Day 20: One Thing People Don't Understand

Autism is a life-long condition. It cannot be cured. The misunderstandings of this concept run a gamut from the ignorant, dangerous and unfathomable actions of parents making their children drink bleach to cure them of autism to the more well intentioned yet ill-informed people hiring people with autism and thinking their work is done at that step.

Early diagnosis and intervention are necessary steps to help children with autism. The sooner the problem can be identified and addressed, the sooner the children can get the help they need to function on their own and succeed in school, work and society after that. Failure to do so takes us back to the days when autistic children were locked up in asylums and left to rot, unable to reach their potential and have meaningful lives. Recognizing that these children had skills and could communicate if we dealt with them on their own terms enabled teachers and parents to teach them ife skills as well as they could any other child.

Even as we mainstream these children in our schools, more work is needed. Teachers and students past the pre-school and elementary grades need to learn more about their different but not less peers to prevent bullying and ostracizing, which can lead to autistic students become depressed, tuning out, and losing ground. After public school, transitional help is needed in colleges and labor to continue the work to transition them successfully to jobs and independent living. When hired, managers cannot stop the work they did in accommodating the candidates in hiring - simple, ongoing supports are needed in the work place, management and coworker training is crucial to retention, and plans need to be put in place for future hires and management changes. Every parent of an autistic child knows this and worries late at night: What will my child do when I am too old to care for them or when I die?

Autism awareness and acceptance is doing much to change this. Nonprofits work to train retailers and other businesses to be autism-friendly. Popular television shows help by showing the unique talents and challenges of working or befriending people with autism. Hiring programs are learning more each day about how to retain talented and loyal persons on the spectrum. But more work and vigilance are needed to finish the job of integrating autistic people into society and ensuring the received wisdom and lessons from generations before is not lost.

People went through herculean efforts to help Steven Hawking to stay alive and productive. He required a personal nurse every day to help him live, a team of crafty people to devise the means for him to communicate, and special accommodations for him at every step of his movement around the world or in his home town. Consider the benefits we received from that, and ask if it's worth far simpler measures to help millions of other bright, hard-working people become productive members of society, living independent and fulfilling lives. These actions make better managers and co-workers, improve company morale, strengthen communities, cost far less to society than warehousing people, and are the humane and just alternative to the practices our civilization enacted in the past, some far too abhorrent to name here.

One of my favorite songs by John Cougar Mellencamp is called "Check It Out" in which he sings,

A million young poets
screaming out their words
maybe some day those words will be heard
by future generations
riding on the highways that we built.
I hope they have a better understanding.

I, too, hope that the work we are doing creates a better world and a better understanding that is not lost.

Day 19: Communication

Communication is the exchange of information – we do it many different ways in our lives, but one of the most obvious is verbal – talking.

Some people with autism are non-verbal; they don’t speak at all. Some are verbal, and can speak very well. Others are a bit between the two – they can speak when they are relaxed and comfortable, but when stressed or tired, they clam up.

It’s important to note that just because a person is non-verbal, it does not mean they cannot communicate. Helen Keller could communicate very well; see Carly Fleischmann for an example of a woman with autism who can communicate, and is even a talk show host…but does not herself utter a word! There are many children who use a symbolic language with the aid of a book full of symbols or an iPad. They are able to communicate basic needs.

Communication is an issue in other ways for persons on the spectrum. Many people on the spectrum take communication literally; if you say something is cool, they might think mean “cold” and not trendy or exciting.

Knowing the communication skills and differences of your employees – on the spectrum or not – makes a manager and coworker communicate more effectively. I have some people on my staff that need very plain, simple, step-by-step instructions. Others can get a vague description of a task and finish it. My wife can blurt out “Hm” while holding her chin and looking askance at the TV at 9PM and I know that means: “I want an ice cream sandwich” – and I am already down the stairs to get it.

Good teams, managers, and husbands figure this out : )

Day 18: I hate it when...

...ANYONE insults or is rude to an autistic individual or their family*. Especially in public. What most upset me recently is to hear the story of a young man with autism ordering food to go who was stimming as he waited for his order to be handed to him. Another patron of the restaurant said, "I wish people would keep their r****ds at home."

Why couldn't the rude patron see that he himself was just as uncomfortable as the young man who was stimming, and see common ground?

I imagine many of the people on this blog have similar stories, but I am not so sure I'd want to hear them because they make me so angry.

*(or anyone else who is rude in public, really...I have a soft spot for wait-staff and I really can't stand people who are rude to them.)

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.