Sunday, November 1, 2015

Stop presuming incompetence, Autism Parents.

Finn Gardiner has written "Stop presuming incompetence, Autism Parents" on Bad with Titles.


Content warnings in place for emotional abuse, shame-based training, anti-autistic sentiment and fundamentalist religion


Edition to clarify, 1 November 2015: My family and teachers did know I was autistic; I was diagnosed at a very young age, in the late 1980s or early 1990s. Their actions toward me were an example of wilful ignorance and shame-based thinking, but it would be unfair to say that they didn’t know I was autistic.

Autistics' Speaking Day: on my voice and identity

Julian Frost has written "Autistics' Speaking Day: on my voice and identity"


Normally, when Autistics’ Speaking Day occurs, I stay up until midnight, and post as soon as possible. Not today, though.
I’m going to write about identity and autism. Mostly in regards to myself, but I guess it can be extrapolated outward.
I’ve been blogging for the last five and a half years, and commenting on others’ blogs for almost six. During that time, people have tried to deny me my voice. They have told me that I am not autistic enough. That I can’t possibly understand or advocate for people who are more autistic than I am. The most egregious example of this was four years ago. MJ, a parent to three girls with autism, bluntly said:
So, no, when you advocate, you do not advocate on behalf of what my children need. What you do is minimize and marginalize them – especially when you compare their disability to something like women’s rights.
It was a blatant and mendacious attempt at laying a guilt trip on me, and it backfired. In the thread, Kassiane Sibley had called MJ out for trying to get autistic adults to shut up, and she had been absolutely correct. MJ wanted to silence me. He didn’t succeed.
I recently read a blogpost by another autistic blogger who hit the nail on the head with regards to the fallacy used by those who want high-functioning autistics to stay out of the discussion. The blogger claimed that the would be exclusionists were invoking the “no true Scotsman” fallacy. The exclusionists were trying to redefine the meaning of autism to exclude high-functioning individuals from the discussion. MJ was trying to do that to me, but that is not the only time it’s been used against me. Several other times internet commenters have said something along the lines of “you’re not disabled enough”. I only wish I’d recognised the tactic sooner.
There is a trend to use “person-first language” when speaking about disability. For example “person with retinitis pigmentosa”. I’ve seen recommendations to say “person with autism”, but that’s not my viewpoint.
As I see it, I’m not “someone with autism”, I’m autistic. It’s a part of me. It’s part of who I am.
I don’t doubt for a second that I would have had an easier life had I been born not autistic. But if I was given the option of a treatment that would turn me neurotypical, I’d refuse it.
If I wasn’t autistic, I wouldn’t be me.
The fact that so often, people have tried to deny me my voice and identity has made me more determined than ever to keep them.

Guerilla Aspies on the 2015 Edinburgh Fringe - Preamble

Paul Wady has sent in "Guerilla Aspies on the 2015 Edinburgh Fringe - Preamble" on YouTube

(a little bit of a warning, there's some background noise in the video)



I have been married to Aspie Elizabeth 8 years this December and worked for the National Autistic Society UK for 10 years next January. I wrote the Guerilla Aspies book and am touring a show that converts audiences to autism. I have set up and led social groups for aspies, made training films for the Nas, do training around the UK for Nas and work for the Brokerage department. What else can I do???

We are a subset of humanity and by the end of this century all frames of reference on neurodiversity will be completely different. We will not be a disorder, we will be a different form of neurology that when we are on top of our natures, is perfectly functional and acceptable. it is when aspie nature gets the better of us that we are relatively disabled. Compared to What? Super achievers? Who sets the bar for functionality in the world? Someone get me a universal standard for neurotypicality???

IRL

FeministAspie has written "IRL"


I haven’t been on here much recently; university is really hectic at the moment, and the time and energy that isn’t going into my studies is going into various other little side-quests. I don’t feel too disconnected though, because some of those side-quests are autism-related. Firstly, whilst I don’t want to go into details for anonymity reasons, I’ve recently embarked on a new project which involves writing about autism someplace else – publicly. It’s still online, and yet it feels more, y’know, IRL. It’s me, not just an alias I created specifically to express what I never felt I could around the people I care about, and it feels like a big step. The second thing I’ve been doing recently is starting, slowly and tentatively, to properly address some of the problems I’ve been having over the last couple of years and, I suppose, seek support through more formal channels. It sounds big and scary when I put it like that, but in reality it’s more like tiny baby steps that, taken individually, don’t seem worth worrying about.

I bring this up because I’m thinking about the year that’s passed since last year’s ASDay and realising that, in seemingly small and unconnected ways, I’m beginning to accept and embrace my autistic self not just in theory but in practice. The idea of learning now, as an adult, what sets me off and how to minimise the risk and how best to recover afterwards and how to explain all that to people seems like a bizarre concept, but it’s been happening to me for a while and it’s an ongoing process. For those of us who grew up believing that passing for neurotypical was the ultimate goal and that our differences were purely behavioural without considering sensory and other underlying differences in autism, it’s surprisingly common to have to re-learn how your brain wiring works and how to work with rather than against it. Some things that I thought were harmless need to be dealt with carefully or they can build up and lead to overload; on the other hand, some things that I thought were Very Very Bad can be mitigated and dealt with or even sometimes enjoyed, with some forward planning and supportive family and friends. My biggest challenge, as perhaps made evident by the whole “secret WordPress” thing, has been and is still opening up to people IRL (by the way, I include online communication with people I know in my definition of IRL, because why should that communication be less valid?) and again, the progress is slow, but steady, and perhaps increasing in pace. Even if the potential worst-case-scenarios never arise, I’ve found that just knowing there are people on side makes a world of difference.

