Monday, January 20, 2014

Autistic Adults: Late Diagnoses and Supported Transition: An Interview With Brent White

M. Kelter
theinvisiblestrings.com

Ala Costa Adult Transition Program (ACAT) is a non-profit organization serving students with developmental disabilities between the ages of 18 and 22. Its unique approach involves not only teaching vocational and living skills but neurodiversity and self-determination. Brent White, director of the program, was recently diagnosed with Autism Spectrum Disorder. I spoke with him via e-mail about the diagnosis and his thoughts on ACAT, bad therapists and more.

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M Kelter: When did you first became of aware of the autism spectrum? Did you immediately feel any sense of recognition?

Brent White: I'm not sure at what point exactly I became aware of autism. I think I might have watched a news program many years ago that did a story about autism that left me with the [mistaken] impression that autism was kind of a disease that created strange feral children who didn't love their parents.

I was self-employed with a home-based use/rare book business for a number of years, but in the time following the events of 9/11 2001 the business collapsed. After a progression of often difficult efforts to make ends meet, I ended up working as a para-professional in a community based adult transition program for the Oakland Unified School District in California. I was 43 years old, with no training, no background, nothing.

One of my first students was an autistic young man named Jason. We got to know one another in a college cafeteria pouring over baseball box scores in the newspaper. I understood immediately in a personal way why Jason needed to look at the box scores before participating in any of our daily activities. It was while working with him and other students (and not only autistic) that I began to see myself reflected in another human being for the first time ever. While I didn't fully make the connection for years, the concept of autism took on a new shape in my consciousness. There was a new little voice in my head telling me, “You are autistic.”

I first saw similarities around sensory issues, in seeing my autistic students with pained expressions in the bright sun or having all of us standing there with fingers in our ears on the sidewalk while an emergency vehicle passed with a blaring siren. It was liberating, in a way.

I was a para-professional in the mental health field for more than a decade. I worked at a psychiatric facility with schizophrenic clients. I didn't relate to the clients in the way you did, their experiences were very different from mine ... but it was definitely true that I felt far more at ease around clients than staff. I often found it a relief to be on shift with no other staff, away from the world of small talk. Also, people may not be aware of this, but many schizophrenics are extremely concrete thinkers ... abstract thought can be a challenge ... so this made conversations very direct and linear. The job felt like a good fit for me, in many ways (not to mention the fact that I worked a graveyard shift, due to a light aversion).

Did you ever get the "Oh you must be so patient to work work with that population" nonsense?

Definitely! But actually, the most common reaction was, "I don't think I could do that job, it would be so scary." I found this to be annoying ... most of what people know about mental illness, they know from television and movies, which is beyond inaccurate. Shifts were quiet, uneventful; the more dramatic moments usually involved arguments between staff during meetings. And yet, for most people, schizophrenia evokes images of violence and chaos. There is a powerful disconnect between perception and reality with conditions like schizophrenia and neurological differences like autism; it's very frustrating.

I get the "I couldn't work with the folks you work with " all the time, or the "Oh you must be a saint.” And every once in a while someone will shove money into my hand, "You know, for the special children." I've always worked with adults. Mentally ill = dangerous. Intellectual disability = child. Physical disability = tragedy. Autism = child + tragedy + dangerous. NT folks can be so utterly predictable.

My understanding is that you asked two therapists about the possibility of an autism spectrum diagnosis: can you describe their reactions?

I grew up anxious and afraid. I've never known a period of time when I did not feel this way and at times it has been overwhelming. The collapse of my book business led me to seek therapy for the first time in my early 40s, and it was then that I was diagnosed with PTSD.

I was lost and overwhelmed with anxiety. It was hard to do the simplest things day to day. Viewing my experience through the lens of PTSD made a certain amount of sense, but it just never explained everything to me. The more I studied, the more I found crossover with the experiences of Autistics. I brought this up with my first therapist, but was told that while autism made a certain amount of sense, I was too empathetic and empathy is not a characteristic of autism. I accepted this evaluation at first.

When I brought it up last spring with my second therapist, I was given the empathy answer once again. I sort of realized: more than likely she did not know what she was talking about; and considering that I had many years of experience working with autistics and she had zero, I might be right. PTSD explains many things for me, but it leaves large gaps. But viewing those same experiences through the lens of autism it works, it makes sense. It feels real.

