Masking and Mental Health

Jacquelyn Fede, Ph.D. Author

03/08/2021 Added

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[00:00:01.330]Hello, everyone.
[00:00:02.570]My name is Jacquelyn Fede.
[00:00:04.450]I'm going to be presenting to you today
[00:00:06.320]on masking and mental health.
[00:00:10.380]A little bit about me, 'cause I always
[00:00:12.782](laughs) forget to introduce myself,
[00:00:14.770]I am a research nerd, program-evaluation data scientist
[00:00:21.490]on a National Institute of Health grant,
[00:00:25.160]here in the great state of Rhode Island, the Ocean State.
[00:00:30.120]I do tracking and evaluation and community engagement.
[00:00:33.500]So, what are the things that our grant is providing,
[00:00:37.650]in terms of research infrastructure?
[00:00:40.250]And, are we meeting the needs
[00:00:41.580]of the communities we aim to serve?
[00:00:43.440]So, that's my current job.
[00:00:46.810]I also am part of Autism Level UP!
[00:00:49.310]with my colleague, Dr. Amy Laurent,
[00:00:52.100]who is not here with me today, but often is.
[00:00:55.550]And, we create free downloadable resources,
[00:01:00.360]tools, supports for the autistic community.
[00:01:04.060]Those are all free and online for you
[00:01:06.210]if you go to autismlevelup.com
[00:01:08.530]or if you find Autism Level UP! on Facebook,
[00:01:12.500]you will have access to all of our supports.
[00:01:15.460]So, that's me.
[00:01:17.680]Oh, (laughs) another important thing,
[00:01:19.460]I am autistic.
[00:01:21.940]I was diagnosed when I was 29 years old,
[00:01:25.920]so I don't know, a few years ago,
[00:01:27.860]I always forget my age.
[00:01:30.480]I'm 32, so a few years ago.
[00:01:33.211]I went to school undiagnosed and
[00:01:37.770]part of that was kinda the context of the time,
[00:01:40.810]back in the '90s, early 2000s.
[00:01:44.370]We have come a long way in our understanding
[00:01:46.830]of autism and it just really wasn't even a thought
[00:01:51.130]at the time, that someone could,
[00:01:53.680]or a female or a girl or a woman, might be autistic.
[00:01:57.160]So, that is a little bit about me.
[00:02:01.310]I will also tell you that, (laughs)
[00:02:03.030]there's a lot I could tell you about me,
[00:02:04.530]but then this presentation would go way too long.
[00:02:09.610]Important for this presentation on masking
[00:02:11.950]and mental health, when I was 29,
[00:02:15.550]what led to my autism diagnosis
[00:02:18.470]was going through a very severe autistic burnout.
[00:02:22.830]When I started my job, this very job
[00:02:26.470]that I still exist in today, within two weeks,
[00:02:30.770]I went from being a completely functional,
[00:02:33.540]competent PhD student, doing a dissertation,
[00:02:39.552]on time to graduate, all that stuff, to basically
[00:02:45.120]not being able to function.
[00:02:47.090]The lowest low in my life.
[00:02:48.480]I questioned every few days whether I was suicidal.
[00:02:53.693]And, the answer to that question was always no,
[00:02:55.450]I don't want to die, but it is
[00:02:57.420]as if I cannot figure out how to live.
[00:03:00.170]And, that burnout came from the immense amount
[00:03:05.320]of energy that I was putting into, everyday,
[00:03:09.490]wearing the mask that I had built up over my lifetime.
[00:03:13.560]So, lots has changed.
[00:03:16.881](laughs) I could do a whole 'nother presentation
[00:03:18.170]on all the changes that took place,
[00:03:19.900]but I will say it's six in the morning here,
[00:03:22.810]I'm recording this at my prime time during the day.
[00:03:24.900]I did 45 minutes of bike sprints before this.
[00:03:28.040]I am literally still sitting at my bike desk here,
[00:03:31.850]pedaling away, and I'm ready to go.
[00:03:34.300]So, we're gonna talk about masking,
[00:03:36.720]we're gonna look at what it is,
[00:03:39.190]why it happens and why this impact on mental health.
[00:03:43.180]And, towards the end, we'll also talk about,
[00:03:45.980]what are some of the things we can do to ensure
[00:03:48.780]that we're not contributing to a mask being built
[00:03:51.840]or how to support someone where we think that,
[00:03:55.300]you know, their entire outward presentation
[00:03:57.950]is just one big mask that has been shaped by everyone else.
