Daily Question

 Giraffe Party has posted Daily Question: What is something truly meaningful and genuinely helpful allies can do (or do differently) to better advocate for you and bring positive change toward your life? on Facebook

 Check it out here [link] 

#AutisticsSpeakingDay - Autistics Speaking in 2020

 Jane Strauss posts from Facebook

Content Warning for mentions of politics

#AutisticsSpeakingDay - Autistics Speaking in 2020

For years, one of my “Autistic Superpowers” has been my ability to tell when people are lying, or in some way out to screw others. Often NTs were upset by this, because I'd directly point out my observation, Almost thirty years ago my track record at this got me the “Ignore me at your peril” award from a community organization in which I had been involved for some years.

#Autisticsspeakingday, tenth edition

Jane Strauss posts #Autisticsspeakingday, tenth edition on Facebook

Here we go- and one more time, autistics speak on the interwebs, in our own voices.

The original Autistics Speaking Day was conceived in response to a poorly conceived allistic-designed attempt to mimic what it is to be an autist. It seems they thought that if people gave up internet communication for a day, they would know what it is to be an Autist. Ironic, as most of my autistic community 9and that of many others) is centered on the Web. So, some activists (can’t at the moment remember who) came up with the idea that we would bombard that same web with our own thoughts, feelings and concerns. We have been doing that ever since.

Landmark anniversaries are often used for taking stock of progress or changes, and I think I’ll do a little of that. What is different from 10 years ago?

Ten years ago autistics were bringing to the attention of the general public how hateful and organization self-named as Autism Speaks was, hateful of and to autistics. We were pointing out that it had no autistic people on its Board, and less than 2% of its budget actually provided assistance to autistics or our families. As of their most recent available IRS 990, a year ago, AS has a single #actuallyautisticadult on its Board, term set to expire at the end of 2018, and about 1.5% of its budget actually goes to services and grants for families and autistic people. No significant change there.

Ten years ago, autism was represented as a malady of little white boys. Now, adults, females, and nonwhite people have been recognized as being impacted too. More of us are now in the professional limelight as well. So, some improvement.

Ten years ago, the manipulated research by Andrew Wakefield attributing MMR immunizations as a major cause of autism was still widely available. It would be close to another year before his research was discredited, the paper retracted, and his medical license revoked. Unfortunately, despite these actions, a significant number of individuals continue in that false belief.

Ten years ago, schools were pretty regularly failing to comply with IDEA, provide free and appropriate public education, and meet students’ needs. There were significant reports of abuse. Especially low income and nonwhite special education students were likely not to graduate, and to end up in the juvenile or adult correctional systems. Unfortunately, though there are now more specialized programs for autistic students, failure to provide adequate education, ongoing abuse, and the school to prison pipeline still make the news at least weekly.

Ten years ago, there were a few small organizations of, by and for autistic adults. Now there are more, and a number of publications have been developed collaboratively by these organizations. There has definitely been improvement in the area of advocacy and program development.

Ten years ago, I had been formally diagnosed only five years before, thought I had found my people, and was attending autism conferences. In the intervening ten years, I have come close to burnout, found that my dual status as Jew and old enough to be the majority’s mom or grandma seriously limited my enjoyment and acceptance by those people, and decided that the age gap may be too large to bridge and I lack the spoons to continue such attendance. Verbal abuse and unjustified assumptions about my beliefs and motives contributed. This is neither bad nor good, it exists, and I wish those folks well in reinventing the wheel without counsel.

Ten years ago, when autistic students aged out of the K-Transition programs, they fell off a service cliff, unless they were extremely brilliant, came from a wealthy background, or both, and could use their exceptional thespian skills to successfully fake neurotypicality. Now, the cliff is still there though every day or two I see people posting about another nice nonprofit with a day program (with or without any employment training, and usually without pay for the workers). Invariably, when I point out these warts, I am tone policed and told that they mean well and we should accept the crumbs thrown at my community. Meh.

Ten years have passed. I am older, tireder, presumably wiser, and still fighting a social service system designed to keep disabled and low income people in our place. That system, under el Tangerino’s Regime, is far from improving. Our family situation has improved marginally, no thanks to the organizations claiming to exist to better the situation of “people with autism” (as if our neurology is somehow separable from our essence). We have all been diagnosed with immune dysfunctions that we are trying to treat but which explain a lot. I have had more experience in using the doublespeak required by Governmental Agencies and Programs to justify their limited largess. The biggest challenges still are garden variety helpers, though an exceptional one will sometimes show up. I am thankful that my son has aged out of the tender mercies of the Minneapolis Public Fools.

