Monday, July 30, 2012

Recognizing Ableist Language in the Autism and Autistic Communities

Lydia Brown
autistichoya.blogspot.com

It's everywhere.
"Autism isn't mental illness. We're not like those people."

"It wasn't an autistic person who would commit mass murder. Only people with actual mental illness, like psychopaths or schizophrenics do that kind of thing."

"Those ideas are insane!"

"Autism Speaks's idea of representing Autistic people is absolutely crazy."

"People who want to give their kids bleach enemas are just nuts. Their ideas are nuts."
It comes not merely from Autistics and non-Autistic parents and professionals and researchers but also from Autistics and non-Autistic parents and professionals and researchers who are disability rights advocates and activists.

Take the humble pill, recognize your own strands of ableism, and stop using the ableist language. It is not okay to refer to ideas and people with whom you disagree as 'insane' or 'crazy' or 'nuts' or 'loony,' because those are hateful and hurtful words just as much as the word 'retarded.' 


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Editor's notes:

Disability Scoop also covers this exact topic today.

Lydia wrote and then used crowd sourcing within the disability community to expand the list of ableist (and non-ableist alternatives) terms below. To be clear: the very people whom these terms disparage have helped create this list, and are asking for your help in teaching others not to use this kind of language. When in doubt, consider whether you would use a term in front of someone who could be wounded or take offense.


Blind to ____
Refers to Blind people or people with visual impairments. Acceptable use: Referring to people who are actually Blind or who have visual impairments.

Bound to a wheelchair (wheelchair bound)
Refers to people with physical or mobility disabilities. Acceptable use: Discussing contemporary or historical use of the term.

Confined to a wheelchair
Refers to people with physical or mobility disabilities. Acceptable use: Discussing contemporary or historical use of the term.

Crazy 
Refers to people with mental or psychiatric disabilities. Acceptable use: Discussing contemporary or historical use of the term, or referring to self as language reclamation.

Cretin
Refers to people with intellectual disabilities. Acceptable use: Discussing contemporary or historical use of the term.

Crippled (by ____)
Refers to people with physical or mobility disabilities. Acceptable use: Discussing contemporary or historical use of the term, or referring to self as language reclamation (usually as "crip").

Deaf-Mute
Refers to Deaf people or people with hearing impairments. Acceptable use: Discussing contemporary or historical use of the term.

Deaf to ____
Refers to Deaf people or people with hearing impairments. Acceptable use: Referring to people who are actually Deaf or who have hearing impairments.

Derp (also herp-derp and variations)
Refers to people with intellectual disabilities. Acceptable use: Discussing contemporary or historical use of the term.

Diffability
Can refer to any person with a disability. Acceptable use: Discussing contemporary or historical use of the term.

Differently abled
Can refer to any person with a disability. Acceptable use: Discussing contemporary or historical use of the term.

Dumb
Refers to Deaf people or people with hearing impairments, people with speech impairments, or people with linguistic or communication disorders or disabilities. Discussing contemporary or historical use of the term.

Handicap(ped)
Refers to people with physical or mobility disabilities. Acceptable use: Discussing contemporary or historical use of the term, referring to legal standards that use this term, or referring to self as language reclamation.

Handicapable
Usually refers to people with physical or mobility disabilities, but can also mean any person with a disability. Acceptable use: Discussing contemporary or historical use of the term.

Idiot(ic)
Refers to people with intellectual disabilities. Acceptable use: Discussing contemporary or historical use of the term.

Imbecile
Refers to people with intellectual disabilities. Acceptable use: Discussing contemporary or historical use of the term.

Insane or Insanity
Refers to people with mental or psychiatric disabilities. Acceptable use: Discussing contemporary or historical use of the term, or referring to self as language reclamation.

Invalid
Refers to people with physical or mobility disabilities or chronic health conditions. Acceptable use: Discussing contemporary or historical use of the term, or referring to self as language reclamation.

Lame
Refers to people with physical or mobility disabilities. Acceptable use: Discussing contemporary or historical use of the term.

Loony
Refers to people with mental or psychiatric disabilities. Acceptable use: Discussing contemporary or historical use of the term, or referring to self as language reclamation.

Lunatic
Refers to people with mental or psychiatric disabilities. Acceptable use: Discussing contemporary or historical use of the term, or referring to self as language reclamation.

Madhouse
Refers to an institution housing people with mental or psychiatric disabilities. Acceptable use: Discussing contemporary or historical use of the term.

Mongoloid
Refers to people with intellectual disabilities and specifically Down Syndrome. Acceptable use: Discussing contemporary or historical use of the term.

Moron(ic)
Refers to people with intellectual disabilities. Acceptable use: Discussing contemporary or historical use of the term.

Nuts
Refers to people with mental or psychiatric disabilities. Acceptable use: Discussing contemporary or historical use of the term, or referring to self as language reclamation.

Retard(ed)
Refers to people with intellectual disabilities. Acceptable use: Discussing contemporary or historical use of the term.

Spaz(zed)
Refers to people with cerebral palsy or similar neurological disabilities. Acceptable use: Discussing contemporary or historical use of the term, or referring to self as language reclamation.

Specially Abled
Can refer to any person with a disability. Acceptable use: Discussing contemporary or historical use of the term.

Special Needs
Usually refers to people with learning, intellectual, or developmental disabilities, but can mean any person with a disability. Acceptable use: Discussing contemporary or historical use of the term, or referring to self as language reclamation (usually as "I'm special").

Stupid
Refers to people with intellectual disabilities (i.e. "in a stupor"). Acceptable use: Discussing contemporary or historical use of the term.

Suffers from ____
Can refer to any person with a disability. Acceptable use: Discussing contemporary or historical use of the term.

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Non-ableist language:
Always respect an individual person's preference for self-identification or self-description.

For insulting people's intelligence:
  • Unintelligent
  • Ignorant
  • Ignoramus
  • Asinine
  • Insipid
For describing people with disabilities/disabled people in general:
  • Disabled
  • Has a disability
  • With a disability
  • With a chronic health condition
  • Has a chronic health condition
For describing people on the autism spectrum:
  • On the autism spectrum
  • Autistic
  • With autism [if preferred by individual]
For describing people with intellectual disabilities:
  • With an intellectual disability
  • Has an intellectual disability
  • With a cognitive disability
  • Has a cognitive disability
For describing people with sensory disabilities or impairments:
  • Blind
  • Deaf
  • Hard of hearing
  • With hearing impairment
  • With visual impairment
  • Hearing impaired
  • Visually impaired
For describing people with physical or mobility disabilities:
  • With a physical disability
  • With a mobility disability
  • Uses a wheelchair
  • In a wheelchair
  • Uses crutches
  • Uses a cane
  • Uses a walker
  • Has [specific condition here] 
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This post is based on two essays at autistichoya.blogspot.com.

