I Am Autistic: An Evocation

April 4, 2017 7 Comments

 

This is a piece I was asked to write for the Autism Acceptance Blog last year in [this case] celebration of Autism Acceptance…..

I have become the person I was always afraid to be. I sit here at 57, typing, and saturated with visions of the World Behind the World and my internal language. It is beautiful. I became the person I was always afraid to become and I am beautiful. My body falls through space, sometimes too big and sometimes too small: feeling the pull of gravity bending light and matter. The world too pulls at the edges of my skin or bursts through my eyes and though my ears in multiples of five. My body falls through a world that is never quiet with its architecture assembled from an infinite number of quarks dancing in and out of existence-swirling and screaming: a world that sometimes tears at the edges of my skin from the inside, a world that sometimes breaks my heart too easily; a world I feared for most of my life; a world that constantly pours itself into my body as I fall through its atmospheres.

I am Autistic. “I am Autistic” is the kindest thing I’ve ever said to myself. It is my love song, my reason and my light.

There is a space in dreams you may know. It is an in between space, liminal, existing in the moment when you transition from a conscience state to a dream state or one dream scenario to the next. When I was a child I experienced this space by feeling my body accelerating through my bedroom; or at times, floating toward the ceiling. This is the space I live my life in, an in between space, liminal; A place of intuition and empathy; of metaphorical language where words and their meaning exist in color plus shape, solid and not solid.

A few years ago I found myself in therapy. I was trying to understand the strain and contradictions between my body’s space and the space created by others around me. My body was constantly melting with anxiety [cortisol driven electric storms]. I couldn’t sleep, I wasn’t eating. I couldn’t figure out how to be in relationships. I was isolated and lonely, and even more so when I was with other people. I felt like a ghost haunting the edges of other’s lives, but never a full part of anyone’s life. One can add shame, self-hatred, and lack of access to language to even communicate what is wrong, which in turn lead to years of alcohol abuse, depression and suicidal ideation.

None of these feelings and experiences existed because I am Autistic. “I am Autistic” is the sweetest, softest embrace I have ever felt. They existed because I did not understand that I was Autistic. I’d always understood how odd I was. The way I did things, saw things, understood things was always different than most people. I was ridiculed, bullied and shamed for who/how I was. I was given a flat two dimensional neurotypical world as my guide; a world of too many words and inexplicable social customs. A world where people said one thing with their words while saying something completely opposite with their bodies. A world that was too bright, too loud, with too many bodies moving in patterns my body could never begin to replicate. Perhaps I wasn’t afraid of who I was as much as I was afraid of who I could never be. I never fitted in, the ghost in the room, invisible, unheard, silenced.

Therapy offered some help and a diagnosis of PTSD, which I could never really reconcile. In my efforts to find others with PTSD who were like me, I stumbled onto the amazing Autistic online community. I devoured blogs by Autistics and for the first time found others like me, others with the same sorts of experiences and perceptions. Day by day I began to see myself a little clearer. When I told my therapist that I thought I too was Autistic they told me that, while I presented as Autistic in most ways, I was far too empathetic to be Autistic. I had enough understanding to know that my therapist didn’t know what they were talking about, so I quit therapy. A month or later I was officially diagnosed as Autistic.

When I first wrapped Autism around myself, I was cautious. My head was still filled with the narratives of the non-autistic people who have so ruthlessly constructed the story of Autism for their own benefit. I feared no one would believe me and being unbelieved made me feel vulnerable. However, something exceptional happened. The world rearranged itself right in front of me and I poured out into it. My mind began to remember the colors and shapes which express my internal language. My body unfolded itself and spoke to the natural world with rhythmic gestures and flapping hands. I made friends with others who are like me, neurodivergent, fierce and so magnificently odd. I found a community, a family and a place in the world where I am seen, heard and validated.

“I am Autistic” are the most magical words I have ever spoken; an incantation which brought me back fully embodied into the world after a lifetime of floating above it or just outside of it.

For a long time I tried to conform to neurotypical social constructs in order to participate in the world-often in ways which were counterintuitive to my mind and painful to my body. Conforming meant that I folded myself up into a tiny square and hid who I was, but all that ever did was to take me further from myself and from the world. It nearly ended me. When I think of Autism Acceptance I think of something personal, self-acceptance. I am 57 years old and filled with the profound beauty of my Autistic mind and the joy of my Autistic body. I can’t say that things aren’t still difficult for me, but now I have a framework from which to view my day to day experiences that keeps me from turning pain and anger inward.

“I am Autistic” is balance as I stretch my arms out into the wind. The trees are howling a secret language and I can see past the sky, into the universe and the universe behind the universe. “I am Autistic” is an evocation; a call to return, to become; a beautiful living/breathing/space of acceptance.

Brent White is Autistic, dyslexic and mulitply neurodivergent. He designs and directs adult programs for neurodivergent young adults for a non-profit in Berkeley, California.

