Monday, April 24, 2017

Interview with Star Ford-Autism Acceptance Day 2017



Interview with Star, from New Mexico, who works tirelessly to make a difference in the lives of Autistic people, working on collaborative projects with other Autistics.

I'm Star from New Mexico, age 48. I volunteer for a non-profit - Divergent Labs, which is autistic run. I also have a regular job as a software developer. I live with a partner, and a bunch of fruit trees and animals.

What is your life like as an Autistic person?
Life has changed a lot and continues to change; I don't seem to ever find myself and settle down. When I was a child I didn't feel like I was even a person the way other people were, but now I'm finally getting there. I've spent a lot of time trying to advance myself or heal myself or achieve various goals, but it never works according to plan. I first met other autistic people in my 30s and that changed everything. After relating to them I think I gradually learned to relate to typical adults too. I relate to college-aged people now and recently got my first "real job", so I feel like I'm just starting out in life.

What is the most joyful, fun, exciting thing about being Autistic?
The most exciting thing is the automatic, sometimes instant depth of connection I can find with other autistic people, which is very similar to the way I connect easily with children. Also learning things I'm interested in comes easily and I get pretty obsessed about those things.

What is the most difficult about being Autistic, for you
The most difficult things have been the loneliness and chronic stress that I've felt most of my life. I'm not accepted into groups of people as an equal, or often not at all. So even though I have interests and skills and the motivation to be with people and work with them, I usually can't find a way to be part of anything. All the self-help and well-meaning help out there hasn't been relevant because no one seemed to understand me and they pressured me to present and be someone totally different than who I was. So I mostly lived in a protective shell afraid to be naturally me.

How has the Autism Acceptance Day/Month effort over the past seven years affected you personally? If you were not aware of it until recently, what meaning does Autism Acceptance Day/Month have to you now?
I always feel a huge relief when I know that other autistic people are doing something collaborative. I know that mostly they will achieve a depth and truth that other efforts cannot reach, and that they will accurately represent me.

What does “moving beyond awareness” mean to you?
"Awareness" in the autism world seems to be nothing more than a means for the industry to identify a larger customer base. It usually implies "correcting" autistic behavior, which is usually abusive. So to me, moving beyond awareness is replacing an objectifying, spiritually empty view with one that recognizes that people are different and that having the variety is natural and lovely.

What is one thing about acceptance that would make a difference in the world? [or more than one thing if you want!]
If the wider autism community was able to relax and accept the wonderful variety of people, with our different strengths and different needs, we'd be able to change the system of public and private funding that is a big part of many of our lives. In particular we would move away from the idea of treatment, and away from insurance as the model, and go towards a system of supports and accommodations, with accessibility as the core idea that drives those decisions. The public conversation today is still very dehumanizing. As someone who has a job and can do a lot independently, people assume I don't need anything. But really I've needed support and accommodations too and when I haven't found it, I've lived a bleak life with few meaningful connections. I think widespread acceptance would also stop that incessant grading of people as more or less autistic as if we fit neatly on a continuum.
In a more general way, achieving a consensus of acceptance about autism will also help us accept other disabilities, and also will help us all accept each other in all the ways beyond disability where not everyone conforms, or where we're pushing beyond stereotypes - such as language, religious practice, gender variation, alternative living situations, and creative occupations. Acceptance of non-conformity in the broadest sense is an antidote to fascism and is part of the solution to the world's most pressing problems, so it's far wider reaching than easing any one person's struggles.

Wednesday, April 19, 2017

Two Facebook Events- Autism Acceptance Day x 2!

Because Facebook now limits events to two weeks, there are two Autism Acceptance Day events on Facebook this year. I'll post the second one first, since we are into that half of the month. This event started on April 16 and ends April 30. It does not have as many attendees, but, in order to attract at least some attention, I am posting all new materials there first, so that maybe some people will sign up for it.  The URL is

Autism Acceptance Day and Month 2017- Second Half!

The first half of the month, featuring many of the interviews with Autistics (which will be posted in both events when I get a chance) is here:

https://www.facebook.com/events/228087247600054/

I have published sixteen (16) new interviews with Autistic people this year. Please scroll down on the right to see them all. Each person put a lot of time and thought and energy into responding to the questions I sent. This collection of interviews will add to our voices in public space.



