Transcription

CHRISTA: Hey everybody, this is Christa Holmans, Neurodivergent Rebel, and I’m here with Paul Austin.  We are going to dive in and have a little chat because Paul and I were talking about the importance of having awesome allies and how you can be a good ally to autistic and neurodivergent people, and Paul has some really good questions.  So, I thought today we would dive in together and I would get down to some of the bottom of these questions and help Paul out here with these ideas he has.

PAUL: Awesome.  Thanks so much for having me, Christa.  Like they say on call-in shows, I’m a big follower of yours, “First time caller, long time listener.”  I really appreciate you taking the time to work with me.  My first question is: In my business here at IBM and at other places, I want to be a friend to neurodivergent people, so what are some of the first big things you can tell me to do to make that a successful adventure?

CHRISTA: Yeah, I think one of the big ones is listening.  When a lot of autistic or neurodivergent people were trying to either come out or share things, sometimes people really don’t stop and listen to what we’re actually trying to say.  They get like “Oh, I know what you’re talking about” or “Everyone has a little bit of that” or “Isn’t everyone a little bit autistic?” or “I never would have guessed!”  And they’re not listening, they’re just – maybe they’re feeling uncomfortable and feeling awkward, so they don’t know how to deal with this information, so they’re like ‘fill the silence with something’ and they almost always say all the wrong answers.  So wait and see what that actually means for the autistic person when they come out to you and say “Hey, I’m autistic” or “Hey, I’m neurodivergent” because every neurodivergent or autistic person you talk to has a very different experience of what that means to them depending on a lot of factors in their life.  It may be something that they feel is actually a gift to them, but they may also feel on the other end that it is a big curse that makes their life more difficult, and those feelings are very intimate and very personal.  I think the biggest and most important thing is not to make assumptions, and really realize that you are meeting an individual.  Don’t get hung up on all those stereotypes and preconceived notions that are really common, unfortunately.

PAUL: Yeah, what strikes me about it is it’s a lot like the emergence of LGBTQ folk over my lifetime.  When you first met a gay person, it was like “Oh yeah, I know a gay person” or “I got a gay friend” or “You’re gay, so you must do this, right?  You must wear funny clothes, or be able to dance better than the rest of us, or choose better colours, right?”

CHRISTA: There are so many parallels.  We could almost honestly do an entire video just talking about the parallels between the autism & neurodiversity movement and the gay pride/LGBT movement.  When you think about it even, back as far as in many of our lifetimes – not my lifetime, but your lifetime probably – being gay was pathologized in the DSM, and it was a medical condition.  And now we’ve seen that come out of the book.  We had gay conversion therapy with the treatments, and we’ve got similar things with autism that still are thought of as okay.  It’s really interesting seeing those parallels being played out again and again, whereas autistic people are very similar.  We have the autistic pride movement, you know … “We’re here, we’re autistic – get used to it” instead of “We’re here, we’re queer – get used to it.”  It is quite similar.  And as someone who is in both camps, autistic AND a queer person, it’s like I’m always blown away by the similarities, but at the same time, it hurts a little bit to see how behind we are when you compare the two movements.  We are probably 20 or 30 years behind the gay movement, I would think.  But maybe it’s not that bad; maybe I’m catastrophizing.  For example, if I come out and say “Hey, I’m autistic,” people don’t know how to respond to that, and probably will say the wrong thing.  But if I came out and said “Hey, I’m gay,” you wouldn’t be like “No you’re not” or “I don’t believe you” or “I couldn’t tell.”  You would not say any of these things.  Most people know that’s totally wrong.  We’ve got a long way to go, unfortunately.

PAUL: Well, we’ll stick that topic in our back pocket for another conversation we can have – maybe do a second one of these videos.

CHRISTA: It’s a big one.

PAUL: Okay.  One of the things I’d like to ask is, I’ve met and worked with a lot of autistic people, and one of the things I’ve noticed is they can be very intense.  How do I deal with intensity?

CHRISTA: Ooh, that’s a good one because I am an intense person.  I can be very direct, and I might not be the person you want to ask for an opinion if – let’s take the stereotypical “Does this make me look fat?” – I’m probably going to say “Yeah.”  I might know now as I’ve grown older to not say that, but my instinct is to be open and honest with you.  When people know me, that can be something people come to me for honest feedback.  But people don’t know me and aren’t expecting that intensity … they may be a little more sensitive and they come to me looking for maybe support and they come to me and ask a question, and I’m going to give them a very direct, intense, and honest answer.