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A Speech for the Bay Area Day of Mourning 2016 : “Remembering Disabled People Murdered by their Caregivers” by Sara Maria Acevedo

March 7, 2016 Leave a comment

 This is a re-post of the speech the brilliant Sara M. Acevedo delivered at the 2106 Bay Area Vigil for Disabled People Murdered by Families, Caregivers and the Police. This post originally appeared on the blog, Neurowitching.

March 6, 2016 Sara M. Acevedo

Even in the context of a vigil, where collective mourning is not only invited but also encouraged, it is difficult to talk about death – especially the death of those in our communities whose lives have been taken violently. In many spiritual traditions, we are often called to think about death as a ‘natural’ process and even as an inherent part of life; some anthropological accounts speak of communities for whom death entails both a rite of passage into the world of spirit and the begining of life in a ‘better place’.  What happens, however, when death takes the form of a violent strike against our socially undervalued lives? Is that too a ‘natural’ part of life? A natural part of our lives?  Many in Western capitalist societies think so. Beginning with medical professionals and their detached life-expectancy prognostics, to the ways in which mainstream cultures of ‘health’ ‘well-being’ and ‘productivity’ perceive us – and sometimes even within our own families, death seems like a better way…out. Out of where or what? We wonder. It is also true that we’ve come a long way from the era of the Disability Rights Movement – at least in terms of righfully demanding society’s recognition of our full humanity and of our basic freedoms and liberties – We have come to assert and to demonstrate that our participation in mainstream social contexts is as valuable as is any other human contribution devoid of systematically imposed barriers (wether those are physical , attitudinal, material or ideological ones). What we are fighting for today is for due recognition of our valued cotributions to the weaving of the cultural fabric – including our forms of celebration, our pride parades, our gatherings; the reclamation of our own histories via performance art, dance, oral narrative, and scholarship among other chanels. And, in doing so, we have also found rich mutual cultural recognition. We have come to learn that many of the social barriers that weigh on us, are barriers that others, whose identities intersect at the croassroads of  race, gender expression, sexual orientation, nationality and ethnicity, carry as well  – we have in fact discovered that the social weigh of identities construed as ‘less’ within social hierarchies of privilege and whiteness weigh doubtlestly heavier on racially profiled bodies –

Experiences of Life and Death at the intersections of shared oppression have taught us to recognize one another within large crowds and to remain united across social divisions  – A smile, a silent gaze across the room, and a nudge of the head are all strategies of resistance if we think that death factors in our everyday, as much as recognition across difference factors in our survival.

Sara Acevedo speaking at the Bay Area Vigil, 2016.

Sara Acevedo speaking at the Bay Area Vigil, 2016.

Sara M. Acevedo is a Neurodivergent Mestiza Educator, Activist Scholar and Disability Justice Advocate.

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Banging My Head on the Neurotypical Wall.

January 22, 2016 11 Comments

This past summer I served on a committee which was made up of special educators, parents of disabled children, and fellow service providers. One other committee member was disabled. I was the only Autistic member. Typically I stay away from committees because they are not very accessible to me; too many conversations, a maddening about of words, rules and procedures which are counter-intuitive to me. Committees require a measure diplomacy and subtlety which do not come easily to me. However, I joined this one because I felt that Autistic representation was critical to the committee’s mission.

Since all of the committee members were involved with neurodivergent individuals in some capacity, I hoped that they would have awareness or at least a willingness to learn about the critical importance of assuring accommodations which create an accessible space for their one Autistic member, and by extension all neurodivergent people. Unfortunately, I found just the opposite. I found an impenetrable wall of neurotypical privilege between myself and the other committee members as my attempts to assert my ideas often went unheard. My input was often ignored, framed as “biased” or more often or not, repeated back to me in a “corrected” form where the other committee members told me what I “meant to say”. I became uneasy about speaking up, and then all alone when I did speak up. The experience left me feeling crushed under the weight of the systems which serve neurodivergent people, but are managed and controlled of the most part by neurotypical and non-disabled people. And perhaps worst of all, people who can’t or won’t acknowledge how it is problematic. It seemed to me too easy for the other committee members to hide comfortably behind their neuro-normative groupthink.

At one point a committee member said, in the middle of a point I was trying to make, that, “Everyone is a little Autistic,” I was stunned. I immediately corrected the person; either you are Autistic or you are not Autistic, but it is absurd to state that it is something that all of us are. It was all the more maddening because none of the other committee members seemed to think the comment was disrespectful or inappropriate. No one said anything, which effectively erased my disability from their discussion. If everyone is a little Autistic then what is the point of listening to an actual Autistic voice? What bothers me the most is that all of the committee members have a stake in lives of neurodivergent people, yet they seemed oblivious to how their treatment of their one neurodivergent member reflected on the treatment of all neurodivergent people, including in some cases, their own children. They not only lack the actual experience of neurodiversity [despite the claims of being “a little bit autistic”], but many also lacked any understanding of disability theory and history whatsoever. Without understanding, our history, how are we to providing safe and inclusive space for neurodivergent people?