Friday, July 27, 2012

On Not Passing, Failing to Pass, and Social Skills

Michael Scott Monje Jr.
mmonjejr.blogspot.com

Think Inclusive had a very interesting guest blog about passing, the pressure to do so, and the choice not to last week. I loved it. It was exactly as confrontational as it needed to be, refusing to pull punches about important issues. Around the same time I found that, I also ran across Stuart Duncan's post, where he talks about the issues revolving around "getting fixed" by therapists. As I considered the points being made in both posts, something started to eat at me, and I didn't quite know what my problem was, at least not until I found this article over on Brenda Rothman's Mama Be Good on how the autism narrative gets framed. Then it all fell into place.

Rather than rehashing her argument, I'd like you to just go read it. Go ahead. It doesn't take long.

Okay. Now, here's the thing: If Brenda's right, then the issue of passing vs. not passing (or not trying to pass) is a lot more important than a lot of people think it is. After all, as autistic adults, this is not our issue, it is our life. We're not a social cause. We're not someone else's problem. We're just people who are trying to get along. That's why, for those of us who are privileged enough to pass, the temptation to do so is so great.

I Can Pass

I can do it. I was trained very well to fit in. Even though I was not diagnosed as a child due to the DSM-III making no room for people like me on the spectrum, my behavior was still far enough from "normal" that the school and my doctors told my parents that I was not developing "as expected." My parents then began a relentless program of suppression. I was taught to hold back my urge to stim, to look people in the eye, to use polite language, to follow directions when I got them and not when I wanted to, and to obey authority.

That last part was really important to them. Even if I could not understand why I was being told to behave in a certain way, it guaranteed that I would comply. Thanks to that approach, I passed for years. I even started to have girlfriends on a "normal" schedule, basically by aping the behavior I observed around me in order to:
  1. Have the hope of satisfying my budding sexual urges with an enthusiastic someone.
  2. Avoid seeming so out of place that people started to "wonder" about me.
  3. Have something that other boys my age could identify with that allowed them to open conversations with me (since I didn't play sports or listen to popular music).
Of course, at the time I had no idea that I was passing. I thought that I was just doing my thing, getting along ... and then I graduated from high school. For years afterward, I coasted on what I already knew about social interaction, and as time went by, less and less of it was applicable. By the time I was seriously looking for full-time employment, I had no idea what I was doing. I was frustrated all the time. I felt like I was not in the right body.

If I'm being honest, I have to confess that for years prior to the autism diagnosis, I yo-yo'd between sexual identity crises, questioning my own sanity, and blaming other people for my own problems. I knew that the life I was living was a bad fit, but I could not figure out why. The closest things I could find to an explanation were the coming-out stories of gay friends and bloggers, but I wasn't gay -- I just shared their sense that of living some kind of mad lie.

I know that it's not a good idea to continue to popularize the self-injurious invalid image of autism, but I did have my times where I would go into full-on head-bashing frustration outbursts. Now that I am well and truly past that point in my life, I can't help but notice that there's a recipe to those outbursts:

Suppress everything that you are naturally inclined to do for nervous movements -- all of it. Force yourself to be still. Don't blink. Now, while you're concentrating on doing all that, try to express emotions. There's no room to do so. So, if you let go and let yourself do those nervous things, I'm going to punish you. Suppress those emotions, too, so you won't get punished. Now keep suppressing them. For weeks. For years.

Now, how angry are you?

I'm convinced that my passing drove those behaviors. Now that I've been given access to help and support, I could probably pass without getting angry -- but now, I would not be passing 24 hours a day, even when I'm alone. I could do it, though, because now I know to go off on my own and to do the things that relieve my anxiety and my distress before they escalate.

I'm Not Going to Pass

Even if I can do it, I won't. Partly, I won't do it because it's just too exhausting. For a while after my diagnosis, I continued to let myself drift through work and social situations on my scripts -- to function like I always did. I took my quirks out of a mental box when I got home, and I let myself express them in private. What I noticed was that I could pass as normal, but I could never bridge the gap that allowed me to make friends, to confide my problems to people, or to seek help when I got confused. Every time I failed to understand something, I felt myself confronted with a choice: come out about my condition, or figure it out for myself.

There was a lot that I was able to figure out for myself, but it was a drain on my time, my energy, and my ability to function. If I had been in one of those unfortunate situations where it would have been unsafe to come clean, I could have done it for a while, but it severely decreased my ability to function outside of work. Every day when I came home, I would just fall asleep on the couch or on the floor. I didn't write. I didn't play video games, even. I just came home and ... stopped.

Eventually, I had to face the fact that if I wanted to get anything more out of life than subsistence, I needed to reclaim some of the energy that I was spending on fitting in. I made an inventory of everything that my job actually required in terms of interpersonal skills, communication, and team management. I identified what behaviors I actually needed to embrace in order to do those things, and I just jettisoned the rest. It was a risky proposition, at first. I teach, and I had no idea whether or not my students would be responsive to a disclosure. Hell, I had no idea how the administration would respond. Still, I knew that if I did not disclose, I was not going to survive.

I waited until a new semester started, and then I took the plunge. On the first day of the session, right after I introduced myself and handed out the syllabus, I made this declaration:
"Before it becomes an issue, I just want to let you guys know that I am autistic. I don't get nonverbal cues very often, and sometimes I can't tell what the tone of my own voice is. I'm probably going to remember your name and the subject of your paper before I can identify your face, and if I don't look at you while we talk, it's not because I'm not listening. I want to help you in any way I can, and sometimes that means I have to look out the window or close my eyes so that I can concentrate on understanding what you want me to do to help you. I'll meet with anyone before or after class, I'm on my email from nine a.m. to nine p.m., and I don't mind re-explaining concepts that you have trouble with. You just need to know that I'm going to act weird while I do it."
I was nervous the whole time I said that. I stammered -- something I don't usually do. I waited for questions, and then I went ahead with the syllabus. By the end of class, it occurred to me that if everyone dropped my class, the university would bump me from the teaching schedule and discontinue my salary. I was sure that a few people were going to decide that working with me would be too much trouble.

No one dropped. At least, not right away that day. And the drops I did experience were no more drastic than they always are -- right around the 15-20% mark. (Out of 20 people, at least 3 will drop either due to scheduling conflicts, transferring to a section that meets at a better time, or family issues -- that's just a given for the classes I teach.)

As the semester progressed, I noticed that the students who were having trouble were staying later and asking more questions. After a few weeks, one of them even told me that she didn't like the class at first, but that she had decided not to drop because she had a son with Asperger's and she felt like I would probably work with her family situation more than some of the other teachers might.