Ten years ago, our state had no governmental organization oriented to the specific issues that autism raises. Now there is a quasi-governmental group, I participate in it, and the jury is out as to its impact.

Ten years ago, I still had hopes of getting back on a career track. At 65, that seems less likely.

Ten years ago the engine of Autistic Adult Energy had just begun to roll. (There, I finally relate this to the photo at the top, and a common interest for many autistics) It’s been slow to pick up speed. Perhaps after another ten years, the Neurotypical Ruling Class will develop some level of empathy and our lives will become more livable. Perhaps then the average age of death for autistic adults will approach that for the Neurotypical population. Perhaps then it will become more possible for autistic people to follow our dreams, work for income, pay the bills, live included in the larger community and be understood as the unique individuals we are.

Maybe in another ten, or twenty, or thirty years there will be no need for Autistics Speaking Day. We can but hope.

How do you see me?

Nora writes How do you see me? on Nora W - The Self Aware Autistic

Content Warning for Anxiety and Overthinking

- Now That You Know -

Now that you know I’m autistic,
how do you see me?

Do you just see my anxiety and awkwardness?
Do you judge my miscommunications and lack of social awareness by normative standards?

My facial expressions mismatched to my heart.
My volume not modulated properly.

Am I made up of more than
my reactions?
my emotions?
my inability to communicate without wearing my heart on my sleeve?

Am I valued?

Am I worth more than just
my talents?
my abilities?
my dependability?
my loyalty?

Do you see me
paralyzed by social anxiety?
unable to reach out
to initiate conversation?
longing to be included?

I try.

It takes everything within me to speak.
to find the words.
to take a chance on being seen.
to stay.
to not run away and hide,
out of sight.

I still fail.
I try.
I fail.
I try again.
I still fail.

I just want to sit here
and stop trying so hard,
but I don’t have it in me to quit.
God won’t let me.

I want to turtle up
but I can’t go back in that old shell.

Everything I’ve done
has been to get me
further away from where I started.

Am I still unnoticed
except when I melt down?
Am I still unwanted
except when I have something to offer?

Can I just be seen
Can I just be liked
Can I just be wanted
Can I just be accepted
Can I just be included
for being me?

(C) Nora W - The Self Aware Autistic

#Autistics Speaking Day

Jane Au Strauss writes #Autistics Speaking Day

Trigger warning:  Violence, domestic violence, chemical restraint, PTSD

#Autistics Speaking Day

It completely slipped my mind that today was “Autistics Speaking Day” - likely because my unwillingness to toe anyone’s party line has apparently gotten me out of the loop for such information. So maybe this will show up somewhere else or maybe not.

These days, I find increasingly that I am neither fish nor fowl. Definitely not NT - and due to my situation, not easily fitting into the world of the “autistic activists” few of whom are parents, and fewer of whom seem to have offspring who have ever presented significant behavioral challenges or been anything but delightful. Thus, they cannot relate to my world or my experience.

Autistics Speaking Day yet again

 Jane Strauss writes Autistics Speaking Day yet again on Facebook

Wow.

This year I was caught unawares. Probably because part of the “inner circle” of Autistics has, in some ways, decided I am not valid enough to be informed. I don’t fit with their “social justice” which holds that Parents have to be their kids’ friends, that my people are less valid in our indigenous-ness than groups which invaded the Levant over a thousand years after our civilization developed there, that my unapologetic cis hetero nature and old fashioned understanding of pronouns are somehow evil. I am not “successful” enough as they define it, to be a valid presenter in their events. I am not made in their (often decades younger) image.

But guess what?

I am still autistic, still a parent, still Jewish, still a fighter. I have gone back to fighting locally. I have retreated from the conference circuit. I am not wasting my time on the Large Established Organizations, whose primary purposes seem to be erecting a barrier between “professionals” and “clients” actually living with boots on the ground, placating (neurotypical) parents and professionals, and perpetuating their own existence. I have become disgusted, in this very political year, with all kinds of politics - organizational, interpersonal, national and local. I have retreated into the shadows.

I have begun working with some others on a new kind of organization, one which may be flexible enough to develop new models, responsive models, respectful models of support.

And, at bottom, the same old same old continues.

Autistic adults ask for help - and it isn’t what the World wants to give.

Schools, health care, government agencies ignore legal mandates while grabbing funds, cranking on their merry way.

