Friday, April 29, 2016

Rejecting the Politics of Shame

TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today, Finn Gardiner talks about being the "truest, best self" he can be, tackling the "politics of shame head-on," and recognizing "that I could live with my autistic, black, queer, trans self without guilt just for being alive."

Finn Gardiner
[image: Selfie of a smiling black person with
shaved hair & rectangular gold-rimmed glasses.]
Finn Gardiner
www.expectedly.org

My path to autism acceptance and rejecting the politics of shame came along with my recognition of the other intersections I experience: recognising my gender identity, fighting internalised racism, and defining and following a path that was based on my own self-determined goals -- rather than what parents, professionals, and other authority figures around me deemed appropriate.

My childhood and adolescence were steeped in the politics of shame. Family members and teachers reinforced the idea that I was intrinsically wrong just for existing. They may not have said it explicitly, but their actions were laden with this implication. I was told to have "quiet hands," to stop expressing myself in my natural, autistic way. I never knew why having loud hands was "wrong," just that it was. Meltdowns were seen as "behaviours" that needed to be extinguished, rather than expressions of frustration or overload whose cause should be investigated. In one particularly nasty episode, my mother got out her brand-new video camera to record twelve-year-old me having a meltdown, in order to embarrass me into not having more. Thank god this was eight years before YouTube really took off.

I remember being racked with anxiety about parent-teacher conferences and special-education meetings between my family, mainstream teachers, and special-ed staff, where I feared that all the adults would be talking about how disruptive I was, or how I needed to stop talking about my special interests, or how they needed to find a way to control my meltdowns without finding out their cause. And when I did do things right in the eyes of the adults around me, it felt as though it could never make up for those times when I didn’t.

Being treated well by many of the adults around me came with conditions: I had to be compliant. If I did things in an autistic way, those things would have to be to those adults’ benefit, or to make them look like good parents and teachers so they could impress their friends and colleagues. My existence wasn't valuable for its own sake.

These messages made it difficult for me to fully advocate for myself and create a life I considered to be my own, rather than something predetermined by family, teachers, or school administrators. It went beyond autism too; shame and guilt were suffused through other identities and forms of marginalisation too. My way of handling being autistic was to shove things as far in the closet as I was humanly capable of doing. Quiet hands.

I repudiated those aspects of politicised blackness that white talking heads bloviated about on right-wing cable news. When I realised I might be queer -- both in gender and in sexuality -- at the age of 11, I tried to shove it under the rug, thinking that it would "go away when I got older."  When I would have rather discovered my own spiritual path and was on the brink of doing so, I went along with my parents’ adoption of right-wing evangelical Christianity. Instead of being authentic, I had to be compliant. Quiet hands, in another form.

That compliance affected my first attempts at transitioning to adult life. After battling with my parents, who were trying to have me stay at home, take college classes, and work at retail and food-service jobs that would have been horrible for me, I managed to compromise with them. They allowed me to go to a small liberal-arts college in the South, thinking that it would be ‘safer’ than going to a larger institution or a more non-traditional one. When I got there, I struggled with social isolation, difficulties relating to the other people around me, racism, homophobia, and my own internal fights with gender dysphoria, and self-hatred. And then it happened: I crashed. I burned out, dropped out of college and spent the next several years fighting severe clinical depression.

I came to a realisation after this quarter-life crisis: I couldn’t live happily or honestly if I continued this façade. I had to tackle the politics of shame head-on, and recognise that I could live with my autistic, black, queer, trans self without guilt just for being alive. And at that point, I was able to muster my strength, seek help from my friends and the wider community, and truly start on the path of transitioning to a life that reflected my goals and priorities, rather than those of my parents or childhood teachers. Eventually I was able to start college over again, transfer to a top-ranked university to earn my bachelor’s degree, and start my career as a disability advocate. It was a difficult road to travel, involving unstable housing, situational poverty and discrimination based on my gender identity and disability, but I had to keep moving forward and continue to find a place for myself in the world and ultimately give back to my community.

Today I live and breathe my authentic self. I reject the politics of shame and embrace self-determination. This is autism acceptance: being the truest, best self I can be.

Thursday, April 28, 2016

An Advocate Asks for Acceptance in Autism Research

Doctor Office 1
Photo © Subconsci Productions
[image: Instruments on the wall of a doctor's exam room.]
TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today, Kate talks about her experience trying to participate in a TMS research study, how distressing the entire scenario was for her because of the way she was treated, and how autism researchers need to better understand and accommodate autistic people if they want more autistic participants in their studies.

by Kate

I have figured it out, and I kind of feel like a genius.

I have figured it out, and it is this:

Awareness is people talking to you.
Acceptance is people respecting you.

Awareness is that high-pitched, baby voice.
Acceptance is speaking in a normal tone.

Awareness is being invited to the table.
Acceptance is making sure that you can reach everything on it.

Awareness is acknowledging that you have autism.
Acceptance is acknowledging that you are autistic, and that that fact alone makes you more knowledgeable about autism than any non-autistic person.

Awareness is doing science.
Acceptance is doing good, solid science, science that will be able to be replicated and proven and published, science that genuinely helps people, science that has implications for the future, science that is not just good in itself, but is doing good.

If you want to conduct a research study, you need to make sure that you are not just aware of autism, because being aware is not enough. You need to accept autism, and you need to respect the study participants as capable adults.

----

This is my response to learning about John Robison’s new book about being a TMS research subject, “Switched On.” It is my story of how I tried to be part of a TMS research study at the same hospital -- but withdrew, because the researchers did not even know what acceptance or respect of autistic people was.

I hope my experience makes those who have read his new book or heard of the TMS study consider: how reliable is autism research, given that researchers often don't understand or know how to accommodate autistic participants?

----

They wanted me to pee in a cup.

I wasn’t pregnant.

This is my primary memory of my experience, or non-experience, as it turned out to be, with TMS last summer.

They wanted me to pee in a cup.

They said that they had to make sure that I wasn’t pregnant.

There was absolutely no way that I could be pregnant.

They accepted the fact that I was a woman without checking my bodily parts, but they refused to accept the fact that I was not pregnant without checking.

Without me peeing in a cup.

A cup which they handed me in front of the male research assistant, as they cheerily pointed me towards the bathroom across the hall.

I cannot help but wonder if John Robison would have had such a positive experience with TMS if they had started off by asking him to pee in a cup to prove that he was not pregnant. Well, that is silly, you say, there is no way that he could be pregnant. He’s a male.

But did they check? No. They accepted his telling them that he had male bodily parts. Why, then, could they not accept me when I told them in no uncertain terms that there was absolutely, positively no way I could be pregnant? Why did they have this double standard in the study? Gender, after all, is a purely social construct. Just because someone looks like a man does not mean that he could not be pregnant. Just because someone looks like a woman does not mean that there is a slight chance that she is.

The tiny plastic cup I held represented everything wrong with the study. They were not respecting me, but I did not know how to speak up.

I felt humiliated. More humiliated than I have felt in a long, long time. I burned with shame and embarrassment, and also, quite frankly, confusion. Which is probably also something you are feeling right now, so let me start at the beginning.

I saw a study posted in a local autism listserv. It paid $50 a visit. I like money and I don’t mind doing research, so I called them up, answered some questions and made an appointment. Although I am not certain it was the same exact people who did John Robison’s study, I believe it is the same program.

I drove into the city, which I really hate doing; I got quite lost -- but I showed up, and I endured over two hours of horrible testing, the standard WASC and intelligence tests that determine, I don’t know ... how autistic you are? I didn’t know why they needed me to do the autism testing when I had handed over my official diagnosis paperwork, less than ten years old, stating plainly that I had an autism spectrum disorder.

The WASC questions were silly. They made me feel stupid. The testers talked to me like I was a little kid, which I am not. Although it wouldn’t have excused their behavior if I wasn’t: I was clean, well-dressed, and expected to be treated as the professional I am.

But I wasn’t treated professionally, and this hurt me. I also clearly knew more about autism than the researchers did. I was more than a little bit insulted to be evaluated for autism by people who were clearly less informed about autism than I am, using tests designed for little kids.