Since that semester, I have always disclosed to my students what my situation is, and I have more-or-less used the same spiel each time. Not every group has responded to me as generously as the first group did, but I feel like my disclosure prevents miscommunications that might otherwise hurt the classroom process. I've also made more of an effort to disclose to my supervisors when I feel it's appropriate. While there are some people that I have not directly sat down with and told, it's not something I keep secret, and when I find myself in a situation where I need to disclose, I feel comfortable doing so.

Last year, I took the plunge and started blogging under my own name. Even if there are people at work that I haven't disclosed to directly, it's not like they would be able to read this and not get it.

Why I Don't Pass


I choose to disclose my situation because it makes me more comfortable. If you can't say that, then don't worry: I'm not trying to push everyone to come out. I do believe, though, that the narrative about autism is defined by what is said and what is not said, and I do believe that if you can join the conversation openly, then you should. If you can make the burden of others lighter, or if you can reshape the way others understand the diversity of humanity, it's your job to do so.

That being said, for a lot of us -- it is not safe. There are workplaces out there that are hostile to disability. There are companies that will use "at will" employment to push out misfits. There are myriads of harassments,  both subtle and overt, and if you would put your ability to make a living or your personal safety at risk by living openly as an autistic, then you are right to keep your condition to yourself. I'm not here to judge you, and no one else should be either. I do hope that, for those of you in these kinds of situations, you find a way out so that you can safely contribute to the broader discussion about our needs and issues.

That being said, while I do tell people I'm autistic, and I do tell them what I can and can't understand in terms of social cues and implied meanings, I don't ask for any special accommodations under the Americans with Disabilities Act. I happen to work for an employer that does not hamper my use of headphones when I need to concentrate, that does not require me to be on site unless I'm teaching or holding office hours, and that lets me complete my tasks more-or-less on my own schedule as long as I hit my deadlines. If I did not already have those things, then I might need to ask for accommodations. Since I work for an employer that already meets my needs, though, I don't feel it's necessary to go any further than just telling people "I'm not going to look at you while we talk, but it's because I'm concentrating on what you say and thinking it over."

I know not everybody can avoid asking for accommodations. And I also know that for some employers, these can be part of the issue -- some people view them as "special treatment", and it can breed resentment and misunderstanding. As I said above, if my employer was not already giving me what I need, I'd probably be in trouble. This is why it's important that more of us lend our voices to the discussion, though. If employers see those of us that can work without a lot of extra accommodation, then they won't be as afraid of "the challenge" of working with us. And, most importantly, when they see what we can do, then they might be more inclined to take autistic applicants seriously, even when they do need more services.

That being said, the real reason I don't pass is because I want to feel free to be myself without having to mirror the behavior of the people around me. I need them to know that it's not that I am peeing upon their social conventions from a great height, it's that I don't notice or understand some of those conventions. I want them to know that there's a difference between "autistic" and "unemployable." That's why I also live and die by one principle when I'm working with others.

"Not Passing" Does Not Mean "Not Being Polite"

I can't count the number of times that coming right out and saying "I have no idea what you are asking me for" has actually saved the day for me. I used to be afraid of saying that, because I felt like I was stupid if I couldn't understand something. Also, when I was a kid and my parents asked "Do you understand?", responding with a "no" usually caused them to roll their eyes and then to either explain it again in baby-talk or accuse me of being a smartass. Still, since I started disclosing my situation, I've found that most people will slow down and go over things again with me. I use any/all of the following on a daily basis:
  • I literally do not understand what you mean. Can you break it down for me?
  • I don't understand what you want me to do with this information. I'd be happy to help if you can connect it to something you want out of me.
  • I'm not following that example. Can you try another way of explaining it?
  • I don't do well with vague terms like "advocate." What is it that you need, and what steps can I help with? (Note: You can put in any business or educational buzzword where I've got "advocate." Reform, initiate, implement, etc...)
Any and all of these statements could be taken incredibly badly by the wrong person. They just look sarcastic. I mean, who would say those things?

I do. And I get away with it. Here's how: I swore off sarcasm at work. I have ditched it to the point where people assume that if it came from me, then it must be a literal request. One of the things I learned when I first started disclosing is that people see and hear what they expect to see and hear. If you never give them a reason to think that you are sarcastic, then they won't hear sarcasm even when you are forced to say something like what I've said above.

The other thing that I do is I cultivate an air of etiquette. Every email I write, I strive to format as a full letter. That means a salutation, explanation of the situation, request, and follow-up information. I follow the rule that the one asking for something (or the inferior, if the term fits) should always acknowledge receipt of a message. I make sure that I'm addressing behavior and not a person if I need to become assertive (i.e. "The assignment is late" and not "You didn't do your homework"). All of these things help to defuse any sense that I'm being difficult when I miss social cues or when I fail to understand something.

Closing

Please don't take this screed as a single, unified argument or a political motivator. It's not. It's a gut reaction to the kind of buzz that I've been hearing for the last week. The issues of passing vs. not passing, of disclosing vs. staying quiet, of visibility, voice, and disability, they are important. They are things that require meditation and not argument, because each and every one of us must choose for ourselves the right time and circumstances for our own lives. We do need more voices, though. Because if we, as autistic adults, do not start to speak up for ourselves, then the deficit model of autism becomes the only model of autism.

If that happens, then we may as well go back to the DSM-III, because we won't be teaching kids to function around people who think very differently than themselves. We will be teaching them to suppress the expression of their own traits and personalities in order to fit into other people's expectations. That's a dangerous value, whether the child in question is autistic or not. It's corrosive to emotional stability, to morality, and to their future happiness.

Right now, every autistic adult over the age of 30 was a teenager before Asperger's was recognized. We are the generation(s) that had to learn to navigate a wilderness. If there is any value to the challenges we have faced, then it is this: We can positively identify those things that did not help, and we can work to undo them. We might not be doctors, we might not be in a position to tell people what they should do, but we can surely tell them what hurts.

Wednesday, July 25, 2012

The Various Ways of Being Excluded

Estée Klar
www.esteeklar.com

My son Adam has been in “therapy” since he was 20 months of age. I have reams of notes and binders used to create his programs, track his progress, develop his plans with other professionals who use ABA, RDI, Floortime and other methods. I have a decade of experience with autism education and various therapies, many of the approaches dubious. I’ve witnessed improvements in the field, and I continue to have a watchful eye. I predicted Adam would be forced into an ABA program, and here we are, in an segregated school for autistic children. Not that it’s a “bad” thing. I am actually grateful to be in a system that is set up more for him rather than completely disregards him. Adam, for now, is happy there and he is learning, but it’s a fact that it’s still exclusion which we mitigate with other inclusive programs.

ABA is something we’ve had to contribute to improve upon, because it’s really hard to change the system. To me it is in part a method, and in part a label for a type of education that in some schools, uses other methods in addition. Adam and I have to “fit” into a mold and make it the best for him -- those are our barriers and limitations for now. We work to fill in the gaps ourselves.