[00:04:01.110]So, let's jump right in and I will be there live with you,
[00:04:06.800]so please put questions into the chat.
[00:04:09.210]I will answer them as we go.
[00:04:10.830]If it's something I know is coming up,
[00:04:12.670]I'll probably ignore you, just FYI.
[00:04:15.840]So, let's start right up here.
[00:04:19.310]Oh, it seems I'm at the end of the presentation,
[00:04:21.700]not the beginning.
[00:04:23.730]Here we go, let's start right up here. (laughs)
[00:04:26.370]Masking, what is it?
[00:04:29.120]First of all, a little bit of context.
[00:04:31.290]There's a harsh reality for autistic people in this world.
[00:04:33.840]We know through many, many studies
[00:04:36.440]that there's an elevated risk for mental health conditions,
[00:04:39.610]higher suicidality rates, 66%,
[00:04:42.970]versus 17% in the typical population.
[00:04:46.360]And, these are all recent studies.
[00:04:49.510]And, what's even better, or worse,
[00:04:52.800]depending on how you're looking at it,
[00:04:54.420]more autistic traits, you have an even higher risk,
[00:04:57.270]so people who exhibit those really
[00:04:59.900]stereotypical autistic traits,
[00:05:02.160]like flapping and rocking publicly
[00:05:06.220]tend to have an even higher risk
[00:05:08.650]for their mental health conditions and suicidality.
[00:05:13.850]So, it's no surprise, really, given this reality.
[00:05:17.990]Those are recent studies, but we could
[00:05:19.970]look back over time and see that it is
[00:05:24.300]and has been the reality for autistic people.
[00:05:27.660]It's really no surprise that we find strategies to blend in,
[00:05:31.580]some kind of camouflage or disguise,
[00:05:34.570]and ways to be able to pass as normal
[00:05:38.450]or neuro-typical like everyone else.
[00:05:42.110]And, you know, studies that further show that
[00:05:45.350]the more of those stereotypical traits that you display,
[00:05:49.010]your odds for poor mental health outcomes
[00:05:51.950]and suicidality are even higher, it just speaks
[00:05:55.630]to this idea of masking as, really, a survival mechanism,
[00:06:00.740]a coping mechanism for a world that was made by people
[00:06:07.860]with brains that are not like yours.
[00:06:10.650]So, that is the context that we're in.
[00:06:14.080]And, that's an overall look of, what is this mask?
[00:06:17.530]It's this being able to pass.
[00:06:19.130]It's looking like everyone else.
[00:06:22.070]It's going along to get along,
[00:06:24.220]is how some autistic colleagues of mine have described it.
[00:06:29.480]So, is it a good thing?
[00:06:32.110]I'll let you think for yourself.
[00:06:33.840]And, I'm sure, because you all are wise and worldly people,
[00:06:39.860]you can probably think of both pros and cons of masking.
[00:06:45.080]And, often when I'm doing this live or interactively,
[00:06:48.100]people say, you know, well, there's things
[00:06:52.130]that you might have access to in society
[00:06:54.580]if you're good at this masking thing,
[00:06:57.000]that you wouldn't otherwise.
[00:06:58.970]And, there's other people that say,
[00:07:01.120]but also, that's a problem and you shouldn't have
[00:07:05.770]to be putting on a full-on fake everyday
[00:07:09.640]to be able to have access to those things.
[00:07:11.840]So, pros and cons, right?
[00:07:14.570]And, when we ask autistic people, why do you mask?
[00:07:18.530]What say you, autistics?
[00:07:19.710]Why do you mask?
[00:07:21.020]There are many reasons.
[00:07:23.050]These are just a few from one study.
[00:07:26.980]I could have many of these little blue bubbles
[00:07:28.930]filled with things, but some of the things
[00:07:30.640]you hear really commonly are, to be taken seriously,
[00:07:33.690]to fit in, to get a job, to be able to get along
[00:07:36.870]with peers and coworkers, to reduce awkwardness
[00:07:40.200]for other people, to perform well at work
[00:07:43.500]or be perceived as performing well at work,
[00:07:46.360]and to not be called out, just to go unnoticed.
[00:07:49.240]Again, that idea of just going along to get along.
[00:07:52.840]And, there are many more, again, this is one
[00:07:54.930]qualitative study from 2019, but many, many reasons
[00:08:01.582]and as I alluded to earlier, you know,
[00:08:06.810]what did I allude to earlier?
[00:08:08.220]I got distracted.
