Wednesday, April 27, 2016

About Autism


Reading:

Let’s Talk About Autism
Beth Hiatt, 13
I have autism. And I’m not ashamed to admit that.
It may come as a bit of a surprise to you, as the only autism you may know of being exposed to have is the low-functioning, severe, non-verbal kind.
I do not have low-functioning autism. I am a high-functioning autistic. There’s a whole spectrum of autism, (that’s why its full name is autism spectrum disorder) and no two people with autism are the same. Those with high-functioning autism/mild autism/Asperger’s syndrome do indeed face extremely different issues to those with low functioning autism, but there are similar issues affecting the majority of the spectrum that most people do not know.
Imagine having all five senses multiplied by one hundred. Many people with autism, myself included, have never experienced complete silence. We always hear the humming of the lights, or a bird outside, or even the sound of our own breath. We always hear this loud and clear, even in noise-filled crowded room. We feel labels in our clothes for the entirety of the day if they are not cut out, some smells and tastes make us literally unable to breathe. After this all gets too much (trust me, this usually doesn’t take too long for most) we can experience something called sensory overload. If visible to others, it probably looks like a tantrum (If you were wondering, I haven’t experienced full-blown sensory overload in years, but it still stands. You just learn how to repress it). However, we are not waiting to see if others respond. We want to get out of there as quick as possible, and we certainly don’t need judgement from others. I know our behaviours may seem self-injurious to those around us and it may seem funny to see a child who is not two kicking off and screaming, but who are you to judge? You have absolutely no idea what it is like.
Imagine being seen as rude when you do not get the gist of social norms. Most people are born with a general understanding but just need to be reminded to mind their P’s and Q’s from time to time. Usually, they are well-mannered by the age of four or so. Well… we are all still learning, whether we are eight or eighty. We do try our hardest to think before we speak, but we slip up quite a lot. Sure, it’s funny and cute when a three year old says something they shouldn’t, but when a nine year old accidently starts an argument between their family after they repeat something their parents muttered under their breath (Guess who did that, kids!), you’re seen as rude and inconsiderate…
Imagine struggling to catch a ball, hold a pen or do anything that involves fine or gross motor skills. We are the children that run with a gait, who are always picked last for the team, whose handwriting ranges from scruffy to illegible. The worst thing is, we are not often given help for this. As autism is known as an invisible disability, people think we are not trying hard enough, children laugh at our mishaps, we feel left out and like a failure on many occasions.
Although after reading this article autism may seem like a terrible thing to have that will ruin your entire life, don’t be fooled! All of the best scientists (Einstein, Edison, etc.) that changed our world and way of thinking drastically were rumored to have autism, along with such famous faces as Daryl Hannah, Tim Burton and the legendary Temple Grandin. We can go on to do the most amazing things if our self-esteem isn’t shattered.

Autism has no known cause and no known cure, but there is somebody who can make life easier for those who are diagnosed.
It’s you.
Autism Awareness Day is coming up on April 2nd, and you will probably be told to wear blue to make people more aware, but I want you to do more than that. Make every day autism awareness day. Try to make a safe space if somebody with autism is on edge at a party. Gently nudge them if they say something wrong. Pick them for your team if playing sports. Even smiling and saying hello in the corridor. Small gestures matter. Often, they can speak louder than words ever could. Please, be autism aware.


Thank you.




On March 25, 2006, a team of therapists and social workers diagnosed my son Max with autism. It was a cold grey Sunday, in our tiny condo in the Charlestown Navy Yard. The day was also Max’s second birthday, and once our door slammed as the visitors left, we had never felt more isolated or alone.
Not a great birthday present. What’s followed is a 10-year odyssey of learning about autism, but more important, learning about Max, my wife, myself, and our extended community of friends and family.
You hear this about many medical conditions, and it’s true about autism: when one family member has it, the family has it. The effects are pervasive. And there’s a natural conflict in the mind and heart of an autism parent.
The dark side is exhausted, frustrated, sad, and anxious over the current state of their child. “What is his future like? Will he be alright after I’m gone? Who will care for him when he’s an adult?”
