Neurodiversity at Work – Neurodivergent Rebel at Autism at Work Florida (Oct 2019)

Transcription

[music playing]

 

Female speaker 1: Good morning. It is day 2 and I am almost ready to call my Uber for– so I can get– for so I can get myself what? So I can get myself over to the venue for Autism at Work uhhm because my hotel– it’s not at a hotel. So, lots and lots of Uber on this trip. Uhhm yesterday was really really great. Uhh There was a reception/happy hour which normally I dread these kind of things and I was dreading it a little bit. But once I went and actually sat down, it was the easiest networking and reception night I’ve ever been to because here people recognize me and know who I am uhh which means I don’t have to make a lot of effort to go up and talk to strangers uhh because they come up and talk to me which is making it so much easier. This is how I’m standing when I talk on the phone. Put holding stand.  So, anyway, I will sit and talk like this now. Uhh not really, I need to finish getting ready and I need to get out the door. I need to go do the things uhhm how can my phone won’t die again? This hotel is weird and there is no cellphone signal in the lobby, in the halls. I have a weak cellphone signal the minute I walk into my room it pops up. Uhhm but there is no signal in the venue either. I have no signal. Sorry, I almost forgot but anyway, I gotta finish getting ready and like go out, I gotta go.  I hope my phone hasn’t died. I mean I’ll just put in airplane mode or something.  Uhh because the no signal thing is like “Eww my battery– really really fast” and I want to be able to like record and show you things. So eh eh eh we’ll see. Anyway, gotta go. Bye guys.

Male speaker 1: And then after that we’re gonna have the breakout session so think about the panel that Dr. Dionne Mann would be running as a way for you to select where you wanna go to the breakout sessions. The breakout sess– we hope that you’ll enjoy the rest of the day uhh again we started with a great, great energy yesterday and now–

Male speaker 2: When we look at this whole world that we’re talking about, we wanna make sure that we’re following the advice and and the guidance from the people who we’re actually working with together on these programs. And and these people here are going to offer some of that to all of you. I know for me one of the things that I-I continue to try to use is a mantra in the work that we do uhh is uhh a quote by Maya Angelou that “I’ve learned that I still have a lot to learn.” And I think that that is really important to to think about especially as we are all interested in this topic: Autism at Work – Neurodiversity in the Workplace. We really want to make sure that we’re still serving the population that we’re serving uhhm and creating this inclusive culture together. So–

Male speaker 3: Uhhm I think I’ve kinda have 2 different answers, one kind of on the employer side and on the employee side. Uhh one simple thing is if you’re applying to a company that has an Autism at Work pr– program, it doesn’t feel very awkward to disclose that you’re autistic for them. Uhhm on the employee side, I think it’s a tough issue uhhm like kind of when and how much to disclose. But I think one important factor is the consideration of, you know, you can apply for a position disclosing you’re autistic or not but you can’t apply to a position being autistic or not. And, you know, it’s a judgment call but if you feel that well they might not, I’m bad at interviews- they might not hire me uhhm because I’m bad at interviews. I don’t speak well, I don’t make eye contact. Well those are situations I think disclosing can help uhhm because it provides a reason and it provides kind of uhh a window for, you know, the person giving the interview to kind of see past well– normally maybe this would be a behavior that we reject someone for. But there is maybe there is actually a reason for it and maybe we shouldn’t turn this person away.

Male speaker 4: Alright uhhm so I’m a senior leader at uhh at Capital One and we’re about to launch a Neurodiversity program there and I am autistic and I’m gonna launch it by coming out and I’m wondering like [chuckle] I’m wondering if you and you could speak to, you know, whether it is important for you to see leaders uhhm in your company– managers coming out themselves and I know John Elder Robinson made a very impassioned plea to like parents who might have neurodiverse traits themselves who might be in leadership positions to also come out. Uhhm this seemed like uhh kind of a missing thing from this whole discussion. I’d love to get your perspective.

Female speaker 2: Say when you bring employees into your workplace and you say we have an Autism at Work program and that’s like who these employees are and they’re, you know, they’re openly autistic, people maybe accepting and they may think they’re being inclusive but then we’ll always see these group of people as an other. And when you say I’ve always been here and I’ve been one of your leaders and hey I was on the spectrum the whole time and that those are the moments when you see people have this paradigm shift in their head like oh, this is not some special other. These people are just like people I know and care about and we’re capable of being leaders. So–

Male speaker 2: Empathy.