I learned and taught Adam how to type ... by myself, by reading, studying, and consulting others with expertise. Now his school builds upon what I started. I have now five years of typed dialogues between Adam and myself, methods, and back story of how it all began. He would never had had this opportunity had I not taken his education and communication upon myself, and I’m not shy to admit it because I hope such approaches will become more mainstream. I am not alone in this among autism parents. We make our own roads and other parents will share the work they’ve done. (Recently, I was asked to write a book about teaching Adam typing, and may do so after this year of finishing my M.A. in Critical Disability Studies.)

We still work towards Inclusion, but when I made a recent query within the public system, as predicted, it ended up that Adam would be put in the “lowest functioning class” (their term, not mine). His cognition and “capacity” was determined by his limited verbal ability and results on standardized tests (which we know do not befit the autistic person, as much as a dyslexic person cannot read typical text). How many students in these classes, no matter what their label, are not getting the education they deserve? Whose to decide on someone’s functioning level and “capacity” when we give unsuitable tests? Who has the right to decide who is normal and abnormal and how do semantics and labels effect people’s lives? Finally, if we decide to write off a “class” of people from the get-go, where do we end up? We are all affected, autistic or not. How we treat our collective members of society is a reflection of how we think about ourselves.

It seems there is a group of people who don’t understand (or want to set others astray) on the meaning of neurodiversity, which basically acknowledges that different people have different neurologies that make them learn and interact in the world in various ways. Myths are spun because it is assumed that if we “embrace” autistic people (some of us have been labeled “Neurodiversity Advocates” in a negative context) it will not serve their politics. I suppose, in the system we currently have which is so exclusive and politically limiting to us, we can understand the method -- but I think it’s ultimately detrimental. An exclusive, “tragic” and medical approach to disability limits community membership and opportunity.

Until recently, as autism parents, we have had to feed into the “autism tragedy” model in the belief that this is the only way to garner financial support and services. Despite inroads against the medical and disability-is-tragic models, there are many new parenting studies which seem intent on proving that autism causes families to break apart, which to-date, cannot be proven. This is another way of excluding autistic people and their families -- by seeking something to blame, researching etiology and causation instead of spending money on understanding autistic individuals and bettering their quality of life.

If we accept and believe in our children and don’t get tragically depressed, we are written off (as I have been on numerous ocassions) as being in denial. I have been labled a neglectful parent, and a “mental case” (a revelation of the prejudiced inclination of the autism “advocate” who stated that about me). “Those who stray from the this prescribed script [the tragic or depression 5-staged model from grief to acceptance] -- for example, by not being as depressed as predicted -- run the risk of being regarded as in a state of denial and in need of further psychological guidance and counseling (Oliver, 1995; Reeve, 2000; S. Wilson, 2003).” I think life is all about struggle and we have to work with it. Nevertheless, when we write publically, we leave ourselves open to criticism of all kinds. I embrace that too, but I will also take it on.

It has been challenging to write my blog for the past few years. I’m not allowed, according to some autism parents, to take joy in my son for who he is as an autistic person. My own ups and downs are disregarded if I do not publicly lament in the same fashion as others do. I opted not to do this because I always kept my son and his community in mind. If I were an autistic person, I thought, how might I wish to be regarded? I don’t criticize others for their depression because each one of us has to take our own unique journey. I simply believe that I, personally, have to exercise a discipline in my thoughts and feelings, which is not to say I don’t have the same kind as everyone else. I have imposed this upon myself. I have always kept Adam in mind when writing publically because I believe one day he may read this. I also wish to embrace and listen to the autistic community (that is, autistic people). It’s unfortunate when others feel they have to “spin” for political reasons or their own benefit.

The other political debates and controversies lie in semantics and definitions. Words are important as they reflect our thoughts about the way in which we see ourselves. We work against traditional systems that have, to date, been oppressive and exclusive against the disabled. Paul Hunt first challenged what we call today ‘ableism’ (a society that favours the able-bodied), in his 1966 book, Stigma: The Experience Of Disability. He said, “We are challenging society to take account of us, to listen to what we have to say, to acknowledge us as an integral part of society itself. We do not want ourselves, or anyone else, treated as second-class citizens, and put away out of sight and mind.” (p. 158).

The Union of the Physically Impaired Against Segregation (UPIAS) was formed in 1974. They re-defined the distinction between “impairment’ and “disability” as part of their mandate to “criticize organizations control-led by non-disabled ‘experts’ for their failure to address the social barriers central to disabled people’s exclusion from mainstream economic and social activity and their lack of accountability to the disabled community.” (p.29)
Impairment: lacking part of all of a limb, or having a defective limb, organism or mechanism of the body;
Disability: the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. (UPIAS 1976z, p. 14).
This social model approach breaks the traditional causal link between impairment and disability. The ‘reality’ of impairment is not denied, but it is not necessarily a sufficient condition of disability. (p. 30).
Writing about autism as a joy, my absolute love of my son for who he is, my personal struggles without pandering to the pressure to lament in typical ways while embracing others’ need to make their own unique autism journey, is about inclusion of everyone. It begins with the fundamental acceptance and belief, however, that all autistic individuals are worthy and valuable members of our collective. It’s a necessary premise.
The social model is not about showing that every dysfunction in our bodies can be compensated for by a gadget, or good design, so that everybody can work an 8-hour day and play badminton in the evenings. It’s a way of demonstrating that everyone -- even someone who has no movement, no sensory function and who is going to die tomorrow -- has the right to a certain standard of living and be treated with respect. (Vasey, 1992a, p.44)
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Reference:

Barnes, Colin, Mercer, Geof and Shakespeare, Tom. “Analysing Disability” in Exploring Disability: A Sociological Introduction, pp. 1-42. 1999 Polity Press.

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A version of this essay was originally published at www.esteeklar.com.

Monday, July 23, 2012

Autism, Siblings, and Fairness

Shannon Des Roches Rosa
www.Squidalicious.com
www.ThinkingAutismGuide.com

Thirteen-year-old Iz is a wonderful big sister to Leo, who is just 21 months her junior. This photo is of the two of them at a family reunion earlier this month; she's letting Leo know that the group photos won't take that long, explaining that if he can just sit for one more minute, then he can go back to the playground, and that he's being particularly awesome and patient (which he certainly was -- family reunions are chaotic and make routines difficult to maintain).

I don't have a photo of Iz and Leo from last week, when she got into a teen defiance spiral in the car, and wouldn't stop yelling, wouldn't stop shrieking even when I said she needed to stop because she was upsetting Leo. He ended up losing his temper completely and whomping her. That's not an image I want to save.