The light side is positive, enthusiastic, happy, and calmly looking forward to the child’s next achievement. Next word, or glance or gesture, which sometimes come painfully slowly.
Those two emotional states—exhaustion and elation—must coexist for the parents to function. The true definition of cognitive dissonance.
And while all parents face this to some extent, parents of autistic kids feel it more keenly, and for longer—ASD kids can develop differently and more slowly, so the concerns a typical parent may have for a three- or four-year old can persist for many years in an ASD kid. And we feel it in ways that make us confront personal and familial issues head on, with no filter or buffer.
You may not know it, but you know someone who has a child with autism. According to the CDC in 2014, 1 in 42 boys and 1 in 189 girls has an autism spectrum disorder.
I shared two readings for today. The first, Violet Fenn’s article, offers some positive advice on connecting with and showing support for parents of ASD kids, from a simple “Are you OK?” to an offer of a large cup of gin.
But it’s easy to lose the voice of the person with autism in the discussion, because people with ASD oftentimes cannot express themselves in ways that neurotypical people understand.
The article by Beth Hiatt, a 13-year old Australian, published in her school magazine helps give voice to the voiceless. To share some insight into how persons with autism are affected by everyday occurrences.
One thing you will seldom see from persons with ASD is discussion of a “cure” for autism. For them autism is part of who they are, and suggesting that it’s a disease implies that they themselves are less-than neurotypical people. Also you will hear more about “neurodiversity” in the years to come, a movement that encourages acceptance of all persons across the autism spectrum and beyond.
This movement resonates at MIT.  The connection between quantitative, systematic thinking and autism has long been known, and the dimensions of that connection are becoming clearer. A recent Stanford Research Institute International study examined 11,000 students across the country and found that more young adults with ASD choose science, technology, engineering and math majors than their peers in the general population or with other disabilities.
A common thread between persons with ASD and their parents is that autism is not a disease. From my perspective, autism is a catch-all term for numerous, interconnected neurological conditions that express themselves differently and to differing levels in each person. Hence the saying, “If you’ve met one person with autism, you’ve met one person with autism.” And while groups like Autism Speaks—whose mission is to research “causes, prevention, treatments and a cure for autism”—light up the world blue and cover it in puzzle pieces to raise awareness of autism, I suggest that persons with ASD, and their families need support, understanding, and acceptance more than they need a cure.
Each morning I wake up with that conflicting mix of sadness and hope. His mom and I help Max get ready for school—which he loves—and send him into the world not knowing what the world holds from him … a feeling that’s very different from the similar worries of other parents. I believe the world will be more accepting and accommodating in the years to come for Max and people like him. Technology has helped persons with ASD connect with the world and others in new and exciting ways. But while I get to share my feelings and experiences with you today, there’s someone else you know who is feeling scared, alone, and isolated, and who could really use that huge cup of gin and some encouragement. Both moms and dads.
Please help them. I—and they—will appreciate your caring. Thank you.

Reading:

Seven things you should say to the parent of an autistic child
Violet Fenn, Dec. 15, 2015 (Excerpts)
http://metro.co.uk/2015/12/15/7-things-you-should-say-to-the-parent-of-an-autistic-child-5548187/
1. I don’t understand autism, can you tell me more? - Most of us knew very little about autism before we had kids, so you’re not alone! We’re happy to fill you in, just remember that our view is about autism as it affects our family and our views are likely to be different to the next person you speak to.
ASD-related issues affect people in different ways, so never be afraid to ask.
2. Are you okay? - The most obvious, and the easiest for both parties. Sometimes all we need is a friendly smile and a casual enquiry – even if the answer is a resounding ’No!’, it’s nice to know that people care. I usually go with a tilt of the head and knowing eye roll – accompanied with a mouthed ‘you okay?’ it can be enough just to let that parent know they are not alone.
Most people are well practised in dealing with their autistic child’s public meltdowns – nothing teaches tolerance than having to stand quietly by whilst your offspring screams incoherently at the top of their voice in the middle of a shoe shop. I learnt long ago that it’s usually easier to let my son yell a bit then shepherd him out of the store with the first pair of trainers I could find, crossing everything that they actually fit. But I have on occasion been very grateful for a stranger picking up my bags and helping me wedge them over my shoulders so that I didn’t have to let go of the screaming banshee in my other hand.