Female speaker 3: I just wanted to really encourage that kind of thought because people like me who, you know, I used to be working in jobs where I was underemployed or unemployed and I have big dreams and I still do about one day having my own business and I always looked up and around to say “Hey how many people like me have been leaders in some kind of company? How many people like me have been successful?” And you should really just know in your heart that you’re inspiring the masses when you do that and people just like you are just being so inspired. And just as a side note, I wanted to touch on the other question real quick. I want– I just wanted other people with autism to know that I have this little treatment to trade.  When I really want to learn a new job skill, I like to look at it as a science because I don’t know. Many of us are very scientifically minded or we like to look at it as a field of study. And if they can fit into our field of study then we can just learn it just like that. And when I first learned how to socialize, I drafted out as a probability and statistics and I could draft out people’s reactions to all sources of difference in their lives and if I have learned being social like it is a study and I read all the books on speaking and I read all the books on socializing and I draft out and I’ve ran experiments but are people ready for this?

Female speaker 1: Yes.

Female speaker 3: You could really learn anything.

Female speaker 1: Yes

John: Many of you in Autism at Work and and disability services uhh today uhmm are accustomed to a model where someone like I or my son would uhhm would receive some kind of disability support uhh or even receive social security disability if we felt ourselves unable to work. Uhhm in the 19 uhh 60s and 70s, if you could walk and you could talk, you could have a job. That was the thought in America. The idea that somebody like me wouldn’t receive a benefit from the government cannot work just lost.  They’re forbidden. And uhh so I uhhm I left home at an early age and I joined a band as it was what I could do. Uhhm I I worked in uhhm in music. I worked in electrical engineering. Uhhm in uhhm 1982, I found myself uhhm laid off and that was the one time in my life that I did apply for government benefits and uhhm I got 190 dollars a week unemployment and I thought to myself “This is bullshit, shit I’m not gonna do this”. And I flew to Georgia and I bought an old Porsche and I drove it on and I sold it I made a couple of thousand dollars on it and I said “that’s [inaudible]”

[laughter]

John: So I uhhm I started buying and selling uhhm old uhhm old European cars. And even when I got a job, I continued doing that. And uhhm I finally concluded in the uhh ni– late 1980s that I– I just couldn’t fit in in the workplaces. I’ve felt like I have failed and today I realized it’s because of autism when I couldn’t understand the social dynamics of work. Uhhm and and I think today things might be different. I think in the culture of like an SAP or Dell or Ernst & Young, I I think that actually those companies would would welcome me and I I could stay. Uhhm ironically, you know, one of the companies I left, Milton-Bradley the toy maker uhhm years later uhh you know related a TV show about that time in my life and the president of Milton-Bradley said I was one of their best engineers and I have quit Milton-Bradley because I thought I was a failure and I was on the brink of getting fired. And that really illustrates the invisible disability of this and how I could misunderstand the situation. But be that as it may, I quit and I decided to go on my own and I started a business fixing cars. And uhhm and I cannot stress how uhhm valuable the skills in operating a business like that are to a neurodivergent person with social disability because if you have a hard time talking to people uhhm you have a hard time knowing what to say, you don’t have any choice if you own a business. Before I started a business I have gotten me a wife and and by that time I have gotten a kid. The kid grew up and he is standing back there in the back. Uhhm but at the time, the kid had to be fed. And uhhm

[laughter]

John: –and that was absolutely no question and I have to operate a business successfully. So even if I was uncomfortable in social situation, I didn’t know what to say, I have to learn how to communicate successfully to build that business. And uhhm and it is grown uhhm we- we grew our business and we bought the building we’re in. We have bought the surrounding buildings. We, you know, we now or you know, we have all these affiliated uhh tenants and businesses that were [inaudible] in our complex which collectively, you know, probably employed uhh uhhm good many people, most a hundred. Uhhm and uhhm that uhh that to me is a model for neurodivergent employment in a combination just as you heard from John and Carol this morning uhhm people uhh people come to our workplace because they feel that uhh we are accommodating of people who are different. Our clients come to us because they feel that we are different and we do a better job. And uhhm and I think that that’s really important. Uhhm but it is absolutely clear to me that this kind of tolerance often carries a cost. I have to tolerate people who who break things, do things. They did say and do weird things and, you know, and if I was only focused on profit I might just throw them out. But I don’t do that because I believe in them. And and people recognize that and that is absolutely critical that the leader of the organization and everyone below have to follow that that model. And and then of course I I advised uhhm other organizations. I’ve been involved with uhhm IACC who produces a strategic plan for autism for our country for the last 8 years. I’m now also advising our Department of Energy’s National Labs on neurodiversity. And uhh and I teach neurodiversity at uhhm William and Mary in Landmark Colleges and and in both places with respect to work, I teach the idea that we need to be self-sufficient individuals. We need to not be reliant on government’s disability supports but we need to go out in the workplace and we can kick ass to make our own way. We need to not just be there. We need to be stars. And every one of us can be the star and I don’t mean that we’re gonna be brilliant innovators. I mean that we can be the guy everyone counts on in the maintenance department. We can be the guy who personally planted 3,600 moms and pops for the Eastern States Exposition just as well as we can be the guy who invented the next piece of hardware or software for a tech company like yours. We have to believe in that, we need to go out and do it. And and that’s gonna, you know, it’s a long road to get us there but that’s what I’m committed to.