Autistic kids are forced by the Powers That Be to see themselves as broken.

The world turns, what goes around comes around, somehow, something has to change or give, though there is no apparent human response on the horizon.

And in other news, the sky appears blue.

Tom (Autistic Genius) sends in the following via email:

(please be aware that all the content on the following links have not be viewed for trigger and content warnings)

Hi guys 

My name is Tom I'm 26 and have Aspergers Syndrome, I've created a youtube channel, facebook page and blog all about raising Autism understanding.

Facebook page:

https://www.facebook.com/Autistic-Genius-972803429415782/?ref=hl

YouTube Channel:

https://www.youtube.com/channel/UCdBu3o9ZvlD5oadvvzLTZsg

My Blog:

https://autisticgeniusblog.wordpress.com

Hope it's useful and thanks for a great cause.

Many Thanks

Tom

(Autistic Genius)

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.

Insult or Compliment?

Jane Strauss Âû writes on Facebook: Insult or Compliment?

For weeks, I have mulled over what to write about for this, my (fourth?) Autistics Speaking Day.  And finally, though this will not be a long note, the "aspergery-gate" fiasco did it for me.  

It has come to my attention that I am apparently not deeply enough offended by the statement out of the Obama Administration that Bibi Netanyahu, Prime Minister of Israel is "Aspergery."  Huh.  As someone who espouses Autistic Pride, I consider it disingenuous to call this an insult - in fact, given the many positive qualities common to many Autistics, loyalty, honesty, attention to detail, researching things, not being swayed by majority opinions or wild emotion....it is in my mind a compliment.  Any government could benefit by having more of us running things.

Meanwhile, I have seen a large number of people online and on FB decrying the use of the word as an insult.   Folks, it is only an insult if you take it as one.  It may have beenintended as an insult by the narrow minded and uneducated dolt who used it, but that use said far more about him, his manners, and his character than it did about the Prime Minister. This is the case just as Autism Speaks' budgetary biases and constant derogatory and eugenics-oriented statements about us speak volumes about them, and inaccurately about us.  And by engaging in these tempests in teapots, the Ruderman Foundation, "Jews with Special Needs,"  and many others  either gave credibility to the use of this term as a pejorative, or showed the world that, in their hearts of hearts,  they actually agree that ASD is a bad thing, no matter what their public faces say about "inclusion,"  "Person first,"   and equality.  

So folks, either you are part of the solution or you are part of the problem.  And if you validate the negative intention of this puerile member of the administration through your protestations, perhaps you should examine your own beliefs, which may have been unduly influenced by ableist social norms.  Consider that perhaps your reaction was rooted either in your own ingrained belief that disability is bad or your internalized oppression.  Consider that what you did furthers oppression of disabled folks.   Consider the possibility that with the best of intentions you have only reinforced existing discriminatory norms, and until you can internalize a positive view of "Autism,"  maybe the most helpful reaction would be none at all.

My Life in Singapore: A Message For Autistics Speaking Day

Ash Satoshi posts "My Life in Singapore: A Message For Autistics Speaking Day" on Facebook.


It is a very excellent post on living as an autistic person in Singapore, growing up with discrimination, bullying, dealing with divorced parents, and the factions of the special needs community.  


Please read. 

Mental Tides

Mental Tides by Laura/Light It Up Boo on Facebook

Today is Autistics Speaking Day. 

One thing that just came to my mind was that the autistic mind is like an ocean, in that we have high and low tides. This does not mean "functioning level". It means sometimes it takes a lot more effort for me to do something like remember to eat or bathe. Sometimes it's easier to do these things, and sometimes it's harder. Being autistic means it's never automatic for me to do these things. My energy levels, or tides, change over various lengths of time. It is affected by things like my mood, what activity I am currently doing and how much energy it takes, how my physical body is feeling, who I am interacting with and how, and what my surroundings are. These affect tidal levels in my mental ocean. Sometimes a storm arrives and makes it harder for the tides to stay where I expect them. This week I had one of those unexpected storms and it has been hard on my executive functioning. I am hoping this storm will clear up soon because I have other tasks that I can't neglect.

I am Autistic and I am Tired

I am Autistic and I am Tired by Steve Summers on Facebook

Today I feel tired. --

Tired of being rejected.

Tired of being ignored.

Tired of being excluded.

Tired of being treated like an outcast.

Tired of being treated like a misfit.

Tired of feeling like others look down on me for being different.