How can we ever start to discuss empowerment without first demonstrating a desire to give up power so that others can take part? In order to tear this wall of neurotypical privilege down you can’t simply give a neurodivergent person a seat at the table and believe your responsibility ends there. Forcing neurodivergent people to operate in neuro-normative spaces will always create a disadvantage for us. It’s unfair. It acts as a barrier and inhibits our ability to fully use our strengths. It is the responsibility of neurotypical and non-disabled people to understand the full range of accommodations and assure they exist in the first place. It should not be the responsibility neurodivergent people to constantly remind everyone. Neurotypical and non-disabled people have the responsibility to understand our history in detail [institutionalization, infantilization, segregation, sterilization, eugenics, etc.] and question how that history and its narratives contributes to their own understanding of our lives and how this narrative continues to disempower us. Neurotypical and non-disabled people have a responsibility to listen our voices without filtering out the meaning of the message in order to make themselves feel more comfortable.

This metaphorical, neurotypical wall erases our voices and the validity of our lived experience. Creating spaces where our experiences are listen to and valued will help bring the wall down. Until them, my head will remain really sore.

 

The Nuerotypical Wall

 

Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California.

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A Response to Former Special Ed Teachers Who Want to “Show Affection” to Our Adult Participants.

December 23, 2015 5 Comments

The first thing we teach all of the adult participants in our programs is the importance of personal space. This is a concept which seems clear to me, but it is one which we get a lot of pushback from the community about all the time, particularly when it comes to former teachers and staff hugging our adult clients while they are in program. This is a recent example from an email conversation I had with a former teacher and my response to that conversation:

….” Isn’t it normal for people who have known each for years to exchange affections? I know their work is important, but so is keeping up social relations with people in our lives, past and present?…”

Everyone has a right to their own bodies, the space around their bodies, as well the thoughts, hopes and dreams which come from their bodies. We get to choose who touches our bodies and who is allowed into our space. Plus we must understand that others have these same rights. As teachers and staff, it is critical to understand that we are not family or friends. Those are not the roles we should play in the lives of our participants. It is unfair for us to pretend otherwise. It is not that we don’t care, it’s a boundary. Intellectually/Developmentally disabled youth are vulnerable to abuse and dependence when they are not taught physical boundaries. As staff, we never hug our program participants.

And frankly, the practice of special education staff hugging adult students is infantilizing.

Personal space is a critical component of our adult program’s philosophy. As teachers and staff we need to remain mindful of our power differentials and we need to be mindful of how intellectually/developmentally disabled people have been treated historically. We do not touch without permission. We do not get into anyone’s space without permission. We do not touch other’s backpacks, cell phones or wheelchairs without permission. We do not speak for others without permission.

What is “normal” for non-disabled teaching staff in relationship to other non-disabled teaching staff is different, because of the power differential. I can also tell you as an Autistic person that anyone coming up and hugging me is extremely uncomfortable, even painful; however I may not have the verbal language to express that when it happens. Simple respect and mindfulness should make that understandable.

I love that our participants can maintain relationships with their former teaching staff, however those relationships need to be respectful, boundaried and mindful in order to make sure everyone remains empowered.

“…I disagree that hugging is inappropriate in every context, especially given that these are not our current students and they are in some cases adults. Though our current students and staff have a professional relationship, there is room for affection in the professional world…”

It’s important to emphasize that the neurotypical world is a difficult place to navigate for neurodiverse people. The boundaries we establish and maintain in program, including personal space, provide guidelines for our participants which they do not need to stumble around with, guess at or spend energy processing. Boundaries are a kindness.

You mention showing “affection” which is an interesting statement. There are many ways for us to show affection without physical contact and modeling this is important. I will use myself as an example since I am in a leadership position. I don’t think the ACAT participants or my teachers have any doubts about my affection for them. I express my affection through positive regard and respect for them as individuals; through listening, through honest praise, through creating an emotionally open and safe space to be part of everyday. And again by providing solid boundaries which can be counted on. One important boundary is the understanding that I am neither a parent nor a friend; I am a program director and my relationships with teachers and participants all exists within that context. I love the people I work with, but we exist together within a power structure. it is imperative that we understand the power differentials inherent in the context of our positions in order to lead mindfully.

I’ve worked with transition aged youth for 15 years and know that this profession attracts teaching staff who are “helpers”. Helpers empower themselves by regarding disabled people as helpless. I’m linking a couple of articles for you to look at as they might articulate these ideas better than me. This one and this one are about how what looks like helping is actually disempowering. Or what might look like compassion might not actually be compassion. Another reason for insisting on these boundaries is because we can’t always count on staff to be mindful.

 

w6sav

Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California.

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Inclusion Doesn’t Mean That We Become So Invisible That You Don’t Ever Need to Think About Us.

April 15, 2015 3 Comments

Our adult transition and adult day programs are both community-based. Our participants and teaching staff constantly bump up against the negative stereotypes and everyday ableism that many community members harbor towards intellectually/developmentally disabled individuals. For example, two incidents occurred last week. In one, a community member came to my office to express concern that one our adult participants was “allowed” to independently take a dance class without direct supervision from her staff. The staff, who were in fact, waiting respectfully right outside of the dance class. Two other teaching staff members were yelled at by an AC Transit bus driver for “allowing” participants to ask the bus driver to lower the wheelchair/accessibility ramp and to tell the driver where they were going. My teaching staff does a remarkable job of remaining calm when they are confronted by community members, but often those community members are handed my business card and asked to call me directly.