Male speaker 5: Thank you.

[crosstalk]

Female speaker 1: All right, time for lunch so here in line. Better late than never. Get something to eat. We’ll go back in for more education.

Female speaker 4: Oh no no no I just have a [crosstalk]

Female speaker 5: We haven’t paid off that

Female speaker 1: Lunch was delicious. I’m pretty sure it was Chipotle which is hard to get wrong or knockoff Chipotle. Either way it was awesome. Uhhm now I’m gonna head inside and enjoy more education about neurodiversity in the workplace because that is the call that we’re putting out not Autism at Work, Neurodiversity at Work. And this carries my stamp of approval for sure.

Male speaker 6: So we’re about going– act as you guys please make sure that you stay awake uhhm and that you give our speakers your undivided attention. So, if you were here on–

Jamil: –and again what I want to make sure that we are doing is attempt to be inclusive is to make sure that our applause look like this and less more of reactions so that we are respectful of those who may have some sensory uhhm concerns and some opportunity there. So let’s just practice, can we do that? Let’s give that up for Dr. Steven Shore as he comes.

Female speaker 6: We are hearing about uhh people on the autism spectrum and the demand to wanna know how to make sure that there are opportunities for young people and adults with or not on the autism spec– spectrum in our companies and we need to know how to do that. We are learning from the models in the uhhm different companies and we are developing uhh resources for other companies that want to make sure that they are offering those opportunities [crosstalk]

Male speaker 7: An incredible amount to cover. I’m a person uhh with uhh an anxiety disorder, a learning disability an ADHD, in case you can’t tell. Uhhm I’m gonna try really hard not to uhh not to yell at you guys. But uhh uhh but it’s hard for me because I have so much energy and I get really excited and you guys’ getting me excited because this is an awesome group of folks, am I right? Yeah okay, good. And when we talk specifically about inclusion and the reason that I think that we, in the disability community especially those of us who are neurodiverse increase innovation, creativity and new ideas, is because we can’t be assimilated into the group. Inclusion is defined as uhh when a person feels that their uniqueness is valued and that they belong as part of the team, right? If you don’t feel that your uniqueness is valued and that you don’t belong as part of the team, what is that? It’s on the screen– Exclusion absolutely. But when you feel that your uniqueness is not valued but you belong as part of the team, that is where these kinds of teams where we walk and we talk and we do the same thing and we we’ve been doing it the same way for many many years. But then you get a person on the spectrum who comes on the side of that environment. You’ve been doing interviews the same way for the past 20 years and getting the same outcomes and the same people who are giving you the same products. And then you get somebody who is different who comes in there and all of a sudden it’s a disruption. You can’t assimilate them into the way that you have normally been doing things and that is what uhh leads to that innovation and creativity, all of the things that we as business want.

Female speaker 7: Okay.  So, the catalyst for me is I had a job and my current employer, you know, everything that kept coming up, say you need to do this, you need to do that. After I was diagnosed looking back was– I was being coached to be less autistic, you know, and I was pushing myself so hard to be everything my employer wanted me to be because I thought it was my dream job. And in my life, you know, I’ve made up a lot of social issues and I don’t have a lot friends but I love the things that I do, you know, my tasks, my my hobbies. Those would fill me up with so much uhhm joy. But, oh my gosh I just like had an autistic moment, completely lost track of what I’m saying.  It’s like malfunctioning. What– please [inaudible]

[laughter] [crosstalk]

