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

Day 1: Autism Awareness Day? Week? Month?

I follow a Facebook Group in which one of the members challenged us to write something every day for Autism Awareness Month, providing topics for each day. The first day is just an intro.

I run an "employee resource group" (ERG) or an internal website where I work that concentrates on autism awareness, support, hiring and research in my company. It has about 600 members so I wanted to share the posts I create with this group. 

When I went to create the post  I saw that I had missed what a colleague posted earlier in the week: A piece about the Autism Gap, and​ Autism Awareness Week. Both of them are worth reading, but the latter gave me some pause, and eventually the topic for this piece.

My colleague's post celebrates the week as March 26th-April 2nd. April 2nd is Autism Awareness Day, and the whole month of April is for Autism Awareness. I'm easily confused (a fun party game), I don't know what authority decides these things, but it occurred to me that it doesn't matter. Whether we are parents of autistic children, looking to change recruiting and HR to accommodate autistic people, researching autism, or #actuallyautistic - we are always aware of autism and always looking for the rest of the world accept autistic people.

Still, I accepted this challenge for this month and I will do my best. I will post each day on a new topic around the subject of autism. Most of the time my expertise will be sorely challenged or utterly lacking. What I hope, though, is that as I share each topic some of you will respond from your points of view as parents or autistics, and we can learn from one another to help spread awareness and acceptance the rest of the year. I hope you will participate and bear with me.

The summer my taste in music changed

When I was in eighth grade I thought I was pretty cool because I liked the Moody Blues. I’d heard them on my brothers’ eight tracks in the car and I thought that was hip. Guitars and powerful voices WITH AN ORCHESTRA. Or at least a Mellotron. Anyway, no one else my age listened to them – they were old! – and that was part of the appeal. Because I was a dick. Other kids were listening to Journey or Zeppelin and I just sadly hadn’t come to appreciate them, yet.

But in the late afternoon of one eternally long adolescent summer afternoon, with a dry, warm breeze blowing along the long shadows of yellow and green, my friend Mark invited a few of us to his house to listen to his brother’s album by Frank Zappa.

I’d heard of him. Heard he was weird. Just didn’t have the resources to try it without hearing it, first. So I wanted to try this.

We all got high, and Mark put on the album Joe’s Garage, Acts II and II, side one. On comes a guy speaking through a megaphone about the First Church Of Appliantology, and a song launches about being taro-fied and I learn the phrase I love to use to this day, “It’s just a token of my extremes.”

The song is about a guy named Joe going to see Dr. L. Ron Hoover [sic]. The good doctor tells Joe that in order to solve his problems, he has to learn German and go fuck an appliance. Dr. Hoover tells Joe a bar to go to – The Closet – where he can accomplish this, and then asks for 50 bucks.

The song has a long fade out. At this time Mark tells us the best part is coming. “You are not going to believe this next song.” In between, a guy called The Cental Scrutinizer tells us that Joe has walked in to a bar called The Closet and started to hit on dancing machinery covered in marital aids.  Then Mark gets up. The next song starts. It’s hopping.

It’s in German, and Mark mouths the words. I do not know what is going on. I am stoned and Mark _______ is dancing like a child acting in a vaudeville show, lip-syncing a song in German. Oh, and I AM STONED. I’M IN EIGHTH GRADE AND I AM LISTENING THE MOST BEAUTIFUL MUSIC I HAVE EVER HEARD. AND I AM STONED.

It gets to the middle of the song and the singer takes a break while Joe notices one of the appliances noticing him. The machine hits on him with classic come-ons, and propose to dance with Joe. Joe has a better idea. Mark is ready to lip-sync again as Joe repeats what he had said in German, earlier, but now in the English words that changed the trajectory of musical taste, forever.

FUCK ME, YOU UGLY SON OF A BITCH! You ugly son of a bitch!

FUCK ME, YOU UGLY S-

The four of us exploded into laughter for the obvious reason, but because I am a dick, I thought I heard something more. Rather than just the shock of saying a vulgar word in middle school that could get you suspended – the power that word once had! – I felt for the first time what irreverence means. I had crossed a rubicon.