[00:08:09.340]Well, anyway, there's many reasons and it's a diverse range.
[00:08:14.950]So, let's talk about what it looks like.
[00:08:18.210]There are many reasons someone might do it,
[00:08:19.700]it can also take many forms.
[00:08:22.150]It can look really differently from person to person.
[00:08:25.530]And, by its nature, it can look different within a person,
[00:08:31.280]within one person, across several days,
[00:08:33.530]weeks, months or years.
[00:08:36.080]It can be learned implicitly through the observation
[00:08:40.900]of others, pop culture, media.
[00:08:44.350]I told you I was undiagnosed as a child,
[00:08:46.980]but I really lived my life by trying to observe
[00:08:53.160]what were the hard and fast rules of society
[00:08:58.170]and really making everything into an equation.
[00:09:02.270]And, I'll talk a little bit (laughs) more about that later,
[00:09:04.210]but essentially it's, okay, in situation A,
[00:09:08.120]I can do X and Y when W is present,
[00:09:11.400]but if L, M, N, O, P come up, then I can never do C
[00:09:16.090]because of Z.
[00:09:18.120]Like, it is an extensive observational script.
[00:09:23.740]So, when I say learned, it's not just, I see it
[00:09:28.290]and I can do it, it's a constant, vigilant act,
[00:09:33.930]but to others, it would look very fluid
[00:09:36.540]and natural 'cause we're pretty good
[00:09:38.890]at learning scripts and acting. (laughs)
[00:09:41.760]It can also be learned explicitly and linked
[00:09:44.500]to someone's academic goals and objectives.
[00:09:47.910]So, the very things that contribute
[00:09:49.930]to a mask may be the things that staff and teachers
[00:09:55.120]and parents explicitly say they want out of their child.
[00:09:59.640]So, you know, more conversation about these topics
[00:10:05.020]that are relevant to all their peers or,
[00:10:08.440]you know, being able to sit for some amount of time.
[00:10:13.040]They can be very explicit and they
[00:10:14.780]can be very much implicit as well.
[00:10:18.430]So, what does it look like to others?
[00:10:20.200]What you may see.
[00:10:21.600]Truthfully, what you may see is actually nothing,
[00:10:25.140]because by the nature of masking,
[00:10:28.520]autistic people are trying to blend in
[00:10:31.140]and they're trying to go along to get along.
[00:10:34.140]So, they may just look exactly like everyone else.
[00:10:37.840]But, you may see, and this specific set of what you may see
[00:10:42.730]is really common in girls and females.
[00:10:47.650]Masking in general is done by all autistics.
[00:10:55.380]Research shows that males, boys, girls, women,
[00:11:01.240]all genders in between, have reported some form of masking,
[00:11:05.950]but it is especially common in autistic females,
[00:11:10.870]women and girls.
[00:11:13.190]And, I just want to point that out
[00:11:14.790]because this list especially is really
[00:11:16.820]about a study with females, women and girls and this study
[00:11:21.010]did not include boys, so just so you know that upfront.
[00:11:24.690]What you may see is that the child
[00:11:27.450]or the person tends to hover near others.
[00:11:31.100]They kind of exist on the fringe of a group.
[00:11:34.950]They'll rely on others to talk or take the lead.
[00:11:38.440]They're always following, they will never put forth
[00:11:41.350]their own opinion or needs or demands.
[00:11:47.510]And, one thing that teachers and parents
[00:11:51.250]tend to report about autistic girls
[00:11:53.580]is they tend to be neglected, rather than rejected.
[00:11:58.570]So, you might not see all-out bullying towards them,
[00:12:03.950]but they're largely ignored.
[00:12:06.890]Neglected is a good word.
[00:12:08.860]So, I already said, you may not notice at all,
[00:12:10.810]because by its nature, it's an act.
[00:12:14.230]Even though someone may look like they're hanging out
[00:12:20.070]with others or fitting in, parents will often report
[00:12:24.680]that their autistic, their daughters,
[00:12:27.710]they might not know they're autistic at the time,
[00:12:29.910]often report lower social awareness,
[00:12:33.210]even if it looks like they are blending in with others fine.
[00:12:36.520]Often, they will be better in games with rules
[00:12:39.690]and explicit expectations than in that freeform,
[00:12:43.670]unstructured social situation.
[00:12:47.680]That was definitely very true for me.
[00:12:49.910]I could play any game in the world
[00:12:53.870]for as long as I needed to, but, you know,
[00:12:57.300]five minutes of unstructured social time
[00:13:00.877]was like, (sighs) I couldn't do it.