Saturday, April 15, 2017

Interview with Aria Sky- Autism Acceptance Day 2017



Interview with Aria Sky

Intro:

My chosen name (pseudonym) is Aria Sky, I’m 34 years old this month, and I live in the USA. My husband is allistic (non-Autistic), we’ve been married for 13 years, and we have several children, of whom half are Autistic and half are allistic. My current interests are music, autism, history, sociology, and gardening. I try to blog fairly regularly and have been involved in gentle parenting circles for over a decade, which has helped a good deal as I’ve come to a greater understanding of my needs, as an Autistic adult, and the needs of my children, both Autistic and allistic.

What do want to say about autism that might help others understand better?

I think that it’s important to understand that we’re not really all that different from allistics. I still have thoughts and feelings even when I’m not able to express them, I agonize about what I might have done when I find out that I've upset someone even when I don’t know how to fix the situation, and I try my hardest to better understand both myself and others even when it’s difficult. I try to arrange my life in such a way that I can sufficiently recover from difficult social and sensory interactions with pleasant activities and extra rest.

What is the most joyful, fun, exciting thing about being Autistic? 

Some things I love that are affected directly by my being Autistic: Splashing barefoot in puddles, diving deeply into brand new interesting topics, reading old books with beautiful language, snuggling my stuffed dog, and having the ability to see past the culture in which I was raised so that I can make the best decisions for myself and my family without being held to any harmful traditions or “that’s just how we do things.” I love being quirky or different and doing what I want or need to do without feeling as though I need to be like everyone else. 

Most of all, I especially love knowing that I’m Autistic. It was much more difficult before I knew that about myself. It was such a large and vital piece of information to be missing from my understanding of myself.

What is most difficult about being Autistic, for you?

The not-knowing I was Autistic was the most difficult thing, I think. Misunderstandings with other people are very hard on me too. I wish that allistics would listen to what I say and not read into my words because then they assume I mean something completely different than what I actually said (and meant). My sensory issues are challenging and often painful as well. I wish that the world and the people within it were quieter and gentler so that it didn’t hurt so much to go out into it.

How has the Autism Acceptance Day/Month effort over the past seven years affected you personally? If you were not aware of it until recently, what meaning does Autism Acceptance Day/Month have to you now? 

In my case, having first really become aware of it last year, it's helped me with my own self-acceptance so that I stopped trying to change myself into someone I’m not and can never be. I hope that someday every Autistic person will be able to accept themselves and live as the wonderful people they are. I love the explosion of Autistic voices - both new writings and old ones being shared again - that I’ve seen both this and last April. I wish that I’d paid more attention to the April Acceptance Months in previous years. 

What does “moving beyond awareness” mean to you?

Well, to me, it means moving from awareness to more helpful things like acceptance, respect, and understanding - maybe even appreciation. I believe that those things can only really come from listening to what we say, learning from it, and believing us! Just being aware is such a passive thing that doesn’t really create any change. Of course, people need to be aware before they know that they need to listen to another perspective, but listening without acceptance and respect isn’t going to get anyone very far towards understanding or appreciation of that other perspective either. 

What is one thing about acceptance that would make a difference in the world? 

People would stop trying to change us and would stop pressuring us to change ourselves to fit their ideas of what people should be like. We’d have extra energy that we could use to focus on being the best Autistic people we could be and to make the world an even better place for everyone.

Interview with James Fahey- Autism Acceptance Day 2017

I am interviewing James from Melbourne, Australia.

My name is James Fahey. I'm 42 and I live in Bundoora, a suburb of Melbourne, I live fully independently of my family, and have done for most of the past 23 years. I require, and demand, no assistance from ANYBODY to help me live my life. If I need help I'll ask for it, but don't hold your breath. There are also times to bite your tongue, and times to speak your mind. I am capable of both, but here it is time for the latter.

James, what is your life like as an Autistic person?

I am extremely introverted, but not particularly shy. I am happiest, and most productive, when I'm alone. I am single, by choice, and have no children, again, by choice. I have had intimate relationships in the past, but they weren't for me. I'm saying nothing bad about those women, just that I found myself fundamentally unsuited  The one requirement to maintain my sanity is to spend 140-plus hours per week alone, and clearly this is incompatible with any relationship partner who does not have a similar need. I've never found such a person. A relationship is like wishing to glue together two rough surfaces. In order for the bond to work, first you need to sand off the rough edges ... of both sides. Something I am unwilling to do. And since I have no interest in forcing my will on anyone else, I shall remain single until someone matching my criteria comes along. And if she doesn't, meh!

