Day 14: Routine

Routine is very important to some autistic people, and the ability to change or "just go with the flow" is not easy for them. Following rules, establishing a pattern, and knowing what to do when any situation presents itself is comforting and stabilizing.

This has several important implications: while they may not like change, they adapt well to a routine and like following it. Other people may not. Parents can use this knowledge to know how to help their autistic children; management and colleagues can use this knowledge to find the right work for them and plan on how to help them cope with a change in assignment or schedule of their work. As mentioned earlier when discussing workplace accommodations, this is crucial for helping some autistics succeed.

It is also an important consideration in choosing the right person for a job. The Autism at work community is fond of saying that it makes a good case for using an autisic person as a tester - they have to follow a routine of using the product as advertised in a specific set of processes. They can follow instructions to the letter and evaluate documentation, and they do not get bored of repetition or feel that some things become a drag.

But as with all things about autistic people - not all are the same. "Once you've met one person with autism, you've met one person with autism" is a popular expression in the autistic community. The important thing for family and coworkers to do is to figure out what works best with the person and creatively determine what works best for planning a family trip or a new release. Furthermore, autistic people don't just make good testers - they can make good developers, graphic artists, editors, writers....anything.

Day 13: Families

I learned a lot about families with autism in the last few years. I have heard of the struggle that parents face getting the proper accommodations and education plans for their children, the problems they have with family members - and each other - and this is not to mention the trials that the children themselves face when trying to find their way through the "ordinary world". Couples sometimes divorce over the challenges of dealing with an autistic child. Children become envious of the attention their autistic siblings get and jealous of their parents' love. Schools, playgrounds and even a trip to the grocery store are stressful to the families and the child for the undeserved scorn their receive in public from others who misjudge and do not understand.

We have come a long way from the dark ages - not 40 or 50 years ago - when differently-abled people were just locked up, mothers were likened to refigerators, and talent and human life wasted away in institutions while families lived on with dark secrets. But after the exposés on the mental institutions, the work of parents and celebrities to move all children into mainstream education, and the dedication of teachers who want to make a difference, autistic people are now allowed to live full lives - getting education and sometimes even fulfilling jobs and adult lives. I have heard stories like:

• A mother going to meet her autistic son's teachers for the first time, armed to the teeth with a civil-rights lawyer, documentation of her son's condition and well-read on the laws and education procedures needed to help him - only to find that the school is 100% prepared for him and committed to his success.
• Children forming fierce bonds with their autistic siblings, working hard to understand them and help them, ready to scrap with anyone who dare disrespect their brother or sister.
• More and more couples staying together and working together to help their child or children on the spectrum.
• Schoolchildren celebrating and even lionizing their friends on the spectrum.
• Businesses pledging to be autism-friendly for their customers and their employees.

It's important to keep this progress in mind. Many of these successes were wrought out by couples dedicated to doing something to improve their child's lot. Passionate mothers who used the "Captain Crunch" method of persuading their child's evaluators to give them full benefits. Clever fathers with celebrity or political  connections and crafty ways of convincing bureaucrats to pay attention. We cannot rest on these achievements, but we can use the as inspiration to build further and give succeeding generations an even better shot. The alternative is not acceptable.

I've read about these stories in many books in the last few years, such as:

Neurotribes by Steve Silberman

In A Different Key by Jon Donovan and Caren Zucker

Uniquely Human by Barry Prizant

Look Me In the Eye by John Elder Robison

Day 12: Favorite Autism Charity

 

I have two that I am very fond of - one is Specialisterne, for the work they do to promote autism hiring. The other is Music for Autism, because of the work they do to give great entertainment in a safe space for kids with autism and their families.

Specialisterne was founded by Thorkil Sonne. After 15 years in the IT industry he wanted to do something for talented autistic children like his son. He recognized that for each of the perceived disabilities, there was a corresponding ability that could be used.

Music for Autism holds monthly concerns in several cities, just for kids with autism and their families. I've volunteered at two concerts thus far, and will do a third this month on the 22nd. It's a lot of fun to see the kids just enjoying music, making noise, dancing around and having fun without anyone judging them or their parents. The concert usually has three phase - one where the band just plays, one in which the kids get to conduct, and the last phase is the best - they all get assorted percussion instruments and get to play along with the beat.

Day 11: Stims

"Stims" is a word meaning "self-stimulation". It's an activity that people do - not just autistics - when they are bored, tense, or want to do something to release endorphins to their system (a theory espoused here http://autism.wikia.com/wiki/Stimming).

Not all autistic people stim, and not all people who stim are autistic.

Stimming can be disruptive at worst and at least curious to people who don't understand it. I have seen people who

• get up from their chair and walk a circle around the room then sit back down and continue working
• tap their fingers
• shake or vibrate their foot when crossed over their leg, or tap their whole leg like a drummer on the floor
• rock in their chairs
• slapping their neck or face while talking

and other things like it. My daughter used to do the bass-drum thing in the car and it would drive her mother nuts! I also do it : )

The trouble with it can be mitigated by letting team members know about the behavior, or making sure the employee takes time to do other things during the day like take breaks, stretch, or relax in some other way. Specialisterne made stretching and taking breaks an integral part of their training. I know a teacher of autistic kids in the Bronx who does daily calisthenics with her kids.

