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’.

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

Matthew Bauer

Director of Communications, MIT DSL  

My Hope for MIT

“Those who make us believe that anything’s possible and fire our imagination over the long haul, are often the ones who have survived the bleakest of circumstances. The men and women who have every reason to despair, but don’t, may have the most to teach us, not only about how to hold true to our beliefs, but about how such a life can bring about seemingly impossible social change. ”
― Paul Rogat Loeb, The Impossible Will Take a Little While: A Citizen's Guide to Hope in a Time of Fear

My Hope for MIT. Reflecting on the past when thinking about the future.

The year was 1986. I turned 16 and my world changed overnight. I had a license and a car and freedom. “Shoot we’re out of milk. I’ll go mom!” I can still remember the excitement and joy I felt when I would grab the keys and walk toward my 1979 light blue VW Rabbit.

I’m the youngest of 4 girls – my sister closest in age is 5 years my senior. In 1986, she was a 21 year old wild child. My sister could party and did so frequently. One night, she went clubbing and picked up a guy. I heard the whispers the next morning, driving drunk, the guy (a complete stranger) was in the hospital, my sister was in jail, her brand new car was destroyed.

Six years earlier, in 1980 a 13 year old girl named Cari Lightner was killed by a drunk driver in Fair Oaks California. The driver was a 46 year old man who left her body at the scene. Following this accident, it was discovered that he had previously been arrested for another DUI hit and run. Channeling her grief and outrage, Candace Lightner, Cari’s mother, founded MADD, Mother’s Against Drunk Driving.

Not until my sister’s accident in 1986 did drunk driving became a personal issue in my household. Up until that point, I hadn’t really given it much thought. I remember my freshmen year of high school, they parked a wrecked car on the front lawn of the school right before senior prom as a warning of what could happen if anyone drove drunk that weekend. I did what all my friends did, I walked by the car shaking my head and then promptly forgot about it. The reason is that one, isolated image and message was not enough to inspire us to think deeply about changing our behavior. And, I thought to myself, I would never drive drunk so this message isn’t really for me. I didn’t see myself as part of the problem and therefor as part of the solution.

Beginning in 1980 and building slowly at first, MADD was able to accomplish a transformative cultural shift. Out of tragedy, they managed to build a movement. The isolated tragedies became a public health issue.

·     Within a few years, we were seeing the stories of families who lost loved ones to drunk driving in movies and TV shows.

    They coordinated one week of all prime time comedies to tackle the issue in a story line.  Politicians were lobbying for stiffer penalties

·      the BAC legal limit was lowered technology was invented to track high-risk drivers

·      Designated Drivers became a standard

·      bar owners were held liable if someone was overserved at their establishment and drove drunk, and on and on.

And out of all this, within a few years, we saw a distinct shift in public opinion and the social norms around drunk driving. It became something we all felt responsible for stopping. “Dude, give me your keys, you’re not driving tonight” became the expectation.

It was 1999 and I was hired by Western Washington University to serve as the first sexual assault educator. What I saw was similar to my early high school recollections on drunk driving. People were universally against rape. No one argued in favor of sexual assault. But most people didn’t see a place for them in the discussion. If you saw yourself as neither a victim nor perpetrator, it was difficult to see how you could help end this private, hidden phenomenon known as “date rape.”

Over the course of a few years, I started to see a shift in the attitudes of victims. In the beginning, it was called “the click.” Groups of students who’d been assaulted started finding each other. Through support groups or, later, the internet, these women and some men were talking to each other. And what they started to hear from each other was the common thread that each felt responsible for what happened to them. I must have done something wrong. I must have sent the wrong message, worn the wrong clothes, said the wrong words. But as they spoke to each other, the click would happen. If it’s happening in such a consistent way to so many people, maybe it’s not the fault of the individual. Maybe there’s something larger happening.

And that realization began a new movement. We saw

·     college students uniting to force their schools to better address the problem public health experts studying prevention efforts to figure out what works – with the increased focus came grant money to study the problem with increasing federal mandates, companies started developing online training tools, climate surveys, and campus campaigns like Green Dot and MVP and 1 in 4 parent associations began demanding their daughters be protected by increased security, improved policies, and clear student conduct expectations faculty began organizing to lend their expertise and powerful voice the federal government started enforcing laws that had previously been on the books only and we saw for the first time the president and vice-president of the United States speaking out about non-stranger rape and telling the country “it’s on us.”

All of this gives me great hope. 

In 1999, I could never have imagined that within a few short years, we would see national conferences for every level of college administration devoted to the subject of sexual assault. For the last 4 years, Title IX has been the focus of the national and regional conferences for groups like college and university general counsels; the national association of student affairs; judicial officers; risk managers; college health care providers; mental health clinicians; drug and alcohol counselors; alumni affairs; and parent associations to name a few. A forceful coalition called Faculty Against Rape has formed.

At all levels, people are talking about what they can do to improve response and prevention efforts. This is a true model of how to address a crisis through a public health lens.

As Suzy Kassem writes about in Rise Up and Salute the Sun - “To really change the world, we have to help people change the way they see things. Global betterment is a mental process, not one that requires huge sums of money or a high level of authority. Change has to be psychological. So if you want to see real change, stay persistent in educating humanity on how similar we all are than different. Don't only strive to be the change you want to see in the world, but also help all those around you see the world through commonalities of the heart so that they would want to change with you. This is how humanity will evolve to become better. This is how you can change the world. The language of the heart is mankind's main common language.”
― Suzy Kassem, Rise Up and Salute the Sun: The Writings of Suzy Kassem

This brings me to my hope for the future which is that this energy and focus on campus sexual violence begins to trickle down. Higher education has been highly criticized in its handling of sexual violence and gender discrimination. The result has been a vast improvement in the way this issue is handled. Although there is certainly plenty of work still left to do. What I hope is that we as a country begin to realize that the foundation for issues of sexual assault, rape, dating violence, and harassment is formed long before students set foot on our campuses. Consent and respect should not be new concepts for freshmen. Here’s my hope for the not too distant future:  parents are given the skills to instill these values in their children before they enter kindergarten

·         K-12 teachers are building on those lessons and age appropriate sexual health including consent, communication, respect, and the role of alcohol is taught every year at every level

·       Hollywood catches up with the times and we start to see less sexualized violence and scripted gender roles

·       we raise our girls knowing they are valued for more than their looks and their youth and their bodies. The only 2 professions where women actually out earn men in the same field are modeling and sex work. What does that tell us about the value we place on women?

·        and we raise our boys knowing they don’t need to wear the mask of aggression and power and violence and are capable of expressing the full range of human emotions. I was at a retreat with college students a few years ago. One of the activities was to break up into groups and create a performance on a theme. There were 5 teams of all men and each team was given the theme “act like a man.” All 5 groups did a performance depicting how they used violence (either early on in childhood or later in adolescence). We need to flip the script on what it means to act like a man.

I’ll close with one of my favorites by Arundhati Roy - “Another world is not only possible, she is on her way. On a quiet day, I can hear her breathing.” 
― Arundhati Roy

Her breathing sounds like

·     California passing the law that consent is a required part of sex education in K-12.

·     It sounds like my 13 year old son telling his friend his comments about a girl were sexist.

·     It sounds like 3 MIT male students calling the VPR hotline with concerns that a new freshmen pledge made comments that made them think he didn’t fully appreciate the importance of consent.

·     It’s the MIT females who intervened when a girl from another school that they didn’t even know passed out at a party and they refused to leave her unattended.

There are so many of these stories that tell me change is on its way.

Sarah Rankin

Director and Title IX Coordinator

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