Friday, April 26, 2013

Interview with Jim Clewell- Autism Acceptance

Jim Clewell, who lives in the Netherlands, has provided us with this very insightful interview.


I was born in 1966 in the eastern US, severe behavioral and communication problems lead to a diagnosis of MBD with autistic and hyperactive components in 1972. 

My parents chose to ignore the advice of experts, and educators in those years missed the skills to do anything for me. 
My diagnosis was confirmed when I was 15. Physical abuse and neglect was my part in the public school system, my ability to perform in endurance sports afforded me some degree of acceptance and less torment in the last two years of high school. 
The US Air Force gave me the First peace of structure and support, affording me a reasonable start in my adult life. 
I got out of the Air Force in the Netherlands in 1990, and suffered a psychiatric break during my nursing study in 1996. 
I finished my study in 2001, going on to work in mental health, deviant behavior being the only thing I truly understand. 
After years of success in other fields of mental health, I work since five years as a counselor for persons with autism and a normal to high intelligence…. Next to my work as a counselor I am member of a workgroup of professionals, and a panel of autistic adults, working on policy for guidance and care by adults with autism and a normal intelligence. 
I am also a father of an NT daughter.
Jim, that is a very interesting career trajectory. Can you tell us a bit about what is your life like as an Autistic person now?

My life is better than most, I realize this. I have a network of friends and colleagues who value my traits and support me where I am handicapped. They make use of my ability to commit details to memory and to see extreme details in context, they make use of my ability to see different aspects of a situation than the rest. And they realize that I mostly don’t know what the “feeling” is in a setting, so they have to support me as to judging the ambiance where it is not supported by objective information.

What is most difficult about being Autistic?
The most difficult? This has shifted through the years. As a child my answer would have been a question: why does everybody hate me. As and adult it’s the fact that my brain can know so much of things which are data, and yet understand so little of the common experience which the others seem to share without effort. One of the few friends I had in my puberty said it best: “Jim, you know everything, but you understand nothing”. This is frustrating, as if everybody speaks a language which I cannot see or hear, and in the past it has sometimes caused me to be distrustful, thinking that others did it to hurt me. Other things such as sensory overload, are hindrances, but I’ve developed enough coping skills to work around those things most of the time. And as for a general overload, I have friends and colleagues who see that coming and protect me from it. They say at such moments that Jim is temporarily defect……

What is the most exciting thing about being Autistic? 
I now realize what I did not realize as a child. My brain can do other things with information than most peoples brains can. As a child I was tormented for being a walking encyclopedia, and for having a different perspective in every situation. I have since learned that these are talents, gifts. My brain is made with deficits in some areas, but with extreme talents in others. Not only can I absorb and use huge amounts of data, not only can I see that data as a sort of model in my thoughts, but I also don’t know where the “box” is. Everybody speaks of learning how to think outside the “box” in finding novel solutions to problems….. I have no clue as to where that “box” is, making it a talent.
Outside of that I enjoy reading the lay of the land, travelling, and seeing patterns in landscape which are clues to the history of that landscape. I’ve noticed that this is a talent (and interest) which I only share with a few people.

How has the Autism Acceptance Day/Month effort over the past three years affected you personally?
It hasn’t affected me personally, except as a reason to spend more time pointing out the need for emancipation.
I believe that this should be the focus of Autism awareness: EMANCIPATION!! Not benefits, not treatment, emancipation, freedom to be, to be unique, to be different, to be valued, to be accepted, to be loved, to work at a level fitting one’s abilities, to earn income based upon one’s ability to produce, to be supported and at the same time be seen as a whole citizen. 


Emancipation means that services should be tailored to individual needs.

It also means that services and supports should not alleviate all discomfort, they should encourage and support individual development.

We are human, and as all humans we need a degree of discomfort and challenge to develop.

The coaches and supporters should aim their efforts at helping the individual to see what he or she can learn from a situation of challenge or discomfort.

From experience I know that I don’t learn well from abstract concepts, I need concrete situations to practice, fail and learn in.

What is one thing about acceptance that would make a difference in the world?
Neurodiversity implies valuing each others skills and identity for what they are and can bring to the whole. This implies a world of mutual service, helping one another. Helping one another because we need each others help means we are mutually dependant, and less likely to try and harm each other. My past of being harmed leads me to see this as a good thing. 

Do you have children or other family members who are Autistic?
 

Yes, I’ve got several persons with autism in my family, and also a few in my wife’s family. My family also has many men in it’s past with a high level of technical competence and low level of social competence. Only in the past there was a greater acceptance for those who were technically adept and socially inept.
What would you like most for your family members, when it comes to autism acceptance?