[00:13:04.220]By the time I had a thought of what I could contribute
[00:13:06.690]to the conversation, it was five topics in the future
[00:13:10.010]and I don't even know what I had missed.
[00:13:12.340]So, games with rules versus freeform.
[00:13:15.460]And, oftentimes, they can be so good at masking
[00:13:21.900]that they're described as charismatic,
[00:13:25.300]very in tune to people's needs and to the social.
[00:13:29.906]And, that is, you know, because when we study something,
[00:13:34.900]when we observe things, again,
[00:13:37.140]we can become very expert at it,
[00:13:40.080]and so you will see many people describe them this way.
[00:13:45.230]That was also true for me.
[00:13:49.920]My teachers would say it, my parents would say it,
[00:13:52.330]my soccer coaches growing up would say it.
[00:13:55.380]I was a big soccer player.
[00:13:56.740]Again, those games with rules and explicit roles,
[00:14:00.100]they worked for me, kept me sane.
[00:14:01.720]So, these are just some of the things
[00:14:03.600]that you may see, (phone beeping)
[00:14:05.334]that could mean someone is masking.
[00:14:08.120]Of course, it would have to be in context of other things.
[00:14:10.360]We would never take one of these things,
[00:14:12.370]like, oh, that person is kind of neglected,
[00:14:16.610]but they're not bullied.
[00:14:18.690]You can't take it out of the context
[00:14:20.370]of other things that may be contributing.
[00:14:22.870]But, these are some hints, we'll call them hints,
[00:14:25.370]as to what you might see.
[00:14:27.620]And, common strategies reported by autistic people now.
[00:14:31.330]So, what autistic people say is the mask to them.
[00:14:37.180]What are they doing?
[00:14:38.040]They're resisting and holding in their natural responses.
[00:14:41.420]They're not letting energy or emotion show at all.
[00:14:46.300]Often described as, like, a solid emotional rock or stoic.
[00:14:51.210]Mimicking and memorization is a huge strategy.
[00:14:55.240]Researching pop culture
[00:14:58.430]with the purpose of being able to engage
[00:15:01.160]in non-preferred conversations is a big one.
[00:15:04.990]Resisting one's own needs and preferences,
[00:15:07.210]going with the flow.
[00:15:08.630]Doing anything not to stand out.
[00:15:12.020]And, that is one side of it.
[00:15:14.790]You may also see someone who attempts
[00:15:17.530]to control all aspects of a social situation.
[00:15:21.440]And, that is, you know,
[00:15:25.800]a mechanism by which they can ensure
[00:15:29.680]that things will be predictable
[00:15:31.540]and go as they expect them to go,
[00:15:33.670]so that they can keep up this facade.
[00:15:37.100]And then, participating in activities
[00:15:38.610]and conversations not of interest,
[00:15:40.120]which goes along with up top and doing
[00:15:43.410]that research and background work and rehearsal of what
[00:15:46.400]can be said in these kind of freeform social situations.
[00:15:52.750]Really important.
[00:15:53.730]It's never just one of these.
[00:15:55.710]You know, doing just one of these at one point in a day,
[00:16:00.200]I think we'd call that more like a little social ache.
[00:16:04.935](laughs) Masking is a combination
[00:16:07.640]of all of these strategies and more
[00:16:10.740]for prolonged periods of time.
[00:16:13.910]You will have several being used and others not being used.
[00:16:19.010]You might have three or four that are core
[00:16:22.000]and that are used relentlessly all the time,
[00:16:24.980]and then the others are filtered in as needed.
[00:16:28.840]They're expertly crafted and highly accurate,
[00:16:30.990]so part of the mask itself is knowing when and how
[00:16:35.600]to use all of those strategies over there,
[00:16:38.620]in what environments, around what people,
[00:16:41.140]for what purposes, at what times.
[00:16:44.330]It is all, again, (phone beeping)
[00:16:46.150]expertly crafted and highly accurate.
[00:16:49.520]And, that is why someone might be perceived
[00:16:52.380]as being so in tune to people's social,
[00:16:56.310]because they have created this mask
[00:17:00.730]to essentially cater to everyone else in the environment
[00:17:05.290]and destroy the inner self in the process.
[00:17:10.250]So, just important to know, like,
[00:17:15.640]anyone can do one of these things at some point
[00:17:19.410]and it doesn't mean that they're masking.
[00:17:21.510]Masking is an all-encompassing, all day long,
[00:17:24.690]all day strong, exhausting, hypervigilant activity.