Tired of being expected to try and act 'normal' to have a 'normal' life. -- I am not 'normal.' I am Autistic. 

Tired of people who think that just trying harder will make Autistic people 'more normal.' -- Would you tell a blind person to try harder to see? Would you tell a paraplegic to try harder to walk? Would you tell a colorblind person to try harder to see the colors that they can't see? 

Tired of people who don't understand Autism and who don't make any effort to learn about Autism so that they can cure their own ignorance.

Tired of people who refuse to accept Autistic people just as they are. 

Tired of people who presume incompetence. 

Tired of neuro-bigotry. 

Tired of the silence of others. Silence is *not* support. 

Want to help us? -- 

Listen to Autistic people.

Make an effort to learn about Autism.

Educate yourself about what we go through each and every day. 

Learn about how negative attitudes make us feel.

Practice Autism Acceptance.

Accept that we are different, not less. 

Accept that we are different, but *not* defective. Don't try to make us into a poor copy of your idea of 'normal.' 

Accept that we are okay to be ourselves -- just as we are. 

Accept that we are  humans with feelings just like everyone else.

Accept that Autistic rights are human rights.  

Presume our competence. 

Don't avoid us, include us. 

Most of us have have social anxiety. Please be kind and reassuring to us.

Please reach out to us. We won't often make the first move after suffering from a lifetime of rejection, exclusion, and being bullied.

Please practice inclusion. 

I am Autistic and I want to be valued and accepted for simply being me. 

Jane Strauss writes Autistics Speaking Day on Facebook

Trigger warning for mentions of abuse

Today is Autistics Speaking Day. 

It was instituted in response to an "interesting" assertion that somehow, by going offline for a day non-Autistics would suddenly have a clue of what it is like to be Autistic.  This is a particularly egregious sillyness, given the huge Autistic community that has grown up online based in part on how many non-speaking Autistics, given a keyboard, not only communicate but are darn eloquent about it.

And do we need it?  You bet.

Autistic FaceBook Comments

We had a couple of participants make comments on Facebook.  I thought that we should make a post, just for them on the blog.  
 

Facebook Comments

Amy Ouellette

I don't have a blog so I'll just post on here :D

I'm 23 and have had Asperger's since I was five years old. I spent years getting Occupational Therapy services when I was younger and Speech Therapy services until I graduated from high school, which has overall helped me in many ways. However, I also feel like sometimes having gotten those therapies had only helped me to learn how to act like a neurotypical when I know I'm not an NT and am never going to be one.
My viewpoint on having AS, however, is mostly a nuetral/positive one :) I have my good days and bad days just like every other person. I feel like having AS has helped me be more empathetic towards other people who feel like they're different from typical people. I feel like my passion for advocacy would disappear if I didn't have AS, which is what I don't want. 

 

Also, since I can't have more than 1,000 characters in my wall post, my family and friends who know about my disability have been supportive the entire time and am grateful for them having faith in my abilities even when I don't always believe in myself :)

Thanks for giving me and other people on the spectrum a chance to share :)

Lorrie Koehler

I dont have a blog, but I will just say..Yes I have autism. Sometimes high functioning other times??? There are adults who grew up not knowing what was
so different about them only knew they were different. I am one of them. I
was diagnosed about a year ago. Glad I finally know and can just be myself.
Physically I am forty something.........Mentality ?????? I guess it varies. Just wanted to speak on Autistics Speaking Day.

Jo Qatana Adell

What I don't understand is why people who suddenly become affected by autism get so angry with me. Is it because I can speak for myself when their loved one can't/wont?

Glyn Steiner

I do not have a blog either. My word to others is this: Asperger's syndrome greatly affects my decision-making. And finally I have a mentality of a teenager.

Nadine Silber

I don't a have a blog so I will need to just post something short. So here it is "on one foot" so to speak - good self esteem is even more important than good social skills. Afford people dignity. Do what you enjoy. Be happy with who you are.

Diane MacNaughton

Let us Rejoice in our Autistic Voices and let everyone know it is Autistic speaking Day!!! And whoever we meet let us tell them of this great day!!! And that we are all different and can communicate in different and glorious ways.

