Day 15: Some Things Everyone Should Know About Autism

Everyone should know:

• Some of the #actuallyautistic community views their condition as a neurological variation - a difference that is neither a disease nor a disability - that is no different that the variations of eye or hair color. 
• Neurodiversity is an emerging term for the tolerance of this variation among some. Not all people have heard of it or agree with it.
• Autistic people have trouble learning social norms, or do not understand them, or even find them puzzlingly irrational.
• Autistic people can have intense interest and encyclopedic knowledge in some subjects, and can have laser-like focus and concentration. 
• Autistic people can excel at pattern recognition and anomaly detection. As such, they can make incredible quality-assurance testers, editors, or programmers.
• The #actuallyautistic community has an expression, "Nothing about us, without us," and many are advocating that they have a say about what is done for them. John Elder Robison - an author, inventor, and autistic - is a strong proponent of this. So are non-autistic people like author Jonathan Silberman ("Neurotribes"). 
• Some autistic people prefer "person first" language to describe them - they like to be called 'a person with autism'; they don't like to be defined by their condition, but speak of it as a part of them. Others prefer identity-first language, asking to be called 'autistic persons' as they feel autism is an intrinsic part of who they are. 
• Many #actuallyautistic persons strongly object to the anti-vaxxer movement because they believe they were born autistic, not made to be. They are fiercely proud of being autistic and resent the idea that they were poisoned or sickened by vaccines and, as a result, became autistic.
• While some autistic people are non-verbal, they can still think and communicate with assistive devices. Witness Carly Fleischmann's hilarious and flirty interviews with celebrities. 
• Many businesses are recognizing the talents of autistic people and hiring them for their skills - not just as a charitable action or community service - places such as Rising Tide Car Wash, The Precisionists, SAP, HP, Microsoft, E&Y, PWC, and other small businesses like Puzzles Bakery and Cafe, and Spectrum Works. You can see a list of many more business like this here. 
• Business can make themselves autism friendly by advertising as much on their hiring portal. This lets autistic people apply for the job unafraid...
• ...but businesses must work hard to change perceptions of autism, training staff and management to make reasonable accommodations to help the autistic hires. 
• Reasonable accommodations include such things as giving clear instructions, helping to manage change, and allowing the use of ear protection or earbuds to cut out distracting noise, changing lighting, or just allowing for different behaviors such as stimming. 
• A meltdown occurs when an autistic person experiences a sensory overload. It is NOT the same as a tantrum. A meltdown is a reaction to external stimuli, a tantrum is a learned behavior and an attempt to manipulate a situation. 
• If you see a child having a meltdown in public, be kind to the parents. They are often afraid to venture in public for just this reason - they fear and feel the glares of others who are well meaning but ignorantly think that the parent is bad. You can politely ignore the situation and walk away or offer to help. 
• Autism affects 1 in 68 children. 
• Autistic people are people and deserve to be treated as such, receiving the same courtesies, kindness and rights as anyone else. 
• Not every autistic person or their family likes Autism Speaks, the puzzle piece, or other iconography and charitable organizations. 

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?