One test had me look at pictures of several faces, and say if I thought the person was trustworthy or not. The pictures were from the 1970s (I checked) and they were all of white men. I told the tester that I did not know any of these men so how could I possibly know if they were trustworthy -- and anyway, of all racial and ethnic groups, white men have proven to me to be the very least trustworthy, so I didn’t trust any of them. But I still was asked to flip through every one of the fifty pictures, and say, ‘no, not trustworthy,’ because I didn’t know them. This was absurd.

I also had to tell a story from a picture book. It was one of those very imaginative, dreamy-landscape kinds of books, which I dislike. I am not a visual person at all, and told them so. I thought the whole exercise was ridiculous.

In the last test, a woman laid out a variety of small objects, and she told a story which involved anthropomorphizing them. I was exhausted by this point, plus I found the exercise silly, and I told her so. I said that, frankly, I knew the point of the test was to see if autistic people had imagination. I have plenty of imagination, and you have only to look at the Internet to see autistic people demonstrating their incredibly wonderful, vivid imaginations. However, at this time, I could not bring myself to tell some silly little story. I was irritated and tired, and had had enough.

Then they took some blood. They didn’t explain why, but I give blood really easily so I didn’t mind.

----

I thought of the $50.

I thought of how they weren’t really able to explain to me how this research, which apparently hadn’t even begun yet, would be able to help people. They were quite certain that none of their funding came from anything associated with Autism Speaks, so that was good.

But then ... then they asked me to pee in a cup.

Seriously.

I’m fairly certain that peeing in a cup is easier for males regardless, but as a female with really crappy fine-motor skills, I’ve never yet been able to pee in a cup without getting said pee all over myself, my hands, and my clothing.

I became even more frustrated. Why would they trust my answers on any of the tests, but not trust me when I said that I was not pregnant? Also, why would a pregnancy test do me any good then? The magnet part wouldn’t happen for several weeks. If it was the magnet part they were concerned about, then why the pregnancy test now?

If they could not even answer my simple questions, did they really have the ability to design a good study? How could I be sure that they had my best interests in mind, when they did not even respect me enough to take my word for it that I was not pregnant?

So I left. I was exhausted, and I had a splitting headache, which was ironic -- they had said that one of the side effects of the TMS was a headache, but now I wondered if people just got a headache from that horrific sensory environment and those terribly patronizing people?

I somehow managed to drive home. I thought and I thought and I thought, and then I wrote them an email (which I sadly can no longer find) that explained to them that I could not continue with the study, as I did not believe it had any merit. I believe that any study for autistics should at least have a net neutral effect on its participants, and this study had already had a net negative outcome for me.

I would also like to point out now that I had absolutely no idea what TMS was when I signed up for the study. I was after an easy $150, the promised sum after three visits. As I wrote in an email shortly afterwards, “the purpose of the study is to get an easier way to diagnose autism by looking at brain patterns.” This is not true at all, but the fact that I, a person with a master’s degree and years of experience in the field of disability studies, could not understand what the study was about, makes me think that the people conducting it were doing a very, very poor job of explaining to people what exactly the study is about. I certainly would not have signed up for it in the first place had I known that the real purpose was to change my brain because, despite the difficulties that it gives me, I rather like my brain. It has taken me years to get here, but I enjoy being myself.

As stated above, I no longer have the email in which I explained my reasons for declining further participation in the study, but I do have one in which I explained to some autistic friends what happened, and urged them not to take part in the study. It reads in part, “[The researcher] wanted to know what made me sad, worried, angry, etc, and then how I felt when I felt those things. WTF? I felt sad. She narrated a story about two monkeys which looked horrifically like the caricatures of people of color from the early 1900s, and she named them monkeys, but I named Figure A and Figure B when I told the story back to her because they in no way shape or form resembled monkeys. She asked me what I was reading. I said a memoir of the Armenian genocide. She said she liked happy books, told me what she was reading. I did not give a single flying fuck what she was reading.”

John Robison said in an interview with this website that the benefits to TMS for him were great, that things are brighter now, that he feels things he did not feel before. Did the researcher think I was uncaring when I could not bring myself to show interest in what she was reading? Do “normal” people care what strangers are reading? Does the “normal” brain somehow have a better capacity to tolerate the stupidity and ignorance I encountered at the TMS testing site? Would a “normal” brain not be angry when, after I corrected the testers for using the words ‘person with autism’ (instead of ‘autistic’) one too many times, the tester ablesplained back at me why exactly their wording was better?

I feel things intensely, very intensely. I weep at global warming, wake up screaming from nightmares about apocalypses, love hard and hug hard and live hard every day. I am doing what I can, the best I can, every day -- and interacting with people such as those doing the TMS study does not help me to be the best I can. More than six months later, I still burn with shame and embarrassment when I think about my afternoon at the hospital, and the moment when they handed me that little plastic cup.

I wasn’t pregnant. There was no way I could be.

Yet they still made me pee in a cup.

----

I haven’t read Robison’s book, and I don’t plan to; not out of malice, but because it is not a subject that interests me. I do not know him, but I have close friends who trust and like him, and I would like to make clear that I do not have anything against him and I am certain that he is a very nice person. I have read numerous interviews with him about the study process, and they confuse me, because our experiences are so very, very different.

I simply wanted to offer here a different perspective on the TMS testing process, and to demonstrate that his experience was likely a singular one. His results may or may not be able to be replicated. Maybe he did not meet the same researchers I did. Maybe they treated him with more respect, like a partner, not a lab monkey. In any case, I’m certain that he did not at any point in the visit have to pee in a cup. And because the pregnancy test was so very, very ill-thought-out and ridiculous, it really makes me wonder how they could possibly be doing such a good job at it, or designing a good study at all, when they could not figure out, as I could easily, that there was no point in me having a pregnancy test.

Tuesday, April 26, 2016

I Don't Use a Phone

TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today, Amanda Forest Vivian talks about why, no, she really can't use a phone -- and how reluctant other people can be to respect and accommodate her on this matter:

Design by The Dusty Phoenix
[image: White iPhone case
with illustrated narwhal design.]

Amanda Forest Vivian
adeepercountry.blogspot.com


I, an adult person, do not use a phone even though I can speak orally. In fact -- and I'm really letting the team down here, according to a certain kind of motivational speaker -- I can't use a phone.

If you're anything like me, you have had the idea drummed into your head that you should never use the word "can't" unless it is literally true -- not just literally because there's nothing figurative about my inability to use a phone, but until your tongue has been cut out of your mouth, you can't type into an AAC device that will electronically voice your words into the phone, and in fact, all phones have been destroyed in the revolution.

At the very least, many motivational, "positive thinking" types of people consider it to be lying if you say you "can't" do something that you can (according to them) do. At the most, they find it infuriating. I can't count how many times I've heard that certain type of person say, "It makes me really angry when people use the word 'can't'."

Well, it makes me really angry when those people say that. There is no way to get my motor running faster than to say, "Oh, sure you can--just try harder," "Just get up a little earlier," "Just spend a little more time on it." Why don't YOU spend a little more time on it?

And by "it," I mean understanding that "can't" is an important word and banning it doesn't do any good. It just creates inefficient situations where people are in denial.

I used to use a phone a little more because my position was that I "could" use one. However, I frequently ran into problems when I was not able to communicate or understand people on the phone, or when -- despite deciding I would make calls -- I just could not bring myself to do it.

A few years ago I made the executive decision to start saying that I couldn't use a phone instead of saying that I could use one. The only change was in the label, not in my abilities. Well, there was another big change -- I made plans and decisions based on my inability to use a phone. So things have only been looking up.

The Score

How come I cannot use a phone? There are two pieces to this:
  1. Anxiety/movement. I just cannot bring myself to make phone calls
  2. Processing. I'm physically able to pick up a phone when it is ringing, even though I cannot make phone calls. But I still don't communicate very well, because I process pretty slow anyway, it's harder to understand people on the phone, and my speech is hard to understand too.
In real life, I have two options for answering a question: immediately, or correctly. If I answer right away, just any random thing will come out on autopilot. In real life, though, you can at least pause a little and the person can see you're thinking. But on the phone, they will think you hung up. So, I can't stop myself from just autopiloting and producing any answer that sounds acceptable, even if it isn't my real answer.