I know I am supposed to be diplomatic and I try, but I see, hear, and feel the same ableist nonsense every day. It is hard to encounter the same misconceptions over and over again. So, I thought I would give the community some tips on how to deal with situations they don’t understand:

  1. Slow down, listen, and be patient. This will go a long way toward helping you understand what someone is trying to communicate with you. The guideline we use in our programs is: when you ask someone a question or make a request, wait as long as you possibly can for a response. Then wait a little longer. Intellectually/developmentally disabled individuals process information differently and it may take us a little longer to respond. There is nothing wrong with this.
  2. Our participants are adults. They deserve the same respect as any other adult. Intellectually/developmentally disabled individuals have been historically infantilized- framed as children no matter their age. This is unbelievably disrespectful. You should stop this.
  3. If you have a question about one of our participants, ask them. Don’t ask their teaching staff. It is disrespectful to the participants and the staff is just going to refer you back to the participants anyway.
  4. Presume competence. This one is easy! Presume that each individual has strengths and the capacity to learn and grow. Of course it might mean that you need to rid your mind of the negative stereotypes about intellectually/developmentally disabled individuals you have come to accept as truth, BUT it will free your mind. I promise.
  5. It’s OK to be different. Remember just because someone doesn’t do something in the manner or the order in which you do it, doesn’t mean that they are doing something wrong.
  6. Communication isn’t just the use of words. Communication is deep and complex. Words are limiting, but watch someone communicate with their environment by using their body, or flapping their hands or arms. Listen to the language of stimming- it is often more beautiful than words.
  7. We all have the right to fail. Our program believes in the dignity of failure. This is how we all learn! One of the biggest burdens the special education system places on our backs is that everyone is afraid to let us fail. Failure, dealing with failure, overcoming failure makes us stronger. It makes us adults.
  8. We all have the right to take risks. We learn by doing, by making mistakes, by struggling and finally figuring it out in our own way. I’m not talking about dangerous risks, I’m talking about the risks it takes every day to be a human in the world: to ask for a job; to ask someone to be your friend, to ask for a kiss.
  9. Trust in the power of struggling. The world for intellectually/developmentally disabled individuals is more often than not, chaotic. It may not appear that way to you, but it is to us. We learn to adapt and the ways in which we adapt are pretty amazing. The way we measure success is by how well someone adapts as opposed to how well they can pass for neurotypical.
  10. We become self–determined, empowered individuals when we are provided spaces to try and succeed. This cannot be accomplished by being shuttered away in some classroom or some other incarnation of an institution. We need to be in the community, working on skills hands-on, and in real-time. And just to note, this is not accomplished by herding large groups of disabled people around in vans under the ever watchful eyes of hovering staff.
  11. The community belongs to us just as much as it belongs to you. I know this is hard to understand, but just take a deep breath and accept it. We have every right to be as deeply included in the community as anyone else. When we talk about inclusion we are not talking about passing as neurotypical. Inclusion doesn’t mean that we are invisible to you and you never have to think about our lives, our history or your part in continuing to pathologize, devalue, infantilize, and isolate our lives.

When you think one of our staff isn’t supervising, you are incorrect. We believe that our participants are all adults learning how to adapt and be in the community to best of each individual’s ability. We give participants respect; we do not hover, restrict, constrain, shame, or in any way coerce participants. We support through mindfulness, acceptance, empathy and presuming competence. We believe that inclusion is an equal partnership.

And if all of this seems too difficult, then try being kind instead of patronizing, this is always a good place to start.

Sincerely,

Brent

 

acceptance-revised

 

Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California.

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Autism is Family: A Guest Post by Sonia Boué

January 7, 2015 2 Comments

I began to write this blog early this morning; by the afternoon it appeared that I might be psychic. One Dr Manuel Casanova, neurologist and US university professor had taken to cyberspace with some pretty toxic yet surprisingly disjointed views on what he considered to be the blight of the neurodiversity movement [[you can read the post here, but Trigger Warning for its ableist language]. It’s distressing, but the only thing to do is blog back with a firm rejoinder on the joys and benefits of neurological variation and the importance of what autistic adult self-advocates do best – giving a window into an important cultural and perceptual difference within the human population.

One of the most striking features I’ve found amongst this marvellous online community of adult bloggers is the urgent desire to communicate about what autism can be. It’s a top class ‘world service’ in my view, which reaches out to it’s own as a support network but also seeks to educate what has come to be called the neurotypical (NT) world – if only it had better ears and eyes sometimes. Blogging has emerged, particularly strongly in the US, and partly in response to heinous misrepresentations of autism by the major US ‘charitable’ player for autism, Autism Speaks (A$), whose negative rhetoric includes a recent comparison of autism with leprosy. Nice!