What does this all mean? Well, in short, I’m one month into term and haven’t gone into shutdown yet (although who knows, maybe I’ve spoken too soon), I remain absolutely terrified of the future but I’m working towards making the future seem like an actual possible thing, and I’m feeling more like myself, like this version of me, in the big and scary realm of IRL.
Baby steps, as it turns out, can go a long way.

Our terribly truthful child

Rainbowsaretoobeautiful (Ann H) writes "Our terribly truthful child"


Could I be the most fortunate mother in the world? My eldest son is 7 years old and he has never told me a lie. Never.

This doesn't mean he has never done anything wrong. Anthony will freely admit when he has been naughty and understands about the 'naughty step'.  He will offer up his guilt upon the first request of 'what happened here' and will even explain if he did it on purpose or if the event was actually an accident. Anthony has been diagnosed with ASD since he was 4 years old. He has always been literal and taken what he is told and sees as fact, which has proved difficult at times such as interpreting what is real and what is fiction on the television for example.


Read More here. 

Radical Transparency

@pocketapocketa has submitted "Radical Transparency".


Radical Transparency is an "open notebook" and website, hosted on GitHub in order to facilitate certain forms of collaboration. It is in 'pre-release beta', meaning that it is scrappy as yet, but there are a number of podcasts associated with it, and a great deal of text to explore, relating to (not only) autistic / ADHD experience.


Read more Here.


Please note, since the website is an ongoing writing notebook, none of the works there have been previewed for trigger and content warnings. Please use caution when viewing.

Family: A Love Letter to Autistic Space

Daniel Obejas has written a piece on Acting NT, "Family: A Love Letter to Autistic Space"



Please check it out!

Autistics speaking

EmmaGoodall sends in "Autistics speaking"


Autistic speaking day - I think speaking requires both more than words and less than speech. It is not about what we say out loud, but how we communicate. A poem or a painting can speak from within with more power and passion than some spoken words. Alternatively a piece of theatre or music can move people emotionally or lead people to questions themselves and those around them in such a deep way they they change the way they live their lives. All of these require people to be open to learning from another, whether by watching their play or reading their poem or listening to their spoken words. My wish is that autistics are given the opportunities to communicate to people who are open to hearing/seeing from them and learning. The spoken word is not the most valuable form of communication, though it can be easier to hear, this does not guarantee listening.

‘Nothing about us without us’ except….

Leeanne Marshall "‘Nothing about us without us’ except…." from oneautisticperson




“This is a unique situation” “I am in charge and I am autistic so that is not needed” “That only applies in certain situations … this is not one of them” “This is a different kind of decision”
These are all statements or similar to statements I have heard recently from people who have authority over autistic individuals in various services. The people in authority state their agreement to the Autistic Self-Advocacy Network tag line ‘nothing about us without us’ but come up with an excuse as to why they do not have to follow that statement in specific situations. Some of these people will even tell other people in authority over autistic individuals that they must listen to their clients. I am sure some even think that they do listen to autistic people and value what we have to say because they do listen ….. in certain situations ….. when the person in authority thinks it is necessary or, to be blunt, when it suits the person in authority to listen.
I have reasons for not wanting to go into detail about the situation that happened recently. That said, the reason I am writing this for autistics speaking day 2015 is that not being listened to when accessing disability services is sadly, very frequent. A few years ago I was part of a social group for autistic women. I hope I am never again part of a group where the person in charge has chosen bowling for an activity and only 4 people actually participated in bowling while the rest of sat and talked at a table because we did not want to go bowling (and of those 4 people, only 2 were clients). I hope I am never again part of a group where we are told we can make our owns rules, because we should have some ownership of the group, but our rules will only apply to certain people and will not be considered to be as important as rules set by the person in charge. I hope I am never again in a social group that ends up being suspended because some of the clients felt so angry about not being listened to that they walked out of the group one session and meetings the following few weeks. That said, I do not regret walking out and would do it again if faced with the same scenario …. But this could all have been prevented if we were listened to and had a say in decisions that affected us.
When autistic people are only given a voice on some issues and decisions that affect us when accessing a service, it means that ‘nothing about us, without us’ is not being fully adhered to. It is a token voice and it gives the person in authority too much power. The person in authority comes with his/her own biases of what they think the service should be like and how the service should be presented (in the case above, the person in authority seemed to enjoy bowling and selected bowling as an activity regardless of the enjoyment of the clients). The person in authority needs to remember that the service is there for autistic clients and the clients should have a say about the service. That does not mean that every suggestion made by the clients should be followed (each autistic person is different after all, and so each client will have different ideas on what the service should be like) but it does mean the clients should always be consulted and have the opportunity to speak or communicate their thoughts in other ways. It also means the person in authority should take time to seriously think about the suggestions being made and not just instantly dismiss them.
The bottom line is when it comes the motto ‘nothing about us, without us’ it needs to be more than just words. If you are reading this and you in charge of a service for autistic individuals then you should be ensuring your clients involved in that service get a say in every decision that affects them. If you find yourself even now coming up with reasons why that can’t happen then I think you are actually making excuses and I challenge you to change your attitude. This does not mean that you have to go along with every suggestion made by the autistic people you run the service for, there may be reasons why you can not go along with these suggestions but you should listen and be able to thoroughly explain your reasons if you do not follow suggestions. ‘Nothing about us, without us’ no exceptions.