I don't think it was anything nefarious on their part, just a lack of understanding. I think it is hard for professionals to say they don't know. It bothers me that the last therapist was pushing the idea of medication (which I refused); she offered to make referrals, arrangements, but it didn't occur to her to make the same effort about helping to arrange an adult autism assessment. I feel like there should have been more respect for my agency in understanding my experiences.

You mentioned viewing past experiences “through the lens of autism.” Are you finding a lot of specific memories that now make more sense once viewed through that lens?

I think it is important for me to try and speak about is the concept of fitting in. I'm not sure if I was a lonely kid, but I liked to be alone and play alone. I loved looking at books, illustrations and colors. I had no idea what the stories were, nor did I care. I loved colors. When I was around other kids, it was different. They all seemed to know stuff, which even in my kid mind I described as “how to be.” In elementary school I'd stare at the other boys, trying to figure out how they knew how to talk and how to act the way they did. It was like they had all been given some kind of secret. I didn't have a clue how they knew and it was very isolating. I'm not sure how to explain it, because it wasn't a small thing, it was profound for me. And I was so curious to know their secrets.

As a kid, I was resolved to learn the secret. I figured all I needed to do was have practice, experience and one day I'd know what others knew. Of course, whatever the secret is, I still haven't a clue. It has made me feel so frustrated at times; everyone with the secret, everyone speaking and being so easy together. Even the smallest instinct of knowing what to say next or what to do next is still missing. It is blank in my mind. It is isolating. Even typing this I know I can't adequately describe the experience.

Plus there is the matter of my own inner language made of shapes and colors, qualia and metaphor. There isn't much in my inner language that translates into English. Much of what is inside of me has remained a whisper while my whole body wanted to scream. From an early age, these inner experiences have been shamed by others. Many times I've attempted to explain my frustrations or particular points of view; I've been told I'm distant, pedantic, misanthropic, or from outer space.

I was diagnosed as being on the autism spectrum at the age of 30, in 2005. I had been socially isolated for many years, and I found the diagnosis to be very confusing. Once I understood that I had neurological differences, I was angry; things could have been so different in my life with just a little more understanding from people. And it was difficult to reconcile so much personal history with this new understanding of myself. For about a year, I was very bitter and confused about the diagnosis. However, many adults on the spectrum describe having the opposite reaction, it's almost a relief for them

My diagnosis is still brand spanking new. I think the most unexpected thing so far is that I feel less angry. My thought on this is that PTSD occurs because you were traumatized in some way. But autism is something you are born with. That is a profound difference. I've given myself permission to stim (pace and rock) in public. Has this happened to others? I mean, I worked so hard to hide stimming!

I can tell you that, yes, this happens to others. Many autistics are now advocating for the right to stim as needed, and are pushing back against the long standing idea that stimming should be treated and eliminated.

It helps me feel less anxious. I don't need medication; I just need to pace or rock or walk in a way that I feel follows the way the ground curves.

Can you describe the Ala Costa Transition Program? What are the goals for students in the program?

The ACAT is an adult transition program that our non-profit organization operates for the Berkeley Unified School District. For folks who don’t know, students who qualify for special education services are entitled to school district services until age 22. The ACAT program teaches independent, life, and vocational skills. I can talk about this forever and in interest of not spending forever typing this, I encourage people to look at our website at alacosta-acat.org and find a program handbook. I’m also happy to talk to people about program structure.

I'm wondering if you can describe the interplay between your sense of self and the program. I know this is a very personal mission for both you and the staff, so I'm curious about the way your own thinking about concepts like disability and neurodiversity are shaping the program.

ACAT is very personal for me and I think if you read and dig what I’ve typed above, you know why. I’ve been lucky enough, privileged enough and passionate enough to make an attempt to create a space where me and folks like me fit. This is not a neuro-normative space, and while the space welcomes everyone, it is meant to be a place where neuro-atypical folks can prosper. I believe that our ideas about disability are socially constructed and that we need to be aware of how and why it is shaped the way it is shaped, but I understand in a very personal way that folks need support. Our mission is to support.

I started the program a little more than four years ago (I actually was given two and a half weeks to start it). My goal has been to create a space of self-determination, dignity, respect, where voices of folks with intellectual and/or developmental disabilities would be listened to. All of that is easier said than done. The world we live in, the system we work within tends to infantilize and dismiss. There is such a danger in the provider space of the overly helpful helper.

From the advertisements we put out for staff, to the very specific hiring process, to weekly staff meetings, we discuss program philosophy; all student issues are filtered through our philosophy. Our staff is dedicated to providing space that creates opportunity for agency, relational space, safe space, and empowerment.