3. Can I help right now? Would you like this very large glass of gin/cup of coffee/shoulder to cry on? - As in, ‘can I do the shopping/run to the post office for you/go get you a newspaper’ – when we spend an awful lot of our time on high alert and/or filling in the endless paperwork that seems to come with ASD diagnoses (not to mention the appointments), parents of ASD kids almost always drop themselves to the bottom of the priority list.
You don’t even have to speak in order to help us – just do something that shows you care and/or empathise. We’re not expecting you to have any answers – hell, no one appears to have the answers, not even the endless specialists that end up involved in our daily lives have the answers – but a friendly ear and a cuppa can work wonders after a day of trying to figure out why our kid is utterly hysterical when all we did was put their chicken nuggets on the opposite side of the plate to usual (we didn’t even know there was a right side of the plate until now).
4. How are you? - So simple, yet it makes such a difference. Just knowing that others are thinking of you can sometimes be all you need to get through the day. But you have to mean it – there is a fair chance that we will tell you exactly how we are in great detail, along with flailing hand gestures and incoherent wailing noises. Do not panic! Keep passing the tissues and the chocolate and we will eventually wind down like a clockwork toy.
5. How are you/what are you up to? (directed at your child) - As with all people, some autistic kids will be better at communicating than others. My son can talk the hind legs off a donkey if it’s a subject he likes, but will be silent and utterly non communicative if you ask about something he has no interest in. The fact that he finds interaction difficult doesn’t mean that he doesn’t want to interact at all, though – he loves people and is in the most part incredibly polite and personable.
6. Would your son/daughter like to come? We can work around their needs - My son has been to very few birthday parties in his eleven years and they’ve tailed off almost entirely as he’s got older. When another child at his old primary school invited him to his party last year I actually wept with gratitude. We know that it can be difficult to include our kids, but we are so very bloody grateful to those who make the effort.
7. It’s not your fault/I believe you/you are doing a good job - We really, really need to hear this sometimes, even if we already know it. However confident we are as parents, a lot of us have been in situations where our child has been utterly awful and we’re left to pick up the pieces (sometimes literally). And however much we know they don’t mean it, there’s often a tiny voice in the back of our head muttering ‘maybe s/he wouldn’t be like this if you were a better parent’.

~~~~~~~~~~~~~

Let’s Talk About Autism
Beth Hiatt, 13
I have autism. And I’m not ashamed to admit that.
It may come as a bit of a surprise to you, as the only autism you may know of being exposed to have is the low-functioning, severe, non-verbal kind.
I do not have low-functioning autism. I am a high-functioning autistic. There’s a whole spectrum of autism, (that’s why its full name is autism spectrum disorder) and no two people with autism are the same. Those with high-functioning autism/mild autism/Asperger’s syndrome do indeed face extremely different issues to those with low functioning autism, but there are similar issues affecting the majority of the spectrum that most people do not know.
Imagine having all five senses multiplied by one hundred. Many people with autism, myself included, have never experienced complete silence. We always hear the humming of the lights, or a bird outside, or even the sound of our own breath. We always hear this loud and clear, even in noise-filled crowded room. We feel labels in our clothes for the entirety of the day if they are not cut out, some smells and tastes make us literally unable to breathe. After this all gets too much (trust me, this usually doesn’t take too long for most) we can experience something called sensory overload. If visible to others, it probably looks like a tantrum (If you were wondering, I haven’t experienced full-blown sensory overload in years, but it still stands. You just learn how to repress it). However, we are not waiting to see if others respond. We want to get out of there as quick as possible, and we certainly don’t need judgement from others. I know our behaviours may seem self-injurious to those around us and it may seem funny to see a child who is not two kicking off and screaming, but who are you to judge? You have absolutely no idea what it is like.