Only that I would like to leave them a world in which they are valued as human beings, and not seen as cases, problems or diagnoses.

Thank you, Jim, for taking the time to do this interview. I really love the idea about EMANCIPATION! I think it is an important addition to our thinking about what autism acceptance means. 

Comments are turned off right now. After I contact Jim again, they might get turned on.

Wednesday, April 24, 2013

Interview with Lisa Richard- Autism Acceptance

I am interviewing Lisabeth Richard. Although some times I change the interview questions a bit to make it sound like we are talking back and forth, Lisa's writing style is so direct and forthright that I am just going to keep my basic questions intact and let her responses speak for themselves.

Lisa, what would you like to say to introduce yourself?


I find myself always having to say where I’m from as if it really does define my life, Brooklyn, NYC is my home and has my heart. I am the oldest of three children and for the most part I feel I carry the weight of my family on my unstable shoulders. I had a rocky relationship with my father and an unbreakable bond with my mother. Now at 26 my mother has passed away and I’m trying to rebuild my relationship with my father one step at a time. In the past I’ve used drugs to try and calm my brain and it almost lead to my death on more than one occasion. I’ve been sober now for three years and I now have my own little family with my guy and our 10 month old son. Life is getting better, slowly.

What is your life like as an Autistic person? 

Life is quite interesting to say the least. I see the world differently. I pick up on things no one else notices while being completely blind to some of the more obvious things. In the past this had led to a lot of issues. As a young child who didn’t really understand herself I related better to Anne Rice’s vampires rather than humans. To this day I still see myself as more of a vampire than a human. I like it that way,


What do you think is the most difficult about being Autistic?

By far the most difficult thing I live with is my inability to properly express my emotions and thoughts. Since I was little I would tell people “There are no words for these feelings”. Normies just don’t understand. In a close second is my inability to adapt to social situations. I become overwhelmed and upset at a bar or club or party. I tend to have meltdowns in social groups, which just leads to more social incompatibility, it’s frustrating to say the least.


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

The way I take in the world around me. It often leads to trouble but it doesn’t make me change my perception. I can see innocence where others don’t, or better recognize how a persons trials and tribulations have affected who they are today and look past that and see what I perceive to be who they truly are inside. I also find myself forgiving things much more readily than others which again leads to problems but I don’t mind so much.


How has the Autism Acceptance Day/Month effort over the past three years affected you personally?

 It started out as something that made me quite joyful. Growing up, autism was not a common word. The only point of reference was RainMan and it would get frustrating when people would say “Well you’re not like that character so I don’t believe you.” I was hopeful at first that a day set aside for awareness or acceptance would help the public at large better understand but sadly it doesn’t help as much as I had hoped. But I am hopeful that in the years to come more people like me will look to this day and stand up for themselves and speak for themselves and the ones that cannot and we will stand together and say “You do not Speak for me, I speak for myself”.


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

Thousands of people are walking around today trying to be forced to fit into a world we were not made for. I can only hope with all my heart the future generations of children will not be raised to believe they have to be changed or cured or adapt to please others. I hope that acceptance will truly mean that we can be allowed to grow and develop at our own pace, unhindered by medications and disapproving teachers/doctors/parents. We should be allowed to be proud of our differences instead of hiding them away from an often miseducated public. Acceptance means being able to be myself without worry that people will think less of me. 

Lisa, thank you so much for sharing your life and thoughts with us. I, too, am hopeful that Autistics can look forward to this day in the future and that acceptance will be the norm rather than a somewhat radical idea.


 

Monday, April 22, 2013

autism awarenessacceptanceaction day






autism awarenessacceptanceaction day

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Awareness

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Yesterday, a pretty neat thing happened. I got word that I’d been named by Sharecare as one of their top ten *Social Health Makers*, described on the site as ‘the most influential people in health and wellness on the Web, literally driving “conversations on the leading edge.”‘ Following the announcement, I received rapid-fire requests for interviews. Upon which I wrote to a friend, “Seems this is bigger than I thought. Yay. Sh-t. Sh-t. Yay.”

I don’t like the spotlight. I find it awkward and uncomfortable. But I’ve got something to say, and, well, thanks to my daughter, I’ve got a pretty deeply engrained sense of responsibility to get out there and say it. According to a quick Google search, the newspaper that called first reaches over 400,000 paid subscribers a day. And, well, that’s a lot of people to hear the message. So I agreed to talk to the reporter.