It is also fostered by a pressing need for understanding in general, and the right sort of compassion, which isn’t steeped in ignorance or pity-based, but works rather on the basis of equality through a respect for neurological difference.  What autism means can be different in each case – although there are common threads – and so I’ve found it’s helpful to engage in total blog immersion, and allow the myriad perspectives to filter through over time. It’s been almost four years since I began this process, spurred by the need to understand family.

So what have I learned?  Well, it’s been quite a revolution because I began at the wrong end of the stick. Through a systematic barrage of misinformation largely filtered through medical models of autism, I truly thought it was a baffling condition visited on the family through a combination of ‘bad’ genes and ‘bad’ luck. It shames me to say that I really did think my job was to help ‘afflicted’ family become as ‘normal’ as possible and ‘fit in’; a task I was mercifully unqualified for, being far from ‘normal’ myself. Menaced by the mantra of ‘early intervention’ and the language of ‘rescue’ versus ‘regression’ we agonised over, but happy failed to implement, a bewildering array of possible ‘cures’. The point is that autism was a negative in our lives and much grief spent over a losing battle to conform. I’m still so very angry about this hi-jacking of a relationship over many formative years in which autism felt like a chasm I could never bridge.

What I’ve learned from all these luminous (and freely given) blog gems, is that autism is so very human. Of course it is, it always was. Autism is not ‘other’, and autism is not what most people think it is. For me, autism is family, and my autistic friends have shown me that autism could perhaps be me. Wired differently too, I share many autistic traits but don’t struggle with social pragmatics. For me (forgive me if your view differs) the inability to process social pragmatics ultimately forms the outstanding feature of my loved one’s particular diagnosis. This specific learning disability (SpLD – current terminology in UK ) feels entirely parallel but rests in a different area of cognitive function from my own neurological disability, in which number, system and pattern don’t register. Both have sensory processing and co-ordination issues at core, and so I use my own neurological difference to create a force field of empathy and many compass points of comparison with my autistic family. It’s a privilege to be so close to autism, and to move between neurologies revelling in the beauty of difference. In sharing so much, my blogging friends have not only helped me understand my loved one, but also to understand myself; a fellow ‘square peg’ as one friend in particular puts it.

None of this detracts from the true challenges within autism and disability (using a social model) in the present. Also there are many co-existing conditions such as epilepsy, which create suffering for autistic people, but self-advocates point out that they don’t suffer from autism itself – this is an important point never taken up by the likes of Dr Casanova and A$. They seem to miss that a cultural definition of autism – albeit with a neurological basis – is being employed; autism here is identity and community. Autism is family. From this perspective, A$ and the rhetoric of ‘cure’ is entirely oppressive. Family is family and spectrum is spectrum. Dr Casanova’s fantasy of an elite intent on superiority is based on poor homework. Read the blogs Dr C.

What’s needed is a focus on the benefits of difference, and a true assimilation of the way in which assumptions about the superiority of neurological ‘normalcy’ (if it truly exists) limit us all. The good doctor holds disappointing views for a neurologist, which is too bad as he has the power to influence opinion.  It’s vital, in my view, to follow the lead of autistic self-advocates in insisting on detail and diversity within the autistic spectrum and avoid too much generalisation, which leads to sloppy assumptions and unfortunate stereotyping. Keeping to the particular safeguards against such unhelpful tendencies, and was one of the original reasons for beginning a blog post today, to share something I found significant, and to contribute; to give back. Because that, Dr Casanova, is what we do. And the following breakthrough moment, has nothing to do with cure, but everything to do with enabling, and empowerment. It’s also about ‘rescue’ in the form of paying to attention to detail and asking the right questions. No relationship to rescue in bio-medical terms.

For some time now my family member has wanted more social contact. But the question has been how to break into the bewildering social whirl outside the school gates? It requires complex pragmatics to navigate the volume and speed of NT communication and find out what the options for joining in might be. This is hefty processing. So imagine, in addition, the confusion arising from ‘hidden assumption’. In this case that everyone knows how NTs gather the relevant social information. You see Dr Casanova, autism can mean not knowing that NTs use questions to achieve connection. Autism can mean not knowing that NTs use them like phone book or a tv listing – just to find stuff out. And autism can mean you experience questions as something quite different. In this case as statements of intent.

I found out about this exact difference of perception only through a very recent social mishap. New Year’s Eve saw another occasion of failed expectation and social imprecision. I’ve spent such a very long time misunderstanding the refusal to use questions to make more effective social arrangements – not even by SMS. I thought processing issues might be at the heart of things every time the grind of mashed gears and a blank expression told me my words weren’t working. I knew to back off. Oh, I get it now, but only because I finally asked the right questions never imaging where they might lead us. That’s how hard it can be, Dr Casanova,  it can take years of mashed gears even with people who have love and patience in their hearts. But at last I know that asking a simple question feels as dangerous as peeling off your skin and showing everyone your acute need for companionship and belonging; how risky and exposing, especially if you don’t have a secure friendship with the other person to fall back on. It’s just what a young person needs when exposure anxiety is also in the picture. No wonder fear has always won out and caused such a roadblock.