PAUL: You don’t do it with malice; it’s just honesty.

CHRISTA: No.  It is just honesty, because I would rather people approach me with honesty than sugar-coating things because I am confused by that, honestly.  I don’t pick up on all that sugar-coating.  Just tell me how it is.  Just spell it out for me, you know.  I know I’m all over the place.  If you don’t know me or you’re new, you’ll know me by the end of this video.  I can be a lot, and I can really be too much for some people – those often are not my people, I’m finding out, you know.  I wish people would let me know when I’m being too much, whatever that means to them.  A lot of times – I’m getting used to it now – but people will just silently slink away, and they don’t say anything, they just ghost me.  I don’t get an explanation; there’s no opportunity to correct my behaviour or to figure out what I did wrong or did I accidentally offend someone?  It’s just like “Oh, okay…” there’s no benefit of the doubt, it’s just “okay, I guess I messed that one up” instead of that upfront, really honest communication.  People can be blunt with me.  I wish people would be blunt with me.

PAUL: It’s interesting that you say that, because I remember John Elder Robison talking at one of the Autism at Work summits, and he said “If we’re doing something wrong, tell us.  Tell us what the proper behaviour you expect is, and we can do that.  We can learn that, and we can do it forever.  We’re that easy.”  But people don’t want to cross that bridge.  Why is that?

CHRISTA: The dancing around it.  I don’t know.  I feel like, as autistic people, we’re always stretching our communication styles to accommodate non-autistic people, and it’d be nice if they would do a little bit of the stretching too.  We all have different communication styles.  Autistic people aren’t the only people who are direct communicators.  Non-autistic people can be direct communicators too, so it’s finding that meet-in-the-middle, because I do modify my own communication in order to meet people who I know need a little bit more help.  Now, that’s because I’m obsessed with communication, and so studying communication – autistic, non-autistic, and beyond – has become one of my obsessions since I was diagnosed autistic and was told “You have a communication deficit.”  I thought “I’ll show you … I’ll learn everything about communication!”  In my 30s I’m learning about communication.  It’s been really beneficial, but not everybody has those tools, and so there’s a lot of stretch going on – it’s not evenly proportioned, unfortunately.

PAUL: Okay.  Another topic I’d like to discuss is meltdowns.  I hear a lot about meltdowns; I know people confuse them with kids throwing tantrums or people just being emotionally unstable.  Explain to me what a meltdown is, and how I can help someone who is having a meltdown.

CHRISTA: First, I think the really important thing is to clarify what a meltdown is, because people hear meltdowns and they think tantrums.  Those are two very, very different things.  And so, a tantrum is what we think of with the little children on the floor, screaming and crying because they want to get their way, and that last part … we underline that there.  It’s easier to spot in children, because they’re doing this for attention.  They want something.  They are trying to get an outcome.  A tantrum, they might stop if nobody is paying attention to them, or they get what they want all of a sudden, they’re happy again, or whatever.  Whereas an autistic meltdown, although it might look like a tantrum, the motivations and the reality behind what is happening is very, very different.  For example, a meltdown, it really is beyond the autistic person’s control.  It is “my brain is overwhelmed, and I just can’t take anymore … I literally can’t handle anything else” and so they might start crying or fall to the floor because they’re just mentally done.  They are completely overwhelmed.  Our fight, flight, freeze response has been triggered, almost like a panic attack kind of a feeling.  It’s a horrible feeling.  You can also shut down, and just implode on yourself instead of having an outward letdown.  Or you may – it’s all internal – all of that ugliness you would see lashing out on the outside, we’re lashing out on the inside at yourself.  A shutdown can actually be worse and more painful for an autistic person.  At least with a meltdown, you have a bit of a catharsis at the end.  It can feel better, but the meltdown is not fun, it’s not under the control of the autistic person.  So, the person who is experiencing that, they’re no longer able to fully access all of their cognitive thinking – their adrenaline is pumping, and they’re just overwhelmed.  It’s like an eruption.  And it’s embarrassing.  When I have a meltdown … if I feel it coming, I’m going to run to the bathroom and hide somewhere alone, because I don’t want anyone to see me.  I’m not doing this for attention.  Attention is literally the last thing I want or am looking for.  As a kid, I just needed some time alone to calm down and breathe, but people would keep interacting with me and keep amping me back up.  It would get worse and I wouldn’t be able to calm because, really, you just need to calm your brain down and calm down and get over it … it’s just like riding a roller coaster – you’ve just got to get to the end of it, and you don’t have control over when it stops.  That’s a really big difference too, between that tantrum… you know, the telling someone “Calm down, calm down, calm down” like I said I kind of need to go away and calm myself down, but if someone is sitting there over me yelling at me to calm down, that is the opposite of what I need and it is completely unhelpful.  There are definitely some things to do to help but telling someone to calm down is the least helpful thing you can do.