The song went on, introducing a new phrase and repeating it four times each:

STICK IT OUT! Stick out your hot curly weenie!

Till it squirts, squirts, squirts, squirts, FIRE!

Don’t get no jizz upon that sofa, sofa.

The next song involved the two of them enjoying sex until Joe pees on the machine, destroys it, and is immediately confronted by The Central Scrutinizer that he is under arrest for destroying government property.

I remember going home and calling Mark when I got there to ask where his brother got the album. “Two Guys,” he said. A department store near my house that I went to, often. Got caught shoplifting there, once. I went there the next day.

But this time I marched down there with my semi-honestly earned allowance – I had to be reminded frequently to do my tasks – and I bought the thing. A double-album. $11, if I recall correctly. I had the money and then some.

As I walked to the cashier to pay, I bumped into my brother. Six years older than me. He looks at me, “Hey! What are you doing here?” I never thought liked me. Not that it made me special, he hated EVERYONE. What shook me was that he sounded nice for once.

“Getting this Frank Zappa album.”

“Oh, I hear he’s kinda weird. I might have to tell Mom and Dad about this he said.”

But he did something weird when he said that. He smiled. I knew he was joking. I read his face properly for the first time. I don’t know why that strikes me.

“Well, I’ll see you later. I gotta go to work.”

I went home and listened to it. I had to listen to it in the living room, where the phonograph was. I had headphones so I sat in a chair nearby and listened. I went past the songs I was already familiar with and made the gut-wrenching, soul changing discovery of what heroin must be like: Frank Zappa guitar solos. They were meaner than anything I had ever heard. Odd-metered phrasings, influenced by middle eastern sounds and atonal scales. I did not know these things then, but I sensed their presence, somehow, and had to learn the currency for them.

I told my friend a few weeks later, when school started, what the whole album was like. He never listened past the first three songs he’d played for us, really. He said it seemed boring but he was happy I liked it.

I was now turned down a path less traveled a lot of people had walked down before me but were not here now and I could not find them. I believed there must be other people who listened to him, and I had to find them.

Taking a Music Theory class in tenth grade, I started to find them. First, we were learning about fundamentals – rhythm, harmony, antecedent and consequent phrases, melody, chord progressions, scales, modes. We learned these along with the history of Western music, with its roots in Greek tetrachords, up to the present day, and all the changes in how each fundamental was used in each genre and age. When we got to Jazz, something unlocked in me.

I got an explanation for how music works, and how it was unfolded to make music incredibly new, visceral, and and intellectually stimulating. Because now I got music. Before, I had just dug the whole, big, sound. Now I could hear inside the music and appreciate the craftsmanship and ingenuity of some musicians.

During this time I picked up a Jazz album from the library. I had to hear this stuff. It would piss off my father because he absolutely hated Jazz. More than Rock and Roll.

I stared at the meager collection, and saw an album called, “Sunday Walk” by Jean-Luc Ponty. Jazz Violin. I liked violins. Jazz violin? Let’s try it. I took it home and dropped it on the turntable without the headphones.

Four acoustic instruments – drums, double-bass, piano, and violin – impeccably recorded live from a performance that, from my father’s JVC walnut console phonograph and reel-to-reel, sounded as if it was happening in front of me. My hearing sucked but this record was so well done I could hear the rosin dust settling on the face of the violin as Ponty sawed those strings.

I now got it. I heard how the chord progression changed and the soloist followed it. I heard how the how the melody was introduced and then played with, in turn by ever instrument. I got this and I loved it for some reason. I understood how it was put together – and I respected it.

Our project in that class was to explicate some music of our choice using the knowledge we’d picked up that year. One student in the class, a year ahead of me, wore a King Crimson shirt – Discipline, the red one with the knotwork. I had heard of them. “What’s it like? I asked. “I’ll make you a tape,” he said. He had friends who introduced me to Killing Joke. I was forever freed from top 40 radio. I would also never have another normal conversation about music for the rest of my life. And I am still a dick.