[00:17:31.270]So, just to keep that important note in mind.
[00:17:35.250]All right, so we know a little bit about what it is.
[00:17:37.730]We know what it could look like,
[00:17:39.700]though it takes a different form for every autistic person.
[00:17:43.980]And, as you can imagine, you know,
[00:17:45.600]when you think about a culture,
[00:17:48.360]because the pieces of the mask
[00:17:54.370]are observed, are learned, based on that culture,
[00:17:57.500]you know, a mask in the little state of Rhode Island
[00:18:00.720]will look different from a mask in the Midwest
[00:18:03.440]or the Southwest or the southern part of the United States.
[00:18:05.980]It will look different than someone
[00:18:07.410]masking in Europe or Asia.
[00:18:10.890]It is very bound to the norms and expectations
[00:18:14.160]of that current society and place.
[00:18:17.110]So, let's talk about mental health.
[00:18:20.050]We know that autistic people who engage
[00:18:21.840]in more stereotypical behaviors
[00:18:24.580]have more mental health symptoms,
[00:18:26.120]we kinda started off with that notion, and more suicidality.
[00:18:30.300]So, what about autistic people who hide these things,
[00:18:32.730]who suppress those traits and appear more neuro-typical?
[00:18:38.470]Well, the sad reality is we are damned if we do
[00:18:42.450]and damned if we don't. (phone beeping)
[00:18:44.310]There are more mental health symptoms and conditions
[00:18:47.960]among people who mask as well.
[00:18:50.860]Higher rates of depression, higher rates of anxiety,
[00:18:54.150]higher rates of social anxiety,
[00:18:56.270]often symptoms of post-traumatic stress.
[00:18:59.720]And, we can talk about why that happens in a little bit.
[00:19:03.440]It contributes to an overall shorter lifespan
[00:19:06.490]of autistic people.
[00:19:07.970]So,
[00:19:12.067]the average in 2017, I will have to look up, again,
[00:19:15.450]if this has changed, 2017, American Journal of Public Health
[00:19:20.200]determined that the average lifespan
[00:19:22.190]of autistic people was 35 years of age.
[00:19:25.890]That's horrible.
[00:19:27.500]And, there's a huge range.
[00:19:29.740]So, many people live a full-out life.
[00:19:33.510]Some of this is coming from things like not being aware
[00:19:36.840]when you're in danger, not sensing pain, not sensing cold,
[00:19:41.000]not sensing internal sensations in your body.
[00:19:43.650]All of those can contribute to really serious conditions
[00:19:47.660]that someone else would've had treated
[00:19:49.390]months and months and months before.
[00:19:51.180]There's many things that contribute to this,
[00:19:53.370]but masking is one of them.
[00:19:56.440]And, we'll talk about why in a bit.
[00:20:02.070]Other outcomes that are associated with masking,
[00:20:03.850]still more frequent suicidal ideation,
[00:20:06.380]still higher rates of suicide.
[00:20:08.890]It is obviously a predictor of missed diagnosis
[00:20:11.730]and more frequently misdiagnosis.
[00:20:15.310]You'll often see diagnoses of things
[00:20:17.770]like borderline personality disorder or bipolar
[00:20:22.190]or generalized depression or generalized anxiety,
[00:20:25.840]or OCD is also a big one, or a string
[00:20:30.420]of these diagnoses that aren't quite right,
[00:20:33.840]all before an autism diagnosis or not at all,
[00:20:37.930]before that diagnosis may never come. (laughs)
[00:20:41.600]And, it is associated with what I described
[00:20:43.470]in the beginning, autistic burnout,
[00:20:45.040]which is an extreme fatigue and inability to function.
[00:20:48.920]And, it's not just, I'm sleepy.
[00:20:53.922]It is a low, low, low for an extended period of time.
[00:20:57.490]I can't quite figure out what to compare it to.
[00:21:04.440]I don't know.
[00:21:05.900]But, burnout is a good word.
[00:21:09.690]So, why is this?
[00:21:11.090]Why does masking relate to such poor mental health outcomes?
[00:21:16.960]The truth is we don't really know.
[00:21:20.060]We don't have good research yet.
[00:21:22.240]There's more, people are becoming aware
[00:21:24.700]of this masking phenomenon and more research is being done,
[00:21:30.640]but the truth is there's a huge disconnect
[00:21:32.990]between what researchers, autism researchers,
[00:21:35.810]do and what the autistic community actually needs.
