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.

Understanding the reality of a "carry letter" finally.

I have friends and family who are Trans, people I love, treasure and respect. In the Trans community there is the concept of a carry letter.  It's always been kind of alien to me because I lacked perspective. The concept is simple, because of the way Trans people are treated, especially when they are working to follow the rules of gatekeepers that decide if and when they can attain necessary surgery, they must have a carry letter for their own protection.

Protection from whom you might ask?  Chief among those they need protection from are often the very people who are supposed to protect them. This is sadly not uncommon, in fact unless you are a wealthy, white, male in this day and age, we all need to fear these very people whose job it is to protect us.  Trans people, mostly women, who still have ID with their old name and gender often must have a letter from a doctor verifying they are being seen, and that they are required to live in the "target" gender for a period of time before they can be "permitted" to take further steps.  Police officers sadly, can often pull someone over for a minor traffic infraction and wind up blowing things all out of proportion and causing harm to people because of bias.  Thus a letter from a doctor saying they are fine, under a doctor's care, and this is a requirement for the process of transitioning gender. Logically I have always comprehended this, but never fully understood what it meant or how it feels.

Frankly, Trans people fare just about as well in terms of interactions with authorities as any other minority, with the possible exception of so called "racial" minorities. People Of Color (POC) and Women Of Color (WOC) are ruthlessly slaughtered simply for not being white and or male. Add in transition status, disability status, gender status (TransWOC) and things get even harder which is why #blacklivesmatter is such an important movement in the US today.  Similarly #translivesmatter has become a hash tag because of the way they are treated.  So, Trans people, mostly transwomen, have to have a "carry letter" affirming their right to exist.  It's wrong they are treated this way, and it shows just how sick our country is and has been for some time. And lest we not forget and central to this post, disabled people are also singled out and mistreated for being ourselves. This can be worse when people in official capacities become involved. So #disabledlivesmatter is a real thing too.

Until recently, a carry letter has been something I knew of because people I love are forced to carry them. Otherwise, I had no real personal connection to the concept other than I very much wanted and needed people I love to be safe.

My life, long before being officially diagnosed as autistic and a survivor of trauma, has been punctuated by communications and understanding problems, especially with people in positions of authority. I live with multiple, overlapping disabilities and medical conditions that have contributed to me finally becoming a shutin a decade ago.  I am autistic, and while I am capable of verbal communication much, even most of the time, this is not always the case. I have lived with periods of being nonverbal my entire life, just never knew what or why, even periods of mutism (which is harder/scarier) for me me because then I'm incapable of using typed/written words to communicate at all.  When I'm nonverbal I was able for years to still use written/read language, I'm just physically incapable of making the sounds that go with those words. When I'm mute, the part of my brain that turns thoughts/feelings/and such into words/sounds stops working, so language becomes largely useless to me.

I also have long grappled with what I now know are meltdowns, and trying to reach me, or touch me, or make me behave or respond in expected fashions can be problematic. Thankfully, for me, meltdowns are not violent or destructive, I just collapse into my self and cry, sob, and often get stuck for a while.  I also have always experience periods of autistic catatonia, where my mind shuts off and I freeze up.  Anyway, this post isn't really about what I live with, it's about really being able to finally relate to a carry letter on a personal and deeply meaningful level.  A while back, an autistic advocate, a gifted and brilliant woman with multiple college degrees was quite literally kidnapped and held incommunicado under the color of law. In a sham evaluation and direct violation of her rights as a disabled person her AAC communication device was taken from her, she was declared mentally retarded, and became a ward of the state without having anyone stand up for her. Her rights were so horribly violated so quickly, that all the hard work my doctor had been doing to help me adjust to using an AAC, and having escaped my own diagnosis of mental retardation when I was 8, my fear and trauma flared up somewhat badly.

I was already a shutin 11 years ago when a phone call looking for answers from a government official after a meltdown triggered another meltdown. Mind you the first meltdown was caused by a government official in person earlier in the day. Anyway said government official kept me talking on the phone, called the local police and EMS and had me taken from where I was living and locked in a padded room.  Because of a meltdown.  Again these were people who were supposed to be protecting me, instead they spend the day further traumatizing me, and then locking me away in exactly the fashion that was literally beaten into my head and heart as a child. My father had always threatened that one day "they" would come and lock me away never to be seen again.