Living the Autistic Mythos

Ben Edwards "Living the Autistic Mythos" on The Autist Dharma




Having studied different cultures of the world academically for seven years, I have come to learn how all cultures shape their world view through mythos, or mythology.  I had gone to a local community college in my hometown of Kansas City for three years, and after that, I went to school at the University of Central Missouri in the small town of Warrensburg, Missouri, an hour’s drive away from my home, and there I declared and received my degree in Cultural Studies.  My current career ambition is writing-novels, poems, histories, philosophy, songs, etc.—but a series of taking several classes just out of pure interest followed by the sudden desire to graduate school with a bachelor’s degree in good time led to me picking a hasty, individualized major, but one that would enrich my world view all the same.  During that time, I came to learn about the idea of “mythos.”  Myths in this sense do not mean lies or misconceptions.  According to Ronald Wright, author ofStolen Continents, myths are “an arrangement of past events, whether real or imagined, in a pattern that resonates with the culture’s deepest values and aspirations…so fraught with meaning that we live and die by them.”  These “values and aspirations”—beyond religion, politics, and philosophy--are expressed by different cultures in things as taken for granted as every day conversation amongst people in each culture.  The more I learned about different cultures across the world, the more I began to think of the culture of my own country, and eventually, the culture of the autistic community, at home and abroad—a community and culture that I believe moreover share a common, albeit latent, world view, and the common stories they share reflect this and what it means to be an autistic person.
 
                I believe, as other autistic rights activists do, that autism is not something a person suffers from, as much as they suffer from a society that benefits people who learn, live, and process in one way that it does others; that autistic people are not a recent epidemic of vaccines, genetic mutations, mothers over thirty-five, or bacon, but have been around for hundreds, if not thousands of years, as an evolutionary divergent strand of humanity like dyslexics and people with AD/HD, OCD, etc.; and that society needs to change to accommodate our differences, instead of changing our differences to accommodate it.  I also realize that every time I see my fellow autistics out there, I share a special connection to them.  I believe these ideas mean something to all of the autistic and autism community, even if some do not know it yet.  I have met individuals and families taking part in the walks and Light It Up Blue events of the pro-cure organization Autism Speaks, even though they reject AS’s medical model of autism, while wishing to know that they and their families are not alone.  In time, I have learned it is my job to show these individuals and families my own way to understand they are not alone, through building connections, planting seeds, and gaining trust.   

These views on the autistic people are reflected in my writing, art, music, and have been for the last five years.  In the last seven years, I would undertake many great projects in the name of these ideas, such as leading and starting autistic student unions at these colleges, writing blogs, and speaking to and mentoring autistic youth at summer camps and learning disabled schools. During my lifetime, I have also heard about Autistic myths (both good and not so much)—autism and autistic life in films, among celebrities, historical individuals, across the world and throughout history, fighting for their rights, celebrating Autistic pride, going unnoticed in women and girls, existing in adults.  Films fromNapoleon Dynamite to Sherlock Holmes to Adam; individuals such as Dan Akroyd, Thomas Jefferson, and Albert Einstein; books such as Roy Richard Grinker’s Unstrange Minds: Unmapping the World of Autism and Steve Silberman’s Neurotribes: The Legacy of Autism and the Future of Neurodiversity; as well as issues of autistic adults from employment to relationships to dating; and events such as Autistic Pride Day, Autism Acceptance Day and Month, as well as Disability Day of Mourning.  While I certainly do no approve of everything about each “Autistic Myth” I see, I notice how these sociological and cultural aspects of autism have been a part of growing up and living for my fellow autistic rights activists, and I believe over time, these stories, these memes, these perceptions will develop to suit our current needs and ideas. 

When I think of the autistic community, I see we do in fact have our own deepest values and aspirations.  Now, while it is true that many autistics will adamantly argue for their autism to be “cured” and wish that they did not live with it, they do so because they have lived a life full of stigma and discrimination, which makes them blame themselves for their own struggles, reinforced by families, schools, and aggressive lobbying industries such as Autism Speaks.  Indeed, when people from any culture have been surrounded by people of another culture, they frequently become disconnected from their own identity, just as an American can do if they go to live abroad.  But, when I am surrounded by autistics in groups such as the local Autistic Self-Advocacy Network chapter in my area, I feel consistently like I belong, am comfortable, and can express ideas about myself and people like me, which is what it means to be a full member of a particular culture.  When I am around neurotypicals, particularly insensitive, domineering, and close-minded ones, I do not feel so comfortable being openly autistic like I do with ASAN.

                I have once heard a saying, “Other cultures are not failed versions of being you.  They are unique manifestations of the human spirit.”  For this reason, when I think of the Autistic culture, I think of autistics (the autistic community)—proud, self-respecting, and authentic people—and, by extension the people who care about them, such as (potentially) their family members, service providers, friends, spouses, and children, as opposed to groups making enormous profits, saying autism is like a tsunami, car wreck, lightning, or cancer, AIDS, and diabetes combined—groups like Autism Speaks.  Their message is simply crass and has no meaning to Autistic culture whatsoever.

