Day 7: The Autism Community

What does the “Autistic Community” mean? Many different people with manifold and different aims, some of which conflict, many that overlap:

• Non-profit advocacy groups such as Autism Speaks, Autism Society of America.
• Non-profits with specific aims such as promoting employment of autistics, such as The ARC, AHRC, Specialisterne, Autism Alliance of Michigan, or Music for Autism, a group that provides arts for autistic people and their families
• Social media groups run by autistics like Autistic Allies, Neurodivergent Rebel on Facebook and Twitter
• Social media groups run by parents of autistic children
• Government agencies at the national, state or municipal level
• Autistic Individuals and authors of renown like Temple Grandin, Carly Fleischmann or John Elder Robison
• Non-autistic Authors like Steve Silberman of “Neurotribes”
• Business Resource Groups (BRGs) or Employee Resource Groups like ASDaaS, our community in IBM, and IBM Autism Reseach Alliance (AURA)
• Business run by or for autistic individuals, such as ULTRA testing, the NonPareil Institute, The Precisionists, or GirlAgain!/YesSheCan

I created an internal website in IBM  to promote autism hiring specifically. Up until that time I knew about Temple Grandin, Specialisterne, and maybe Autism Speaks.

Since I created the community I have learned of the different organizations listed above and many more. The scope of the community has changed to include support, news, and a gathering place for all of us with this interest.

From all of these groups – and the one I created – I have learned many things: the idea of neurodiversity, the paucity of resources available to parents in some places and the wellspring in others, the disdain that some autistics have toward some organizations, and the various companies and nonprofits engaged in helping autistic people from children to adulthood. Each offers some clue to reaching the aim that we all have in common – helping autistic people find productive and happy lives in the world.

Day 6: Supports and accommodations for autistic staff

Today’s topic is about supports – what accommodations can a manager provide to help autistic staff?

Typically, they involve:

• Clear communication about policies and work – clearly explain what work policies with catch names mean and give explicit instructions about a person’s work. An “open door” policy might confuse some people and make them think they have to leave their door open all the time, and giving someone vague instructions that a neuro-typical person might easily understand could cause others to do the right task the wrong way
• Providing social cues or clues – some people may not understand the social environment of the neuro-typicals and may need a little help getting on in such an environment or may need to avoid it completely. On the flip side, your neuro-typical staff may need to understand that a co-worker’s reluctance to participate in social activities does not mean they are a bad team player.
• Altering the physical environment to remove irritants – autistic people might need fluorescent lighting changed, noise reduced, or distractions removed. They may also need to wear noise-cancelling headgear and their colleagues may need to learn to accept that and work with it.
• Giving notice of change – some autistic people like regularity and may need careful and advance warning of change – such as in a schedule – and the manager may need to explain why the change is happening – e.g., to explain that it is not a fault of the employee, or what change is attempting to produce.
• Providing short breaks and flexible work hours – autistic people need time to relax, work off stress, or stim. Fellow staff need to understand this and allow for it during stressful work times. Specialisterne taught this to our staff in the autism hiring pilot, and also taught the new recruits to take time each day to have a walk or relax in some personal way.
• Developing an understanding of autistic behavior – autistic people may prefer to be alone, may not look you in the eye, may perseverate on certain topics, or may stim by getting up in a meeting and walking around the room. Training your neuro-typical staff to tolerate, expect and accept this behavior helps.

These points are adapted from Marcia Scheiner’s “An Employer’s Guide to Managing Professionals on the Autism Spectrum”, Jessica Kingsley Publishers, 2017.

What I find ironic about them is that, barring only a few things I listed, these are accommodations all employees would enjoy, and managers can all easily implement. Who doesn’t want clear instructions on their work? Advice on how to deal with one another, or insight into why their fellow staff are aloof? A comfortable physical workspace? Advance notice of change? Breaks – which are allowed by labor law?

UN Autism Advantage Luncheon

At the invitation of Specialisterne, an IBM colleague James and I attended the Autism Advantage Luncheon at the UN today. The luncheon was attended by SAP, IBM, Microsoft, Cognoa, and various nonprofits and academics who support hiring autistic people. A stated purpose of the luncheon is to get people to network. James and I were purposely not seated at the same table, as were colleagues from other companies. This way we could meet people at various stages of implementing autism hiring from various lines of work.

The keynote speaker was C​aroline Casey the leader #Valuable, a global campaign to employ the estimated one billion people world wide with disabilities. She gave a rousing speech and implored businesses to act on this - not out of charity, but to their own advantage. "Ignore the inclusion revolution at your peril," she said, and implored the crowd to take the lead, asking for someone to do for this movement what Sheryl Sandberg did for women in tech.

Thorkil Sonne, CEO of Specialisterne, spoke as well, saying goodbye to the US as he returns to his native Denmark after four and a half years of living in Delaware. Specialisterne was the non-profit that we contracted with in Lansing along with Autism Alliance of Michigan when we did our hiring pilot last year.