CarolAnn Edscorn

New employee at work last night. Chatty chatting chattering at amazing speed. I asked for insight from a manager. Next time I go into work, using my auditory recall of topics (mostly past jobs & people SHE knew) I will have a list of topics of my OWN for sharing. Chatting is seldom sharing. But I think I can help this shift. This is a moment when that central coherence thing - attention to DETAILS - may help! Do people blather as a habit or as a result of fear and anxiety? The puzzle piece applies to us understanding neurotypicals as well as their understanding of us! Smile--it makes others wonder what you are up to! THANKS

Dàibhidh MacNiocail MacAindreais

i have done nothing for today. my life is in such a bloody mess that it's impossible to do anything. reason for this is the total lack of appropriate actual support that one gets in Finland was a foreigner with a disability: the Finnish system hates foreigners and hates the disabled, and if one is both - then life very soon gets to be a burden more than a joy.

John Greally

‎"I wanted my Johnny to grow up able to communicate for himself and to be independent of his parents. When he grew up he told me he did not want me and my husband running the local Autism Group while he was being "provided for" and his "best interests" taken care of by "those who know". I then realized that my task was not to have raised an independent communicator, but a crushed mute."

Jodie Gray Rosenblum on ASDay

This is Jodie Gray Rosenblum's post through Facebook.  You may not be able to see it if you aren't on her friends list but she has given me permission to paste it here.

Alright, so I decided that I'm going to participate this year in autistics speaking day for those of you who read my stuff. So... I've read some of my friends post already, and I guess in some ways this is a bit of a response.

There's a line in a song by Third Eye Blind, that goes "But we were broke and didn't know." and that sort of will be the basis on my rambling here today. Well... we weren't broke/and we're not broke (though some people think we are, if you don't believe me check your local bookstore), but for some of us we didn't know right away. To quote another song "Some say its a blessing, some say its a curse." might be said for those who got the diagnosis as older children, teens, or adults. Some people feel that if they were diagnosed younger maybe things would be better for them now, some people feel it's a blessing they weren't diagnosed younger and subjected to hours, days, and years lost on therapies in their childhood. I think that I'm one of those who's more of the latter opinion. I really like songs, so bare with me on the heavy song references throughout the post please.The song "American English" by Idlewild says "Maybe you’re young without youth , Or maybe you’re old without knowing anything true. I think you’re young without youth" and "Sing a song about myself, keep singing the song about myself. Not some invisible world." I think that today, some of us are doing that second thing. Not everyone's post look the same, in fact a lot are in different styles from other's contribution. Just like how everyone is so different, autistics, the larger neuro-diverse community, and neurotyicals (and I do really mean everyone).

 I know I have some friends who seem to live in a world where asperger's syndrome or PDD-NOS is placed upon some privileged pedestal and I normally don't publicly argue with them about this, but today here in my post I'd like to say: I think your wrong in your pedestal that you've created, I believe in creates a wall of separation that divides everyone.

 Finally, the last thing I think I'm going to attempt to touch on here.... are some brief thoughts on autism and empathy.  I know that some people believe that autistic people or people with autism (take your pick, I'm not in the mood to talk about this topic today) lack empathy or are incapable of having empathy. Maybe they read it in a book, or heard it from other people. I know some autistic others have contributed to the suffering of others by their own words expressing a lack of empathy. The merriam-webster dictionary defines empathy as "the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also : the capacity for this". I can't speak for others, but I know I cried the year I saw Scott Micheal Robertson's presentation on bullying at a conference back in 2010. One of the images he showed was a drawling by either a child or a teenager of that child going into heaven as an escape from the bullying and struggles of their every day life, heaven was a happy escape. On that day and that moment, I could say I've been like that person in the past. The experience isn't isolated either, I know I've felt the same when I've read stories of gay and lesbian teenagers committing suicide. I'd imagine that some of my friends have felt the same way too.

So, I'm going to end my note here with one final line from the song "Plea for a Cat named Virtue"- "And listen, about those bitter songs you sing? They're not helping anything. They won't make you strong.".

Final comment: For more on autistics speaking day, or to read other contributions, go to: http://autisticsspeakingday.blogspot.com/

The problematic Notion of a Cure

AutistLiam (@AutistLiam) has posted The Problematic Notion of a "Cure" on Facebook:

Firstly, Happy New Year to all pagans who celebrate Samhain, belated Happy Diwali to Hindus, Happy All Saint’s Day to anyone who celebrates that and Happy slightly-late Halloween to anyone who did that last night. And, of course, Happy Autistics Speaking Day to everyone.