Fairly or unfairly, I feel like people are just waiting for proof that I'm lying about not being able to use a phone. Of course proof like that is readily available, because there are times when I can use a phone. Sometimes if the conversation is going to be very simple and I'm also calling a friend and I'm very relaxed, I can make a phone call. It's really stressful because I feel like when people see things like this, they will hold it against me the rest of the time.

The Setup

I officially decided to stop talking on the phone when I was working for a home care agency. They would often call me to ask if I could go to work for a client in the near future, like in the next few hours. Not having enough time to think about it, I'd always say yes. So I'd end up working with clients I wasn't really suited to, in places I might not even have enough time to get to, and without having time to adjust to the change of schedule. (The day before is really the latest someone like me should ever make plans.)

At first I tried to cope by always saying "no" instead of "yes," but this wasn't great either since I didn't get any shifts. So, I took the plunge -- I told my job that I have a processing disability and would like to only be contacted by email or text. I changed my answering machine to say that I don't use the phone, and listed alternate ways of contacting me.

Pretty soon, someone at the agency forgot and tried calling me on the phone. I sat there and ignored the phone call until, eventually, an email arrived about the shift they wanted me to work. I still work for that agency sometimes, and I haven't received a phone call from them in years.

Dealing with medical things was harder -- well, it would be, except that when I "could" use a phone, I did not go to the doctor or dentist for more than a year since I couldn't make appointments. Now, I can go.

I am a personal assistant for a severely disabled lady and I spend a lot of time with her family. Her dad, Richard, is very good on the phone and has gradually ended up in the position of making appointments for me and helping me with things like changing my insurance. I used to feel guilty about this, but I have to admit there isn't a better option, and it wouldn't be good for their family either if my health wasn't being taken care of.

In some cases, if someone else makes phone calls for you, you will have to fill out forms -- or your doctor or insurance company won't be allowed to talk to them. The forms aren't too much trouble to fill out, but there can be a problem if your usual phone person isn't there to help. For example, my clinic admirably refuses to let anyone besides me or Richard change an appointment time, so once when he was busy and my boss's mom tried to call instead, they wouldn't talk to her. (In this case I was able to get on the phone since the call was already started, and it was a simple subject.)

When I wanted to try therapy, my roommate Rachel had to write down a bunch of stuff about me so she could call a counseling center and do the intake interview, where they would usually ask the client about themselves. Thanks Rachel!

In some cases, I can go in person, like going to my clinic to change an appointment time. It's time consuming but I can do it by myself!

Sometimes the whole setup is not successful. For example, once I didn't answer a lot of calls from a number I didn't recognize, and it turned out Comcast was about to shut off our Internet. I guess they didn't listen to my answering machine message about how to contact me.

Most things are not accessible to people who can't talk on the phone, which I guess is something that you don't think about if you can talk on the phone. I have to admit that I am not as functional, not using a phone, as I would be if I could use a phone -- but in reality, this isn't the choice I have. I can come up with alternatives to using a phone, or I can silently be unable to access things because of course I "can" use a phone.

Monday, April 25, 2016

Five Ways to A Brighter Future for Autistic People

TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today, British autistic filmmaker and author Carly Jones outlines her "Top five understandings previous Autistic generations did not have, that the next Autistic generation must have as standard."

Carly Jones
www.facebook.com/olley.edwards

Carly and her family
[image: A laughing white woman with long dark hair,
lying on a striped blanket with her three children.]
 1) See autism as a real disability

Disability is not a dirty word, though it feels that way to some -- we are all too often encouraged to see disability as “less than” “inferior,” or “disadvantaged.” I see disability as someone having a different experience of the world than is "typical."

Although Theory of Mind (lack of pre-installed knowledge that other people's thoughts, wants, and agendas may differ from one's own) is noted as a neurological condition rather than a sense, I often think it would be better viewed as a sense. And If we think of humans as having six senses rather than five, and consider that Autistic people often struggle with Theory of Mind, that is one way to see how Autism is a disability -- and also why that is OK. 

Theory of Mind is so often taken for granted, but it really is the foundation of how most humans interact with and perceive the world. Without it, our experiences of the world can be very isolated, and vulnerable -- with all other senses are supercharged in order to compensate: our hearing, sight, touch, smell, and taste almost in a heightened dance to explore and seek out -- or indeed deter -- from others' experiences.

This Theory of Mind can be taught, if it doesn't come naturally; you can learn to second-guess a situation sufficiently, and navigate life with less vulnerability. But differences in having a Theory of Mind are one reason why all autism diagnoses, even “mild” ones, are not mild at all. While the ability to talk is certainly not a golden ticket to being able to communicate your needs, the ability to talk does give the impression you require less understanding and support which in itself is dangerously misguided -- especially when your disability is not an obvious one.

2) Provide equal diagnosis access, regardless of gender

An Autism diagnosis should not be acquire through a lottery. But given various Autism clinicians' perceptions, experiences, and stereotypes plus the variety of available diagnostic tests/tools, and different countries' Autism knowledge bases, a fair and equal diagnosis experience is unlikely -- unless the Autistic person themselves has taken enough time to research the tool, doctor, and setting that best comprehends their unique set of Autism traits.

Gender stereotypes can also interfere with the process of diagnosis. As Autism is typically seen as a male condition, males are the most likely to be diagnosed, followed by females who have more typically "male" autistic traits. Females who present with more characteristically feminine autistic traits are often overlooked, and autistic males who do not present with typically male traits are in even more of a grey area -- in many cases sharing the experiences of women and girls who grew up with little to no understanding and support.

My research paper Gender Fluidity Prism in Diagnosis of Autism Spectrum Disorders, which discusses matters of gender complexity in autistic people, had incredible feedback: showing we need more gender-neutral diagnostic tools, and -- more importantly -- better training of clinicians to use these diagnostic tools in meaningful fashions.

3) Enforce equality in education, exams, and employment

It is incredible, almost unthinkable, that only 15% of Autistic adults are in full time paid employment. Fixing this situation is not a simple as pleading with employers to see the "Autism Advantage," and it starts much earlier than the interview room, or the rejection letters. Increasing autistic employability starts with addressing inequality in educational settings and exams. Ask yourself: If people knew you had a high IQ and a special interest/expertise, but you had no way of showing your abilities in an exam situation, would you be considered a respected professional -- or a eccentric obsessive?

I have been researching the UK General Certificate of Secondary Education (GCSE) papers, and find  the questions loaded with theory-of-mind-based exam questions. In 2014, for example, an Autistic youth's ability to get an English "Pass" would be dependent on reading a newspaper article about a tree, then describing in essay OTHER PEOPLE'S THOUGHTS about said tree? In my opinion, this is unethical – it does not work, it is a massive oversight, and is detrimental to the rights of Autistic students. I am in process of translating these questions to be more Autistic-friendly -- to present an alternative paper for those who struggle to with Theory of Mind.

4) Fight for visible, ethical media and press portrayal

We need more balanced inclusion of Autistic people in mainstream settings: TV, Radio, the Arts, on professional boards and capacities. We need more portrayals about us that include us -- and not just on disability or diverse programming or days [or in April -Ed.].

My rule of thumb and advice for anyone who writes, constructs, or participates in media is that when the word 'Autism' or 'Autistic' is used in an article, script, or auto cue -- think about how it would play if you changed that word to 'Black, 'Asian,' 'Gay, 'Lesbian,' or 'female.' If it suddenly sounds cruel or disappointing -- it was already cruel and disappointing!

5) Advocate for better training, and awareness of front line services 

The mortality rate and lifespan for those on the Autistic spectrum is much lower than in the non-Autistic community: the mean age of life expectancy is 39 years of age. According to Autistica's research, those both with and without an “intellectual disability die younger, and Autistic people are NINE times more likely than the general population to take their own life."

Our front line services are a fundamental way to change and improve Autistic lifespan prospects. Paramedics and doctors need to be aware of a person's Autism straight away, in order to cater to their health needs. An Autistic person's symptoms may not be taken seriously due to their inability to ask for help, a monotone delivery of information to health professionals, or indeed the patient being hyposensitive to pain and therefore not appearing to be in need at all. My daughter was given a spoon of mild children paracetamol in hospital for a broken arm as she was not crying; I myself was told to go to school with my headache/tummy ache at 14 by my doctor/GP, only to have my appendix removed later the same day – we can hide our illnesses well, and often not intentionally!