After everyone had calmed down, she cried and cried and said she was sorry -- but she also said it isn't fair that she has to behave in certain ways so Leo won't get upset. I said I was really sorry he hit her, and I was glad she was OK -- but that the situation was completely preventable. I reminded her that Leo has both sensitive hearing (yelling is painful) and extreme emotional sensitivity (if other people are upset, he becomes even more so and will do anything to make it stop). Getting upset was not his fault. If we want to help him control himself, we have to control ourselves. It is never acceptable to hit, as Leo knows full well. It is also never acceptable to yell the way she was yelling.

Accommodation is part of being part of an autism family. It's what we do. And while we may wish things were easier for Leo because it is hard to be intensely autistic in an NT world, and while I understand that it's not easy for kids and even parents to have to change their behaviors for another child's sake -- accommodating others' needs is the deal in any family. It's just that accommodations can be more obvious when a family member is disabled. And, because our society stigmatizes disability, it is too easy even for kids who have been raised to view disability as difference rather than defect to lapse into thinking of sibling dynamics that require self control as ... unfair.

I told Iz and Mali that it's OK to discuss those situations that are hard. But I also told them it is not acceptable to blame Leo, or resent him, because of circumstances over which he has no control or which are part of his autism. (They are welcome to chastise him if he steals a piece of their pizza; that's a blatant jerky brother transgression.)

Pizza-thieving aside, Leo is generally doing his best. He's become very good at coping with and understanding Neurotypical-land, and making himself understood. He just got through a week of busy family gatherings. His sisters know he's a capable guy. They just need reminding to support him as best we can, to make things Leo-friendly, to avoid avoidable crises. He accommodates them, all day long, even if they don't always notice. He deserves nothing less than reciprocal -- fair -- treatment.

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A version of this post appeared on www.squidalicious.com.

Friday, July 20, 2012

IMFAR 2012: Toward Better Psychopharmacological Management of Anxiety In ASD

This is one of four talks from the IMFAR 2012 symposium Anxiety in Autism Spectrum Disorders: From Biology to Treatment. The overall session theme: It's clear that anxiety is a major problem for kids and adults on the autism spectrum, now we need to figure out how to treat it.

This summary is not intended nor should be taken as medical advice. Please consult a medical doctor for any decisions regarding psychopharmaceuticals. 

Any errors or omissions in the edited-down transcription below are on me. Dr. Scahill also presented data and slides from several studies, that information has either been summarized or omitted. INSAR members can download the full audio file of Dr. Scahill's talk. -SR

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Lawrence Scahill
School of Medicine, Yale University

There are so few data on this topic that he actually had to change the talk.

The story starts in 2002, with a study in the New England Journal of Medicine on Risperdal (Risperidone) treating aggression and self-injury in autism [PDF]. This was part of a series of steps that led to the official FDA approval of Risperidone to treat tantrums, aggression, and self-injury in autism. This was a big deal, it was the first time it had ever happened.

Notice he's deliberately not saying that the drug is treating autism -- it is treating the cluster of symptoms in children with autism that, when they occur, can cause big problems. The reduction of those symptoms improves the lives of these children. So this became a pathway for drug approval in autism. And that's part of the reason that drug companies are now interested.

The FDA reckons that this is a safe and effective treatment for tantrums, aggression and self-injury -- the aberrant behavior checklist, the irritability subscale, the focused symptoms. This gives us a handle on how to approach other outcomes. But when they look closely, they realize that they really do not have too many other good measures. They have lots of ideas for symptom clusters, but not data. And if you can't measure it, you can't study it.

He was part of a task force to survey, very carefully, all measures of anxiety in typically developing children and adults, and see if they might apply to children and adults with autism spectrum disorder. And after all was said and done, they thought there might be some problems, mostly because the scales they were using were reliable solely in typically developing children. Many of the scales, such as the MASC (Multidimensional Anxiety Scale for Children) relied too much on language, on asking people to talk to you.

So, what do we know about drugs and children with anxiety and ASD? Not much.

If we look at SSRIs, there are two large scale studies in children funded by the NIH (National Institutes of Health) that show SSRIs are effective in treating the big three anxiety disorders: separation anxiety, generalized anxiety disorder (GAD), and social phobia. But no evidence in children with ASD.

What about benzodiazepenes? They are effective in treating anxiety disorders in adults outside the world of ASD. They tested children in 1995, but stopped the study early because it was such a dud -- the drug was Clonazepam -- so he doesn't think you should go there, he thinks that would be a waste of time.

What about the anti-convulsants? There's an anti-convulsant called Pregabalin that is marketed in Europe for GAD and social phobia. There are six very well-done studies that show that drug is effective in anxiety (it's been studied in the US but has not been approved for adults, and hasn't been studied in children).

He described two NIH-funded studies about anxiety disorders in typically developing children. The two drugs were Fluvoxamine [Luvox], and Sertraline [Zoloft], both SSRIs. The main outcome measure was the Pediatric Anxiety Rating Scale (PARS). In both studies, the improvement was solid.

What about SSRIs in children with ASD? If we pull from three sources: the Fluvoxamine study, the Sertraline study, and a study we did with a different SSRI, Citalopram -- not in anxiety, but in children with repetitive behaviors. With Citalopram, there was no difference between a placebo and a drug for repetitive behaviors. The only difference found was in adverse effects, in particular something called 'activation': increased motor activity, disinhibition, compulsive behaviors, insomnia.

In the Fluvoxamine study for typically developing children, 27% of the children had increased motor activity, 19% had insomnia -- really no different than the placebo. In the Sertraline study, 5% had increased motor activity, 6.6% had disinhibition, 6.6% insomnia. In the Citalopram study: 38% increased motor activity, 20% disinhibition, 38% insomnia. Now, obviously some kids experienced one, two, or all three of these symptoms. And those rates are higher in kids with ASD than in typically developing kids with anxiety disorders. Is it something to do with the dose? No, a very conservative dosing strategy was used -- ASD children just appear to be more vulnerable to these adverse effects.

So, what are we going to do to measure anxiety in this population? We need to do a much better job. We need a large-scale study.

The CASI (Childhood Anxiety Sensitivity Index) may not always be very useful [in measuring anxiety in autism] because it's a self-report tool, it would be more helpful if it was revised. The CGI (Clinical Global Impression) may be more accurate.

Conclusions: If you use SSRIs [with autistic people], you are doing it without any empirical data. But if you do:
  • Start very low -- start very slow. Because our data from the Citalopram study suggests that the dose and the rate of increase is what brings on the activation.
  • Monitor sleep -- sleep is actually looks like the tip of the activation.
  • Activation doesn't mean discontinuation. But the adverse affects won't go away on their own, you have to lower the dose (that's his experience).
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Readers may want to also refer to Scahill's 2009 paper Anxiety in Children and Adolescents with Autism Spectrum Disorders.