Except many people won’t have heard of that last one. Today (1st November) is a day the Autistic community mark by speaking up, by writing, blogging, giving speeches or just talking to our friends about what it’s actually like to be autistic and about the challenges we face because of the unusual way our brains work and the joy that we find in our lives and even what we do all day. We do this because there are a lot of people and organisations out there who would happily talk for us and often talk over us. They make their voices very loud and put a lot of time and effort and money into getting people to believe what they want people to believe about autism – that autism is a “tragedy”, something that children and families “suffer from”, that autism is a fate worse than cancer or AIDS and that autism can be and should be cured.

A lot of autistic people, people like me, don’t agree. We don’t see the way we are as a 100% bad thing by definition. We don’t think it’s autism itself that causes us and our families to “suffer” – some of us don’t think autism necessitates suffering at all. We can see that cancer and AIDS are illness – and that autism isn’t. And we think autism can’t be cured and that it doesn’t need to be.

People often ask me “What is it like to be autistic?” This is quite a confusing question as it is very open and does not get to the point of what the person is trying to ask. Too often I find that what they really mean is the rhetorical question “Isn’t it really awful for you that you’re autistic and really great for me that I’m not?” but for the people who are actually curious I have a few answers.

          If I’m not feeling Socratic enough to ask “What’s it like being neurotypical?” my answer will go something like this: Imagine you’re at a party in a really crowded club. The music is really loud and everyone’s shouting to be heard over it. Lights flash on and off and they’re really bright. Now imagine a fire alarm goes off and everyone has to leave and quickly. But you discover the hard way that whenever anyone touches you a small electric shock goes through you. The lights are still flashing and no one’s turned off the music and all the people are crushing together around you meaning your skin feels like it might burn. People are shouting the directions to get out of the club but even if you can hear them they are talking far too fast for you to understand and you’re not sure they’re even speaking your language... Does that sound like a very unpleasant situation?

Well, being autistic isn’t like that all the time but it can get like that – except the loud music and fire alarm might be just children playing or the sound of rain against the window, the bright lights just fluorescent lighting or too much eye contact, the electric shocks might be caused by a gentle touch and the too-fast-different-language talking might be someone talking at a speed most people understand. My personal experience of being autistic is that some sensory experiences hurt, some of them always do, others only sometimes. And it adds up, the lights on the own might be okay but a loud noise might mean I need to leave the room.

          My experience of autism is of being very highly sensitive (on all of my senses) but not consistently. Sometimes I have no sense of smell, sometimes I find it hard to be in a room that had a person wearing perfume in it earlier. When I’m getting over-stimulated from the amplified sensory input I’m getting, I often wave my arms or twist my fingers together. Sometimes I bite my hands or hit or rub tables and walls with my hands and arms. I might make noises or say some words I like to say. Occasionally, I stamp my feet or hit my head on things. If I can leave the situation, I will.

          But I can’t ask to leave or explain what’s wrong or why I’m behaving strangely because the more overstimulated I am, the less able I am to speak at all, never mind speak clearly enough for most people to understand me.

          People will occasionally stop me here and clarify that they wanted to know about what it’s like to not have social skills. At which point I ask them whether they think it would be easy to learn how to socialise with people if they were trying to keep from getting overstimulated and were often told to stop doing any of the things they could do to keep calm. (I can understand not hitting things or biting myself in public, I can’t understand what people have against arm waving, feeling walls and finger-wringing). It isn’t easy to socialise with people with all this going on in the background, especially when people can’t respond nicely to me asking “Can you speak a little slower?” or “Can you make your question more precise?” and other people point and laugh if I wave my arms a bit.

          I find speaking difficult too as my brain goes much much faster than I can speak so if I don’t carefully say each word of what I want to say, I’ll say several different sentences at once and no one will understand any of them. I have a collection of words and phrases that I find easy to say and I say those often – it’s a short cut to make things easier.

          Because it’s not easy being autistic. But I don’t ever ever want to be “cured” and a lot of other autistic people feel the same way.

          Why wouldn’t I want to be “cured”? I just said that being autistic isn’t easy, don’t I want my life to be easier? Well, yes, I do want my life to be easier but I’m sure we all know that life isn’t easy. And “curing autism” and “making autistic people’s lives easier” are far from the same thing.

          One reason that the “cure” notion is problematic is that many of us find advantages to being autistic. For example, my autistic brain comes fitted with a brilliant memory, intense focus and unquenchable ability to learn. I’ve always had very strong interests and developed very good research skills to find out more about my favourite subjects and now I can use those skills to learn a vast amount about any topic in a short time. The way I think and speak is always very precise and direct which is very good for academic writing in Philosophy and probably in other subjects too. Though my directness can be misinterpreted as rudeness, many of my friends say they appreciate it and feel that socialising would be simpler if more people were as direct as I am. You did just read that, many of my friends feel socialisation would be easier if more people were autistic enough to say “I would like to be your friend. I would like to spend time with you and talk to you and hug you occasionally. Is that okay with you?” and expect a clear answer.