[00:21:40.280]So, I have this little tweet up here
[00:21:42.830]from an autistic advocate.
[00:21:45.280]They've put up a question that says,
[00:21:47.410]why did the actually autistic person cross the road?
[00:21:50.220]The researcher says, give me a generous grant,
[00:21:52.990]a reason why crossing the road is a challenging behavior,
[00:21:55.390]plus 1000 mice and I'll answer that.
[00:21:57.990]And, it's funny and exaggerated,
[00:22:00.210]but it's not that exaggerated.
[00:22:02.610]There is a lot of research being done in the realm of autism
[00:22:07.440]that is very far from what the autistic community
[00:22:12.400]would list as their top priorities and needs.
[00:22:15.010]Remember, I'm a community engagement person.
[00:22:18.430]That's, like, a big pet peeve of mine.
[00:22:22.110]And, research should be attempting to line up
[00:22:24.850]with true needs and priorities
[00:22:26.450]of the community it is aiming to serve.
[00:22:29.310]So, we're getting more research
[00:22:31.220]in the area of masking and mental health.
[00:22:33.240]We've got a long way to go.
[00:22:35.570]But, theoretically, we can make some hypotheses here, right?
[00:22:43.170]We know that this is not natural and this is forced.
[00:22:47.090]I told you a little bit about the equation-building.
[00:22:50.240]Everything in life for me was, when X,
[00:22:53.380]then A or B, but never C unless Y,
[00:22:55.940]but not when Y and W occur together, unless also D.
[00:22:58.950]It is high vigilance all the time.
[00:23:01.070]There is constant planning, constant rehearsal.
[00:23:03.810]It's a huge cognitive demand because you're not
[00:23:07.190]just putting out this script, doing what the script demands.
[00:23:12.030]At the same time, simultaneously, you have to force
[00:23:15.750]and squelch down everything that is your natural response.
[00:23:22.100]And, it's a huge amount of energy
[00:23:24.400]and it's a huge amount of stress.
[00:23:26.580]And, we do know, there's plenty of research to tell us,
[00:23:29.900]that these huge amounts of stress, that releases cortisol,
[00:23:36.450]and cortisol for prolonged periods of time,
[00:23:39.286]you know, in the short-term, it has its purposes
[00:23:41.220]and we want it to release when we need it,
[00:23:44.330]but when it is released for long durations of time,
[00:23:49.020]it has terrible effects on the body.
[00:23:51.830]And, we know this from many other populations.
[00:23:54.850]We know this from people who live in poverty,
[00:23:57.380]where your stress (phone beeping)
[00:23:58.510]is constantly higher because everything
[00:24:02.140]in your life is harder, more stressful,
[00:24:07.290]just
[00:24:09.730]bearing down upon you.
[00:24:11.500]Cortisol is constantly being released
[00:24:13.890]and that is one of the reasons
[00:24:16.300]why it's not so much about, you know,
[00:24:20.010]the number of dollars you have in your bank account,
[00:24:23.530]that has no direct effect on your health,
[00:24:27.240]but all the things that come with it,
[00:24:29.620]such as cortisol and high stress,
[00:24:31.900]do have a very negative influence on your mental health.
[00:24:36.230]And, that is one link, for sure.
[00:24:40.320]Another very obvious link is that your life
[00:24:45.330]is basically a constant reminder
[00:24:48.680]that the real you is not okay.
[00:24:51.490]If I just, (sighs) I wish we were live
[00:24:54.650]because there is an exercise I do
[00:24:57.670]where, and I can describe it to you,
[00:24:59.970]I would have someone stand up in the audience
[00:25:02.520]when I'm giving this kind of a presentation
[00:25:04.420]or something similar, and I'd say,
[00:25:07.100]think back to your last stressful event.
[00:25:10.980]It can be minor stress, major stress,
[00:25:13.240]but something stressful that, you know, distracted you
[00:25:16.940]from what you were doing, you had to do something about it.
[00:25:21.010]Think back to that and let us know
[00:25:23.610]what that was like for you.
[00:25:25.490]And, inevitably, if this person is neuro-typical,
[00:25:30.310]many of the times, they start talking about it
[00:25:33.100]and start talking about how they felt in the situation.
[00:25:36.530]And, I will immediately cut them off and say,
[00:25:39.930]are those words?
[00:25:41.400]Are those feeling words?
[00:25:42.890]Are you using feeling words?
[00:25:45.110]You know, I know you know better.
[00:25:47.410]I know you know you're not supposed to use those words.