                What seem to be common across the autistic/autism community are certain themes, which in fact all seem to make me believe in the idea of an autistic mythos.  These include themes such as autism in the media (movies, television, etc.), famous autistic people (Temple Grandin, Daryl Hannah, Andy Warhol), scholarship—learning about autism as a difference and how to better accommodate the needs of autistic individuals and families, and public events and recognition—whether events like World Autism Awareness Day and Light It Up Blue or, on a more positive note, Autistic Pride Day.  Seeing autism across different cultures, existing in historical figures, and being masked by behaviors, co-morbid conditions, and medications in women and girls demonstrate to me that our differences can blend in or stick out, depending on the culture and time we live in.  From looking at autistic characteristics showing up in film, television, fiction, and video game characters, I realize how my autism shapes the way I see and relate to people.  The famous autistic people of history and Silberman’s study of autistic individuals throughout time and space demonstrate that we are a timeless people, and not an epidemic, while contemporary notable autistic individuals make it clear that there are inspirational autistics today, and it is unnecessary to look at history to find them.  Autistic adults I have met over the course of my life time, struggling with school, relationships, and employment show me how absurd it is to simply wait around for a magic cure to our autistic realities, and need to get a hold of the situation while we have the chance, and thus making the need for any autism cure completely obsolete, as autistic rights activists have been saying for decades.  And while some events and public recognition of autism are more positive than some, I recognize that we autistics have the power to join together with the support of our friends, relatives, and supporters who make autistic existence what it is.  It is because of my life and education I have had on autism that I am willing to go to any lengths to help my autistic kin, and in that respect, I see what Wright means about how myths are something we live and die by.

Experts in our own lives

Leia Solo "Experts in our own lives" from 1handclapping 



One of the popular catch phrases in my profession is that ‘people are the experts in their own lives’. In the social work profession, we acknowledge that when it comes to talking about experiences, identifying goals and deciding what happens, clients know best. This is also called self-determination.

When it comes to autistic people, this seems to be a really hard concept for people to accept. The mainstream media, many parent support groups, education departments, researchers and professionals who work with autistic people, seem to have a lot of trouble seeing autistic people as the experts in their own lives.

Justifications for research on autistic children, publishing stories about them in the media and subjecting them to many hours of behaviour modification therapies is that they experience ‘challenging behaviours’, have ‘difficulty coping with peers’ and are ‘disruptive’ or ‘violent’. Time is spent trying to improve their eye contact, sit still in class, say ‘hello’ and ‘goodbye’ and ‘respond appropriately’. Whose goals are these? Whose purpose do they serve?

What do autistic people want? Do autistic children want to sit still? Do they want to make eye contact or not? What does it feel like for them when they do? What are they trying to communicate when they are ‘disruptive’? What frustrations are they feeling when they become ‘violent’? Do they want to participate in research on a substance that will alter the way they relate to others?

You might be interested to know that when autistic people raise these sorts of questions, they are frequently told that their concerns are not valid because of the ‘overwhelmingly’ large amount of carers and parents of autistic children who testify to the need for them to change.

Why are autistic people not allowed to be the experts in their own lives? Why is our self-determination secondary to the needs of non-autistic people?

Wonderglow Static

WONDERGLOW STATIC

Wonderglow static
Alight in my brain
A crackling connection
`Twixt silly and sane
Am I to be pitied?
Protected?
Restricted?
By those supposed wise
I have thus been depicted;
With a precocious puppet
That romps in my skull
Now disquietingly sharp
Now perplexingly dull
I have both strode and stumbled
And faltered, and flown
Scattershot seed and humus for
Fears that have grown
Of a reprobate, sluggard,
Religious fanatic—
What comes from a head
Filled with wonderglow static?

Wonderglow static
As waves trough and crest;
To surf the potentials
Between worst and best
I hang ten and tingle
Taut into the spray
Is it in and around me
Or just in my way?
Strange variation
Or one heaven blessed—
Ever at peace
Although never at rest?
Seeking no leave to differ
Begs leave just to be
Were there one to be begged!
And are none to foresee
The spills and the dousings
(With warnings emphatic)
That befall those who surf
On the wonderglow static?


Wonderglow static
An unbridled force
Affrighting the fretful
Respecting no course;
An electroshock zombie
I shuffle through floors
Full of meaningless rooms
And anonymous doors
Murmuring babble
To strangers I know
Hilarious to friend
And pathetic to foe
Sick in the semblance
Of health on the face
Robust in remembrance
Of an untrodden place
Where I, no psychotic
Nor mystic, nor addict
Live dreams in the ether
Of wonderglow static

Wonderglow static
Let us impose a ban
(So the wise have proclaimed)
Let us remake the man!
And I, their own servant,
Leapt into their mold
And I, my own quisling,
I have cursed me tenfold
But wonderglow static
(Not easy to kill!)
Dreaded by some as hell’s glow
Is a flint-spark of will
Kindling warmth for pariahs
At the hearthside of truth
From whence re-emerges
That rejected youth
Who sought not to be safe
From things sad and traumatic,
But to hear what God whispers
Through the wonderglow static.


Merlin L. Taylor, Jr. 1995, 2006, 2015

Finding my Voice Again for Autistics Speaking Day

khawkgirl posts "Finding my Voice Again for Autistics Speaking Day" on Life as a Feral Autistic

Warning for cyber-bullying, anxiety and silencing of communication.

I was unvoiced for a few months this year.
I am naturally good at writing. Though I am able to speak most of the time, unless I am overloaded to the point of shutdown, I find I am much more eloquent when I am writing. There are none of those pesky non-verbal cues and tones that I struggle to send or receive here. I don’t have to worry about losing control of my volume and accidentally blasting everyone within earshot or, mumbling so softly that no one can hear me. I often speak way too much, rambling on about whatever topic that has caught my interest without noticing that everyone else was bored with the topic 30 minutes ago. I spend a good portion of my time not speaking at all because I am too afraid of annoying people or hurting their ears.
Here, there are only words without any of those other distractions.

Is Anybody Listening? Does anybody care?