PAUL: It doesn’t work with my wife.

CHRISTA: For anybody!

PAUL: No.  Yeah, it’s not good advice.  You’ve got to find out some way to help them get away from the stimulus that’s overloading them or whatever.  So that brings me to my next question, which is about stimming.  The thing I find fascinating about stimming is that I think everybody does it.  You know some people drum their fingers on their cup, other people snap their fingers.  My sister used to bounce her leg constantly when we were kids.  I met an autistic woman who got hired by our company who, every now and then, would just push her chair away from the table, walk a circle around the room, and then sit down.  So, what is stimming, and why can’t people just get over it?

CHRISTA: You are onto something … everybody stims to some degree, and that extends beyond humanity.  Animals kind of stim, too, like dogs.  If you see animals in the zoo, they’ll pace … like you were saying she’d pace around the room.  I will get up every now and then and just pace back and forth next to my table here while I’m working.  But autistic people, we stim more frequently than the general population.  It is, often for us, a very essential part of how we regulate and experience our world.  Where I try to be still, I can be still … but then all of a sudden … I was going to try and be still and talk to you, but I can’t.  I can’t even keep my train of thought when I’m trying to be still.  It takes so much mental focus to try and be still.  Even though I look like I’m being still right now, my top half might be still, but my legs are probably doing this wild thing under the table.  I’m sitting criss-cross applesauce in a chair right now, with my knees butterfly-bouncing the entire time.  I look like I’m being perfectly still right now.  When my hands are down, and you think I’m being perfectly still, but my legs are flapping like a little bird under the table.  You have no idea.  We’ve learned to do things that are socially acceptable, but for autistic people, it’s really necessary.  And movement in general, I feel is more necessary for me.  I get really dysregulated if I’m using my brain a lot – all that intense brain power – and I’m not physically moving enough to get that body energy out to match that.  I’ll get to where, at the end of the day, I feel like my body has so much energy that it’s almost like electricity racing through it, and it’s a horrible feeling.  But my brain is just zonked out, like zombie; I have nothing left in my brain.  It’s the worst feeling ever when you’re so amped physically, but your brain is done.  Toast.  I make an effort to go out and move, and walk around, and swim, do yoga … do physical things.  I have to make a purpose to do that or let my body stim to counteract everything else I’m doing.  When I don’t, I find my health suffers in other ways – my sleep cycle can be disrupted, all of these things that plagued me my whole life – but before I knew I was autistic and understood more about autistic brains and how neurology works, I had no idea, and was totally neglecting myself.  It’s come a long way, learning all about this.

PAUL: I’m beginning to wonder if we’re all born neurodivergent, but some of us are beaten into neurotypicality.  One thing I’ve noticed as a manager, working with neurodivergent people, is you guys like to talk and talk about something you know well.  And I’m a person who is concerned with time, with schedules – not really, but I have to pretend I am for this conversation – but you know, I’ll get into a meeting with somebody and I’ve got half an hour, and I’ll get somebody who takes 29 minutes of it talking about one thing.  How do I keep people from running away from my meeting?  Running away with my meeting?