Imagine being seen as rude when you do not get the gist of social norms. Most people are born with a general understanding but just need to be reminded to mind their P’s and Q’s from time to time. Usually, they are well-mannered by the age of four or so. Well… we are all still learning, whether we are eight or eighty. We do try our hardest to think before we speak, but we slip up quite a lot. Sure, it’s funny and cute when a three year old says something they shouldn’t, but when a nine year old accidently starts an argument between their family after they repeat something their parents muttered under their breath (Guess who did that, kids!), you’re seen as rude and inconsiderate…
Imagine struggling to catch a ball, hold a pen or do anything that involves fine or gross motor skills. We are the children that run with a gait, who are always picked last for the team, whose handwriting ranges from scruffy to illegible. The worst thing is, we are not often given help for this. As autism is known as an invisible disability, people think we are not trying hard enough, children laugh at our mishaps, we feel left out and like a failure on many occasions.
Although after reading this article autism may seem like a terrible thing to have that will ruin your entire life, don’t be fooled! All of the best scientists (Einstein, Edison, etc.) that changed our world and way of thinking drastically were rumored to have autism, along with such famous faces as Daryl Hannah, Tim Burton and the legendary Temple Grandin. We can go on to do the most amazing things if our self-esteem isn’t shattered.

Autism has no known cause and no known cure, but there is somebody who can make life easier for those who are diagnosed.
It’s you.
Autism Awareness Day is coming up on April 2nd, and you will probably be told to wear blue to make people more aware, but I want you to do more than that. Make every day autism awareness day. Try to make a safe space if somebody with autism is on edge at a party. Gently nudge them if they say something wrong. Pick them for your team if playing sports. Even smiling and saying hello in the corridor. Small gestures matter. Often, they can speak louder than words ever could. Please, be autism aware.
Thank you.


Matthew Bauer
Director of Communications, MIT DSL  

Wednesday, March 30, 2016

A vocabulary of hope

Prelude: Herzlich tut mich verlangen ~ F. W. Zachau ~ Bart Dahlstrom, organ

Readings:

Bahá'ì                         Blessed is he who preferreth his brother before himself.

Christianity                 All things whatsoever ye would that men should do to you, so ye do to them, for this is the law and the prophets. - Matthew 7:1

Confusianism             Do not do to others what you would not like yourself. Then there will be no resentment against you, either in the family or in the state. - Analects 12:2

Buddhism                   Hurt no other in ways that you yourself would find hurtful. - Udana-Varga 5,1

Hinduism                    This is the sum of duty; do naught unto others what you would not have them do unto you. - Mahabharata 5,1517

Islam                           No one of you is a believer until he desires for his brother that which he desires for himself. - Sunnah

Judaism                      What is hateful to you, do not do to your fellow man. This is the entire Law; all the rest is commentary. - Talmud, Shabat 3id

Taoism                        Regard your neighbor's gain as your gain, and your neighbor's loss as your own loss. - Tai Shang Kan Yin P'ien

Zoroastrianism           That nature alone is good which refrains from doing another whatsoever is not good for itself. - Dadisten-I-dinik, 94,5



Postlude: O Lamm Gotts, unschuldig - BWV 656 ~ J. S. Bach ~ Bart Dahlstrom, organ

This semester we’ve been asked to share our hopes for the coming term.  Thinking about this, I started reflecting on the word “hope.”   In troubled times, that seems like a scarce commodity.   Martin Luther King said that “a riot is the language of the unheard.”  Perhaps we can also say that it’s the language of the hopeless.   So one hope I have for the coming term is to be able to offer a vocabulary of hope.  Hope can be used with many shades of meaning.  But I mean not a naïve expectation that everything will turn out OK, but rather a sense of agency.  It’s a belief in our capacity to act and make a difference.   

To believe this is not to ignore history, but to understand it.  The 20th century, for example, saw the retreat of antiquated world views such as male superiority and white supremacy.  At the beginning of the century in the US, women could not vote, were excluded from many professions, and regarded as an inferior breed – barriers that fell during the course of the century.   In 1900, reconstruction had ended in the South and the nation was headed into a period that marked the low point in the history of race relations.   2008 marked the election of the first black president.   In the wake of two ruinous world wars, the world took its first clumsy steps toward international governance.   Nations voluntarily started creating instruments of governance on an international level that mediate disputes, set standards of international law and human rights, and undertake humanitarian work in the fields of health, education, and economic development. These instruments are clearly flawed, but their historical significance should not be underestimated.  