We need to have police understand that their commends will be taken literally, that we may not be able to talk or communicate in a manner they expect, that eye contact -- or lack of it -- is us listening to them, and not being shifty. And importantly, when overwhelmed we will do whatever we need to make the bombardment of questions and communication stop -- even to the point of false confession.

Our helpline services need to know that, in the UK, we are nine times more likely to need them, but that 77% of Autistic people recently questioned said they would not be able to use a phone in times of a crisis. And the response time to emails and texts to helplines are is 4-12 hours compared to the 3 rings goal for telephone calls. The crisis points such as train stations and car parks only advertise the telephone numbers, not a text or email service. Thankfully, The National Autistic society and the Samaritans UK are eager to help change this.

Friday, April 22, 2016

How Can We All Do Better By Our Autistic Girls?

TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today, five women talk about about the under-recognition of autistic girls, the long- and short-term effects of going without supports and accommodations, and what autistic girls and actually need to succeed and be happy.



Black Girls Swing Playground After School Grand Rapids Montessori Lourdie 10-24-13
Photo: Steven Depolo (Flickr)
[image: Two smiling African-American girls, on a swing set.]
Autism is different for girls, and not only because fewer girls than boys get autism diagnoses. Autistic women and girls tend to have different traits than autistic boys do, and are also socialized differently -- leading to many of those girls being overlooked or misdiagnosed well into adulthood, plus leading most of their life without the supports that could have made their lives much easier. It gets even more complicated when autistic girls are also racial minorities, and/or from low-income households.

How can we better recognize our girls who may be autistic? How can we make their lives easier? We spoke with five women of various ages, diagnosis ages, and nationalities about their experiences growing up -- diagnosed or not -- and what they’d like other people to know.
  • Emily Paige Ballou is an autistic theater professional and writer based in New York. She was diagnosed with Asperger’s syndrome as a young adult.
  • Olley Edwards is an autistic British writer and filmmaker, and parent to a neurodivergent family of three girls. She was (finally) formally diagnosed with autism herself only recently.
  • Patricia George is an autistic Canadian writer, photographer, and artist. She was diagnosed with autism in her early 40s after a lifetime of being misdiagnosed with other conditions.
  • Christine Langager is a writer, homeschooler, volunteer with an autism service dog organization, and a retired athlete. She is also an adult-diagnosed autistic parent to two autistic boys, and spouse to a U.S. Marine. She lives in Southern California.
  • Siobhan Travers (Nez Perce) is an autistic writer, advocate, teacher, parent to an autistic daughter, and was diagnosed with autism herself as a child. She splits her time between Lapwai, Idaho and Northern California. Though considered “minimally verbal,” she speaks five languages.
What do you consider some of the most commonly misidentified or overlooked traits of autistic girls?

OLLEY: Many autistic girls (and males) may present with a more stereotypically "female" social pattern: they are very social, even overpoweringly so. This can actually be an extreme attempt to replicate what they perceive as "normal " relationships. Clinicians need to look deeper not at the level of social life, but at the quality of it. Is this the genuine self, or are they playing a role?

The vulnerability being underestimated is a vast problem in self care and safeguarding, if you are Autistic it does not matter how capable  you may seem, you will be vulnerable.

PATRICIA: That we exist at all!

Our sense of justice and fairness gets seen as just being stubborn or "mouthy." Our need for things to be fair and even can make for intensely rigid thinking. It can get us into bad situations for which we don't have the skills to get out of. Also, our perceived "maturity" is likely due to working so hard to blend in -- but we are not as mature as it might appear. 



SIOBHAN: I think the most overlooked trait might be that it is assumed girls are more socially competent than they are. Also any academic difficulties are not as obvious.

CHRISTINE: I think that one of the biggest things that has been missed for the entirety of my life has been what I call "the chameleon effect." I was raised, as many women are, to blend in. To be a lady. To not make waves. The result of that has been a fairly well-honed skill set of changing myself to the social situation to blend in, and to (attempt to) be like the others present.

"But you make eye contact!" Ugh. Yes. Yes I do. It's not without a tremendous amount of effort, it was hammered into me as a child, and it's incredibly uncomfortable. Most autistic women I've met seem to have more eye contact frequency than that of autistic males. I think that might go hand-in-hand with the societal pressure for women to fit in, and not rock any boats.

I've had to tell many people if they took a trip inside my brain, they'd see my autism full-force, and not question my diagnosis again. Rigidity to rules was dismissed as, "playing mommy," or "being a good girl."

EMILY: Exposure anxiety. Not being able to process or to act under scrutiny. We need mental and physical privacy. We may need time and space to figure things out for ourselves -- that others don't take it for granted we need, or are entitled to.

A lot of "shyness" or noncompliance or reticence to try things -- particularly while we're being graded or judged on them -- is that we know that we don’t know what we need to know. We know when our abilities don't match the demands being placed on us.

And a lot of forms of attention that a parent or teacher might presume are positive, can be torment. (I have avoided doing things conspicuously in order to avoid being praised for them.)

Emotional sensitivity: we can feel a lot more than we might be able to tell you about, identify, or explain. And more than it might look like we do.

We can also look very emotionally vulnerable or volatile. Little things can mean a lot to us. Sensory issues can have emotional effects. This can be very confusing and hard when paired with Alexithymia, which is the inability to identify or verbalize emotions, or to distinguish between emotions and physical sensations. A girl could be going through a lot and not know any way to tell or show it to you. Just because she behaves well and gets good grades doesn't mean she's not having trouble. Quiet girls may be sublimating a lot.

Fairness is often extremely important to us. We can tell the difference between when life just isn't fair, and when adults are making life unfair. That's a lot of what erodes our trust in adults and authority figures.

Compare and contrast: What sucks more, in your opinion: being misdiagnosed or being undiagnosed

?

CHRISTINE: I was only ever diagnosed with anxiety (which I do have), and depression (which I don’t have). It was more difficult having to do my own research, and advocate, and fight for professionals to acknowledge, and take me seriously. Constantly doubting yourself, your gut, and your capable research, while questioning your sanity takes a toll on one's confidence, and trust in yourself. Ah, the sweet relief when you're finally validated, though.

Being undiagnosed (and unaware) is its own mess of suck. It was a constant barrage of wondering why I didn’t fit in, why relationships were so difficult for me, why I felt so profoundly different, and wondering how to fix myself to be more normal without knowing where I’d even start. Self-diagnosing, and later formal diagnosis has kicked off a process of self-acceptance, understanding, and allowing myself grace, which I had generally previously denied myself.

PATRICIA: I've been both so let me think about this. 



Misdiagnosis left me vulnerable to the protocols and biases and stigma of, in my case, manic depression/bipolar. So there was no real chance to see that I wasn't bipolar because that's the world I got sucked into.

Undiagnosed I would have been able to explore for myself. But I felt tied to the diagnosis I had and even though my heart knew it wasn't right, my rigid thinking made me cling to it for far too long. So for me, I would have preferred the undiagnosed path. But I got to my autism diagnosis eventually.

SIOBHAN: Both suck equally. If you are misdiagnosed you may have to deal with the added stigma of a mental illness that you don't even have. You are also possibly medicated for problems that you don't need. There is a chance of being treated for a co-occuring issue without getting supports.
If you are undiagnosed you have to deal with the pain of not knowing why you are different from everyone else and why you don't seem to know the unwritten rules of being a teen girl (or a young woman).

There is the additional complication that while Native American culture has always understood and accepted its autistic members, girls included, it is difficult for people of color, girls especially, to get formal diagnoses. Our (Nez Perce) view on autism as a tribe is that it is simply how some people are. And why try to force a fantastic bead worker to go hunt bears?

EMILY: It's hard to say that one sucks more. They suck differently.

One means not being believed about anything, and the other means being told that the source of all of your problems is something that it isn't, which can lead you down a lot of dead ends in trying to make things better. Having no help vs. having "help" that's actively counterproductive or wrong foisted on you.