Be it a meltdown, flapping, rocking, being nonverbal, mute, catatonic or any number of things, his answer to everything was they would lock me away. December 23 of 2005, it finally happened.  Other times I have come close. Lost it a few years ago, pulled into a parking lot, shutdown the car (yes, I'm autistic and I can drive. Took me a while to get there, but I can and do.) and had a meltdown, in an empty parking lot.  A police officer showed up and wanted to take me to the hospital, because apparently he decided I was a danger to myself or others.  Fearing again a repeat of 2005, it took a great deal of energy I didn't have, to appear "functional enough" to escape getting locked up, again.  Because I was sitting in my car rocking, crying, sobbing and melting down.

Having lived through these experiences without having an accurate diagnosis and having been repeatedly traumatized, the news of the young woman in Colorado, who is still being held against her will and not allowed proper communication or care, let alone freedom or rights of any kind, was a blow to progress I'd been making with my doctor.  The fear became more real, more pressing, and my concerns about using an AAC took on a whole new urgency. Having and using an AAC is new freedom to me, especially now that my doctor worked so hard with me to help me reach a level of comfort where I could not only leave the house when nonverbal, but have a means of living and communicating without being able to speak. Part of the work to reach that state, was having my autism doctor encourage me to spend days when I could still speak, not speaking, and use my AAC instead.

As many people of my neurotype do, I have trouble with change. The doctor I've made so much progress with in the last almost three years was offered a wonderful career opportunity many states away. While being at once thrilled and pleased for her, my fears, many of which where held at bay because she was there to stand with and for me if someone who didn't understand or know locked me away again. She wouldn't be there anymore.  Also an issue for me were half a centuries worth of doctors and other people just deciding no, you're not living with PTSD or whatever, let alone the "you can't be autistic, you're a girl" or "you're so high functioning*" or "you don't get to decide you're autistic/living with PTSD" or whatever, the concept of a carry letter, an official diagnosis that I kept in my own records, in my own possession became so very important to me.  In fact it wasn't until I read the letter she'd asked me to review when I expressed concerns about her leaving that I even realized it was, is not just confirmation of my official diagnoses, but a carry letter as well. I should also point out that unlike my GP, my autism doctor worked hard to find a replacement that I can continue working with, and she assured me all my records would remain available, and I'd still be able to stay in touch with her.

 Anyway suddenly, that one page took on new meaning and importance for me. (names have been changed where appropriate to protect the innocent.)

To Whom it May Concern,

Samantha Shanti has been my patient since 12/12/2013 and has been diagnosed with Aspergers Disorder, as well as, Posttraumatic Stress Disorder.  Because of her conditions, Ms. Shanti can become overwhelmed at times, making it impossible for her to speak.  This is not a reflection of her cognitive functioning or ability to care for herself.  When unable to speak  she is still able to communicate through use of  an electronic augmentative and alternative communication system (AAC), which is a device used to supplement or replace speech and/or writing for individuals who are unable to verbally communicate their needs.  Removal of this device from her possession would be a violation of her human rights as an individual with a disability. 

When overwhelmed Ms. Shanti may also engage in various behaviors to calm herself, such as hand flapping, pacing, or rocking her body back and forth.  These are coping skills through which Ms. Shanti is able to calm herself when distressed. Again, these behaviors are not a reflection of her cognitive functioning or ability to care for herself.  When engaging in these behaviors Ms. Shanti should be left undisturbed and allowed to use her skills to calm herself.  Do not attempt to touch Ms. Shanti or get into her personal space at these times, as this is likely to increase panic and distress.

Ms. Shanti’s use of her AAC and coping skills are essential to her daily functioning and should not be used as evidence of inability to care for herself, evidence that she is mentally unstable, or evidence that she is a danger to self or others.

Ms. Shanti is not a danger to herself or others.
Ms. Shanti is highly intelligent and capable of caring for herself adequately.

Please feel free to contact me with any questions or concerns you may have.

Regards,



Janet Fraizer, Psy.D.

It wasn't really till I read it, that it dawned on me I should have had one of these all along. And that it was for me, a carry letter every much as my Trans family and friends have their own kind of carry letter.  So finally I more than comprehended, I understood, just how important a "carry letter" can be.  I had notarized copies made, one to keep in my car with registration and insurance, one to be kept in my purse and one to give to my Primary Care Physician who has also just changed. The originals are locked in my safe at home with things like my birth certificate, social security card, passport book, and other important paperwork.

*I really don't like, agree with, or see the point in "functioning levels" for so many reasons, not the least of which is because it takes so much work for me to "appear" high functioning, and at times is like teaching a fish to ride a bike. There are days, even weeks when its all I can do to sit in a dark corner, wrapped in a weighted blanket, rocking and crying because they world is all too much.  Hardly high functioning.  The last 8 years have been the first and only time in my more than half a century that I have lived completely alone and cared for myself. It's a victory, and a new kind of freedom, and most importantly, proof I can care for myself.