Jane Strauss writes "Is Anybody Listening? Does anybody care?" on FaceBook



I am one of those “angry persons with autism” who are the bane of some organizations’ existence.
On Autistics Speaking Day, I will be traveling to attend a “Summit” on inclusion in the Jewish community. I am of two minds about this. It is vastly needed. And I am concerned that it will be more of the “same old, same old” and will, in the long run and in real life, make little or no difference.
Our family includes three inhabitants of the spectrum - everyone in the house. In that sense, we can all really be said to be “living with autism” or at least “living with autistics” - unlike the allistic “warrior parents” and professionals who use the term as a euphemism. We are all different in our challenges and our gifts - two have more difficulty with language, one with motor function, two with behavioral control, all with executive function, all are artistic, one deals with dyslexia, two with visual functioning, two test as gifted in intellect, all have sensory issues and allergies, one has issues with toileting, one blurts out brilliant statements when most people least expect them, not always the same one or two for everything. We span the grid all by ourselves.
We have a Jewish household, to the degree that is compatible with sensory issues, making a living and paying the bills. This means that we avoid the High Holiday services that are packed with people (relying on internet broadcasts for many of those), may need to work or do other incompatible things on Shabbat, prioritize our purchases, and center observance on the home. As primary parent, I have struggled to gain inclusion for our son, and for the older kids (no longer at home), in the Jewish communities near which we live. Pretty much, the attempt has been a failure. Only one of the four older children identifies with the Jewish community, despite all having attended day school and Jewish camps for at least several years.
All the kids have been bullied, some, at times, by the Rabbi’s kid. The Rabbi, and his wife, did nothing.
Learning differences were not dealt with well. Decades ago, dyslexia was ignored, and some of the children struggled to learn. They caught up, to the extend that one actually was a Hebrew major at University, with honors. More recently, the local organization that claims to include kids with special needs in Talmud Torah was unwilling to permit their educational aide to be cross trained in dealing with physical issues like toileting, requiring instead that I or a PCA also be with my youngest son at all times. At age 8 or 9, having 2 adults with a kid all the time results in an effective barrier to real inclusion, not that the organization ever thought of, or cared about, this reality. I declined to enroll him under such conditions.
Overnight camp programs claiming to be inclusive were either segregated entirely or “camp within a camp” segregated units, including disabled participants only occasionally, and not even for Shabbat services or Shabbat dinner. Some typical campers were “buddied up” with the “special needs” campers, some of the time. Sorry, my kid is not your kid’s mitzvah project.
Sensory issues and allergies to scents, clearly stated, were ignored.
The Senior Rabbi of one congregation, after my son had a meltdown at shul, called us to suggest we would probably be happier somewhere else. Ironically, most people who know him and work in the ASD field have said to me, on the QT, he’s probably on the spectrum himself. He certainly showed no ability to understand another’s POV or be at all empathic in his dealings with us, so he seemed to me to be just another NT bully.
“Inclusive” JCCs have ignored my kids when they were victimized, talked to caregivers instead of to the person, and excluded based on perceived “severity”. Their staff also showed clear racism when dealing with a 1:1 who attended a camp with our son, and the resultant bullying stressed our son sufficiently that he became physically ill and was hospitalized.
An “inclusion director” failed to adequately plan for full participation, made biased decisions based on gender and parental employment, and threw my son out of a program and the building, leaving longstanding PTSD. (I wrote about that two years ago for Autistics Speaking Day.) In the course of that horror show, a nationally known “expert” on inclusion was not permitted by the local Jewish Family and Children’s Service, her employer, to advocate for our son’s inclusion.
While this debacle was going on, an organization funded by the Foundation sponsoring the inclusion summit gave the JCC an award and included them as a resource for “inclusion best practices.” When I pointed out that their definition of “inclusion” included Special Olympics, a segregated Jewish studies class, and a segregated singalong group, there was no apology, just the excuse that the books had already been printed.
This year, the JCC- chartered Scout troop, while claiming to “include Scouts of all abilities” shoved our son out, its leadership becoming irate when the Boy Scout Council’s inclusion experts told them many of their actions and claims were just plain wrong. My son is still a proud Boy Scout. He belongs to a troop in a nearby small town, most of whose members had never even met a Jew before we showed up at our first meeting. One more tie to the Jewish community has been severed, as a direct result of its attitudes and actions.
Now, our only tentative tie to any Jewish community is through a small congregation whose events we attend infrequently, and occasional community events, as long as they are not held at either local JCC. Regardless of the best intentions of an East Coast Foundation, over a thousand miles away, I doubt that this will change. Our experience has proven otherwise.
Will participants in the "summit" listen with open hearts and minds, or will it be more of the same window dressing? The jury is still out.

Our Autistic Future

Thank you so much for having me, and I have to say that it’s an honor and a privilege to speak to AAGW. I am profoundly grateful to Mark and Chuck and the other founders, leaders and members of AAGW for pulling this group together and making it a reality. This being your 10th anniversary, it’s important for us to take a moment and realize that the Autistic community has grown a lot over the last 10 years, as Autistic people in all of our diversity become more visible. A decade ago, it was a really scary and unprecedented thing to try and pull together a meeting of Autistic adults. I remember what that was like – you do too...

You can read the rest of Ari Ne'eman's post on Sometimes a Lion.

Acknowledging Me

This piece was originally posted by TuttleTurtle at Turtle is a Verb.

How my body moves determines how much I know.

I mean, I know this to be the case, because of how I interact with you. The same person, the same people, but completely different interactions. How my body moves determines if my words are worth hearing, or if they're only to be discarded, into the abyss of "we're trying to fix the autism".

If I rock, or sway, or so much as tap my fingers, then how can I make decisions? I don't know that much. How could I? You decide so. You know this about me. You know that people who move like me do not know how to do such difficult tasks.

Yet if I'm still, I can lead. I can provide new information that none of you have seen before. I can teach, and share, and you listen to me!