Accepting treatment for something that isn’t wrong can be really alienating and even worsen your mental state of being. I can barely even talk about being in Cognitive Behavioral Therapy, it was so damaging.

OLLEY: I'd say both on equal parts the non diagnosis means you can't access the support you need , the misdiagnosis means you are accessing support /medications you don't need.

Also, as autistic females often adapt to the role they need to be to fit in, they may indirectly "chameleon" into the traits of the "disorder" they have been misdiagnosed with, making their autism that much harder to be seen in a clinical setting when/if the chance arises. Actually I retract what I said about them being both awful on equal parts -- a misdiagnosis is much harder than a missed diagnosis.

What, in your experience, are some of the most dangerous situations autistic girls can get into, that both they and non-autistic people don't always recognize? 




SIOBHAN: Dangerous situations for young autistic women ... many. If she is a woman of color she has a high risk of being murdered or "accidentally" shot by law enforcement. High chance of not understanding a situation where she is being manipulated for sex, rape, marriage fraud, scams that put her life in danger.

CHRISTINE: Any sort of situation where there wouldn't be a responsible and educated person who would advocate for them.

OLLEY: If you struggle to keep up with other people's agendas, needs, wants, or expectations and rely on your own thought process you are easy prey to those who do not mean you well. Abuse then is often hard to report, as you struggle to understand how to report/seek help -- or in fact that asking for help has advantageous consequences. Theory of mind, or understanding that others do not see the world as you do, should be taught in every school where autistic children attend. It is as unjust as Braille or Sign Language not being taught to those who need it.

EMILY: I think one of the biggest dangers to autistic girls is being trained out of trusting our own sense of danger.

PATRICIA: Oh, this is a painful one to answer because it comes with so much unfortunate experience. 
We are naïve and have a huge sense of fairness and justice -- this is a terrible combination. I've also noticed, and from my own experience, that because I have trouble relating to peers I spend time with people much older or younger than I am. This can lead to very abusive situations where the power dynamic is just too uneven -- we can't usually see that though. Too trusting. We take people at face value.



I've found that our sense of social justice can get us into a lot of trouble. When I am focused on "this is right and that is wrong," I can't always see the possible dangers that lie ahead.
When we are young and building scripts we just don't have the experiences to draw on to protect ourselves as we need to. So while my family recognized I wanted to make the world right and supported my advocacy, not knowing I was autistic left me open to being arrested in situations I just should not have been in.

We may seem far more mature than we are. 

The often bullying and sexual, emotional, physical abuse and trauma that comes with being an autistic child leads to places like sex work and drug addiction. With barely any services in places for neurotypical people, the ones in places just do not serve us. I approach issues like sex for example, very differently that my neurotypical counterparts.

My literalness once known, is easily exploited. Especially when you're younger. In grade five another kid asked me to pull my shirt up in the middle of class. I did. I got in a lot of trouble. The other kid, did not. I was supposed to "know better" but here's the thing -- if you don't, then you don't. So we are punished which leads to more confusion and internalized hate. 



How could parents or teachers or friends have made your life easier when you were growing up?

PATRICIA: Believing me, and allowing me to set boundaries and respect the boundaries. They could have believed me when I said, “I can't,” “I don't know,” or “I can't understand.” Just accepting my limitations would have made such a difference. I spent so much time trying and failing to do things in ways others wanted -- but when I was allowed to try differently, or did it in a way that worked for me, it could be accomplished. Maybe not their way, but mine. My way is valid also.

SIOBHAN: Some ways teachers, parents peers could have done to make things easier? Understand that the struggles are REAL. That a student really doesn’t understand and isn’t just being lazy. That no, the social rules really don’t make sense and maybe people actually DON’T know what they did wrong.

CHRISTINE: It would have been amazing for me if anyone had recognized the signs, and addressed them, instead of writing them off as, “shy, quiet, nerdy, loner.” Being taken aside, and having potential social encounters discussed, and expected responses, or social stories would have been a game changer for me. Not so much that it would have changed me at all, but it would have greatly enhanced my toolkit, so perhaps I would have understood more of the extremely complicated dynamics that were going on around me, and be able to put more energy into other things, besides being confused and frustrated. 



Another thing that would have helped is support in understanding that the world is not black and white. I was raised to see things as good versus bad, with no room for gray area. As a result, I was very rigid (and quite frankly obnoxious, as I reflect on this) about rules, and sticking to the rules. Be they social situations, rules of conduct at school, or instructions, I was sticking to the rules and demanding those around me stick to them as well. It did not make me a popular person!

EMILY: Believe us when we say that we can’t do something, or it’s too hard. There is no standard deadline for being able to do everything our non-autistic peers can. We don’t have to be able to do all the same things at the same time as everyone else, in order to succeed as adults.

It can’t be our job to make everyone else comfortable or happy. It can’t be our job to mediate between parents and other authority figures. Don’t put us in no-win situations. Back us up when we advocate for ourselves.

Don’t lie to us or mislead us about social things. We aren’t just like everyone else; don’t tell us we are. Things don’t work for us just like they do for everyone else; don’t pretend that they do. Other kids do realize we’re different; don’t pretend they don’t. When we feel left out or disliked or mistreated, don’t tell us that that just can’t be true. It very much can.

Asking for help is something that’s already hard for us; don’t set a precedent that we won’t be believed or trusted when we do it.

OLLEY: Looking back at my teens in the early 1990s, there was so little awareness of, or support for, autistic girls that I really could not have expected any help at all. (Things are thankfully much different now.) When I saw a psychologist at age fourteen, I was told I was "lazy" because I liked to stay alone for a long time, was acting "oddly," and refused to attend school.

Lack of professional understanding had traumatic consequences for me, as a teen. I was moved to different schools, was pregnant at age fifteen, and got in very unsafe relationships with older people. Teachers remarked how I went from a straight A student to a tearaway in my first year of secondary school -- but it was because I just couldn’t cope.

I was a loud rebel who constantly tried to make people laugh and was often picked on, except I didn’t actually realise at the time I was being mocked; I thought it was just being part of the gang.

My parents did the best they could; I owe them so much. I am so happy that things have worked out as well as they have for me and my family, and even more happy to dedicate a huge chunk of my life to ensuring other young girls don’t repeat my experiences.

Who are good role models for autistic girls (in real life, or characters), in your opinion? Especially for girls who aren't diagnosed or labeled, and need to know about someone like them? 



SIOBHAN: Good role models: IRL other autistic women. It seems like many of us are around, and we are in most fields.

Dana Scully of The X-Files
[image: Young professionally dressed white woman
with chin-length red hair.]
EMILY: Dana Scully (of The X-Files) meant so much to me growing up. She’s never identified as autistic in the show, but so many neurodivergent women I’ve known since then have had a huge affinity for her. She was beautiful and feminine, and yet so different from any other woman we’d ever seen in the media. She was unabashedly brilliant and brave and respected in her field, but she never seemed to fit in with other women, either. I think it was a huge comfort for girls who didn’t know where we fit to think that we could be somebody like Scully, even if we grew up and never felt like we fit in anywhere.

Sadly, I come up short when I try to think of real-life women who have been role models for me as an autistic person. Partly because I felt so disconnected from other girls and women growing up, most of my own role models have been men, and most still are. And I don’t think it’s because there aren’t autistic and neurodivergent women living amazing lives, but because we’ve been denied the language and the opportunity to know each other in so many ways -- because autistic people are so marginalized and badly understood, and because the work of women has been so historically undervalued.

CHRISTINE: Aside from the ladies I’ve been introduced to post-"Bingo"? Amythest Schaber, Temple Grandin, Amy Farrah Fowler of The Big Bang Theory. This question is tough, as I am newer on this journey.

OLLEY: This is where Tania Marshall’s Aspiengirl/woman books are very handy: there is a section of of woman who are proudly "out" as autistic themselves, with bios and advice.

Fictional characters seem to be too few and too far between, however I quite love the 1980s Darryl
Darryl Hannah in the movie Splash
[image: White woman with long blonde hair, underwater.]
Hannah Film Splash. Daryl Hannah is of course Autistic, also her portrayal of a mermaid learning to talk by copying the TV in shops resonates very well with me, as I often use movie quotes to get by!