At the close, the UN's Jeff Brez - Chief of NGO relations in the Department of Public Information - asked the crowd three questions: 1)are you convinced of the autism advantage; 2)can you influence employers to be convinced; 3)what will you do next? Many people spoke up, including me - I mentioned our pilot in Lansing, remarked that we are considering more, and urged everyone there to network and learn from one another. That is how I got inspired to create this community and help my colleagues set up a hiring pilot. One person admitted he was still incredulous and wanted more proof of the success of hiring autisic people, to which one person responded he should talk to people like Jose Velasco at SAP, whose five-year old program is the most mature and successful one I can name in our industry.

Many of the attendees will also be at the Autism at Work Summit in Redmond, WA starting on April 24th. James and I both made a few new friends, and I think it is safe to say James was as inspired as I was when I first went to the UN three years ago.

A few more photos - top right, Thorkil Sonne of Specialisterne; bottom left, Caroline Casey of #Valuable. The other photos are of me meeting a young autistic woman from the Hague who runs a language translation startup, and a woman from Poland who works with autistic people (her first time in the US, ever!).

Day 5: Special Interests

Some autistic persons have intense special interests coupled with a strong attention to detail. This can make them very good at learning things like gaming, programming, software testing. It's not limited to those subjects, however. My nephew shows an affinity for gaming, movies (generally BAD horror movies) and things to do with the military. He can quote movie scenes verbatim, tell you the cast members and details about them, is very knowledgeable about the details of different releases of his favorite video games, and he had a passion for his military career - knowing the rules and regulations like the back of his hand. He also LOVES Star Trek. Any and ALL of it. If I recall correctly, his first word was, "Space" - the first word said in the opening of the original series.
If you misquote a movie or bungle a fact about one, he's there to correct you. If you have a question about a specific armament used by the US Military, he can answer it. His passion for bad horror movies is shared by his one sister and parents - they often spend weekends watching them on video and look forward to every new release.

What special interest do the autistic people in your life have?

Day 4: Reactions to Coming Out as Autistic

If you are autistic or someone in your family is - what are the reactions people have to your disclosing the fact? Do you disclose it?

When my nephew was diagnosed, my family all shrugged our shoulders and accepted him as he is. We treated him like anyone else in the family and included him in everything from fishing to waterskiing. We love his sense of humor and his stories from the army. As an MP, he did not distinguish between officers and enlisted men when making arrests. That's how it should be, right? One would think so, but it seems a colonel and his wife thought they should have been given a pass on a DUI, once : )

Day 3: Autism diagnosis or discovery story

Today’s topic is about the reaction to a discovery or diagnosis of autism. My sister found out her son had Asperger’s around the time he was in first or second grade. My father was the one who told me. He explained to me that my nephew had Asperger’s, and said it was a form of autism.

I had never heard of Asperger’s, but I did know about autism. At the time, neither terms were in great circulation. This was around the time of DSMIII (Late 80s), when Asperger's and Autism were separate diagnoses. Whatever the case, I knew he was in good hands. My sister and her husband have worked very hard to get him through public school, the army, and two associate degrees.

My siblings and other nieces and nephews accepted him as he is. We enjoyed his odd sense of humor (we are all very irreverent), his fascination with horror movies, Star Trek, video games and the military. We know he is a stickler for detail and will call you out on any mistake you make on any of those subjects. He can be brusque at times, but we know he has a good heart and the right intentions.

When my sister and her husband received the diagnosis for their son, we lived far apart and spoke infrequently, and because they kept their son involved in everything like the rest of his cousins, I assumed everything was fine. My sister would get frustrated and express it privately from time-to-time – to me, her husband, our parents – but publicly she acted as if her son was just another child who deserved an education. Her rare displays of anger were reserved for school officials who did not pull their weight or neighbors or friends who mistreated her son from time-to-time.

I’ve long admired my sister and her husband for seeming to sail through this calmly and without a hiccup. They made it look easy. They acted as partners and their marriage is still strong after 34 years. But there was a lot of hard work, and many tears and struggles behind the scenes. It makes their accomplishments – marriage and in raising their children - all the more admirable.

There is an Autism community page on my company's internal website. Many people post there about their children. It is impressive how they share it so freely. Some members tell me that many “side conversations” take place in which they support one another or suggest help. If that’s all the  community ever achieves, Then it is a success. The community is there for many purposes, support being one of them.

Day 2: What I love about being autistic is...

It’s day two of this month-long challenge and I am profoundly stuck: I am not autistic, and I cannot answer the proposition. I have often thought that my own hearing impairment, since birth, offered a clue into what it is like to be autistic. But I still cannot genuinely say I know what it is like to be autistic.

Instead, I do my best to understand – as I wish people would do for me and my hearing problem. I listen in on many Facebook forums and Twitter feeds to see what actually autistic people say. I’ve read numerous books in the last few years, some written by actually autistic people.

What strikes me the most about the people writing these fora and books is how proud they are of their abilities, and how fiercely they want to be recognized as different, not less. I also hear much of the struggles they have in getting by in jobs or social situations.

I can instead say what I love about those people, and that is their pride in their abilities and their strength to endure against a world that is often indifferent and at least not understanding. I hope this month we can change at least a few opinions or open a few minds to the possibilities of hiring people with autism, or at least learning to treat autistic people with the respect they deserve.

I would love to hear what parents or actually autistic people have to say about their pride in autism.

thanks,
Paul