At the moment of realisation all the years of thinking helpful hints just couldn’t be processed, flashed before me. I saw the tension leave my loved one’s body. How liberating it must be to begin to understand that simple questions don’t necessarily expose you to others. What fathomless depths to be managed every day when you don’t have a social compass. No-one should ever wonder why fear is so present in autism, nor diminish it. Spectrum is spectrum.

So we need to counter the ignorance of those like Dr Casanova who should know better and care more about detail. I’ve yet to read a blog claiming that autistics are superior to NTs (but I see the inverse implied every day and everywhere). Respect and equality will do. Thank you.

Sonia Boué is a visual artist based in the UK. Using discarded objects and materials, she fashions new narratives referencing domestic interiors and childhood games. Her work is research based weaving together history and autobiography. Barcelona in Bag is a current and ongoing project about exile following the Spanish Civil War. It is in development as an online museum.

“I am more interested in building a community of friends around a piece of work than numbers.”

Sonia has created and currently hosts The Museum for Object Research at http://www.a-n.co.uk

 

Sonia Boué, Arena y Mar (Sand and Sea), detail, mixed media on canvas, 2014.

Sonia Boué, Arena y Mar (Sand and Sea), detail, mixed media on canvas, 2014.

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A Response to Autism Speaks’ Propaganda Documentary “Sounding the Alarm”

August 12, 2014 5 Comments

Lei Wiley-Mydske and Leah Kelley recently blogged about their reactions to watching and live tweeting Autism Speaks’ documentary: “Sounding the Alarm”, which is now available Netflix. I didn’t think I wanted to torture myself by sitting through an hour of Autism Speaks’ alarmist propaganda, but I did. Lei and Leah both do an excellent job of describing their discomfort with the film and I completely agree with their thoughtful assessments. However, I did find myself fascinated by the propaganda itself. The one big take away from “Sounding the Alarm” is that Autism Speaks exists to serve the interest of Autism Speaks and the egos Bob and Suzanne Wright

The film’s propaganda narrative pivots on two major themes: The first is that Autism is a medical condition [a disease] and second, that it is a disease which is spreading at epidemic rates. From these basic premises the film lays out Autism Speaks’ standard appeal to fear: autism will rob parents of their children’s love, overwhelm families with medical expenses and that autistic adults have no futures because the lack of federal support and indifference. Who can possibly save us from this “epidemic”, this “tsunami’? Autism Speaks lead by the Wrights of course.

In order to articulate its narrative of fear, the film depends as much on what is not said is it does on what is actually said. For example the film uses the Center for Disease Control’s newest statistics concerning rates of diagnosis of autism in the U.S. in order to make its argument that autism is an “epidemic”. Autism Speaks’ co-founder Suzanne Wright insists that “There must be an environmental trigger” causing this increased rate of diagnoses. We then hear from three doctors at the U.C. Davis MIND Institute list several possible “causes” for the increased numbers; “pesticides”, “air pollution” flame retardants, the age of the parents. There is even a mention the discredited notion of vaccines “causing” autism. However we never once hear someone mention what the CDC itself and Autistic Advocates have pointed out, that this perceived raise is a result of better diagnosis and awareness among health professionals.

The films narrative of fear frames autism as a disease which can, with the help of Autism Speaks and much funding, be “cured”. Bob and Suzanne Write argue throughout the film that more public money must be spent to find “the causes and cure” of autism. The film completely ignores the idea that autism is best defined as a neurological and developmental variation. This idea is articulated by Nick Walker in his piece What is Autism?. As Walker points out, “Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact”.

The biggest piece missing from “Sounding the Alarm” are autistic voices and the voices of their allies. Aside from a few seconds when we hear from a couple of young autistic men who work at a car wash, there is zero autistic input. Don’t be surprised that Autism Speaks will not include our voices; they can’t.

At the end of the film Suzanne Wright makes two statements; in one she is talking about Autism Speaks’ “Light it Up Blue” autism awareness campaign, Ms.Wright talks about getting groups  to participate from around the world and she says, “I need to do every country”: not “we need to” or “Autism Speaks needs to,” This is about her. In fact, it is autism which gives the Wright’s their celebrity. Autism defines them as public figures; it gives them purpose and influence. Ms. Wright also makes a statement about her grandson’s autism stating the “Christian is going to change the world.” Only this isn’t about Christian either, it is about co-opting his diagnosis to empower Grandma and Grandpa Wright. It’s very doubtful that Autism Speaks will ever listen to Christian’s autistic voice. Autistic voices are a threat to the Wrights, their cohorts and organization’s fraudulent message. Autistic voices expose the bare lies of the Wrights and as “Sounding the Alarm” proves, in order to maintain their power, they purposefully manipulate the truth, even if it devalues and silences those who they claim to serve.

I would recommend doing just about anything else with your Netflix time than watching this particular film, however if you are interested in learning about the joys and possibilities of autism, then I highly encourage you to watch Vectors of Autism: A Documentary About Laura Nagle which is free to view right now.