PATRICIA: The Danish/Swedish series The Bridge (Bron/Broen) has a lead female who is an autistic detective. I started watching it not long after I was diagnosed four years ago, and I found the portrayal very realistic and relatable.

And this may sound silly -- but Alice from Alice in Wonderland. As a young undiagnosed autistic girl, I related to her so much. I could write an entire book about Alice and me and Autism and self-acceptance. To this day “down the rabbit hole” is a script of mine. I often try and relate my experiences through that story to others. How nothing is as it seems. My body is too big! Now too small! Everything seems so strange! I'm now envisioning writing a book called “Alice and Me.”

And because I am over 45, I must mention Temple [Grandin]. Because for many autistic people, she is a role model -- or at the very least a bridge between the worlds.

What do you consider some of the best resources for autistic girls, and their families?

EMILY: Autism Women’s Network (I am a moderator for the Facebook page and am project coordinating a forthcoming anthology with them) is something I see becoming a really great community that talks about a comprehensive range of issues affecting autistic girls and women. But in a lot of ways, there’s just no substitute for having a friend close by who’s really on the same wavelength as you. The best thing is when being around another person is just effortless.

PATRICIA: I follow Amythest Schaber on YouTube -- they're great! And Maxfield Sparrow (formerly Sparrow Rose Jones) of Unstrange Mind is a treasure

. I've gotten a lot from Judy Endow and Samantha Craft. I also hand this link out to girls who come to me:
 
http://everydayaspergers.com/2012/03/31/day-62-females-with-aspergers-syndrome-nonofficial-checklist/

There is a serious lack of resources especially for autistic girls/women. I'm aiming to become a resource. Mostly that's how it's been for me -- seeking out my peers and asking a lot of questions.

CHRISTINE: This is an area where I’m still working on building my resource pool. I learned a lot from Bill Nason’s Autism Discussion Page after my son was first diagnosed. The cover photo reads “Helping your child feel, ‘safe, accepted, and competent,’” and it was the first source I found in the boatloads of standard “new diagnosis recommendations and advice” influx of information that felt right to me. His approach and teachings about Autism felt like a breath of fresh air after mostly only finding readings about cures -- it was the first time my gut felt at ease in reading Autism literature.

Shortly thereafter, I found Thinking Person’s Guide to Autism, and felt another wave of relief, and validation that I was not alone in my very new perception and understanding of Autism. Next was Ask an Autistic by Amythest Schaber.

Recently, after my ignorant, oblivious, and disastrous first attempt at writing, I was mercifully given a life raft by some amazing Autistic women and advocates, from whom I’ve been soaking up tons of information.

SIOBHAN: I have yet to find good resources for girls specifically. Thinking Persons Guide is good, as are blogs written by autistic women.

OLLEY: My favorites personally for my daughters and myself are the website Thinking persons guide to Autism , Tania Marshalls Aspiengirl/woman books, anything Sarah Hendrix writes too!

Of course without a shadow of doubt the world class professionals at the Lorna Wing Centre in Bromley, UK. Dr. Judith Gould and her team who are always two steps ahead in anything they practice.

I quite like my book Why Aren’t Normal People Normal, too (insert winky face here) -- it’s more of a friendly letter /short phone call from someone who is in same boat.

I have also really enjoyed Rudy Simone’s website Help4Aspergers, and the chart on the site of traits of autistic females was really helpful during the time I was undiagnosed myself.

What extra (or continuing) supports do you think are important for autistic girls as they become adult women, in terms of setting them up to become successful (by their own definitions)?

CHRISTINE: Personally, I think I would have benefited from extensive education on social situations. Not just etiquette and manners, but actual potential real life social situations and relationship dynamics. I don’t think it would have changed me at all, but I do think it would have really bolstered my life toolkit to be able to reference those lessons, and be able to better understand what was going on in the situation beyond the surface of the interactions. I function very analytically, and the more pieces I have that make up the whole, the more I feel empowered, and capable of participating and engaging.

SIOBHAN: We still need access to training and independent living skills. We need social groups geared towards fun activities, so we don’t isolate. We need assistance dealing with medical and housing situations. We need real therapy.

I would also have benefited from opportunities to meet other spectrumites like myself. Having the opportunity to participate in a concrete experience that allows me to see that I am not alone -- that there are others I can identify with, and who identify with me -- has been profoundly helpful since my adult diagnosis. It has allowed for a lot of self-discovery, understanding, and a sense of connectedness to the world that I have not often felt.

Finally, a life advocate of sorts would be invaluable. Sure, I can do higher level math, and science, but I struggle seriously with the executive functioning skills required to plan for daily meals, or home upkeep that doesn’t leave me scrambling at the last minute, or overwhelmed and spinning my wheels when I set out to accomplish something.

EMILY: I wish there were easy to access support for things like bureaucracy -- and paperwork-navigating, appointment-making, coordinating medical care, applying for benefits, etc., for people who don’t necessarily need full-time or intensive support but for whom a fairly small amount of support could really help them keep their lives together.

PATRICIA: I'd like to see supports that would bring us more into each other’s lives so we can learn from each other. For instance – I am almost 47 and in a deeply transitional time with hormones as I enter menopause. Though peers my age are some help, I'm quite lost in knowing what to expect as my autistic body changes. It's not the same for us. I've reached out to dozens and dozens of women my age and while there are some commonalities – I need the support of other Spectrum women experiencing this.

Also for issues like what to do when long-term romantic relationships end. Again, there is overlap with the non-autistic experience, but I feel that autistic women’s process is a lot different. So the supports I need to be successful by my own definition are things like access to affordable housing, health care that focuses as much on the mental as the physical, and education. A support system that recognizes we don't all have the same needs. I need supports that are more typical to my brain wiring. So that I can find more accurate reflections of myself there. It's so empowering to find a positive reflections of self -- so those supports would lead to great success, for me.

OLLEY: Support is always needed, because autism doesn’t go away -- it’s a life-long condition.

I’d say the most vital requirement is a safe person, maybe a parent/sister/old friend? Someone who can be a sort of social guide, help you assess relationships/work/motherhood from a differing perspective, and give you honest advice if you need it. (Thanks to my mum for being this person.)

----

An abridged version of this interview was originally posted at BlogHer.com.

Thursday, April 21, 2016

Sometimes Accommodations Aren't Enough: Autism and Anxiety

TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today, John Elder Robison talks about why accommodation is important, yet may not be enough to help autistic people like him with co-occuring conditions such as anxiety.

John Elder Robison
jerobison.blogspot.com

With April being Autism month, the folks at TPGA asked me to write about accommodations. How about anxiety, Shannon asked? Foolishly, I agreed. After thinking about the topic for hours, till smoke dribbled from my ears, I cannot conceive of any accommodation I could request around my anxiety.

Photo © John Elder Robison
[Image: Close up of water running over a rock in a stream.]
For me, anxiety is one of the most disabling aspects of autism, and it’s with me -- at least at a low level -- most all the time. I am almost never relaxed. Life is a series of worries, some more serious than others. My next article is due. The taxes are due. The kids are in trouble. I am in trouble.

There are times I’m totally brought to a halt, and when that happens, I turn to anti-anxiety pills. To put this in perspective, I turn to medicine about a dozen times a year.

Medication or Transcranial Magnetic Stimulation (TMS) are the only things I have found that unwind my anxiety and circular thinking to the point that I can restart, and move forward with life. My only experiences with TMS were in the context of research studies. That leaves the medication as the only help in daily life, to the extent that it works.

I have to use anxiety meds very sparingly, because they are addictive, and they lose their effect over time.

Anxiety sucks.

Sometimes we can reduce our stress by changing the environment. Natural light, a quiet space, and fresh air are often soothing. For a person who’s suffering from sensory overload, such things may be enough. For a person who is anxious over the responsibilities and events of life, those reliefs are but a momentary respite.

My own anxiety has gotten markedly worse in the past decade. Last week I was at a conference where two autistic folks my age (Dena Gassner and Liane Holliday Willey) described similar escalations of anxiety in their own lives. My older friends featured in my book Switched On also share that experience. Perhaps this is an aspect of autistic aging. If so, I would not doubt that it’s a contributor to increased mortality for autistic adults.