[00:25:49.920]And, I know you know how to flap your hands.
[00:25:52.260]You know, I want to help you, but I need you
[00:25:56.330]to show me with your energy, I need you to show me
[00:25:58.770]with your body, what was going on, what was feeling.
[00:26:02.260]And, this freezes them and I go on and on,
[00:26:04.510]I start moving their star down the chart
[00:26:07.240]or changing their clip color, take away
[00:26:12.620]their preferred activity of socialization with peers.
[00:26:16.110]And, you know, the audience inevitably,
[00:26:19.100]kind of what happens is first they laugh
[00:26:21.210]'cause they realize what I'm doing,
[00:26:23.690]but eventually the laughter really stops and people,
[00:26:28.610]they kind of have this very sobering moment of,
[00:26:32.820]this is what we do to people every single day.
[00:26:38.160]We take something as core to the personhood
[00:26:43.530]and to the human as how someone responds to stress
[00:26:48.820]and their energy and their emotional state,
[00:26:52.570]and we tell them how that should look
[00:26:55.860]and why the way they show it is broken.
[00:27:01.420]And, that can be someone's entire
[00:27:04.530]educational career and life.
[00:27:07.520]And, if you don't think that that would contribute
[00:27:10.550]to mental health problems and those post-traumatic stress
[00:27:14.490]kinds of symptoms for you over a prolonged period of time,
[00:27:19.290]I think I'll just say you're wrong (laughs) on that.
[00:27:21.780]That is a very damaging way to live one's life.
[00:27:26.480]And so, we don't have enough research, on one hand,
[00:27:31.270]but on the other hand, it's like,
[00:27:32.770]of course it contributes to mental health.
[00:27:35.570]How could it not, right?
[00:27:38.369](sighing)
[00:27:39.930]I'm parched, I'm talking too much.
[00:27:41.650]This is what happens when you have to record a video.
[00:27:43.390]No one interrupts you, there's no break. (laughs)
[00:27:47.470]Okay.
[00:27:48.950]So, that's a little bit about why,
[00:27:50.680]at least what we know about the why right now
[00:27:53.760]and what we can theorize about the why.
[00:27:56.800]And, I really, I ask you to reflect on that.
[00:28:01.670]If you take one thing away...
[00:28:04.470]Hopefully my Google Chrome notification
[00:28:07.640]isn't popping up for you, I always forget to turn those off.
[00:28:12.290]Hopefully, if you take one really major thing away
[00:28:16.560]from this, think about that situation.
[00:28:20.230]Think about what your life would be like if every time
[00:28:25.390]you had your natural response to some kind of stress
[00:28:30.620]or trigger or event in your life, your emotional response,
[00:28:36.170]your energy response, your need maybe to relay
[00:28:42.430]that information and talk about it with someone else,
[00:28:45.120]every time that happened, someone is there to say,
[00:28:48.630]that's not what that should look like,
[00:28:50.430]that's not how you do that and I know you can do this.
[00:28:54.700]And, even though, for your neurology,
[00:28:57.270]that flapping, that rocking may have no influence
[00:29:01.690]on your needs and your regulation and making that stressful,
[00:29:06.550]awful thing any better, you learn just to do it
[00:29:10.920]because otherwise there will be consequences.
[00:29:14.620]And so, the message you receive
[00:29:16.450]for your entire educational career
[00:29:19.090]is that you are broken and this is the amount of energy
[00:29:23.410]and time and cognitive resources
[00:29:25.200]that you need to put in just to exist among the humans,
[00:29:29.330]just to make the environment okay for them.
[00:29:33.160]Think about that message, and if you can
[00:29:35.240]take that to heart, you can go far
[00:29:38.920]in helping not to contribute to people's masks.
[00:29:43.060]And, on that line of thinking, (phone beeping)
[00:29:47.080]let's talk about some support.
[00:29:48.640]Let's talk about, how can you help?
[00:29:51.060]What can you do?
[00:29:53.460]I have five things listed out here and I will also send you,
[00:29:59.830]or send someone who can get all of you, this information.
[00:30:03.860]I'll send these slides as a PDF.
[00:30:06.410]I will send a brief overview that I have written up,
[00:30:11.226]and that will cite all the research
[00:30:12.750]that I have included in here, and I will probably
[00:30:15.980]also send a short PowerPoint presentation
[00:30:18.480]I have that's called Five Takeaways.
[00:30:21.850]And, those are kind of similar to these,
[00:30:24.780]but they very specifically lay out
[00:30:30.140]some of these ideas that we'll talk about here.