          Of course, a huge problem with the cure rhetoric is that it posits autism as an illness and in our society illness is seen as A Bad Thing That Is Always Bad. Autism isn’t an illness, it’s a lifelong neurological difference (or something very much like that, science may yet change its mind about what it is). Our brains work differently to how the brains of people who aren’t autistic work. We’re better than them at some things and not so good at others and all of us, autistic or not, are just trying to get along with our lives using our brains the way they work. It’s just that the world is a nicer place to be neurotypical than it is to be in a neuro- minority – the human world being seemingly built for people who rarely get sensory overload and can speak and say what they’re trying to say whenever they want to and who pick up easily on unstated social rules without having to study them and don’t need to concentrate very hard to follow them. It’s only ended up like that because there are more people who aren’t autistic than are and they forgot about us when they were making society and cities and religions and stuff. If we were in the majority, we’d probably forget them too. But having been forgotten and subsequently not fitting in is not the same as being ill. Autism itself isn’t painful (though over-stimulating situations are) and autism itself cannot kill you (though ill-advised “treatments” can, frustrated so-called carers can and depression caused by being constantly told you’re not good enough can). Autism isn’t contagious and it isn’t caused by a virus, bacteria or pathogen. Autism can’t be cured because the autistic aren’t “ill”; we just think a little differently and perceive things a bit differently.

          What I think is the biggest problem with the idea of a “cure” for autism though is what neurotypical people have historically and presently conceived of as a “cure”. Therapies, treatments, special diets, drugs and other “cures” have almost universally been measured by their ability or inability to make an autistic person “indistinguishable” from people who are not autistic. There are many problems with this. Most important perhaps is that, due to our differing ways of perceiving and thinking, what is healthy behaviour for a not autistic person can in fact be quite harmful behaviour for an autistic person. For example, if making my behaviour “indistinguishable” from my peers means staying in situations where I’m overstimulated without doing anything to calm myself down, it means withstanding increasing amounts of pain for the sake of other people. This leads to the second problem, a lot of the autistic adults I know have difficulty putting their own needs above other peoples (and yet strangely we are stereotyped as selfish) because they have learnt over the years that not-upsetting-people is so important that we must sit through pain for it, that other people’s desire not to be distracted is more important than our need to fidget, that other people’s disgust is more important than our spinning, flapping and chewing and other people’s need to ask pointlessly “How are you?” when they don’t even want to know the answer is more important than anything I want to say about stamps or trains or the fact that intersex people, conjoined twins, disabled people and people with dwarfism used to appear in Bestiaries. We learn, either explicitly or implicity, that how we are is wrong, is less, that how we think and feel and move naturally is Bad and Wrong and we are Broken. When all we are is different.

When “curing” autism means something different from “making autistic people look like everyone else no matter the cost” I might rethink my position on a cure. But for now I am autistic and I flap my arms and chew things and put my hands on my ears when things get loud. I repeat things I’ve said, I fidget and can’t sit still unless I’m deeply engrossed in what I’m doing, I don’t always understand what’s said to me and I don’t always say quite what I meant to. I can’t always talk and am learning sign language just to be able to keep communicating with my girlfriend when I can’t talk. I know lots about lots of things (though not so much about stamps actually) and I get on with my life. I’m autistic, I’m happy and I don’t want a cure.

Raw Emotion

Laura Eleanor ButLer made this post on Facebook:


My parents are wonderful people. They did not want to cure me, but I did. If I was normal, I would know how to ride a bike and nobody would force me to receive what I referred to as "optional therapy". They wouldn't leave me alone, because my parents were paying for me to recieve this undesired assistance. Why they wished to expose me to cootie-infested peers (by which I mean 'boys who were also recieving OT yet were somehow not miserable') I have no desire to learn. I did not belong among these cootie-ridden children, and whatever it was they were having us do simply made me feel worse because I knew if I was normal I would not be stuck there.

It still hurts, over a decade later. But I no longer wish to be normal. I simply wish for the next generation of autistic girls to suffer less than I did. There is a reason I believe in 'child-directed therapy'. Every autistic is different.