Ten years ago, I could generally “fix myself” with fresh air and exercise. Those things still help, but they are no longer enough. More and more, I feel that life is overwhelming me. At an age where people say I should be relaxed and triumphant, I feel defeated. Not all the time but often.

Photo © John Elder Robison
[Image: Creek running through a forest]
This struggle is not a matter that can be solved solely by acceptance and social accommodation. Those are great things, to be sure, but they cannot fully address the issues of anxiety, depression, tremors, and seizures that so many autistics (like me) live with. Those co-occurring aspects of autism need to be addressed through ongoing medical research.

One of the most understudied areas in autism research is the relationship of the core of autism to these many co-occurring conditions. Studies show that most autistic people have one or more co-occurring conditions, and with such a strong association it is not really clear if they are truly co-occurring independent issues, or if they are interwoven at a low level. 

These other aspects of autism, for all practical purposes, have no good side. They cause suffering, pure and simple. I am aware that as a “total human” I possess a mix of gifts and exceptionalities. And I attribute many to autism. There is no exceptional side to anxiety. For me, that and the other traits noted are part of autism’s dark side -- even for bright and outwardly successful people like me.

It’s my hope that we will find better tools to address anxiety, because for many of us, anxiety is devastating. I have little doubt that anxiety and depression lie at the heart of many if not most autistic suicides; a thing we are at least nine times more likely to die from than the general public. In my service on government autism committees, the risk of suicide is one I am always mindful of, when we discuss the need for research into autistic mortality and adult and teen autism issues.

In my recent book Switched On I wrote of the promise of emerging technologies like TMS to treat formerly intractable disorders of the mind, anxiety and depression being two of those conditions. My book talked about my participation in experiments designed to improve perception of emotions, which is still in the experimental phase. That’s not a therapy you can seek out -- yet. However TMS is FDA cleared, and is widely available, as a treatment for depression and anxiety.

Much of the autism dialogue today revolves around acceptance, which is important. But it's also important to remember that acceptance as a concept is not mutually exclusive with treating the most disabling aspects of autism. While understanding and accommodating autistic needs goes a long way, many of the difficulties autistic people experience cry out for remediation, which existing medical techniques have yet to successfully address.

Photo © John Elder Robison
[Image: Misty wooded clearing]
It’s something to think about. Particularly with respect to the person next to you. She may look just like you from outside, even as she feels she is being eaten alive from within. That is how anxiety is.  

Say no to any treatment you want, for yourself. But be careful about standing in the way of others delivering help to those who wish it. Maybe that’s all the accommodation the average person can make, for situations like mine.

Wednesday, April 20, 2016

Sensory Access Needs Are Human Rights

TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today we are featuring a Q & A with Sara M. Acevedo, discussing how her well being depends significantly on not being exposed to scented products, yet how infrequently those accessibility rights and accommodation needs are taken seriously, viewed respectfully -- or met.

Paris Plages (010) - 21Jul-21Aug08, Paris (France)
Photo © Philippe Leroyer.
Creative Commons License.
[Image: Black-and-white photo of a ponytailed
white woman in profile, inside a mist/gas cloud.]
Sara M. Acevedo sacevedoespinal.wix.com/neurowitching

TPGA: When you need to enter a new room or meet new people, what are some factors you have to worry about?

Sara M. Acevedo: Before attending an event, coming into a new meeting space, or a new social space, there are some things that are not simply relevant, but actually vital for me to consider: Among other external factors, my priority remains the exposure to chemical and so-called ‘natural’ scented products and fragrances (including perfumes, body lotions, deodorants, and hair products among others), as they represent a hazard to my overall well being. In this sense, both the physical/physiological and the psychological/ emotional aspects of my being are impacted negatively by the exposure to scented products.

At the physical level, exposure to these products causes me insufferable migraines, as well as nausea, vomiting and dizziness.

At the psychological and emotional levels, I feel debilitated and exhausted from constantly being forced into positions where I either have to expose and justify my sensory needs, or to educate my non-disabled peers on the concrete causes and effects of chemically induced ‘poisoning.’ By the same token, I feel isolated as my efforts often result in my peers labeling my sensory experience as ‘petty’ or my needs as ‘inconsequential.’

The truth is that for many people, short-term exposure to chemical products represents a tremendous health hazard due to low to high grades of poisoning resulting in skin rashes, eye irritation, severe migraines, nausea, and vomiting, as well as asthma attacks and even respiratory arrest. An array of scientific studies demonstrates that, in most cases, the root cause of these responses to chemical-product poisoning is primarily neurological, and that sensory accommodations are as valid as other forms of access accommodations.

Having said this, I argue that no amount of scientific data should trump embodied testimonies coming from people in our various disability communities -- our sensory access needs and accommodations are not acts of good faith or favors, they are our rights!

TPGA: What can happen to you, if you aren't accommodated?

S.A.: Chronic migraines are a part of my lived experience. I have lived with migraines for as long as I can remember -- all the women in my family suffer from severe pain caused by the chronic inflammation of the hundreds of small blood vessels in the brain.

Chemical scents and fragrances are some of the primary triggers of migraines for me. The root cause of my migraines is indeed neurological. In the past, denial or delay in accommodations around my sensory needs has resulted in prolonged migraine crises. Long-term migraines can and do disable my executive as well as cognitive functions, causing me to miss consecutive days of work and school. In addition, my emotional well being is also compromised due to the feelings of extreme vulnerability and frustration caused by consecutive days of severe pain. From a capitalist/productivity lens, my absence cause little to no inconvenience to an employer; from a human dignity lens, I am left to suffer the material consequences of a social world that remains unaccepting of our embodied experiences as valid and legitimate manifestations of human difference.

If my coworkers/classmates cover themselves in perfumes and colognes and or spray their offices with air ‘fresheners,’ or attend enclosed spaces wearing scented body lotions/deodorants without care for the concrete impact that those products have on my overall well being, I am likely to feel (and have felt) unwelcomed and isolated from my own work space.

If on the other hand, my employer places obstacles and barriers to something as simple as removing high fluorescent lighting sitting directly above my desk (because it represents a ‘safety hazard’) while simultaneously not allowing me to have a warm light system instead (as simple as a standing lamp), I am left with the message that my not only my presence is inconvenient, but also that my body is a liability.

TPGA: When you tell people about the accommodations you need, are they usually respectful?

S.A.: There is usually a sense of complete ignorance around what accommodations unrelated to wheelchair access (for instance) are also covered under ADA, the Americans With Disabilities Act.  I am often addressed with questions touching on why I need those accommodations (in terms of ‘diagnosis’ or a medically certified version of my lived experience), as opposed to questions around how external factors such as fluorescent lighting or scents/fragrances affect my physical and emotional well being as a valued member of the community.

Others simply show ‘compassionate’ looks and/or words, only to return heavily scented the next day. I can certainly attest to the lack of care/interest/knowledge around these issues within able-bodied spaces. And, again, way outside the realm of medical diagnosis, our embodied experiences deserve to be valued and respected as they are and for what they are -- as we voice them.

TPGA: What are some simple ways to make more environments not just tolerable but comfortable for you?

S.A.: I wish there was a fabulously mysterious way to simply shake my nose and de-scent everyone as I enter public spaces -- Boom, neuromagic! This is especially so within enclosed spaces such as BART, where my experience of discomfort is much more heightened.

I think that to bring true acceptance around invisible experiences such as sensory sensitivities and needs, multiple voices and perspectives need to join in the conversation. Collective critical engagement with and action around these issues can lead to concrete changes within the spaces that we inhabit in our everyday. How much more could I accomplish in this fight, if my voice were not the only one? If at each turn, someone else decided to show up unscented to a shared space? If at each turn, someone confronted the use of heavy scents and created mindfulness about entering elevators, and other enclosed spaces? If at each turn, someone would show up for people who remain quiet about their identities and shared a bit of information about the effects of chemical products in libraries, for instance? What would happen if we started by reflecting on how our own individual hygiene practices can potentially affect others in the train, on the bus, in a crowded art gallery, at the office?

