you did.  I had to learn English. it's a second language to/for me. It's not the way my brain works. If you are interested you might read some of Temple Grandin's books, in this case, "Thinking In Pictures" because she and I share that way of moving through living.  Learning English for me was as hard as say learning swahili or chinese might be for a native english speaker. Lots of work.  And because speech was even harder for me, it took much longer for me that most children.  So much so that when I was 8 I was diagnosed as mentally retarded.

Not bad eh? I'm typing this on a computer keyboard. So something worked.  But that's not why I'm talking about Pride or Acceptance. At least not directly. You see in the late 60's Autism was only a word hear in obscure academic or research settings. Certainly not in rural New England farm country where I grew up.  So I grew up with a violent, abusive father who hated his retarded thing, and he used some of the most violent ways to beat me into being "normal" so to speak.  Guilt/shame/fear/pain is a compound experience for me, it represents that Guilt that was beaten into me, the fear of being locked up forever and the key being thrown away if anyone ever saw me, the fear of being abused/beaten/berated/belittled mentally/emotionally/physically abused for something as it turns out I have very little control over.  Not because I'm damaged, but it's because that's the way my brain helps me cope, it's as automatic as breathing, or it should be. Except that all that trauma and abuse, "trained me" like an animal, to perform/behave/exist in a way not natural to my own well being.  So there was also for so long an unhealthy dose of shame because I'd failed again to be "normal" and the intense pain of the flashbacks to my father abusing me as a child.

It took an amazing doctor, the love of my new family and friends, and time, to erase that guilt/shame/fear/pain  response to the point where I not only "look" autistic at home, but in public when/if I need too.  And here's my autistic pride.  I survived to reach a point in my life where I no longer even think about walking in circles, pacing, flapping, flailing, rocking, making strange noises, or being incapable of speech.I no longer suffer, at least for being autistic, because of acceptance. My family and friends, people I love, and who love me, as I am, not as they would have me be, accept that I'm autistic and don't see anything wrong with it.  Yes, I'm different, yes, sometimes I need to type into a machine to be able to speak to people, sometimes I need to be walking in circles, pacing, flapping, flailing like a muppet, or sitting in the darl rocking, or needing a device to communicate, or sometimes not being able to communicate at all in language and have to press pictures on my AAC to tell someone I'm hungry.

The Pride is because as bad as my father was? My mother was that good, and she reached me in a way I could understand, and slowly, painstakingly started me down the path to where I've had people say "But you don't LOOK autistic" or "you must be very high functioning" or any number of other things people say to autistics.  Why? Because they are aware we exist but they don't accept us.

We don't need or want your awareness. It's not 1969 anymore, and I'm not a mentally retarded child.  We, as in all autistics, of all ages, need to be heard and understood in a way that works for us, not that works for you.  We have wants, needs, hopes, desires and minds of our own, but they are different that yours. Not defective, not broken, not trapped, not diseased, or an epidemic. We are people, and as a community we need to be met at least half way, we need to be reached in a way that we understand, and know that you are trying to help us and not hurt us.  And hurt for autistic people comes in many ways you simply cannot comprehend. Light hurts. Sound Hurts. The wrong kind of touch hurts. Smells hurt. Speaking/doing.being too fast, or too slow, hurts.  Things you cannot even imagine can hurt us. WIND hurts, RAIN hurts, SHOWERS hurt. I cannot even begin to explain what it's like for everyone of us, because like you, we are all different.

So I'm proud of surviving to reach a point in my life where I live an open, autistic life, even in public, and have a family that really accepts me. That when I cannot speak with my mouth doesn't blink when I use my AAC.  That doesn't try to stop me from flapping or rocking or making "strange" noises that help me focus and function.  A family that loves me, not who they wish I would be. That's my autistic pride, because I've reached a point of acceptance, and being accepted and embraced as I am by those around me. Who take into consideration some of the things I need to do differently, and just flow with that because they love me.  They see me growing, and healing, and shrinking (I'm not long 340+ pounds) and love ME.

That's acceptance, not awareness.  So part of my autistic pride is being seen in public with friends and family who don't have a problem being seen in public with me. I'm proud of the people I love.  So I'm not lighting it up blue, and never will, I'm all about #REDinstead.  Because being disabled doesn't mean I'm useless, trapped, damaged, broken, or a poor, wretched soul suffering as part of a growing epidemic.  I don't want a cure, I don't want prenatal testing that would prevent people like me from being born, I don't want to see all autistic life erased from the planet.  If you "cure" me, as in remove my autism, I will not be me anymore. I will cease to exist. And that would be a crime. I don't want autistic people I love to be cured or erased, or not to have ever been born, because they bring so much richness, light, and love to my life, just like the neurotypical people in my life. I don't want to lose them either.  To me, people are people. And I accept them as they are, even if it means some of them are not safe for me to be around.