You. The same people. Depending on my movement that day.

Because how my body moves must determine how much I know. Not the words I speak, not the thoughts I think.

It must be how autistic I look.


Ironic, it is, that these movements regulate me. These movements organize me. These movements help my thoughts fit their pieces together into these words that you hear.

Ironic, that while they don't determine how much I know, they determine how well I can use what I know. And yet, if I am in a state where I am using this self-regulation, then I am deemed not capable of knowing this information. Not capable of knowing about autism.

Ironic, that making it easier to think, easier to share, easier to know what I'm saying, what I'm doing, how to exist in a world not meant for people like me, makes me know so much less in your eyes, that I should not be listened to, even about people such as myself.


But, how my body moves, doesn't actually determine how much I know, and you can't see that. You only see the stigma of a diagnosis, not the person in front of you. You don't see the same me every day, only that who you want to see.

I'm autistic every one of these days, moving or not moving. I'm the same person, with the same strengths and same impairments; same job and same college community; same interests and same need to teach and share and improve myself and what is around me.

I'm always Tuttle.
The same Tuttle.

I'm just actually autistic, and it's sometimes harder for you to pretend that I'm not.

Reward and Consent

Dave Jersey submits the following posts on his blog Reward and Consent.



"Interview, essay: Anna Kosovskaya escapes the Judge Rotenberg Center of Applied Behavior Analysis electroshock "treatment/torture", her self-reported adventures with interviewer analysis.

Behavioral Ethics essay: My one day of electric shock was worse than 36 years of antipsychotics.
Advocacy motivation: Judge Rotenberg Center's Achilles' heel vulnerability is the truth about Applied Behavior Analysis' electroshock torture.

Trigger Warnings for Discussion of ABA, of the practices in the Judge Rotenberg Center, of electroshock, torture, and medications.

Autism has a ‘voice’, and it is getting louder

This piece was originally posted by Malcolm Mayfield on autism-Star.

There is a shift taking place in the world of autism; one of many that have occurred since Hans Asperger first created the term. Some of the previous shifts have resulted in advancements towards autistic acceptance. Others have added to the unfair stigma that society still attaches to autism. Unfortunately to date the latter has overwhelmed the former.

When you have a media that values emotional stimming over truth, a support community that is addicted to using enhanced negativity to justify the need for more funds, and an ongoing debate over vaccines that has adopted autism as a piñata that ‘needs’ to be thrashed brutally and perpetually, there is little wonder that autism has become a stigmatised word. The autistic community, those of us with a diagnosis or an association with the vast autism spectrum, is beginning to stand up and show that it has its own voice, a voice that must be heard and responded to if the organisations that make up the autism community want to remain relevant within the next decade and beyond.

It has already started. Soon autism support organisations which do not include the voices of the autistic community will fade into memory and become irrelevant. More and more self advocacy groups are emerging every day. Institutions that demonstrate ignorance or misunderstandings of the needs of autistic individuals are being very publicly named and shamed through an ever militant social media machine. Yes, there is an imbalance in the shaming too as truth becomes distorted in clouds of anger, blame, misinformation and hysteria; but to deny that this response is the product of an increasingly frustrated community is to deny that there is a problem in the way in which autism is perceived in society.

On the plus side, there is a growing number of autism organisations that have recognised this shift in awareness and attitude who are making the necessary changes to survive into the 21st century and beyond by including autistic individuals and organisations as essential participants and as part of the governance of such organisations. By giving the voice of autism a say in the focus and direction of research, intervention and inclusion in society, these organisations will be the ones to grow and flourish.

Autism has a ‘voice’, whether it be spoken, typed, signed or behavioural. When you learn to understand the language of autism then you can start to appreciate the beauty of that language.

Coming out, telling friends and family you communicate using AAC

This post by AutismDogGirl was originally posted on Non-Speaking Not Silent.


Recently I have found myself struggling in needing to talk to more family and friends about AAC and my need for AAC. It is something that for me is often scary, it is frightening to family and friends about your need or preference for using AAC to communicate.  It is scary not know how they might react but it can be even more frightening when you do have some sense on how they might react, so for Autistic speaking day I want to talk a bit about coming out on AAC use.

For those who do not yet know AAC stands for alternative augmentative communication these are non speech based forms of communication, some examples would be Sign language, Braille, picture cars, letter boards and  dedicated speech devices or tablets with communication programs on them, but so too body language, books, news letters, emails,, notes letters and even the Internet are all also forms of AAC . So in reality everyone uses a form of AAC, this is something most people don't seem to realize, and even though people almost everywhere use and even rely on some form of AAC daily, the forms autistics may use such as using a tablet to speak are all to often met with resistance 

When it comes to Autistics who have little to no verbal speech at all Often we and our families struggle and have to fight to gain access to AAC. All to often there is a fight just to get AAC methods covered or provided through insurances or through school,  there is all to often the idea that an autistic must prove we are capable or here before anyone is willing to believe in us, or to see us as capable and worth putting funds and efforts towards providing AAC,  this is an attitude that needs to change! Often when a family wants to look into AAC for their loved ones they will be discouraged by being told it is to costly, their child needs to prove themselves first or worst of all they are "to severe" to learn or use AAC or it might "hinder the preffered verbal speech" this is something that has been proven to be wrong and it has actually been shown on several occasions that implementing and providing a comprehensive AAC system, modeling how to use it in many individuals has encouraged verbal speech development. But far more importantly it provides a path to communication and let's our voices be heard,  even when a school or insurance provides AAC it can be a fight to get friends and family to accept the need for AAC, they may try and push for speech, AAC isn't valued like speech is and our basic rights may be Violated by having our devices or AAC tools taken from us as punishment especially when we are struggling, having a bad day or just are in a terrible mood!