I think that ‘tolerance’ is a disingenuous way of engaging with the magic that is difference -- it limits us to think that things ought to remain as they are, for there would otherwise be ‘chaos’--  as if there were no room for the wonderful world of the unfolding within chaos. I think that feeling comfortable for me includes being recognized, being validated, and being valued fully for the person that I am.

Currently, I often continue to be received as an inconvenience within able-bodied spaces. I am convinced that as long as the dominant majority continues to see different forms of embodiment as a liability or as a threat to able-bodied comfort, things won’t start shifting. I will not feel comfortable, even if I am accommodated ‘because the law requires it so,’ until my sensory experience is valid and accepted, as opposed to systematically challenged and devalued.

While I believe that policy is a necessary form of both conceptualizing and concretizing collective struggles for inclusion, access, and full community participation -- my senses also appeal to the very radical idea that different forms of embodiment and experiences are to be valued and amplified without the official boundaries of social institutions -- as an act of mutual recognition and respect.

Tuesday, April 19, 2016

No (Wo)Man's Land: Being an Autistic Mother of an Autistic Child

TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today's story is from Christine Langager, about being an autistic parent of an autistic child -- and the frustration of often being excluded from autistic and autism-and-parenting communities when by definition one belongs to both.

Christine Langager

Photo © Christine Langager
[image: Selfie of white woman with long braided light brown hair]

As a child, I never fit in
Always on the fringe, always looking in

As an adult, it has always been more of the same
Never fully clicking, but making my way

I met the love of my life, and finally felt that I had a place to belong
We started our family, and I looked forward to more ways to connect

As our first son got older, his intensity was clear
Play date invitations dwindled, advice was given freely and condescendingly

But wait! We all have children here, I thought
Shouldn't this give us an automatic bond?

My child didn't fit, and neither did I
My boy and I were close as can be
We did things together, and I started to read and research

Asperger's seemed like a good fit, and the neuropsych agreed
He had his diagnosis, and so much made more sense

As he got older, we became more excluded
I started to look for connection with other parents of Autistics
But our takes on Autism didn't often line up

I never viewed him as a tragedy, or a burden
Just who he is, and not something to be extinguished, but celebrated and supported

I don't go here, I thought
Again, I don't fit
How could that be? We're Autism parents!

Filling out the mountains of forms and evaluations
I noticed that many of the boxes checked for my son
Applied to me as well

Photo © Christine Langager
[image: Two lane blacktop road through dense woods]
One of his docs suggested an eval for me
I got the official stamp
I'm now a card-carrying, official Autistic!

Everything makes sense now!
My childhood, my relationships, how I tick. Hurray!

Surely I have a community of Autistic adults to fit in with
Now that I'm official!

But wait.

I'm not Autistic "enough" to fit in
I don't hate, or view "autism parents" as the enemies by default

I don't go here either.

So here I sit: Autistic Autism Mom
Tiptoeing my way around the periphery of two
Too often polarized communities

Autistic woman, and mother to an Autistic child
In No Wo(Man's) Land

Photo © Christine Langager
[image: Foggy ocean coast, with trees in background]

Monday, April 18, 2016

Headphones As Accommodations: My Letter to Bose

Ain't no beats 13/365
Photo: Rafiq Sarlie. Creative Commons license.
[Image: Headshot of olive-skinned man with eyes closed,
seen from the side,
wearing a dark knitted cap and blue headphones.]
TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today's story is from Tito Martin-Nemtin, about the difference his noise-cancelling headphones make in his ability to simply be in the outside world, without being completely overwhelmed. This is also Martin-Nemtin's first foray into public writing.

Tito Martin-Nemtin

Every time I think about my noise-cancelling headphones, I consider sending Bose a letter.

The closest I come to sending that letter is after I call Bose about a problem with my headphones -- ideally, before the year-long warranty on them expires. I call when their internal technology breaks down, causing feedback in one of the ears; or a loosening in the plastic joints that causes intermittent clicking. More often than not, they’ll ask me to send in my pair, and send me back a replacement pair. Once, they gave me a replacement pair on the basis of cosmetic damage -- and I was only asking for a new detachable headphone jack, having lost all of mine. (Result: They sent me a new pair of headphones, with TWO headphone jacks -- one with a volume control to use with an iPhone!)

Thinking about Bose gives me conflicted thoughts. As a left-leaning Canadian with socialist impulses, I’ve learned to maintain a healthy distrust for private corporations. Companies that exist for profit often disregard the need for healthy customer relations after they grow to a certain size, thinking only of how they can gain more money. Indeed, Bose is not a company I feel represents me as an individual -- I keenly remember their name included in a list of corporate endorsements for the internet neutrality-destroying political bill SOPA (Stop Online Piracy Act). I remember the commercials I saw during a visit to England, advertising their latest products, with those trendy, young Millennial faces, sporting cutting-edge technology with customizable, cosmetic bits: Hear music clearer than ever!

But as a company, Bose is better than most. And in the end, none of these socio-political questions really matter to me; what matters is the product, the Bose QuietComfort 15 headphones that have become a permanent addition to my outdoor wear.

How the headphones work: You put them on, then you push a button on the right side. There’s an audible click, and suddenly all background noises -- the buzzing of a fan, the hum of a computer screen, the rumbling of an engine -- quiet to a whisper. The white noise generators inside the headphones cancel out ambient noise, and the padding is insulated enough that you don’t hear the persistent shhhhhh of the feedback within the earphones.

For someone like me -- so sensitive to noise that I can actually perceive the bio-mechanical sounds of my own ears ringing aloud -- my headphones are an incredible blessing.

I often show my headphones off to other people, both autistic and non-autistic -- who frequently laugh when I mention that the headphone cases come with distributable product cards, containing information about Bose stores and websites. The conceit of turning a customer into an advertiser! But in reality, all it takes is putting on the headphones for a person to notice how much noise is all around us, and how much of that sound can be filtered out. How often we dwell in places with overwhelming amounts of sensory information, and how little we think about how it affects us!

If I had to summarize what it’s like to live with Asperger’s, I’d say it’s like this: Living with Asperger’s is like being allergic to the outside world. Acute sensory hypersensitivity is a common part of the spectrum. So the headphones aren’t just for stress relief, or a buffer against sound: They actually extend the amount of time I can be outside, before I put myself at risk. The headphones allow me to sit on a bus without irritation, brave loud sirens without screaming in pain, endure musical jingles that never turn off. They relieve me of my "allergies."

This is why I think often about writing Bose a letter: their headphones have changed my life. But I also ponder how much I’ve changed my life to better accommodate their product: I’ve invested in a rotating series of rechargeable AAA batteries to save money, along with a battery charger plugged into the wall -- and I carry a spare battery with me at all times, in case the one in the headphones needs changing. I include the headphones in my list of outdoor necessities: Keys, wallet, phone, headphones -- and sometimes a detachable cord so I can listen to music. The cord is not always necessary, but music is calming and therapeutic.

Thinking about those trendy young faces in that advertisement, with their wicked-cool tech and their perfect skin, exemplifying consumer culture as they parade the latest in Bose listening devices, I think about how far away from that demographic I am: A diagnosed autistic, so sensitive to noise that his headphones are all that keep a bad day from becoming worse.

I want my demographic to be represented. I want everyone, especially parents, and kids on the spectrum like myself, to know that there’s a way to cut out the noise, and make living in our society much more bearable. I feel like Bose the company -- with its fantastic warranty program, with the emphasis on customer satisfaction, with a keen interest on marketing their products -- needs to recognize how many people are exactly like me, how many people go on the bus and stick their fingers in their ears, and shut their eyes as hard as they can, and pray that they can hold it together just a little longer, that they can bear all the noise, until they can go home, and be safe, and not have a freak out on the bus in front of complete strangers who will look down with fear and pity as the anxiety caves me in, transforms me into a subhuman, crying, moaning wreck incoherently muttering like a "madman" and unable to control the outward expressions of my body.

In summary: I want them to know that they can help more people like me. 

So maybe I’ll write that letter, just like I’m writing this one. And as much as it makes me feel like a shill, maybe I will keep showing their headphones to other people.  Because there is no other way to make people who aren’t autistic understand what I need to survive their world.