But the people I love, I love fully, without reservation, without conditions, without censure, without limitations, ever.  I was married once. My late husband and his parents were as bad to me and for me as my own father.  But they were that way with each other and themselves as well. And regardless of all that happened, and his death, I still love him because that's the way my heart/soul/mind work.  Many women in my shoes would hate them, be angry with them. It seems to be a common thing.  It's one of the a number of things I actually cannot feel. And I've tried, because I've been told I needed to do that to heal and grow.  But it's one of the challenges my autism brings me. I cannot feel or otherwise experience anger, hate, boredom or so many other things because I'm autistic.  And having spent too much of my life FEELING hatred, anger and so many negative emotions directed at me, I'm so glad I cannot feel them on my own.  So that's a kind of autistic pride there too.

Yes, there are things I cannot feel/experience/do, my brain just doesn't work that way. But there are so many of those I would never want to be able to feel/experience/do, likewise, there are things I CAN feel/experience/do, that many people cannot.  Like what other people are feeling. Which is both a blessing, and at times, a curse.  Today I got to feel what the person on the other end of the phone was feeling, and that was just such a wonderful, and slightly overwhelming experience for both of us really. Because I'd set out to so something logical and efficient, hoping she wouldn't be upset with me, because it really needed doing, and today was the last possible day to get it done, and she had some many other things going on. I knew it was something she so wanted to do, but couldn't see a way to make it happen in time.  So it came to me this morning how to make it happen, and that's what I set out to do.  I really hadn't thought much passed that.  So the gift of being able to feel someone else's overwhelming feelings, was equally overwhelming for me, but in a good way.  It's not the first time we've shared such a connection, and I doubt it will be the last, and I'm proud of that too.  That we have that kind of relationship, where we know each other, feel safe with each other, and yeah, that's some pride in there too.  Because I took so much violence and abuse as a child for talking openly about how other people were feeling and asking why.

"Oh sure, 'it' can't even speak like a 'normal' person but the retard want's to know what hate is and why I'm feeling it? It needs to be put away in an institution where it can't go snooping into other people's feelings and minds when it doesn't have any of it's own."


That's one of the many different things my father said over the years.  Thankfully Mum wouldn't allow that. So while I lived in fear of it, and even saw my father do it with my brother (who is not that we know of autistic, but does have his own problems) I didn't wind up locked away in a padded room against my will until much, much later in my life.  But that's another story.

But right now, I'm feeling something like autistic pride, because I'm accepted, loved, and allowed to be me, even if that means doing things most people cannot or will not do.

Friday, April 1, 2016

Carry Letter revisited: The Wallet Card™ from The Disability Independence Group, Inc.

Recently I became aware of a group in Coral Gables Florida called the Disability Independence Group, Inc. The mission of DIG is to expand opportunities for participation, education, employment and acceptance of Persons with Disabilities through advocacy, litigation, education, and training. - See more at:


One of the programs they have available, to pretty much anyone, is The Wallet Card Program, after looking at their website, I decided I'd submit a request for a walled card myself. Today, that came in the mail, so I thought I'd share what an actual Wallet Card looks like.

This is the front of The Wallet Cardand it contains my name, the fact that I am autistic and disabled, and explains some of the common obvious traits when under stress. It is by no means comprehensive, nor is it really meant to be.  It also contains a biodot that can show ones relative state via body temperature. At that moment it says I'm calm and I would agree with that assessment. My scanner is apparently tense.


This is the rear of the card, which I should also point out is a solid, printed plastic card, just slightly thicker than that of a credit card. It contains how a person of authority can help me to cooperate, and how to keep me from being more panicked or distressed and some of the more common signs that I'm not doing well. It also contains an emergency contact and phone number for that contact.  It is pretty straight forward, simple to use, and the DIG website contains a video showing how and why to safely use it, and will allow you to request your own Wallet Card like I did here.  It is not perfect, nor do I think is it meant to be, but can help smooth things some upon first contact with a public official when we are in trouble.

In my case, for those times I don't have, or want to be carrying my doctors letter, this is a simple, easy to use means of broaching a difficult topic at a time when we are already tense and possibly distressed.