Female speaker 7: Oh yes yes okay. So I started to have, you know, some of us may or may not have heard this before, “autistic burnout”. Uhhm and autistic people kind of unlikely– we talk about autistic burnout and I guess it probably a lot like burnout for anyone else but we say it’s burnout often caused by masking and trying really hard to push ourselves into the neurotypical box. Uhhm and it’s just like uhh do you know we’re saying, it is extremely physically exhausting to be masking all the time and it’s also really detrimental to your self-esteem. Uhh and so I started to have physical neurological symptoms. I started to get sick, I was wasting away and I was just so ill and my doctor was out of ideas and eventually she said “I think you have anxiety”. I’ve actually read something online about autistic uhh person and uhh uhh you know, it clicks. If you, if you’re not autistic it’s not gonna click but it really clicks. I couldn’t let it go so I asked if I could see someone who had experience in autism and, you know, she said “Hey, I don’t think you’re autistic but sure sure”. So she gave me, you know, the card for the local Autism Society Chapter and I called and specifically asked for people who had experienced diagnosing autistic women and adults because that is important. You know I was saying earlier, unless you have someone who really actually understands masking and adult women and adult diagnosis uhhm you’re gonna probably be misdiagnosed with something else.

Female speaker 8: Oh sorry. But these lights really are blinding.

[laughter]

Male speaker 8: I really hope this isn’t a stupid question but what would any of you who do masks say it’s the single big biggest pressure, force or reason that you do mask?

Female speaker 9: Well, I’m willing to take this one. I think the biggest reason at least for me is that there is so much stigma around autism and you so desperately want to be accepted. And I think we feel that we’re accepting of each other up here but that the rest of the neurotypical world isn’t always accepting of us. And for many of us it might have been because we want to avoid bullying. That was probably the biggest reason in childhood that I would mask is having not have get bullied whether in for me that was hoarding everything there was to know about the Twilight Series in high school.

[laughter]

Female speaker 9: And I couldn’t care less about vampires. It was not my thing. I’d rather be playing Pokemon. But I would learn everything to know about just so I wouldn’t get bullied and not have what to say to my neurotypical peers in high school. So for me it was always avoid bullying and you want to fit in. You also don’t want to be seen as less of a person.

Female speaker 7:  And I wanna add, too.  Uhh ’cause going through school, you don’t even know sometimes it’s autism that you’re being picked on for. I remember, you know, school in the 90s in Texas long time ago, case: “simple place not like this anymore”. But I had teachers, you know, when I was getting bullied and they wouldn’t stop or interject. And when I tried to go to this teacher for help, she said “Well, you know, if you would just act normal and stop being such a weirdo, the other kids wouldn’t pick on you”. So, masking is beat into us sometimes from a really young age whether we’re diagnosed or not. And so once I was diagnosed I realized and that’s what really shook me up and made me– well I had to go out and start talking about this stuff, is that I subconsciously have been packing away and hiding all of the things about me that made me autistic. And at the end of the day I would come home and can finally be myself, you know. But I I don’t, I tried really hard not to mask anymore uhhm and be authentic. But it it still isn’t easy because you get weird looks from people sometimes. Like I’m I think, you know, when I’m relaxed, I’m kind of visually autistic. I’m always stiming, I’m always moving, I’m not still. But I, if I need to go to a business meeting, I can put that away and is not sit slackery and but I’m not comfortable and my brain is just focused on trying to be some way that’s not organic to me the entire time and it just drains me.

Female speaker 10: Uhhm like the masking part of it is I believe the autopilot and I think part of [inaudible] upon but in a woman is that you try to conform to, you know, conform to be what, to be a woman. Part of masking is that like you’re trying to conform to gender roles of being a woman so I could, a lot of it has to do with that. Uhhm and that is sort of the baggage for, the baggage for this. But instead of like uhhm aside from like going on autopilot, I did burnout that results from that, too. Now like since post-diagnosis I am more now aware that there is to be burnout. So I need to kinda just rely on this masking or like doing too much and they get you just as weaker me or or have that help medicate that all the better. And now because I am more aware of it or if I know when I have a meltdown, I just take my keys, hand it over to somebody else and they gotta drive. So it’s that just I think it’s more numb externally what is going on and and I’m good, I feel a lot better really though.

Female speaker 8: Okay, Chandler, do you want to add any thoughts to that?

Chandler: Although it started at an early age with Autism, I didn’t really comprehend it at the time I was in grade school and also in high school. I was being bullied relentlessly during my education years. I can’t real– and I can’t really figure out why.