While people might be familiar some with the struggles in getting  AAC for those of us who are non verbal or minimally verbal, there is a side that is rarely known about and almost never discussed are the issues Verbal Autistics experience in getting access to AAC, as well as the issues we face in getting people to both understand and  accept our use of AAC for communication. when we have some level of speech especially when people outwardly view our speech as being good or even exceptional speech we are not perceived as having any communication issues or challenges, and it is often believed we don't need and won't benefit from the use of an AAC device or system!

The truth is when we may seem to have adequate or even excellent speech we may still benefit from AAC and believe it or not in spite of having great speech in some cases we still may really NEED to have and use an AAC system. There are many Autistics I have spoken to and know many other Autistics who use AAC when they lose the ability to speak, something that many "verbal"  autistics actually have to deal with, when this happens we can't speak period, this is a situation in that the need for AAC should be pretty clear!  However people often will not believe that there is a real need for AAC and will often accuse us of "faking it", "seeking attention" or trying to avoid something by not answering when we truly can not.

For many of us despite  having some speech or even having good speech we still struggle on a daily basis to use our speech to communicate and though it isn't obvious, things people assume we are able to do such as expressing our needs or describing things or events, we struggle to do so through speech and may be unable to express those things through speech even when we are able to tell you all about something we love, but through the use of AAC we are able to communicate these things far better then we can through speech. In fact there are many of us who have a brain body disconnect that means what we can get out of our mouth is far less then what we want to or are trying to express, and sometimes it will be in no way related to what we were trying to say at all, 

this is something I struggle with a lot, I also tend to lose the ability to speak often in stressful situations but also in over load and sometimes for no reason at all. For me speech also causes a lot of issues and impairs my ability to process visual information, and actually causes many challenges and impairments for me that I have written about in other posts, for all these reasons, even though I gained speech after being delayed in speech as a child  I gave up the use of speech except in a few special situations, this wasn't something I decided over night, it was something I put a lot of thought into and discussed with doctors therapists and  a few close friends and family. I won't go into the whole story here as I have detailed it in another post, the short version of it was after a lot of work and testing it became clear my ability to communicate and do so effectively  through AAC  was significantly greater then my ability to do so through speech, we also found that after long periods with out speech a few areas I had severe impairments showed marked improvement though far from being completely fixed, things such as awareness of my environment coordination body awareness all improved, though I still struggle with them when I use verbal speech for a long time these become much more impaired. So it was agreed upon by my doctors, therapists, friends and family and even my mom! that  inspite of having verbal speech i do in fact need AAC and I benefit substantially using it op as my main form of communication,

While I have the support of doctors, my mom and a few close friends and family, There are still people in my life who i don't typically see often or interact with much that I still need to discuss this with, and with whom I need to explain everything to, Until I am able to talk to them about this I often will turn my verbal speech back on when interacting with them, This can be hard for me to do and is very stressful, I often feel like I am hiding part of who i am from them and sometimes this can sen me into a spiral of doubt about my need for AAC, even though that is silly, it happens because the whole time I am with them i am trying to figure out how to explain it all to them, I am thinking about all the things they might ask or say and i need to plan out how to reply to those things and I also need to think about the criticisms i might get after explaining it all so I can be ready for them, I know this will take time for the people i am explaining it to to understand and process, so i worry about that too while scripting how to talk to them and all to often i fail at getting it out,  So even though I have been using AAC for my primary form of communication for a while now I am still  needing to  discuss this with friends or family members who have known me for a while and who know me as being "verbal."  I need to find away to explain this to them and hopefully help them understand and accept AAC as my primary form of communication and really how i need to communicate.

 This is something that can be really hard to get people to understand. There are still people in my life who I still am struggling to get to understand, I know I am not alone in my struggle as a Verbal Autistic in having my need for AAC be understood and accepted, I know this is a struggle almost all verbal Autistics often have to battle with when they use AAC,  weather it is for short periods, on occasion,  as their predominant form of communication or to simply help them express themselves better when they feel it is something they can communicate better through typing;  using AAC will  often be met with resistance, doubt and criticism,   Here are just a few examples of the criticism and challenges verbal Autistics that use AAC may face  when using AAC or discussing their desire or need for AAC with friends and family 

Criticism

"You don't really need that"
"Then they will never talk"
"Your faking"
"You may loose verbal skills"
"But I love your voice"
"It's inconvenient"
"Your just doing it for attention"
"But you never needed AAC before"
"You only have mild autism you don't actually need this" 
"that us only for people who can't speak at all"
"You speak fine,"
"You don't really need it there are other with real autism who can't speak at all,"
"At least you. can speak" 
"But it's so slow"
"But You can't use it while you work" 
"But i know someone who has a relative with severe autism who can't use AAC or speak at all so you shouldn't use it, you don't really even need it"

Theses are only a few of them there are many more but I'm to tired to remember them.  But these are things we often hear, when a verbal autistic comes out to you about needing AAC 
remember when you send a text or an email out on Twitter or face book you too are using a form of AAC,  everyone has the right to use their preferred method of op communication, 

When I first came out to my mom she was very skeptical and I promised to use speech with her in private, with time she saw the difference using AAC  made for me and the ways in wich it improved my ability to communicate and my ability to manage in times i would have otherwise not been able to, over time I have slowly come out about my need for AAC to others and I have had a mix of reactions.over time my mom not only accepted my use of AAC but she was very supportive of it and that meant the world to me!  Still I have people I need to come out to about my need for AAC and that scares me, I worry they won't understand, but I can't keep using speech with them just because I am afraid to talk to them, it isn't being true to myself, it is harmful for me to do so and it takes resources I need just  to be able keep up the verbal speech for them. 