Yes, there’s still racism, sexism, and violent conflict.   But we’ve crossed a threshold of beginning to recognize the oneness of the human family and beginning to implement this principle in our institutions.   Despite temporary setbacks, there’s no going back.

The 20th century also saw the rise of an interfaith movement, in which followers of historically antagonistic religions were drawn together; by the end of the century interfaith gatherings and services were common, something unthinkable a few decades earlier.   But is there a danger that these efforts become a feel-good exercise that lacks a coherent purpose and spiritual commitment?  Can religion catalyze the kinds of progress I’ve described?  Or will it still be captive to narrow sectarian dogmas that divide and balkanize humanity, suppress the life of the mind, and sow the seeds of hatred and fanaticism?   The goal of interfaith work, as I see it, is to enable the world’s religious communities rise to the challenge of promoting the high aims of ennobling human character, encouraging the investigation of reality, creating authentic relationships, and building a just and progressive civilization.

Last fall, in The Tech, I spoke out in defense of the Muslims on campus, while at the same time calling on the world’s Muslim religious leaders to allow for greater critical inquiry and efforts for reformation.    I also stressed the importance of interfaith work.   I’m happy to report that a group of students have responded to this call, and have begun to conduct a series of dinner gatherings that draw together participants from diverse religions.   My hope is that we can create close friendships, have probing discourse, and do collaborative work on the task of building the world for which we hope.

Speaker: Brian Aull, Bahá'í Chaplain, MIT


Wednesday, March 16, 2016

Reflecting on What We Have Lost

Reflecting on What We have lost


Middle age refers more
To landscape than to time:
It’s as if you’d reached
The top of a hill
And could see all the way
To the end of your life,
So you know without a doubt
That it has an end-not that it will have,
But that it does have,
….. Forseeing by Sharon Bryan

Mortality focuses the mind and heart. Even on a university campus where we are forever young, mortality grabs us. That is what happened to me when I finally paid attention to what was happening. Thanks to Mitch McConnell’s strategy of intransigence, the hounds of hell have been released calling for action of any sort: “taking our country back” and “building a wall” seem to be the catch phrases of choice. Most know that they do not understand what it means to take something back from the American people; they just do not like who the American people now are. And the wall is nonsense. But it feels good to vent.

I understand the anger. Lots of things I thought settled by the Civil Rights Movement seem to be disappearing. What the voting rights act made possible has been gutted by flagrant political gerrymandering. Just as Mitch owned up to undermining any legacy Barack Obama might build, so too Republican state legislatures have worked to make voting more difficult for those on the margins, minorities, the elderly, the young. All in the name of preventing voter fraud.  And voter fraud translates into people not voting like the legislators would like them to vote.

I graduated from seminary in a time of high idealism.  The Movement was underway and America was changing. The media began to look like America. The most obvious shift was in television. Amos and Andy gave way to Sanford and Son and then the Huxtables moved in next door.

Our family gathered to watch them each Thursday night. We were living in urban America and we felt the problems we were dealing with were not unlike what they dealt with.  We laughed together at shared human foibles.  We had a road map for how to make it in the new America.

When our second daughter graduated from college, Bill Cosby gave the speech at graduation. His advice was sound:  He told the graduates, “Don’t plan to move home.” It was advice that many could not follow, but the economy does not always listen to good advice.

 Last I noticed Pepperdine has not taken back their honorary doctorate. Being a college with a religious heritage, they seem to understand something others have forgotten. If honorary degrees were given only to perfect specimens of the human race, they would all remain in the hands of their makers. Americans love blindly and dismantle what they find flawed with equal passion. MIT does not give honorary degrees and the policy has allowed us to avoid many awkward conversations over the course of our history.

The legal system will grind out a form of justice for Cosby. His behavior appears to have been abusive and criminal, but he is standing in for a generation that told its young men that women were objects to be possessed and conquest was the measure of manhood. Drugs to bulk the body helped with performance in sports; drugs played a role in sexual fantasies. They still do. There is an arc of accepted sexually exploitive behavior that runs from Rhett Butler, carrying a resistant Scarlett O’Hara to her bedroom, down through the golden age of Playboy. The only bad sex was no sex. There is no color line to cross when it comes to boorish behavior and Bill Cosby is a reminder of a collective societal dysfunction.  It is hard to bring a class action suit against middle-America.