We spoke briefly. As it turned out, she really just needed some background. More than anything, she wanted to know why I blog. I talked about the usual topics. I told her that I’m hell-bent on demystifying autism. I told her how important it is to me to take the conversations into the light so that no one lives in the dark. I told her that I try to lift the curtain of myth and ignorance and in so doing expose the beauty of the multi-dimensional human experience behind the label – in other words, the people, not the words.
We talked about the disparate and sometimes conflicting perspectives and priorities within the autism community and my often fumbling but nonetheless sincere attempts to bridge the gap between them – to show that, as with all people, there is far more that we share than which divides us.

There was more, but you already know the rest.
She asked what I get out of blogging. My time was limited but my words were not. I tripped over them and they began to overlap. Connection, community, perspective, mentorship, guidance, friendship. For me AND for my girl.

And then I repeated what I so often say about blogging – that its greatest benefit for me has been the introduction to so many amazing people on the spectrum. I explained that it is they who have offered invaluable insight into my daughter’s experience and have thus guided me in parenting her from the inside out, as it should be. I talked about how much they have taught me – about dignity, humanity, empathy, respect, advocacy, friendship. I talked about how much they have helped to shape the evolution of my perspective on autism – and so much more.
There was more, but if you’ve been here for a while then you know the rest. You know that when she asked me about specific topics and posts, I led her to Welcome to the Club, D Day, and Person First. You know that when she asked me if I would recommend that parents new to this journey read blogs, I had to refrain from saying, “%&#$, yes” and just say, “Why yes, I would.” You already know that I told her to recommend to them that they do it in small bites, as they can. And you already know that I used the opportunity to once again recommend that they read blogs written by individuals on the spectrum.

But what you don’t know is what happened next. Or maybe you do, but I didn’t see it coming.

“Wait,” she said, clearly thrown off. “There are people with autism who blog … themselves?
The question hung in the air for a moment before I could respond with a socially appropriate answer. “Of course,” I said. “There are many, many autistic individuals who blog – from mildly impacted folks who might present as no more than quirky to those who are nonspeaking and rely on alternative methods of communication, yet are incredibly eloquent in writing.”

“Wow,” she said. “Is there a particular one you would recommend starting with?”

I told her there were far more than one and I would send her links as soon as we hung up so that she could contact them directly. Cognizant of the fact that she was on deadline, I managed to narrow it down to five.

Editor’s note: They are all in the sidebar to the right, or below if you’re reading on a mobile device.

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Acceptance

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Those of us who live and breathe within the world of autism find it hard to believe that there is anyone out there who is as yet unaware. Given our fatigue with the topic, we deride Autism Awareness efforts. “For the love of God,” we shout, “aren’t we passed this yet? How can there be a single human being left on planet earth who is unaware of autism?”

And so we say the time for awareness has long since passed. It is time now for Autism Acceptance and Autism Action. And it is time for those things — it is absolutely, positively time.
But that doesn’t mean that our awareness efforts are – or can be – a mission accomplished.
There’s a really cool phenomenon that Luau and I have noticed in Brooke’s development. While she moves forward along her unique trajectory of skill acquisition, she will often go back and, as we very unscientifically call it, back-fill. While still moving forward (or sometimes pausing to gather steam) she will revert back to whatever developmental steps she may have skipped or too-briefly touched along the way and fill them in.


At nine, she began in earnest to act out scenes with her dolls and stuffed animals, even though she had largely moved to more nuanced play. As a fourth-grader, she is now going back to learn how to add and subtract – while concurrently working on multiplication.

Without heading back to solidify the foundation upon which her newly acquired skills are laid, her mastery of them would be in constant jeopardy – built as it would be on nothing but a house of cards. Though she might be able to answer a multiplication question correctly, the answer would be rote, rather than based on any real understanding of numerical operation. Right answers are good, but rote right answers are hollow. Without comprehensive depth behind them, there can be no fluidity, no fluency, no transferability of concepts.

And so it is with awareness. Knowing statistics or diagnostic criteria or even having once met your aunt’s second cousin’s kid might make you seem relatively conversant, even compassionate and accepting and AWARE, at a cocktail party. But if that’s awareness, then we’re teaching the world multiplication without the understanding of addition.

Recognizing puzzle pieces is not awareness. Spouting statistics is not awareness.

Understanding that the autism spectrum is so broad and so varied as to very nearly encompass the entirety of the human experience – and yes, even powerful, eloquent bloggers who can speak for themselves – is awareness.