CHRISTA: I do want to note that autistic people are probably just as likely to hold back in meetings and not know when a good time to speak up is, and not speak up at all, because I’ve been that person as well in the meeting.  When hosting meetings, I think it’s really important – not just for autistic and neurodivergent employees – because when I work with businesses, I tell them that a lot of the things I recommend they do for their autistic and neurodivergent employees are universally good for their workforce as a whole.  When having meetings, it’s better to set the same ground rules for everyone in the meeting; make sure there are clear ground rules for everyone, not just the neurodivergent employees.  We’ve had meetings where if someone is getting off track on a topic too long, with peer-to-peer accountability, anyone in the room can call out “squirrel” or “off-track” or whatever your magic stop sign word is you make up … “This is the stop sign word for the meeting. Anyone can call this out if we’re getting off track.”  And this is a universal meeting, not just for one employee, you know, sidebar.  Or we can say, you know, when we have our meetings, we run them on EOS in the company I work for, and so if there’s something we need to talk about later, we’ll drop it down …to drop down to discuss later as a team if it’s relevant or we can say sidebar and people can take it offline to talk about it later.  But it’s about having that accountability where people can say “Hey, we’re getting off track.”  And the other thing is, too, having a schedule and an outline and an agenda for your meeting.  Really, when you’re preparing your meeting, as a leader, do the groundwork and set out the outline and if you can prepare in advance, send the outline to your team and say these are the topics we’re going to go over in today’s meeting.  You go over those items, and when they’re done, you are done with the meeting, even if the meeting ends early.  And you don’t extend your meeting unless you say “Hey everyone, you know, we aren’t done yet … we still have these other items.  Can everyone stay?”  You check in with your team.  It’s all about having clear expectations and communication, and really setting up a structured meeting really well.  It’s the most important thing too, because any employee is going to take that away and run away with your meeting if you don’t have structure.  There’s going to be someone in there who’s going to say “We’ve got empty time.  Let’s fill the time with talking.”  And they’ll do it.

PAUL: Yeah, that actually sounds like great advice for any meeting, whether it’s neurotypical, neurodivergent, or mixed.  I notice a lot of people just don’t follow those kinds of things.  They don’t take the time to think ahead about what the goal of the meeting is, what the purpose … put together some sort of structure to it … I like structure.  I like it when meetings end on time so I can get to lunch and things like that.  I think that’s great advice.  Like a lot of things about dealing with neurodivergent people, it’s good for anybody.  All of these things make good practices for dealing with all of your employees, all of your friends, all of your whatever, your relatives.  So, the next question I have – you’ve confessed that we have some answers ahead of us here and questions written down – I liked your answer to this next one.  Are we really that different?  I confessed to having certain stims, I drum on my thing, I have specific deep interests like other people, I dislike some sensory assaults.  Does this mean I’m autistic if I stim, have sensory problems, don’t like to socialize, or am I just antisocial and introverted?

CHRISTA: I shared this before, but autism really is a yes or a no answer.  Just like being pregnant, you are pregnant, or you’re not pregnant.  There’s no in-between autistic or not autistic.  But there are a very specific set of criteria a person has to hit in order to be diagnosed autistic and you can’t just have one or two of the traits.  You really have to hit all the boxes.  Because autistic is genetic though, autistic traits are found everywhere throughout humanity.  It does make sense that people might have one or two autistic traits or a lot of parents of autistic kids will look at themselves once they go through the diagnostic process with their kid and say, “A lot of this fits me.”  Some people are missed growing up, they may not be diagnosed because their parents fit all the boxes but were doing so well in life, they had good coping skills because autism isn’t actually usually diagnosed – it’s in the diagnostic criteria that you have to be struggling in life – so when I was struggling and I was not feeling well and was sick from autistic burnout in a previous employer, it led me to being diagnosed … and that was because I was struggling.  Unfortunately, the mental health DSM medical model is basically a list of what an autistic person is in distress, and it describes an autistic person in a crisis situation.  I don’t think anybody knows, hardly, really, what an autistic person in good mental health looks like.  We don’t have that model.  It doesn’t exist.  Autistic people in good mental health are probably completely missed.  Also though, I really feel I need to say this … if you really, really, really relate to being autistic in a deep way, you might want to research the specific criteria more deeply because in my experience – and I said this myself before I was diagnosed, when I met my first autistic person and I didn’t know any better – I said it in my head, than goodness, and not out loud … I said “Well, doesn’t everybody experience that?” or “I think everybody has that.”  There is no “everybody is a little bit autistic” … those people often, although they don’t know it themselves, a lot of them might be autistic.