It's just another example of the small accommodations we can make to adjust expectations and make the workplace friendlier.

Day 10: Sensory Life

Day 10 of the challenge I accepted asks me to speak about the sensory issues that autistic people face. To varying degrees and with different compositions, autisic people are sensitive and easily irritated by many things that can hamper their mood and ability to perform. Those issues include, but are not limited to:

1. Light - some autistics complain about flourecent lighting or bright lights.
2. Odors - when we put on the hiring pilot in Lansing, and when I have attended some events with many autistic people, I was warned not to use lots of cologne or perfume.
3. Touch - some autistic people loathe being touched or are easily startled.
4. Taste - flavors of some foods can be very off putting, and some autistics have a digestive sensitivity to gluten or other foods. @DUBISETTY, MALLIKARJUNA​ and others have posted here about autism-friendly diets.
5. Sound - loud noises can distract some autistic people.

Any one of these things can be easily ameliorated or mitigated, providing an environment in which the autistic person is not distracted and can work or enjoy themselves happily.

1. Flourescent lights can be replaced with incandescents, or lights can be dimmed or reduced in the area in which an autistic person works.
2. Although a challenge for some of us, we can lay off the perfumes and deodorants and be careful what chemicals are used in work environments with autistic people.
3. Be careful when approaching anyone from behind and startling them, and adjust your personal "touch" to each person.  Not everyone likes a handshake, slap on the back, or even a hug. Considering the news of late, we all ought to be careful about that anyway : )
4. As I mentioned, Mallik and others have posted autism-friendly diet information here.
5. Many autistic people I have seen like to wear headsets (like construction worker's gear) or use their headphones to listen to music or sounds that soothe them, and drown out distracting noises so they can concentrate.

How different is this for the rest of us "neurotypical" people? I see some of my employees like to work in darkness or near windows, and I have heard complaints about fluorescent lighting for years; not everyone appreciates the guy down the hall who drowns himself in Drakkar Noir or the person who, late in the afternoon, burns the popcorn in the microwave; we all have different preferences when it comes to backslaps and handshakes - I know manager who hug, but many more who never touch a person; working on an upset stomach isn't fun for anyone; many people in IBM wear headsets to enjoy music while working. I find it even helps me - and when I can I prefer to listen to monotonous music like The Crystal Method, Chemical Brothers, or Philip Glass. An intern I had years ago appreciated that so much he bought me a copy of The Crystal Method's new albums at the end of his summer with IBM (Hi, @Murray, Brian J​!).

These sensitivities provide constant challenge to parents of autistic children, however, as the parents discover, learn about them, and learn to anticipate the triggers and work to lessen them or eliminate them Autism advocates in our community work with retail and public spaces to teach these things and make their business more autism-friendly or at least autism-aware. It helps their business and the community. What sensitivities have you heard of or dealt with?

Day 9: Autistic Owned Businesses

A quick google search on this topic reveals very little. I was able to find this link at the top before the results turned into more about business supporting autistic people or hiring them (Autism Speaks, e.g.). I know of none of the business listed in the top result.

I know more about businesses like Rising Tide Car Wash,  ULTRA testing, the NonPareil Institute, The Precisionists, or GirlAgain!/YesSheCan - businesses that support hiring autistic people. Finding that there are some businesses owned by autistic individuals is new to me. Does anyone else know of some to share here?

A Recovered Poem

About 13 years ago last week fire destroyed our apartment in Ossining, NY and we lost a lot of valuable things - the most precious of which were just mementos or heirlooms. Chief among my losses were the poems I wrote in college.

There was one in particular that I wrote after going to the ocean in Old Orchard Beach, Maine, at the invitation of my college room mate, Pat, and his family.

I had not seen the ocean in my adult life at that point. I had dim memories of it from a child, but not much. We left Syracuse at about 10PM and drove through the night to arrive at a small harbor near where Pat's family rented a cottage on the beach of Saco Bay.

There, as the sun rose and we shook off the chill of night driving and stretched our legs, I saw the most amazing 15 minutes of sunrise up to that point in my life. Seals, gulls, wharf cats, the sweet grass and salt smell of a tidal marsh - and the sun woke all of it and brought it to life as it has done every day since we climbed from the sea.

I took a picture using a borrowed camera and when I developed it, saw that it faithfully captured the mood. I would make a print of it and give it to Pat as a thank you note when I got the chance. I wasn't happy with just that, though, so I sketched out this poem to go with it, put it in a hinged double frame, and gave it to him for Christmas that year.

I was so happy with it that it was the only poem I entered in a yearly contest at school. I got a second place prize, but a better compliment from my teacher, who was the judge. "If you'd entered more, you would have won." That was good enough for me. I was happy with it.

After the fire I searched my parents' house to see if they had a copy. My father sent me a box full of all the things he had that I'd written. Neither source had my masterpiece. I remembered Pat had it, though, so I sent him an email, requesting a copy. He said it was buried in his attic during remodeling and it would be some time before could send it to me. Ten years later, here it is. I only regret one thing about writing it - that I included no sense of that sweet smell of the tide rushing inland. I catch a glimpse of it when I have oysters, though.