Sometimes I feel like I'm wandering around in a parallel dimension, where I can see everyone else but they can't see me. Animals can see me, but not people. Many years ago I had a boss who was a former Aussie Rules footballer, at the top level in the 70's. He told a story, which you can take with a grain of salt if you wish, of a former indigenous team-mate who would take advantage of his dark skin during night games. These were the days when night games were a novelty,  and the lighting often would not cover the whole ground. Supposedly, apocryphal or not, this man would roll around in the mud prior to the game, so his clothes and skin made him difficult to see in the shadows. He would then roam the darkness waiting for the ball to approach, run into the light, take two step and kick a goal, then disappear again before the opposition knew what was happening. True or not, this is a reasonable analogy of how I often feel when I'm out in public. I am unseen and anonymous. I see all, but am seen by no one. But then an action is required. A thought from a perspective others hadn't considered, or a push to safety from a threat others didn't see coming. Suddenly I'm in the thick of it. The life of the party. But in an instant I'm gone, back into the darkness. Back to my world, where I see you and you don't see me. A world removed from human contact, but with animal friends aplenty. A world I love, more than anywhere else.

What is the most difficult about being autistic?

Several things. None of which are inherent to me, personally. Abusive people, from school-yard bullies to full-on psychopaths, always seem to be able to spot us at a thousand paces, with one eye closed. The 'empathy thing'. Where people incorrectly believe that what laymen call empathy, affective (emotional) empathy, is the only form of empathy and rigidly believe this is what Autistics must lack. Such people will often turn a deaf ear if you try to explain empathic concern (sympathy) and cognitive empathy (understanding the thoughts, motives and perspectives of others) are other forms, and it's this last type which is pertinent to Autistics. Though many Autistic adults have issues in none of these areas.

Hardest thing for me personally, is, or least was, the bullying I received in childhood and the anxiety which remains. But hard though it was, and the resultant trauma is at times, still I'm not sure I'd change much, if I could go back. Perhaps just knock off the worst ten percent. Because that bullying was the impetus for me to begin studying others as an occupation, and the reason why I read people as well as I do today. Better than most non-Autistics, in my experience.

What is the most joyful, fun, exciting thing about being autistic?

I do not rate my life on what is or isn't joyful or fun (or not), nor do I aspire to them. I was once told by a psychologist that my emotions occupy a middle band, where I experience neither the ecstatic highs nor the melancholic lows. And this suits me just fine. I never get lonely, never get depressed and virtually never get bored. I get a buzz out of solving real-world problems, particularly where others have failed due to emotion clouding their judgement.https://ssl.gstatic.com/ui/v1/icons/mail/images/cleardot.gif

What do you say to people who think all autistics are rigid worrywarts and computer nerds who can't handle change or understand social protocols?

That they haven't met me, and they need to stop generalising all Autistics based on their experience of one or a few. A more diverse group of people you are unlikely to find. Computers are a necessary tool in today's world, but my love for them ends with the information they can procure and disseminate. I am quite capable at internet searches, word processing and the like, but I haven't got a clue at programming. I'm also not a worrier. I find life remarkably un-stressful, provided I stay true to my semi-solitudinous nature, and change doesn't bother me. As for reading social conventions, protocols, body language and facial expressions, I stack my ability against anyone. I may be many things, but socially clueless or gullible aren't amongst them.

But all autistics suffer meltdowns, right?

Nope, never in my life. I get hot under the collar on occasion, or suffer from sensory pain, but I never lose control.

What about Special Interests? Do you have one?

No, I don't. It's not what I think about which interests me, but the way I think about it. My reasoning, pattern recognition and problem solving abilities interest me far more than any one topic, and these can be applied to any topic. I am highly philosophical, and have in fact been called a philosopher a number of times. If I were to return to university some day, I would study philosophy (including logic).

Pet hate?