Wednesday, July 18, 2012

To Young Autistic Males: You Are Awesome

Gen Eric

I know you, but I don't know you. I'm not you, but we have more in common than you may think. For one thing, we are both Autistic. For another, we're both male; though you may identify as mostly male, or partly male, or a combination of male and female, or neither whatsoever and that's awesome either way. Just like your autism, that's part of what makes you you, and you are awesome.

There's something you need to understand from the outset. A lot of what's happened in your life, a lot of difficulties you've encountered and things that others may have objected to, they aren't your fault. All this time you were running on a radically different OS than your peers, and no one ever told you. You were expected to be just like the others and, when you couldn't do that, you were told it was a moral failure. Maybe you were even abused for being unlike the others. You may well have been brainwashed into believing you were broken.

You are not broken, not one bit, in fact you're probably fucking awesome, but you do need to realize that you are disabled. In fact, take a moment right now to say the word to yourself a few times, disabled. You might want to look in the mirror and say it “I am disabled.” Understand that I want you to say this to yourself, not as a put-down, because disability isn't a put-down or a deficit, but as an affirmation. I want you to become comfortable saying it to yourself, saying it to others, and embracing the identity. You are part of a disabled community, a disabled culture. There's an entire disabled history for you to explore, and become a part of.

Males grow up saddled with a cultural expectation of strength. Disability is seen as a sign of weakness in our society. In reality that couldn't be further from the truth. When you have a disability, your brain and body are different than what society is built for. The “normals” have the privilege of living in a world that was custom designed for them before they were born. Their preferred method of communication, their particular stress tolerances, their sensory tolerances, the way their bodies naturally move, and everything else was taken into account from the very beginning. If this is a video game, we're playing on expert level and they're playing on tutorial. Some of them will dare call you weak, because you can't jump through some hoop as easily as them, but don't let them get away with it.

You need to learn to say “I can't” and “I need,” and that will be one of the hardest things for you to do. I remember the first time I made multiple requests for accommodations, in grade school, and I was so berated I eventually suffered silently. The world doesn't realize, or doesn't care, that it's often easier for us to simply go ahead with their plan for us than to say no and demand the world work within our limitations. But you need to make a stand, and you'll need to do it multiple times. The world will tell you to move, and your job, to quote Steve Rogers, is to tell the whole world “no, you move.”

You need to embrace your disability, and embrace your autism, and that won't always be easy to do. The world is dead set on convincing you that autism is the worst thing ever, that you need to see yourself as an object of pity, and that you need to be desperate for a cure. My sincere, well-thought-out response can only be as follows: to hell with that! You are perfectly awesome the way you are, and without autism the person you are would not exist. By right of birth you are a member of the Autistic community and Autistic culture, and you have a place in Autistic history. Embracing your autism is an act of rebellion.

Monday, July 16, 2012

Person First: An Evolution in Thinking

Jess at Diary of a Mom
www.adiaryofamom.wordpress.com

If you were to sit down and read my blog Diary of a Mom from its inception back in 2008, I’m sure  you’d notice some pretty dramatic changes. Many of the words I use and the way I use them have changed. And the change in verbiage is reflective of a change -- an evolution really -- in my understanding of autism.

When Brooke was first diagnosed, I bristled at the word ‘autistic’ when it was assigned to her in conversation. I actually found it offensive. “Person first!” I would shout in my head as I calmly responded, “my daughter HAS autism,” emphatically yet (theoretically) politely ‘correcting’ the perceived gaffe.

And then, somewhere along the line, I read THIS: Jim Sinclair’s Why I Dislike ‘Person First’ Language.

And something shifted. I had never considered the words nor what they represented from the inside out. Reading Jim’s words turned the whole conversation upside down. The switch had been tripped on a life-changing evolution in my thinking.

It changed me -- or more accurately, it began a process of changing me. I started to think differently. I started to test it out -- to feel it in my mouth -- autistic. I started to bristle less when I heard it. But didn’t adopt it completely. I wasn’t ready. And looking back, I can only conclude that I didn’t because I wasn’t ready to accept that autism was a PART of my kid.

It is.

As John Robison points out in his book Be Different, when we talk about people having something, it’s something bad. He has cancer. He has a cold. He has the flu. When was the last time you heard someone say, “He has intelligence?” or “Wow, she really has giftedness and talentedness?”

So when we say, “has autism” aren’t we conveying a message to our kid that what they “have” ain’t good?

I come back so often to John’s words about the demonization of autism. They’ve made their way into heaven knows how many of my posts over time. But there’s a reason for that:
For many of us on the spectrum, a parent’s stated quest to ‘cure’ autism feels sort of like a divorced parent constantly criticizing her ex in front of us kids. As that kid, I know I am half Dad and half Mom. So when Mom tells me Dad is no good, what is she saying about me?

If much of my life is defined by autism, and autism is a terrible thing, how do you think I will feel about myself? I ended up in special classes because I am autistic. I flunked out because I am autistic. I already know I am disadvantaged with respect to others who are not autistic. I don’t need more stuff to feel bad about.
To the autistic adults that I know, and I have the privilege of knowing a lot of autistic adults, the idea that their autism could somehow be separate from their identity, removable, any less than an integral part of how they see and smell and taste and hear -- and function in -- the world is patently absurd. To one friend that I spoke with about the 50 Cent gaffe, the idea that the word itself could be an insult is laughable because that friend -- and the autistic community of which he is a part -- have claimed it. It’s theirs. Let anyone else use it as they will. It can’t hurt unless they allow it to.

Lydia Brown wrote an utterly fabulous post on this topic at her blog, Autistic Hoya (note: not Hoya with Autism). I have begun to borrow liberally from that post when trying to explain my feelings on the issue to others.

I am grateful to Jim and John and Lydia for giving me the language to ask, “So when we you talk about other parts of your identity, do you say that you have Jewishness? Catholicness? Gayness?”

Because I have had the chance to explore and digest their perspectives, I now frame the conversation around the question, “If you are referred to as Jewish or Catholic, does that mean that the speaker who has described you as such has pin-holed your entire identity into your religious preference? If someone says ‘He’s gay’ have they somehow negated the fact that he also plays a mean guitar? Of course not.

So just as one can be described as Jewish or Catholic or gay without taking away from any of the other possible descriptors, they can also be described as autistic and still be thousands of other things too. The word doesn’t negate the rest of a human being, it simply acknowledges and validates the reality of that person’s experience. Yes, I bolded that on purpose. Because for me, it’s the crux of this whole messy ball of wax.

