Wednesday, April 25, 2018

Day 24: Symbols

I know of two prominent symbols for autism awareness: the long-standing but recently disputed blue puzzle piece, and the new, emerging infinity rainbow for neurodiversity.

There is an interesting history about the puzzle piece written here. I did not know it has been around since 1963! The other symbol, and neurodiversity, are explained here.

The puzzle piece has come under fire, mainly from actually autistic people, of late. They feel that it puts the wrong emphasis on them and their condition as being a missing piece of their lives, or they feel it represents or is promoted by organizations, like Autism Speaks, that they disagree with to some extent. The new symbol, the infinity sign, is gaining some traction but the term neurodiversity and the symbol are not yet widely known or accepted. Also, the people who do not like the puzzle piece sometimes disdain the "light it up blue" campaign as well for the same reasons. They suggest gold because the periodic table symbol for gold is Au. Other suggest red. What I find interesting is that if you add gold salts to molten glass, you get red glass in the end!

Nonprofits like Specialisterne have symbols for their programs. Specialisterne chooses the Dandelion because of the misconception of the worth of the plant. Is it a weed to be eliminated or a resilient plant that feeds bees, tastes good on salads, and can grow anywhere? 

Monday, April 23, 2018

Day 23: Political Issues Around Autism

To me, a political issue is one that involves disagreements between two parties In large portions of the public. There are many in the autism community

  • Identity or person first language – some autistic people or parents prefer “identity first” language (I am an autistic person) versus “person first” (I am a person with autism). The former feel that autism is an integral part of their being, the latter feel that they are a person, first, and autism is just one aspect of their identity. There is even a third, nominal way to refer to a person with autism (or an autistic person): an autistic. This also has adherents and detractors.
  • Funding for autism research – should autism be cured? Is it something that can be cured? Some would disagree and want research to go into help autistic people get on better in the world or raise awareness.
  • Vaccines – Some still adamantly believe that vaccines or part of their makeup cause or help bring autism into being.
  • Benefits – should autism be considered a condition for which one gets benefits from the government, private insurers, or employers? It is not consistent in all 50 states, nor is the belief that one should.
  • Autism Speaks – some autistic people despise this organization because they refuse to deny the idea that vaccines cause autism and because they search for a cure.
  • Civil Rights – speakers like John Elder Robison believe that the move to integrate autistic people into education, the workplace, and society is a civil rights issue on a part with any other in the last century.
  • Autism Moms – the autistic communities that I listen in to on Facebook and Twitter get outraged at certain mothers in the public eye, such as Judith Newman, author of “To Siri, With Love.”

Whatever the issue is, I try to keep an open mind and listen to both sides. There are some that I come down squarely on one side or the other, but on others I am content to sit on the fence and adapt to whatever group I am speaking with at the time.

Day 22: I can't live without....

Today’s challenge is about things that autistic people can’t live without. I can’t speak to this topic, though I can imagine many autistic people would say things about their family or friends who support them.

What I know I can’t live without in my efforts to spread autism awareness, acceptance and hiring are the many kind words I have received from the members of this community, the assistance I have received from HR in IBM, the support of my managers in my efforts, the support of the Autism at Work community across the globe, and from the many friends I have made in all the different spaces around autism – education, volunteering, teaching, and so on. I have learned a lot in the past three to four years and I am grateful for meeting all of you.

Saturday, April 21, 2018

Day 21: Dispel a Myth About Autism




There are so many. I’ll take on a few.

1.     They have no empathy – autistic people, by the origin of the word autism (form of Greek autos- "self" + -ismos suffix of action or of state), are thought to be locked up in themselves and have no empathy and cannot connect with or bond to their parents. They actually are quite empathetic. Here is a Scientific American article on the topic. In short, they do not express emotions like the rest of us learn to. Emotional expression is a form of communication – we read it from others’ body language, facial expressions, tone of voice. Because some of them do not learn to wear their heart on their sleeve, we have to find other ways to read their emotions and encourage them to learn to verbalize it. I recently read an amusing post by an #actuallyautistic person who explained he even apologized to inanimate objects and plants!
2.     Their condition is caused by unsympathetic mothers – this was actually a belief at one point. Mothers who did not bond with their children were called “refrigerator mothers” because they were cold to their infants and this was the cause of the child’s inward turning, according to Leo Kanner. If that were true, it fails to explain the mothers and fathers who work very hard for their autistic children. This myth caused so many mothers grief, guilt and despair, and unfortunately the attitude continues.
3.     Autism is caused by vaccinations – don’t get me started. This idea has been disproven countless times, but Paul Wakefield and a portion of the population still hold on to the idea like some do chemtrails or the idea that UFOs regularly land in Accord, NY. Celebrities like Jenny McCarthy didn’t help. Furthermore, the #actuallyautistic community takes great offense to the idea that their unique condition is caused by a poisoning.

There are many more out there. Exposing the moldy, pernicious and harmful ideas to the sunlight of rational examination and similarly allowing the seeds of truth to germinate is the best way to dispel the nonsense. Research things, talk to parents of autistic children, credible doctors and – very importantly – #actuallyautistic people.

Friday, April 20, 2018

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.

Thursday, April 19, 2018

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.)