Reading those blogs, listening to those voices, understanding those perspectives – that’s the foundation upon which acceptance and action take place.

Today is World Autism Awareness Day. It is also, thanks to Paula Durbin-Westby and our friends at ASAN (Autistic Self-Advocacy Network), International Autism Acceptance Day. To others, it is Autism Action day. To Brooke, it is Tuesday.
And to me, it is every one of those things.

It is a time to foster ACCEPTANCE — not tolerance, ACCEPTANCE.

It is a time to demand ACTION — access to education, employment opportunities, safe and appropriate community-based housing, family services, coaching and support, ABLES accounts, and above all, an end to the blatant hierarchy and institutionalized ableism of our healthcare system.

But so too, it is a day to go back as we move forward. To revisit the developmental stage that we touched upon, but didn’t dig deeply enough into to complete — AWARENESS. Because, let’s be honest with ourselves and each other, when a reporter is still shocked that people on the spectrum can blog, we have some back-filling to do.

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It’s tiring.

We’re over it.

We want to move on.

But we have to get this right.

Because without the solid foundation of true understanding, we’re building it all on a house of cards.

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Action

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Ed other note: I do not, in any way, shape, nor form, fault the reporter for her surprise. How should she know better? Without having interacted with our community before, how *could* she know better? Hence, our work continues. 


Ed other, other note: Check out the UN announcement HERE. You might just be surprised by the language therein.

 This article is reprinted from:
http://adiaryofamom.wordpress.com/2013/04/01/autism-awarenessacceptanceaction-day/

On awareness, support, memory failure, and going back in the closet

 awareness
 
In Flowers for Algernon, Charly is not very aware of the world around, and an experimental drug makes him more aware, and smarter. He gets more attractive to others and more successful; life flows more for him. I’ve also been getting more aware gradually, but with different results. I see other auties at a different stage of life than me, and I think “I used to be like that” (in relation to them not being aware of social facts or conventions). But my awareness hasn’t made me any more desirable or fun. I just cower under the weight of knowing the kind of appropriateness-crap that matters to people, when I didn’t know before. The more I solve old stress issues, I become aware of more things to stress about, so the cycle never ends and I never settle into a nice pattern of ignorance. I feel more disabled, the more I find out. My friend said she would twirl and dance in the aisles at the store, until one day she realized people were watching and judging; then she stopped. Awareness is crushing that way. I used to work in the garden and paint in any clothes I was wearing, so I always wore ragged clothes. Now I wear “nicer” clothes and now I try not to get dirty; I’m so careful that I’m no fun. This business of acting like an adult is a lot like going back into the closet and hiding.
Awareness of convention is not necessarily an improvement, and may take away from awareness of self.

coming out

So I desperately want to come out of the closet. I feel like I have so much potential and I can’t wait to find out who I am. I have only the slightest inkling of what I could be. It feels possible that I’d be nurturing, maybe even fun or generous. I wonder if I’d be desirable to be around, and wonder if no one including me has ever known who I am, and maybe that’s why bonds between me and the other humans are so fleeting and tenuous.
On the day I discovered autism, I went out to the patio and walking, almost floating in spirals of thought I said to myself: I have autism… no, I am autism!… no, I am someone! The shame had been so deep that I didn’t consider myself to be anything much prior to then, and the experience of finding out there were other people like me gave me permission to be something more definite.

support

In autism circles there is talk of “support” all the time. Sometimes it means having an assistant for a certain task and other other times it means having a more general kind of encouragement that one is OK. I know in theory that a supportive environment heals and strengthens a person gradually. For example, one of my high schools was more supportive than the other. In one I went down hill and became a scared depressed empty person, and in the other I regained part of the loss. But what would support look like now? I think with support I’d be able to come out of the closet, and I wouldn’t sacrifice awareness of myself.
I can more easily say what anti-support looks like: when I get othered. For example if I do something in the autism “community”, and I’m the token disabled person, there’s a subtle assumption that I’m automatically wrong. That experience eats away at me and makes me weak.

memory

I have a memory problem that is related to awareness and support. I can often remember to pay attention to other people, or to drink water, or to expose myself to new ideas, or to set my boundaries and remember that I can have my own preferences. But I cannot remember all of those things at the same time. If I start to keep one aspect of life close by, the others slide away. If I remember to feel, I forget to give, and so on; thus I’m always at the threshold of existence, never finding my way out of the closet. The memory issue gets worse with greater awareness of convention and with trying to be something. As I learn and expand in social awareness, I seem to forget more easily who people are. For example there are four sisters who I have known since I was little, but when I saw them last summer, there was only a vague recognition, and the stress of not being able to tell them apart from each other was very stressful. Earlier in life when I wasn’t as aware, I would have not known or cared about that problem, but also I used to be able to tell them apart without as much effort.