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Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California.

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Intellectual Disability and Self-Regulation: Jason’s List.

June 30, 2014 1 Comment

Jason's list of program rules.

Last week, Jason took it upon himself to draw up a set of rules for his time in program:

1) Give teachers respect
2) Have my pants pulled up
3) Stay with the group
4) Be safe
5) No complaining in program
6) Be prepared for program
7) Be at cafe by 8:30

I asked Jason what prompted him to make his list. In typical Jason fashion he replied, “So I can remember not to mess up in program.” As Jason matures, his leadership qualities are starting to shine. Jason has made remarkable progress over the last two years; he is living independently in a group home, he works three days a week and he is finding positive ways to direct his inexhaustible energy to get what he wants and needs out of the world. This wasn’t always so; that inexhaustible energy was problematic when Jason first joined our ACAT transition program and we had some serious issues.

It isn’t unusual for participants coming into our community-based transition program to mistake the lack of physical boundaries for a complete lack of any boundaries. There are no classrooms walls here; no fences; no security guards. Of course this doesn’t mean there are no rules. There are in fact very strong rules and paramount among them is that we are all responsible for our own actions. If we mess up, it is our job to take responsibility for our mistakes and to find a way to make things right.

An essential element of the ACAT Program is Self-Determination skill development and an important component of Self-Determination is Self-Regulation, which involves the ability to control our behavior. This was difficult for Jason at first, particularly with personal space and anger control. Learning to regulate those things took a lot of practice and patience for Jason, his family and the ACAT staff who supported him.

When he had issues, Jason was given very clear boundaries about what was expected of him, what behaviors were not acceptable in program and what the consequences were of not staying within these boundaries. His actions however were never shamed and he was never made to feel that he was a “bad” person. We looked at ways the program could best support Jason by creating spaces where mistakes would be less likely to occur. We created a smaller group for him and matched him with participants he had friendships with. Along with being clear about boundaries, we provided him with a toolkit of alternative responses to situations where his emotions might become overwhelmed. We maintained a supportive and positive space for him even in those times when issues arose.

One day Jason stopped to get a cup of water at a cafe while his group waited just outside for him. He accidently bumped into a table and spilled some of a customer’s coffee. The customer jumped up and started screaming at Jason. In the past this would have the potential to be a major problem, but instead of engaging with the customer, Jason walked away and found his teacher, Johnny who supported Jason as he calmed himself. In the five years of the ACAT Program’s existence, this moment is one of the most beautiful I can remember. It was a defining moment for Jason and he has been the model of Self-Regulation and personal responsibility ever since.

Jason provides a great example of the importance of Self-Determination Skills instruction. Jason’s actions belong to him. His success is of his own making and he is wonderfully aware of that. The ACAT program provides Jason with clear expectations and boundaries. We provide positive, non-judgmental space for him to grow, take risks and at times to fail miserably without shame. Jason’s teachers, Johnny Diaz and Jason Guy are positive role models who care a great deal about Jason’s success. It is within this framework that Jason has excelled. I asked him how he feels now when he makes a mistake as opposed to how he felt two years ago. Jason said, “Now I know when I mess up, I can fix it myself.”

[Note: Jason has read this post and it is his wish that his story is shared].

Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California.

 

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Presuming Competence Takes More Than Words: A Cautionary Tale.

June 13, 2014 2 Comments

Ihe giving a treat to Ms Piggy.

Ihe giving a treat to Ms Piggy.

 

[This article is posted with Ihe’s permission]

I posted this image the other day on our Facebook page of Ihe giving a treat to Ninette’s dog, Piggy. I wrote this little bit about Ihe: “When we first met Ihe four years ago, he was terrified of dogs. But Ihe has a deep sense of empathy and kindness which allows him to move past his fears to a place of connection, including dogs. Ihe reminds us each day of the power of inclusion and the profound difference it makes in our lives.”  As I was writing that, I knew that I was masking some truths about Ihe in our program. By masking these truths I was not telling the full story of the remarkable person Ihe is. I was also failing to honestly discuss some critical issues I had with former staff and the mistakes they made in how they worked with Ihe.

I want to be very clear from the start that I am speaking of former staff, what I write about here happened years ago. The adult program staff I am blessed with now are among the best group of teachers I’ve ever had the privilege to work with.

Ihe came to our transition program with a warning label and a behavior plan. He hit, he slammed his fists and threatened people; plus he is large and had trouble walking any distance, which is an issue for a community based program. He came loaded with negative expectations and that negativity carried over into our transition program; negativity which was subtle most of the time and hard to manage.

It started with my staff constantly coming to me with “issues” about Ihe. Ihe processed information slowly and became frustrated easily if he wasn’t given ample time to work through information. Staff and I talked endlessly about giving him the space to process and language to help him express his frustrations. It would get a little better, but then happen again with more intensity. Then came complaints about his body and his physical size all couched in the language of concerns for his health. Red flags went up in my mind. I carefully observed the interactions of staff with Ihe and listened to their “concerns” at staff meetings. I came to understand that Ihe’s “issues” were in fact being created by us.