PAUL: Interesting.

CHRISTA: I’m not qualified to make that call, but it is worth looking into more deeply and investigating if it really resonates that strongly with you.  Maybe not.  Maybe there’s other things that are similar, that create similar experiences as well.  Neurodiversity is not just autistic people; a lot of my ADHD friends, we have very similar experiences and neurological profiles … some of them even have sensory issues.  They have stimming too, but they call it fidgeting in the ADHD community.  So, there’s overlap and a lot of nuances there.  Neurodiversity is a really broad spectrum.

PAUL: Awesome.  On that note, would you say all autistic people are introverts?

CHRISTA: Oh no, no, no.  Believe it or not, although a lot of us are, and I currently would classify myself that way, I’ve not always even been an introvert.  In fact, I can be really outgoing when I’m excited about a task or a project.  Or doing this right here, I almost threw my tablet across the room – I’m excited.  But, like an introvert, I really do need the down time to kind of go away and recover.  But there are definitely autistic people out there who are self-proclaimed extroverts, and they’re the ones that are going to be out there.  They’re more sensory seeking.  I myself will even be more willing to venture out when I’m on a sensory seeking mission.  If I’m not mentally stimulated, I’m going to get – I need mental stimulation, but if I’ve been in an environment where I feel like I have too much stimulation or I don’t need anything, I just need to calm, it’s very much the opposite.  I go into that avoidant, much more introverted mode where I need to recharge … battery’s drained, need to plug in, stay home, hide.

PAUL: Okay.  Do you just want neurotypical people to stay away from you guys?

CHRISTA: No, no, no.  Actually, no, not at all.  We really don’t.  I do need time and space and quiet to do my work.  I don’t hate people.  And the rest of the world, they seem to operate with a little bit less structure than I personally need.  That doesn’t mean that we don’t get out of our place.  It would be nice if non-autistic people would be a little more structured or they could be a little more understanding and accommodating to autistic people and the way we communicate and operate because I feel like a lot of times autistic people, we’re asked to do all the bending and stretching like I said earlier.  Non-autistic people sometimes forget that the autistic way is an okay way to do things too.  Just because we do things a little bit differently doesn’t mean it’s the wrong way of doing things.

PAUL: I’ve got one of those questions that also could be a whole other episode and that is why does it seem like there are more men or boys who are autistic than females?  Why?  What is masking all about?  Why do females more often get the question “Christa, you don’t look autistic to me”?

CHRISTA: Society!  Anyway, culture and society has a big influence on that, and especially western culture … women and girls, we put a huge pressure on each other from a young age to be socially acceptable and “ladylike.”  Manners are beaten into us, especially in the South and in Texas, like “Yes Ma’am, No Ma’am, Yes Sir, No Sir.”  You better not ever say “yeah.”  You learn these things.  You are trained, and you are corrected, and they are put into you until they become automatic responses.  You’re programmed.  Our male counterparts growing up often they were excused, you know things like “Boys will be boys.”  It was just different.  And the other boys don’t seem to put that pressure on each other the way other girls do.  Other girls, for some reason, they keep each other in check … “You’re weird.  You can’t do that.”  Girls can’t mind their own business.  They are all up in your business, and I think society teaches them to be that way.  It’s definitely conditioning, and it’s hard.  It puts autistic people into where they can start masking from a very young age, and I do want to note though, that boys and men aren’t immune to masking, aren’t immune to this because if that same pressure is applied to young boys, they’ll mask up in much the same way.  It really just depends on … generally, there’s less pressure on guys to have all of these manners and be a certain way, but at the same time, there can be.

PAUL: Okay.  What would you say is neurodiverse peoples’ biggest beef with neurotypical people?

