Day 17: Accommodations

On Tuesday I spent an hour speaking to local colleagues about autism in Poughkeepsie. About 50-60 people showed up, and I got a lot of great questions that helped de-mystify the topic of working with autistic people. 

I am thinking about my colleagues in Lansing when I hear about the work they are doing to make their new hires fit in. They are working very hard to make this successful. I hope their lessons aid further efforts in other IBM sites. HR has asked us to prepare information on local agencies and non profits in all 50 states to help hiring managers in the future.

So, I am kinda late and taking the easy way out on this one : )

Day 16: School/Work

As if getting the diagnosis and fighting for services for a child on the spectrum isn't hard enough, school and work present more challenges as time goes on. Autism does not go away and it can't be cured. Problems can be mitigated and new behaviors can be learned. Still, it takes a village.

Students on the spectrum can be ostracized, have social difficulties, and feel rejected by their peers. They can develop depression or other problems that can inhibit their academic work. We've come a long way from the dark ages of people being locked away in mental institutions, and autism is a popular topic now. There are even three different shows on TV that I can think of - The Good Doctor, The A Word, Atypical. Even with all this awareness we need more acceptance. I'm hopeful that this positive trend will continue.

Transitioning to college can be difficult, but more and more colleges - RIT and CMU, for example - are putting up special programs to help autistic students. This is also a positive trend.

The next step is working on transitioning from school to work - schools are connecting with nonprofits like Specialisterne to help develop models of training for schools and employers to help cross the bridge. More and more employers are helping, too. These students need training in interviewing and the realities of the workplace, and employers need to learn how to accommodate their autistic new hires by training management and staff.

If you're interested in helping, look for a local nonprofit in your area like Abilities First, Arc, Autism Society of America, or call a local high school or college and ask if they have a special program to help kids transition from grade school to college to work. You can help by going and talking about your work, reviewing resumes, or helping the students interview.

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.