Despite pledges to positively regard Ihe and presume his competence, staff did the opposite. My staff created chaotic spaces around him; it was written in their body language, vocal tones and their constant anxiety that he might have a “meltdown”. All of these things pretty much guaranteed that he would. I don’t know if staff’s actions were intentional or a subconscious, but this is the classic “Helpful Helper” model, which is so common in our profession. My staff needed Ihe’s dependency; they needed his behaviors in order to frame themselves as behavioral “experts.” The staff spoke the language of self-determination, but self-determination was a threat to them: their own sense of importance, their need of control. It was never about Ihe, it was always about themselves.

I believe my former staff cared about Ihe, however they could never take responsibility for any of their actions, give up control, or understand how their actions actually infantilized and disempowered Ihe. This was my fault. I hired them and was responsible for their actions. It was a very hard lesson to learn. I mistakenly believed that all I had to do was provide an opportunity for people to work in a person-centered, self-determined program environment and they would automatically embrace it. I was wrong. It actually takes pretty special people to flourish in this system. In the end, I systematically replaced the entire staff, created new hiring and training protocols. The lessons I learned have not been forgotten.

For Ihe, the change in staff brought about immediate and sustained change. The complete story of Ihe is beautiful. It is told in the way he builds on top of his successes and the way he owns them and how they motivate him to take the next step. It is Ihe’s self-efficacy which is at the core of his success. What burns in the heart of Ihe should burn in all of us. Ihe, to me is a shining example of what non-judgmental, person-centered, self-determination, and presuming competence are all about. But these ideas need to be more than that collection of words, as educators, aids, and administrators they need to part of our DNA. They require us to be constantly mindful; to step aside and let our students lead; to listen to our student’s wants and needs at all times and not just when it is convenient for us to do so. The reward for us exists in the absolute joy of watching someone like Ihe blossom.

[Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California].

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Adult Autism and Program Leadership: Yes, It’s a Big Deal.

June 5, 2014 9 Comments

Sur Mer 1 [Detail], mixed media, by Sonia Boue҆, 2014.

Sur Mer 1 [Detail], mixed media, by Sonia Boue҆, 2014.

The dust has begun to settle a little bit from a recent incident at an IEP meeting where a student’s family member attacked my ability to direct the ACAT transition program based on my autism. This is the original post and a fantastic response from Sonia Boué. My executive director, board of directors and the school district officials have treated this incident with the seriousness it deserves and I am going to trust the process for now as it moves toward a resolution.

A person involved recently told me that they had noticed how “comfortable” I seemed discussing my autism with the families of students, but they had not understood why it was a “big deal” until this incident. I appreciated these comments because they seem to hint at a recognition of the complexity of the very personal and delicate decision to disclose. But there is more to it than just that, and yes, it is a “big deal”.

I try hard to appear comfortable when I discuss my neurology openly with strangers. Appearing comfortable is practiced. Publicly disclosing either my autism or dyslexia always feels scary. It is not comfortable for me unless I am discussing it with other neurodiverse people. It is however extremely important for me to openly discuss it. It is a big deal that there are too few neurodiverse people in leadership positions in special education and there are far too many people who call themselves “experts” speaking about our neurology, which they clearly know little about. I’ve sat through too many IEP meetings listening to these “experts” get it insultingly wrong.

The day after the family member attacked me; I turned on the evening news and saw mass murderer, Elliot Rodger described first and foremost as having “Suffered from Asperger’s”. This of course is the prevailing view of intellectual and developmental disability in our society; burdensome, tragic, even dangerous. These views negatively affect each and every program participant we are meant to serve. Our ableist society fails to honestly understand neurological differences or to presume our competence. And it fails to acknowledge the existence of the negative neuro-normative constructs which permeate our special education system or how damaging and unsafe those constructs are. For me, being open about my neurology means speaking up to counter the overwhelming amount of misinformation which exists about our neurodiversity; even though that leaves me personally vulnerable.

I believe many special education professionals and caregivers have a firm intellectual and empathetic understanding of neurodiverse experiences. However my understanding is actual and visceral. My experience is lived, constant and valuable. The education and provider systems tend to focus on deficits and can overlook, or fail to even understand in the first place, the incredible ways in which neurodiverse individuals adapt to living in an often unfriendly neurotypical world. As much as anything, my role as an openly neurodiverse program director is to bear witness to astonishing ways our program participants adapt, grow and succeed;  and to bear witness as well to the struggles and pure originality to each individual life; this recognition is indeed a big deal at the deepest, living and breathing level of every neurodiverse individual.

Autism and my specific neurological wiring shapes and colors my life experiences. Growing up and living in a neuro-normative world has often been isolating and traumatic; my difference has been shamed. But it is just these kinds experiences which connect me to our program participants in a profound, intuitive and meaningful way. These experiences are the force which drives me to create programs which honor and respect the unique lives and voices of intellectually and developmentally disabled adults. And yes, this is for me, for us, a very big deal.

[Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California].

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