Conspiracy theories and hardcore conspiracy theorists. Where anything which indicates they may be onto something is taken as absolute fact, and anything which disagrees is seen as absolutely false, and possibly even another layer to the 'conspiracy'. Confirmation bias and closed-loop feedback gone mad.

What were you like as a child?

Solitary, deep-thinking and happy. That happiness waned for some years, as others pushed me in directions I didn't want to go, such as increased socialisation, parties and the like. But since I gained control of my environment, and have undone many of those things people incorrectly thought would be good for me, I have never been happier.

Puberty was a particularly difficult time for me. It was the only period of my life where I experienced loneliness and depression. But since both those manifestations ended with puberty, one can surmise they were representative only of puberty and not of autism.

Do you have a favourite quote?

Yes, but with a caveat. I have long argued against the practice of proposing various historical figures as having been Autistic, because it does a disservice to living Autistics by painting us as elitist and people who will make assertions without evidence. However likely, we'll never be able to prove such long-dead figures were autistic. We have one bona fide Nobel Prize winner to my knowledge, Vernon L. Smith, possibly more, and that's proof of concept. But making unsubstantiated claims opens the door to others making unsubstantiated claims about us, and makes us look hypocritical when we attempt to counter those claims. That said, and with making no claim as to this person being autistic, this is the quote which best describes my life.

“My passionate sense of social justice and social responsibility has always contrasted oddly with my pronounced freedom from the need for direct contact with other human beings and human communities. I gang my own gait and have never belonged to my country, my home, my friends, or even my immediate family, with my whole heart; in the face of all these ties I have never lost an obstinate sense of detachment, of the need for solitude–a feeling which increases with the years. One is sharply conscious, yet without regret, of the limits to the possibility of mutual understanding and sympathy with one’s fellow-creatures. Such a person no doubt loses something in the way of geniality and light-heartedness; on the other hand, he is largely independent of the opinions, habits, and judgements of his fellows and avoids the temptation to take his stand on such insecure foundations. "

- Albert Einstein

How has the Autism Acceptance Day/Month effort over the past seven years affected you personally? If you were not aware of it until recently, what meaning does Autism Acceptance Day/Month have to you now?

I was not aware of it until recently, but there are good reasons for this. Autism has become a gravy train for many non-Autistics who have vested interests in painting it and us a particular way - possibly the most profitable gravy train in the world today - and a political football for governments to kick around. It has become a multi-billion dollar business, but very little of that goes to assisting Autistics themselves. Indeed one of the most prominent autism charities spends more of their enormous budget on catering (and wages, and just about everything else) than they do on programs to ease the lives of those they claim to represent. And many of these organisations actively discourage, if not outrightly prohibit, Autistics voices from being heard. So with this in mind, it is hardly surprising I've ignored these initiatives in the past.

What does “moving beyond awareness” mean to you?

I'm aware the sun rises in the east and sets in the west, but this awareness doesn't explain why. Nor does it explain that east and west are constructs. Awareness means you know we're here, nothing more.

What is one thing about acceptance that would make a difference in the world?

Acceptance isn't always positive. Knowing you're going to be hanged at dawn, and there's nothing you can do about it is fatalistic acceptance. Where's the positivity in that? What I want is a little appreciation for what we bring to the genome. Everybody has positive characteristics, just as everybody has negative characteristics. And I mean EVERYBODY. When the wider population begins to see that people can be [both] quantitatively abnormal and qualitatively normal, we can end many of the prejudices against minorities (including Autistics) which are so prevalent in our world today. Time we started seeing a little of that empathy [supposedly] others have and we lack.

Any regrets?

Huh, life's too short. My eyes are always looking forward. All the worrying and crying in the world won't undo something over which you have no control.

Final thoughts...

I realised many years ago I like having friends. And I can see the benefits of having friends. But that I don't NEED to have friends, either for their assistance or to maintain my sanity. This gives a tremendous freedom and independence when dealing with people. If I wake up tomorrow to discover I'm the last person left on Earth, life will be difficult. Food, shelter, safety (etc.) will all be much harder to come by than they are today. And there will be people I'll miss. But I won't be crying myself to sleep over their loss. Life goes on, and I'll have far more pressing concerns. I am a survivor and I will survive, with other people or without.

I could barely like the way my brain works much more if I'd designed it myself, and I don't need the validation of others to love who I am.