CHRISTA: I don’t have beefs, but it all comes from miscommunication and misunderstandings, honestly.  But the important thing that I think we all really need to realize in all seriousness is that we’re all here in this together.  We need each other, and neurodiversity is human diversity.  It’s biodiversity.  It includes all brain types and that includes neurotypicals and non-autistic people.  When all is good and synchronistic and harmonistic in the world, piles of autistic weaknesses can be supported, especially in the workplace, and this is really true by a non-autistic person who doesn’t have the same weaknesses I do because my weaknesses tend to be (because I’m in the vast minority) weaknesses that my peers don’t have.  And so, it’s not that big a deal because someone else has that skill that I don’t have – probably everyone on my team has that skill I don’t have – and they can fill those gaps and they can help me and support me.  That’s great when it’s not made a problem and I’m not berated for having this weakness that nobody else has, and they understand that “oh, it’s just difficult for her” and they help.  Also, on the flip side of that, I’ve got some pretty … I like my skills.  I’m proud of the skills I have, and they tend to be skills that are a lot less common, and often are high in demand because I tend to be a very specialized person.  In a topic, I become all-in, and I learn everything about it, and I’m really good at being a specialist as long as I love something … and that’s kind of anything I fall in love with, autistic stereotypical thing where we’re all-in on the interest.  It can be a really, really good thing.  But we have to have that harmony, and when it works out, it’s great.

PAUL: You know, in the industry that I’m in, which is all about computers and technology and programming, it’s often a selling point to people in charge to say let’s hire some autistic people because they’re good at software testing.  Let’s hire some autistic people because they’re good at programming.  Is that all they can do, or can you do more?

CHRISTA: It’s a big myth that’s all they can do, and that’s unfortunate.  I think that comes from a lot of us; we do tend to be detailed people, and so those of us who are good at those types of things are really good at sitting through details and lines of code, but not every autistic person can do that.  We’re not all good at math.  We have a wide variety of skills, just like non-autistic people.  Like I said earlier, whatever we’re passionate about, we can dive into it fully and really be good at it.  Our skills and abilities can very really greatly from one person to the next.  We may not be good with numbers and coding, but we can be artists.  We can be teachers.  We can be public servants, elected officials even.  We can even be salespeople and work in customer service.  Believe it or not.

PAUL: Lawyers.

CHRISTA: Yes, exactly.

PAUL: Can you explain to me why being neurodivergent is not a disability, or is it?

CHRISTA: It really can be, and like I was saying earlier at the beginning of our chat, it depends a lot on what the person’s individual experience has been.  For some autistic people, we feel that this is definitely tying into my strengths, it’s been good.  But, you know, we can ask every person and their answer is going to be different.  For example, even with me, when I was working in an office under fluorescent lighting in an open office environment and I didn’t have any accommodations in place, I started to become physically ill from the lighting and I was having neurological symptoms.  Because the environment couldn’t be adapted to my needs, I couldn’t do the job to the best of my abilities, and since then I have moved on and found another job that is better suited to my sensory needs.  My whole life has gotten better and I’m doing better in the workplace, and now that I’m accommodated, I’m excelling in work.  When I was not accommodated, I really was failing.  And the work I was producing then, because I always felt horrible and I wasn’t my best self was honestly, in comparison to the work I’m doing now, not my best work.  It was remedial because I couldn’t show up and be the best version of myself every day.  I need to be able to give my all.  I’m an all or nothing kind of a person, and so having that support, so I can come, I will give every ounce that I have every moment of every day, as long as I’m feeling up to it (and supported).

PAUL: Great.  Well, I hate to sound like I’m trying to wrap this up with a nice bow, but I’m going to give it my best shot.  The thing that I’m hearing is something I’ve believed all my life, and that is that everybody’s different.  Everybody has a different way of thinking.  The more we celebrate that, and accommodate each other, the more harmonious things can be, and we all like harmony.  At least I do, anyway.  And I like seeing people excel at what they’re good at, so from my point of view, doing the simple things to accommodate the neurodiverse people, doing the simple things to accommodate some neurotypical people, it helps us bring our best selves to work, as everyone likes to say … or bring their whole selves to work, and it gets more out of people.  And that what we all want.  I mean, we all want to be able to execute to our potential, have fulfilling lives and jobs or pursuits, or whatever that means, and I really appreciate you taking the time to explain a lot of these things for me.  I hope it benefits your audience and mine.

CHRISTA: Thank you so much for having this conversation.  Good questions are worth their weight in gold, honestly, so this was really, really great Paul.  Thank you so much.

PAUL: All right.  Thank you so much, Christa.

 

 

 

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