I feel like I have to say the following. My thoughts here are just that -- MY thoughts. They are, as everything here always is, based on MY experience with MY kid and in the context of the people in OUR world. I am not trying to tell anyone else how they should refer to their child, and I’d certainly never dream of telling anyone how they should describe themselves. These are intensely personal decisions. Decisions that I hope to God my daughter soon has the capacity to make for herself. In the meantime, I have to follow my gut to find the language that I think is the most respectful of who she is. Yeah, I bolded that too

My girl will undoubtedly face ignorance as she steps further into the world. When she does, I want her armed with an impenetrable wall of self-esteem. Of belief that just as there are serious challenges in her autism, there are also gifts -- her incredible memory, her uncanny ability to repeat what she’s heard or read, her pitch-perfect imitation of accents -- and so much more we will have the joy of watching emerge as she grows.

When someone spits ‘autism’ at her as a dirty word, I want her to turn it back on them, framed as her own. “Yes, I’m autistic. So? I’m damn proud of it.” Heck, she could even throw in, “I’m sorry that you’re not, but that’s not my problem,” for good measure. And so too, she can use it to connect with others like herself, to be a part of a community of understanding and support and pride. And thank God that community exists and awaits her -- forged and fostered by adults -- adults who, in my experience, choose to be called autistic.

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A version of this essay was originally published at adiaryofamom.wordpress.com.

Friday, July 13, 2012

Just Say Something

Jennifer Byde Myers
jennyalice.com

the cashier: Diapers eh? Expensive. I bet you can't wait until they are out of those.
me: Yes, we'll be rich. Uh, I have a special needs kid, so it may take awhile.
Oh, that's hard.
Yes, mostly for him. He gets frustrated. But he's doing great. He's a great kid. He goes to the Amazing Autism Wunderskool.
Oh, autism.  Is he high or low functioning?
Well, those terms really aren't very accurate.
Oh?
No. For example, there are some autistics who will go to college, but may still have trouble putting their shoes on the correct foot. I have a friend like that. Does that make sense?
Yes. I get it.
My son has a lot of trouble with communication. He's non-verbal, so that makes it more challenging for him to communicate his wants and needs.
Huh. I have a neighbor. He's about 30. He lives with his parents. He's very severe; lots of grunts and sounds.
That sounds like my kid. I say "profound" instead of "severe."
Yeah, profound. Well he rides the same city bus I do, and there were some high school kids on the bus too, and they were teasing him. I told them to knock it off, and they did, for that ride. But the next time we were on the bus it happened again, so I stood up and yelled at them. I was probably a little more agitated than I had to be, but it made me so mad. They had no right. He's a great guy and they have no right. We go to the same pool, and you know, when he's there he is just so happy, splashing and laughing. He makes us all have a great time. Then those kids go and tease him, so you know what? I let 'em have it.
Wow, well thank you for standing up for him.
Well the bus driver thanked me too, but I didn't do it to get thanked. I just had to do it. It doesn't take much you know, it doesn't take much to just say something.

The bus driver told me that those kids call me 'the crazy old bitch' now. But I figure it's worth it. I'll wear that name like a badge of honor.

They don't tease that young man any more.

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A version of this essay was previously published at jennyalice.com.

Monday, July 9, 2012

Disney and Autism Speaks: When Criticizing Corporations Is Necessary

Brenda Rothman
mamabegood.blogspot.com

In my recent post about my autistic son not being accommodated at Disney World, some people responded with a vehement defense of Disney. It's almost as if they themselves felt attacked. The same thing happened in the comments of Lydia Brown's post about Autism Speaks.

Neither Disney nor Autism Speaks will suffer from our criticisms. People will still visit and enjoy Disney. People will still donate, work for, and receive services from Autism Speaks. But those corporations, their goals, employees, and supporters can harm others.

The readers who respond defensively aren't really defending the corporations. Maybe they're defending the kind employees they've met, like the Disney cast member who went out of her way to help their child, to make him happier, more comfortable, make their experience easier. Or the Autism Speaks parent volunteer who has an adorable autistic child, who loves her child more than life, who only wants to help her child, who listens to you, feels the same way you do, and is funny to boot.

Maybe they're defending the idea of the corporation, that there is a place like Disney that they can take their autistic child purely for fun, without therapy, without IEPs, and watch him laugh and have fun, like any other child. Or that, of all the places and people in the world who have never even heard of autism (it happens), or don't know what it means, or think it's merely a misbehaving kid and a bad parent, there is Autism Speaks, who demands public attention to autism, who gets action, who makes parents feel less helpless and less alone.

Or maybe they're defending their experience. That they went to Disney and had a great time, did not meet with discrimination, received the accommodations they needed. That they looked to Autism Speaks and received services, insurance, aid, or support from them.

But kind employees and supporters, idealistic goals, and individual good experiences do not negate the problems with those corporations. Disney can have kind employees who get it, provide your child with a magical experience, and still have disability discrimination and accommodation problems. As it did with hearing impaired persons in 1997. As it does with visually impaired persons in 2012. And Autism Speaks can have kind employees and volunteers who get it, provide your child with aid, and still lack meaningful representation, participation, and goals of, by, and for autistic individuals.

That these two sides can exist at the same time is not impossible. We are capable of thinking in shades of grey. We can hold two disparate thoughts in our heads to understand that an organization can start with good intentions and make poor choices. That an organization can have power and also abuse that power. That an organization can be meant for the benefit of certain people and also use strategies and messages that demean those same people. That while your family receives some benefit from an organization, other people are hurt by it.

And when that is true, that an organization is hurting people, we should be open enough to agree that the organization is due criticism and should change in response.

Our criticisms don't mean that Disney or Autism Speaks, or other corporations, will stop providing services to you. Or to families like yours. But that shouldn't be our concern. In a community like ours, we should stand up for those whose needs aren't met. We should demand that all members be treated equally and given equal voice. We should understand that others can and do have experiences different, and equally valid, from ours.

In a community like ours, I hope we stand up to the powerful for those with less power. I hope we understand that when a harm happens to the least of us, it happens to all of us.

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A version of this essay was previously published at mamabegood.blogspot.com.

Friday, July 6, 2012

Advice to Young Autistics: Stick Around and Become Awesome

Nick Walker
aikiarts.com
walkersensei.com

This post is part of our ongoing effort to reach out to young autistics in crisis. Future posts will include strategies for connecting with peers, mentors, and community -- because they're there, even if you haven't found them yet.

So you’re a young Autistic person, and maybe you think you’re broken; maybe you think you’re doomed to a life of misery. You’re in pain, maybe depressed, maybe angry. Maybe you’re even considering suicide.

Sorry you’re going through that. I’ve been there myself, and it sucks.

But I survived. And although it took some time and involved some major struggles, I eventually ended up becoming a very happy adult with an awesome life where I spend much of my time doing things that I love -- a life full of good friendships, good community, and those simple moments of joy, grace, kindness, and connection that make a life worthwhile. I’m glad I stuck around long enough to get here. The hard parts were worth it.