John: They were big enough to say we should share this with all other employers, public and private, in America and around the world and we should make it a universal thing. It is a big tent. I have seen the growth in the ideas that folks have expressed and and accepted as I have been speaking here since the beginning. This year for the first time, I saw several of you stand up and say “Yes, John, I I agree. I’m an autistic guy and I’m in management in my company and I’m gonna go back to work and I’m gonna come out and say ‘Hey I’m autistic and I stand as a role model for every other person in this company to be with me is autistic and neurodiverse into the workplace'”. That is a a huge achievement, folks, that we have done. And and yet, and look at what we have here. We have a conference where we have invited thousands of people by saying the door is open to everyone and you could all come. There is no charge. We only have a couple of a hundred people here and online we have some folks saying this is great. We have other folks saying well, that is no good because they’re not doing this and they’re doing that. And folks, you gotta tell people that the tent is big. If you think something else should be done in a small business or a big business or a nonprofit business, we are not running the one and only way to do this. But what we do have here is the one and only universally recognized brand that stands for our community and advocacy. And the final thing that I would like to offer you is when we started this, Jose announced with considerable pride that we have 60-some autistic people in attendance so we have 20-some autistic speakers here. So 10 percent of our atten– or of our attendees are autistic in speaking and of roughly– well almost a third of our attendees are autistic. And that’s that to me is really good. So, some people said to me “Well John, yeah that’s good. But it needs to be better”. It need– what does it need to be? If you folks think that we’re gonna be running this thing with 80 percent autistic speakers and 80 percent autistic participants, who is gonna be the rest of the community that’s gonna do this with us? The idea of neurodiversity is that we are a large minority in the population. But the fact is we are a minority. And if we’re gonna be in this together, together means together. It doesn’t mean just a minority. We need to all do this.

Male speaker 9: Yup

John: And I think we got a really good number here and we need to recognize that it’s not a failure that these other folks are not autistic. We need to recognize that it is a huge achievement that these are people who know and love autistic and neurodivergent people and they believe in it so much that they have given up big chunks of otherwise tech careers where they were doing technology things instead of advocating for humanity. And they’re doing it because we believe in it and they believe in it. And we just got put that in perspective and and I urge you when you go out and talk about this conference, tell everyone that the door is open. And if you come here, this is the place that you are gonna meet people and you are gonna have conversations and and this person or that person can have a collaboration with you that can change your lives. That isn’t gonna happen with 140 characters online. It’s gonna happen here and I just urge you to spread that word and and to recognize that this is for all of us to make. It is nor for someone to tell us. And when Jose say “Well we need a system of governance”. Absolutely we do but that includes autistic people, neurodivergent people of all kinds and non-autistic people because that’s what diversity is. It’s everyone, it’s not just us.

Male speaker 10: Exactly, okay [chuckles]

John: So with that, I guess I’ll go back to your your next uhh well what do I do now? Who’s gonna be–

[laughter]

John: Okay, you you got–

Jamil: When you have a summit that focuses on Autism at Work, many people just immediately go to whether be the corporate perspective or just type of industry jobs but also understanding opportunities for individuals that are in the arts and that that creates uhh a a an awareness that they can contribute in so many other factors is really important with the diversity within the talent that we have here that we’re presenting everywhere– everyone from Dr. Shore to uhhm Jack Wilson and and John and just what they actually contributed with sharing this to my experience yet again.

Male speaker 11: Thanks Jamil. I’m really encouraged by uhh you know, I’ve been attending several of these and over time I’m encouraged by a couple of things, more and more attendance by people on the autism spectrum, more and more dialog around that intersectionality that autism is only one dimension of a person. Uhh and also we’re getting better, I think, in putting these together and hearing perspectives from parents, from people in the spectrum, bringing them into panels. I think that’s that’s hugely important. And I know among this team and other employers we are trying to make sure that as we, as we shape the 2.0 versions of our program that the voices of those people are also incorporated to help us make our next steps. So thank you all for for sharing your perspectives here.

Female speaker 1: Okay I am here. I have made it to terminal whatever, C4. I’m waiting for my plane and I’m so tired. It has been the most wonderful whirlwind of a few 3 days. I haven’t even processed so much of it. But there have just been so many great conversations and it’s just been really amazing and lots of good things to come. Uhh I’m I’m excited by how far we have come. But I’m a little intimidated, you know, by just how far we still have to go. Uhh but, you know, we’re getting there. All right, guys, thank you so much for hanging out with me on this adventure. I will talk to you next time.

[music playing]

[end]

Leave a reply!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.