I was recently reminded that I haven’t had the giggles in years and had forgotten all about laughing. So I added laughing to my list – the list I’ve been accumulating of things to remember. When I add things to the list, the mental sequence is like this: “Oh right, exploring! I used to explore, but I forgot all about it. I better add that to the list.” The things on that list are general things like exploring, feeling, meditating, following inspiration, making my environment pretty, and taking control.

As Yoda says, “Do or do not. There is no try.” The forgetting comes from trying – trying to be something (awareness) and maybe this leads to my consciousness not even inhabiting my psychic circle – I’m somewhere else.

compassion

Sometimes I see someone and I think “she’s one of me”. I’ve come to see that the concept of “other people” really doesn’t exist – if there is to be no othering, there are no “others”. People say someone is “one of my people” or “in my tribe” – but I suppose I don’t say that because I don’t mean to say there is some division between my people and other people. So I say “one of me” to mean that with that person, I can feel the oneness and the accepting of each other without reservation.

I find the kind of compassion I know about mentally is hard to manifest outside the rare people who I can feel are one of me. My dream of being supported is having a continuous link to enough allies so that I’m not going through life in protection mode, and I’d be outwardly compassionate.


This post is a reprint from  Ian Ford's blog, and can be found here:

On awareness, support, memory failure, and going back in the closet



Sunday, April 21, 2013

Interview with Lei Wiley-Mydske- Autism Acceptance

This is the Autism Acceptance Day blog's first of many interviews with Autistic people.  I am interviewing Lei Wiley-Mydske, who is 37, married with one child. She lives near Seattle.
Lei, what is your life like as an Autistic person?

I really love my life now. For a long time I was undiagnosed, or incorrectly diagnosed, so getting the "right" answers for me has been life changing. I had a very difficult childhood and most adults did not know what to do with me. I was selectively mute, and had meltdowns or panic attacks every day. Back then, people didn't know as much about autism, so I was diagnosed with severe anxiety disorder and depression. Now, I understand a lot more about myself and am learning, slowly, that who I am is okay and I don't need to be fixed. For a long time, I was just considered "dramatic" or told that I needed to "get over it" when I couldn't handle large crowds or needed time to decompress and process information. I had and still have, a lot of problems with executive functioning but was just told I was lazy or seeking attention. I lived most of my life feeling like I just had all these overwhelming character flaws. Being correctly diagnosed has allowed me to start liking who I am. My husband is NT, but has some spectrum traits and he accepts me, and I've found a community and a group of friends who accept and like me for exactly who I am. Even when I feel like I'm a "burden", they are quick to tell me that's not the case.

What is the most difficult about being Autistic, for you?
One of the most difficult things for me is how hard it is to process what I'm feeling in the moment. Social anxiety is a big problem for me as well. I am always afraid of doing the wrong thing or saying something inappropriate. I would say that the biggest challenge for me in day to day life is the fact that I can't drive because of anxiety and visual processing problems. It's very difficult for others to understand that.

What is the most joyful, fun, exciting thing about being Autistic?
I like the fact that I am sensitive and empathetic. I think that autism makes me feel things very deeply, and I like that about myself. I also enjoy being able to have a lot of time by myself. I also believe that my artistic abilities are definitely related to how my autistic brain works.

Lei, how has the Autism Acceptance Day/Month effort over the past three years affected you personally?

To me, it means trying to teach people to understand and empathize with autistics. Also, that autistic people can exist and actually thrive when we are not being forced to "act normal".

I agree! What is one thing about acceptance that would make a difference in the world?
I think acceptance is critical for self esteem and happiness. When I read the book "I Love Being My Own Autistic Self" by Landon Bryce with my son, I cried because I know that is not the message most autistic people are getting, but it should be. I don't think that most NT people truly understand how damaging to the spirit some of the messages that they give us are.

Would like to say something additional about your family?
Yes, my son is autistic and proud! I suspect that some other family members are on the spectrum as well, but undiagnosed. (My son said it was okay to talk about him!)
 I am glad you asked your son. I am doing that with my child, too, as are a number of other parent bloggers. And, thank you for doing this interview! I am honored to have had the chance to talk with you.
 Note: Comments are ON for this interview. Some interviews might have comments and others might not,  depending on the person being interviewed.