And if I made it, so can you. In fact, you’ve got a significant advantage that I didn’t have: these days, there is a large, thriving, wonderfully supportive Autistic community, ready to accept you with open arms. Most of us in the Autistic community have faced (or are still facing) challenges similar to your own, and those of us who’ve found ways to deal with those challenges are happy to share our insights (just like I’m doing right now) so that you can benefit from our experience instead of having to figure it all out for yourself like us old folks did.

So here are some insights that might be of use to you…

First of all, if your life sucks so much that you’re considering ending it, then you might as well try making your life better first, because you’ve got nothing to lose. Here are my two rules about suicide:
  1. Do something else. Try everything else that might possibly make your life better. “Trying” doesn’t mean “thinking about it,” trying means actually doing it, and doing it with real commitment. For instance, training in a martial art can make your life better (it did for me), but going to one or two classes isn’t “trying.” Going to classes only until it gets really challenging and frustrating isn’t “trying.” “Trying” is practicing day after day, week after week, no matter how hard it gets, for at least a couple of years. The human survival instinct is strong, so if you have the willpower to off yourself, then you also have the willpower to persist in the project of changing your life for the better.
  2. If you can’t think of anything else to try that might improve your life, think bigger and bolder. Think about what you’d most like to be, and no matter how far away and unattainable it might seem, find a step you can take in that direction. Remember, if you’re thinking of killing yourself anyway, you have nothing to lose, so there’s no reason to “play it safe” or to rule out any option, no matter how much of a long shot it might seem.
Here’s what I didn’t do to end up a happy person with an awesome life: I didn’t stop being Autistic, I didn’t become less autistic, and I never considered either of those things to be desirable goals.

I did learn to navigate the neurotypical social world. But I didn’t approach it as trying to change myself in order to “fit in.” I approached it as an adventure in learning my way around an exotic foreign culture. Any “fitting in” I did, I thought of as an exciting exercise in role-playing and infiltration. I still do. And in my everyday life, I’m openly Autistic and gleefully eccentric, and I get away with it.

Here’s the secret: it’s all about confidence. Not the bluster of bullies, that covers up desperate insecurities, but the deep confidence that comes from a strong sense of self. And a strong sense of self is something that one earns and develops, over time, through commitment to paths of action that push one’s edges and tap into one’s depths. Set out to master something, and I don’t mean a computer game. Martial arts and theatre are good starting points that I highly recommend to all young (and not-so-young) Autistic people, though of course there are plenty of other good starting points. Just make sure it’s something you’re not naturally good at, because a strong, positive sense of self comes from long-term perseverance in the face of challenges.

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If you are having suicidal thoughts: that is an emergency, and you need to get to a safe place. If you do not feel comfortable reaching out to the people in your life, resources such as Samaritans (samaritanshope.org) have hotlines for teens contemplating suicide for any reason. You can also call the National Suicide Hotline: www.suicidepreventionlifeline.org 1-800-273-TALK (8255).

You are worth that call. You are not alone.

Wednesday, July 4, 2012

Poetry: My Voice, My Life

Amy Sequenzia

Amy is a self-advocate who types her thoughts. The poem below is from her recent book of poetry My Voice: Autism, Life and Dreams. Please contact Amy to acquire your own copy of her book.

My Voice, My Life

Look at me.
Go ahead, take a good look.
What do you see?
Weird? Silly? Pitiful? Can’t do anything?
You might feel sorry for me
You might pity me
You probably think I should be treated like a child.
I’ve heard and seen this before.
“Can she understand me?”
“Does she know what is going on?”
“How can she make choices?”
I understand your confusion
But it is time for me to come out.
Let’s just make something clear
I am autistic,
I am disabled,
I have many special needs,
I look different;
I need help eating, walking, moving around.
I do not need help
Thinking.
That’s what you do not see.
Look at me again.
What makes you think I don’t have an independent mind?
Have you tried to get to know me?
I have dreams, wishes, opinions.
I also have a disability
That prevents me to communicate like most people.
I have other disabilities that make me physically dependent on others.
That’s who I am
That’s who you might have to deal with.
Imagine how it would be
If you were discriminated against
Without a chance to show your inner self,
Without a chance to speak up.
That was my life for a long time
It hurt then.
The discrimination still goes on
It hurts now.
But I decided that I have more to say
Then you might want to listen.
I will make the best use of all my rights
As a human being.
I have a voice
It is MY voice
I now reach out to you.
If you want to enrich your life.
If you believe you can see beyond what other people tell you to see,
Come and meet me.
It will require patience
Because my way of processing
Feelings, thoughts, words, emotions
Is different.
But they still are
Feelings, thoughts, emotions and words.
I promise to be patient with you too
Because your way of communicating
Is also very strange to me.
I might even think it is weird.
I am growing as a person
I fight hard to make a difference.
It is now your turn  
Are you ready to grow as a person?
Are you ready to look at me
And see beyond the “normal”?
What is “normal” anyways?
Let’s try to understand each other’s languages
Try to learn what is so clear
There is no “normal”
There is Diversity
And that’s why we are so unique

Monday, July 2, 2012

Autism After 22: Nat's First ISP Meeting

Susan Senator
susansenator.com

We had Nat’s ISP meeting today, which is basically an IEP for adults. Although there are fewer requirements for the service providers to fulfill for their clients, Nat’s service provider and also his dayhab/day program staff seem more than eager to outline comprehensive goals for him. Clearly charmed by his intense work ethic as well as his sudden smile and the occasional surprising flash of violet-blue Bambi eyes, his entire team wants to watch Nat soar.

Everything I heard pre-22 told me that Autism Adulthood would be the dregs of the universe, but it has been the opposite for Nat. Yes, it is true that Nat has Priority One funding (because of occasional intense episodes of frustration that can become self-injurious) and so he has enough support in his life. He is lucky in that way, lucky in the way that would otherwise be considered unlucky, for this means that he also has an IQ that measures pretty low. (Although that reality is not shameful, it is nevertheless an acrid, poison-tasting reality that IQ is tallied in a way that is completely anti-autistic in nature. If you don’t see the forest, nor the trees, nor the bark, but instead you are listening to the quietest of animals there, you will presumably have a tough time choosing which thing doesn’t belong. I hate the IQ as much as Theory of Mind. Anti-autistic biases.)

Yes it is true that we live in Massachusetts, the land of choices, open-mindedness, and opportunities. And yes, Nat has a couple of championship fighters in his corner. Ned and I have been through Rocky Balboa-like training, punching everything in sight instead of sides of beef to get what Nat needed.

But, the other side of the equation is that the service providers are indeed out there. Today, I experienced the beautiful reality of that. [Continue to the full article at Susan's Blog.]