Coming out as an AAC user is hard and scary especially if you have verbal speech,but we need to be able to come out to you,   Please keep in mind not to use any of those phrase I listed in criticisms  

The truth is most of them are wrong and all are damaging. Many of them comparing the verbal autistic to another autistic you perceive as having it worse are not only hurtful they are degrading and insulting to both autistics, the verbal AAC user and the autistic you view as more severe. Both have equal right to AAC, everyone has the right to their preferred methods of communication, please also remember just because someone can't speak it doesn't  mean we aren't communicating! Behavior IS communication!! Presume competence in all cases of autism!! I can't stress this enough!

Please do not compare us to other autistics to dismiss our challenges that's not ok and it is degrading to them overlooking their strengths and their value as a person. the truth is if we are coming to you and telling you we want to use AAC or that we need it, it is because we do need it, please understand this isn't for attention and we do have real challenges you aren't able to see yourself, telling you about our need for AAC is terrifying and what we want and need the most is your support and understanding. It means everything to have that. what we truely want and need most is acceptance,  even if you may not agree with it please do your best to be understanding, trust us and supportive. The thing we need most is your Acceptance not judgement.

Thank you


News report action alert: Association for Behavior Analysis International "approves" Judge Rotenberg (electroshock "treatment/torture") Center.

Dave Jersey posts "Original research: News report action alert: Association for Behavior Analysis International "approves" Judge Rotenberg (electroshock "treatment/torture") Center." originally posted on Reward and Consent.

Trigger/Content Warning for discussion on ABA and the Judge Rotenberg Center.





This information was published by ASAN about two days after Reward and Consent broke the news. The connection between ABAI and JRC was established by autism researcher Michelle Dawson many years earlier, but ABAI was denying any official approval of JRC. This is the first time this has been proven and exposed to the World Wide Web, the official approval of JRC by the biggest Applied Behavior Analysis organization in the world. JRC uses painful electric skin shock contingent upon non-compliance, classroom disruption, self-injury, and aggression, but JRC's own admission, to autistics and others with disabilities. I'm a proud schizophrenic blogger.


Building Hope

Kit Mead from k-pagination (tumblr) and Paginated Thoughts has sent in the following piece!


Building Hope



My first experience with neurodiversity was something built gradually from the ground up. It built itself around social connections first, and someone driving me to a public lecture on autism and neurodiversity. Gradually reaching out and pulling together a community. It was the beginnings of what would be the disability student group on campus and my ASAN chapter.

It was a revelation, to say the least. I learned about an entire culture (http://iamthethunder.tumblr.com/post/82856793894/autistic-culture). I myself fell into it hard and fast but the community took a while to build locally.

I am proud of what everyone involved in all that has accomplished.

***

The Internet has always been my second home. I started an “autism blog” in 2013. I had been on Tumblr before, but not knowing about neurodiversity and mostly reblogging things like cats.

Autistics have a lot of pain to work through, which I have seen flashing up all around me. We have a lot of trauma and ours is the history of a group maltreated. Having pain to work through is fine.

We do have a community, diverse among its interests and identities. We have more people discovering how their brains work every day. It is important to cultivate a disability identity in people carefully and with kindness. Autistics have a lot of pain to work through.

***

Autism is a neurotype, not a political belief system or other set of beliefs. We share a neurotype. We are diverse. We have pain. We have different opinions. I've seen us come together on a lot of issues and part on others, recent though my addition to the neurodiversity movement is.

***

The reason I joined neurodiversity was because someone found me and realized that I could contribute something. They helped me learn, slowly, to create an identity out of disability. I read everything I could get my hands on. I came into neurodiversity when the community was speaking out even louder than ever against groups like Autism Speaks. I embraced it.

I was fortunate. I managed to pick up what words to use and had some talent with writing that lent itself well to blogging. I had someone patient to teach me. I joined neurodiversity because someone helped bring me into it. I have hopes for this community. In some areas, I fear for it. The splits seem wide in many areas.

***

There are many types of advocacy and activism.

For instance: resistance can be self-advocacy. Self-advocacy can be resistance.

If you write just one blog post, you have contributed. If you're not on the front lines and doing spitfire activism, and are quieter in the background, you have contributed.

Some people would argue that “quiet activists” do no good, but I disagree (http://k-pagination.tumblr.com/post/128704249984/activist-burnout).

We have room for all kinds of activists and advocates in this community. Some are newer, and perhaps we could learn to handle each other more gently.

We Are Valid We Are Humans

Data has submitted the following:


"We are valid we are humans and we deserve to be accepted by people .
Autism is not an illness it's just a different brain with special functions."

Thoughts On The Spectrum

Ultimate Oddball has submitted a YouTube channel and "Thoughts On The Spectrum" Playlist, specifically the video "My Life So Far".

Youtube Channel: https://www.youtube.com/channel/UCVUqh7VMzHYuAp4G1Qb1Vog 'Thoughts On The Spectrum' Youtube Playlist: https://www.youtube.com/playlist?list=PLo87IJ5XFbKUNrqjdB0Z2VaRKN7b7aJDf Website: http://ultimateoddball.wix.com/home Video Transcripts: http://ultimateoddball.wix.com/home#!video-transcripts/uss92 Guide to Conversation: http://ultimateoddball.wix.com/home#!guide-to-making-conversation/fd2xh


Content Warning for Medical Issues and mental health.