Be sure to read the rest for mroe details.

My Life with Aspergers

Jenn McGrath has written My Life with Aspergers on Facebook:

I do speeches on living with Aspergers from time to time and I want to get into it again.  So here is my life story on living with Aspergers.  Please pass this on.

Growing up was like a roller coaster ride for me, full of many ups and downs which were very difficult for me to understand.  I had struggles not only in my childhood but in my teen years as well.  I had a very difficult time in both elementary and high school.  I was struggling to be accepted and fit in with other kids but all I got was bullied and abused both mentally and emotionally.  I never had a chance to go school dances or the prom.  I never went to my graduation because of all the pain that I have endured.  I moved from Burlington to Hamilton in 1993 to start my life over again and move into a place called Woodview Manor which was recommend the person who saved my life.  A man named Dr. Peter Szatmari and also a man named Rick Ludkin.  I was scared at first because my self-esteem was low and my attitude was negative.  I was taught how to be strong and live independently like other people.  I started to make new friends and gain some new confidence.  I now go to the YWCA for my workouts.  I do yoga three times a week to learn how to calm the mind and deal with stresses in my life.  I also spin cycle, lift weights and volunteer there at least a few times a month.  I met some wonderful instructors and met some nice people that workout there.  I'm currently working as a receptionist at The Lawson Ministries Autism Centre.  It's a great job but it has some struggles and challenges in which I learn every single day.  The people there are really understanding of me and they help me out as much as they can.  I live my life like everybody else.  I go to work, I live in my own apartment, I cook, I bake, I clean, I run errands, I go to concerts and other events, I go to the movies and I travel to places like Chicago, Las Vegas, Toronto which is my favorite city to go to and shopping in Buffalo and Niagara Falls, N.Y.  My favorite band is Rush.  I find that this band are the most respectable group of men not only with talent but they are like family.  Brothers to be saying at least.  I feel like my life is like Neil Peart who lost his wife and daughter within 10 months of each other and he went on this journey on his motorcycle to start his healing.  I feel like I have Neil Peart's Personality except that I don't play the drums but I wouldn't mind trying.  I find that Rush makes me grow stronger and the lyrics keep me going even if I'm having a bad day.  I have all their albums and DVD's, plus some pictures and three of Neil's books.  I even saw them in concert 5 times and I even went to RushCon.  I wished I went to more Rush concerts outside of where I live but it gets pretty expensive.  I want to go to more conferences and more places because I want to learn.  I want to be involved, and mostly I want to be accepted.  Anybody with aspergers, autism, any other type of disability even the "normal" people should all be accepted, join together and welcomed into the world with open arms and not isolated from  the universe.  I accept all my friends.  We stick together like Rush.  I have Aspergers and I was born that way.  If there was a cure for autism, I wouldn't want it because that wouldn't be real.  We are all different and we should be happy with the way we were born.  Let us all join hands and raise our hearts to Autism Awareness.

Respect

In her own words, Amy Sequenzia wrote this poem "as I wrote many others, to show that even autistic people who carry the label of “low functioning” can think independently, even if we need more help to make our voices heard. I am a free thinker and I will not be stopped by awkward looks of pity or by disrespect. I am more than my needs and I am slowly showing my real self. I hope you enjoy it." 

 

Respect

Copyright 2011 by Amy Sequenzia

A moment of sanity in the conversation about respect
Ask me the question, listen to my answer
That’s respect

A moment of love
Look into my eyes

See my soul
A moment of connection

I am who I am and I hope to be respected
I am all my abilities, including my disabilities
I expect to be heard

What you see might not seem much
This is not my fault because
“Beauty is in the eyes of the beholder”

So, be daring, be special and try to see beyond the cover of my being
Wise thoughts lie beneath
Warm feelings waiting to be shared

 

 

In Need of Directions

From PeripheralPerspective from Peripheral Minds of Autism:

In Need of Directions


Each day i live my life
Never knowing who I am
Confusion. Wondering.
I want to be someone
Someone I'd admire
So I try and I always seem to fail
I'm never satisfied, I'm always upset
I'm afraid I'll never know happiness
So many things tear me apart
And I try to throw myself together
That's how I feel, like a puzzle
A puzzle of many pieces
Never fitting together--- and never will
It's terrifying knowing so much
and understanding so little
It makes it hard to live
I'm possessed and obsessed because
I try so hard
I know the answers-- not the
methods --- I know where I want
to be... just not the directions.

Written in 1991
19 years old.