I have to say that nothing could ever happen here without the teachers, they make it happen. They bring it alive. All praise to them. I can’t express my gratitude enough.

The world puts so much effort into making people with differences feel less valuable; it's easy to feel invisible, shut out. When you teach members about neurodiversity and self-advocacy, how do they react? It can be an empowering, transformative thing, but I wonder if it's challenging to accept at first, just because the world so consistently pushes for the opposite.

The first time a student tells you “NO” is amazingly gratifying. “No” is such a powerful word! We all want say over our own lives and we all have that right, but so often folks with ID/DD are overly protected, infantilized, and dismissed as incapable by families, caregivers and school staff. Students will enter our program and maybe for the first time ever, a teacher will give them space to do something on their own and to make up their own minds. Every single person prospers from self-determination.

The world does continue to push back. I don’t know an easy way to convince the rest of the world that folk with intellectual and developmental disabilities are in fact capable human beings.

Friday, January 17, 2014

Autism Acceptance: Don't Be on the Wrong Side of History

Shannon Des Roches Rosa 
www.squidalicious.com

You don't want to be on the wrong side of history, do you? That's a particularly important question to ask yourself regarding autism acceptance. It's important for you to accept, and then help other people understand, that autistic people like my son are your fellow human beings, with your same inalienable rights to live happy and pity-free lives. That whatever their needs and abilities, autistic people are not "less" than other people.

You can start small with Autism Acceptance if you need to, start on the personal scale -- taking the time to understand, for example, that my autistic son Leo doesn't like restrictive shoes, and prefers Crocs -- it's a sensory thing. Why would I put him through the trauma of wearing other shoes? Understanding that he finds having a straw in his mouth soothing, and letting him have the damn straw because it helps him self-regulate and does not get in the way of his speaking. Understanding that part of his autism is needing an extra beat or two to process spoken language, and not trying to hurry him through that beat or two. Presuming competence, and never speaking about or in front of him as if he is not there.

It is also recognizing that Leo doesn't just love Easter Egg hunts for their candy, but is a visually-oriented kid and is really, really good at finding those colored eggs -- better than his non-autistic sisters. Recognizing that, yes, his visual memory really is so phenomenal that he recognizes when we're on approach to an interstate-adjacent restaurant he's only been to once before -- miles before any of the restaurant signage appears. That he has perfect pitch, and a beautiful singing voice, and is not afraid to use it. That he adores and excels at long hikes in forests or along beaches. That I adore him, that he adores me, that we're part of a happy family.

Being thoughtful and accepting (and appreciative!) of autistic people like Leo is also the right thing to do from the perspective of compassion. Lack of acceptance doesn't just deny autistic people their rights -- it hurts them. Autism parent Colin Meloy understands how negative media messages about autism, and the lack of acceptance those messages demonstrate, can affect autistic peoples' self-esteem and self-regard:
 "You have kids like my kid -- who can read and is verbal -- but is clearly very autistic. There is no doubt Hank has autism, and severe challenges that will likely be with him throughout his life -- and the last thing we'd want him to see or hear or read is how this thing that is a part of him, part of his identity supposedly makes peoples' lives a living hell and tears apart families."
Autism acceptance is about accepting autistic people in general, accepting that my son and his autism spectrum-mates are a diverse crew, accepting that while not all autistic people can speak for themselves, there are large and vibrant autistic communities in which autistic people do speak out, frequently -- and that, when it comes to autism, you need to listen to them.
Leah Kelley's son, for instance, is not at all pleased about the negative way the media tends to portray autism:
"...at barely 14, H is already sensitive to what others are saying about autism and he often feels uneasy and personally threatened by representations of autism in the media that are framed as tragedy and epidemic."
Autistic advocate Kassiane of Radical Neurodivergence Speaking is similarly tired of hearing how autistic people are "burdens" and part of that unsubstantiated "epidemic." Kassiane can read, and she can hear, and she is retaliating with superficially wry but core-deep angry humor:
"49 in 50 people lack autism! Help us find a cause! Help us develop more effective therapies! Help us integrate those lacking autism into a functional society with autistic people! This campaign, while sounding a bit silly, is also a bit serious. Tone it down. Tone down the fear rhetoric. Tone down the alarmism. It is not necessary to light anything blue to show support and love for an autistic individual that can be accomplished by, well, actually supporting autistic people."
One of the best ways to listen to autistic people is by reading their blogs, as Alyssa of Yes That Too knows. There are multiple benefits to doing so:
"Long story short, as long as your goals for your child come anywhere near lining up with the ones most parents of neurotypical kids I've spoken to have (wanting the kid to be happy, satisfied with their own life, not in danger of dying due to physical/medical needs having been neglected, not traumatized, not getting abused) reading the blogs of autistic people is a way to realize that all this is possible -- and give you both hope that this will happen for your kid and ideas on how to help your kid make it happen."
Finally, Autism Acceptance matters because until we get to that point, it will be difficult to do the work that needs to be done to ensure proper accommodations and supports for our autistic children and their adult spectrum-mates. As Matt Carey of Left Brain/Right Brain writes about the new CDC "1 in 50" autism numbers:
"We have roughly 2% of our school age children in the U.S. who are autistic. Disabled to various degrees. Probably a like number of adults as well. For those who don’t accept this notion, keep in mind that one of the major themes of the recent report was how a large fraction of autistics were identified late. They had fallen through the cracks and were possibly not receiving the supports they needed. We are talking teenagers, not just young children. It isn’t that great a leap to say that we there is a large population of unidentified autistic adults.
"Most news stories and most discussion will focus on one number: 2%. I would argue, and will argue, that a factor of at least equal importance is not how many autistics there are, but how diverse this population is and how little is really known."
Do the right thing. Invest in Autism Acceptance. Listen to autistic people. Presume competence with non-speaking autistic people like my son. Put compassion and understanding first. Stop thinking about autistic people with pity, or fear -- and they may stop thinking about you that way, as well. And the world will be a better place. I mean it! I believe it. I do.