Here at MIT pornography was a major fundraiser for student activities during that period. There were few who had the temerity to say that they thought Debbie Does Dallas was inappropriate fare as  introduction to the Institute. A Dean of Student Life, Shirley McBay, who knew exploitation when she saw it, and an Associate Provost, Samuel Jay Keyser, who understood that free speech was never without cost, finally pulled the plug. Their courage is not forgotten.

Now, on the national stage, the Republicans start talking about the implications of having small hands. Like school boys who want to see how far they can spit or pee, the Republican candidates remind us that we have not traveled as far as we thought. They remind us that Bill Cosby is both a product and a victim of a cultural fallacy. Sexual powers are never a reasonable measure of masculinity or leadership.

 Robert M. Randolph
Chaplain to the Institute


On Flags

American flags are everywhere: on campus, in churches, political rallies for sure, town halls, military bases, lapels of politicians, school rooms, sterns of many boats, memorials, caskets, burnings.
Well not so many flag burnings these days.  I was watching a flag Sunday morning while waiting to pick up Suzanne.  I watched it for a long time and thought about this vision thing.  The flag is blown around and stands out from the pole because of the wind, which is driven by the weather systems, highs and lows, caused by ice up north and El Niño in the pacific and the sun.  That flag was flying and it was very inspiring.  If we could only pay more attention to those little beautiful things like flags flying, perhaps we would be a better people.
Now people always know what’s best for everyone else.  I don’t want to presume that I know what’s best for you or MIT or Cambridge or Somerville, or Massachusetts or the USA.  I don’t, but I have some clues.  If we only could honor other folks' sacred texts and way of life.  If we could love and honor rats and snakes and cockroaches as much as our dogs and cats we might respect the life of all living beings and the planet.  Even the bed bugs and ticks and mosquitoes.
We are so small compared to the planet, the length of life, the solar system, the galaxy, the universe.  But how great our accomplishments.  How precious are our families, friends, partners – time.  How precious our country represented by that flag.  That flag isn’t red voters or blue voters.
I wish politicians would just say they don’t know how to deal with ISIS or global warming or North Korea or poverty or the national debt, or lead in the Flint water supply, or black males in prison, or folks fleeing to our country across borders who want a piece of the pie we are so fortunate to have.  My vision of a politician is one who rents his home or lives in one valued about the same or less than ours.
If you have white feet or black feet or yellow feet or red feet or brown feet or even fungus feet, they don’t identify who you are.  Your heart does.
I would like to tell you that my vision is that I can eat ice cream and chocolate and chips to my hearts content, but then we know my heart wouldn’t like that in the long run.
My vision is that we could be ruled by our hearts, a species that honors and respects all living beings, a species that is generous and kind, a species that helps those who are in need, a species that will be on Allah's good side and Yahweh’s arm of peace and God’s care giver and a species who can ask questions and wonder at the answers. 
And within that species that we can find our way to contribute to the whole of all.

Reading:
The White-Tailed Hornet
              by Robert Frost

The white-tailed hornet lives in a balloon
That floats against the ceiling of the woodshed.
The exit he comes out at like a bullet
Is like the pupil of a pointed gun.
And having power to change his aim in flight,
He comes out more unerring than a bullet.
Verse could be written on the certainty
With which he penetrates my best defense
Of whirling hands and arms about the head
To stab me in the sneeze-nerve of a nostril.
Such is the instinct of it I allow.
Yet how about the insect certainty
That in the neighborhood of home and children
Is such an execrable judge of motives
As not to recognize in me the exception
I like to think I am in everything—
One who would never hang above a bookcase
His Japanese crepe-paper globe for trophy?
He stung me first and stung me afterward.
He rolled me off the field head over heels
And would not listen to my explanations.

That's when I went as visitor to his house.

As visitor at my house he is better.

The Reverend John Wuestneck
Protestant Chaplain at MIT