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A version of this post was previously pubished at BlogHer.com.

Saturday, January 4, 2014

TPGA's Updated Comment Policy

We've updated our comment policy.

Short version: Please keep comments on topic, and please do so without making conflicts of opinion personal. We want TPGA and TPGA Facebook to be forums in which people feel comfortable discussing and debating autism topics. We do our best to moderate threads and encourage respectful disagreement. However, as we are a tiny team of volunteers, we may not be able to moderate in real time. If you feel we have missed a moderation opportunity, please notify us at thinkingautism@gmail.com.


The main part of our updated commenting policy is below. The full TPGA comment policy can be found at www.thinkingautismguide.com/p/community-guide.html, and is also linked in our website's header as (wait for it) Comment Policy.

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The purpose of Thinking Person's Guide to Autism is to share and discuss information from Autistics, professionals, and parents, as guided by our Mission Statement. We encourage an ongoing dialogue in the comments of each blog post, and on our Facebook page.

While we moderate comment threads as needed, please keep in mind that we are a small team of volunteers and so may not be able to moderate in real time. If you feel we need to pay attention to a specific thread or comment, please contact us at thinkingautism@gmail.com.

We expect disagreement. We also expect commenters to be respectful of post authors, and other commenters. While we have an established readership, many people are coming to this community for the first time. This rich, diverse community has a lot to offer us all if we strive to listen to and learn from each other.

It is our ultimate goal to have an open exchange of ideas in a safe environment. However the editors reserve the right to remove distasteful commentary, and will also consider removing comments if approached by the author of the comment.

In general, comments containing the following will be deemed inappropriate and will be removed:
  • Vulgar or abusive language;
  • Personal attacks of any kind;
  • Unsupported accusations;
  • Offensive terms that criticize individuals based upon neurostatus, race/ethnicity/nationality, religious beliefs, sexual orientation, etc.;
  • Spam or unsolicited advertisements;
  • Marketing copy or links promoting services or products
In addition:
  • Comments should remain on-topic and follow the thread of conversation.
  • Unless a commenter specifically identifies as Autistic or otherwise, please do not presume the neurology of the person commenting. If a person identifies as Autistic, please do not question their diagnosis, even if they are self-diagnosed. Questioning the legitimacy of another person's neurology is not acceptable.
  • Be thoughtful when contradicting or disputing previous comments. Please consider that an opinion in opposition to yours may be put forth due to lack of information, and not to intentionally harm.
  • If you have personal triggers, please consider whether you should participate in specific conversation threads. Conversely, please be considerate of those triggered by certain topics due to past trauma. In all cases, listening is often the best way to learn from discussions.
  • Do not presume all parents are the same. Do not presume all Autistics are the same. Sweeping generalizations can do more damage than good, and hold back those who are trying to move advocacy forward. Statements such as "You parents always..." "Autistics never...." may be grounds for having your comment removed.
Repeated violations of these guidelines may result in being banned from the blog or Facebook page.