[00:30:32.380]So, just so you know, you will get all of this.
[00:30:35.735](clears throat) Here we go.
[00:30:37.870]Number one, how can we help?
[00:30:39.600]Validate.
[00:30:41.410]You know, many of you will know, and this will resonate
[00:30:44.430]with you, that all behavior serves a function.
[00:30:47.400]And, the behavior you see, it may be the way
[00:30:50.340]that an autistic person communicates
[00:30:52.320]their energy or emotional state.
[00:30:54.010]That might be their natural response
[00:30:56.290]to those stressful events and triggers.
[00:30:59.940]So, what we wanna do is strive to understand it,
[00:31:03.540]not to change it.
[00:31:04.990]And, before I go any further, (clears throat)
[00:31:09.081]what I focus on is that difference is not a deficit.
[00:31:13.500]There are behaviors that are dangerous, that are damaging,
[00:31:16.830]that are distracting to others, harmful, things like that.
[00:31:20.220]Take it from me.
[00:31:22.450]My brother's breathing was so ampy and so dis-regulating
[00:31:27.700]to me and I had no concept of what was going on.
[00:31:30.750]I exploded on him in some way so many times
[00:31:35.490]throughout our childhood, I took a metal baseball bat
[00:31:37.810]to his head, I threw a boulder at him,
[00:31:40.690]managed to hit his head.
[00:31:42.330]He bled so much, they had to put him
[00:31:44.130]in the bathtub and wait it out.
[00:31:47.520]Very explosive.
[00:31:49.310]And, these are not things that I want to be doing
[00:31:51.880]or that any autistic person wants to be doing.
[00:31:54.160]So, I'm not saying when, you know, little Susie, (laughs)
[00:31:59.930]you know, her way of dealing with stress
[00:32:02.130]is punching her one-to-one aid in the face,
[00:32:04.630]I'm not saying that we want to just let that happen,
[00:32:08.790]because otherwise we're making a mask.
[00:32:11.290]What I'm saying is we need to look at little Susie's day
[00:32:14.960]leading up to that point and figure out,
[00:32:18.790]where are places where we might be
[00:32:21.570]suppressing all of her natural responses?
[00:32:25.090]And, I'll talk about more of this later,
[00:32:26.500]but holding hostage things that are
[00:32:28.380]real needs for her regulation.
[00:32:31.440]If she is putting so much energy,
[00:32:34.230]just to being able to exist in the environment,
[00:32:37.490]based on all these rules that she knows to exist,
[00:32:41.200]but she doesn't know the whys or anything behind them,
[00:32:44.130]essentially wearing the mask, at that point
[00:32:46.880]that she explodes towards that one-to-one aid,
[00:32:49.950]there's nothing that can be done.
[00:32:52.580]It's a volcano.
[00:32:53.413]It's an eruption of raw physical energy.
[00:32:55.840]There's no thought processes, there's no intention.
[00:33:00.040]It is an explosion.
[00:33:01.410]It is the soda bottle, like, cap going flying off
[00:33:05.530]after it's been shaked up for so long.
[00:33:08.160]Shaked, shooken, shaken?
[00:33:10.220]Anyway, you get the point.
[00:33:11.500]I still kick through cabinets, punch through walls,
[00:33:16.110]explode in my condo.
[00:33:17.890]I have a punching bag downstairs,
[00:33:19.610]but there's no way in a moment of that explosion
[00:33:23.410]to actually think through that and get there.
[00:33:26.200]So, I wanna say upfront that my goal
[00:33:30.140]is not for a free-for-all, my goal is that
[00:33:34.470]throughout the day, if we tend to these things
[00:33:37.360]and we let difference just be difference
[00:33:40.050]and we don't focus on fixing what isn't broken,
[00:33:44.360]we'll get to those points of explosion far less frequently.
[00:33:47.650]So, just so you know.
[00:33:50.250]So, strive to understand what's going on,
[00:33:52.160]not to necessarily change it.
[00:33:53.870]Difference is not inherently deficit.
[00:33:56.570]We wanna learn from the experience of autistic people,
[00:34:00.400]rather than comparing it to our own experience
[00:34:03.400]as neuro-typicals, or your own experience as neuro-typicals,
[00:34:07.770]and norms, because that will be truly helpful.
[00:34:12.850]So, if you can make your first step,
[00:34:15.820]I don't understand why so-and-so runs off
[00:34:20.390]to one specific corner of the classroom
[00:34:24.720]and faces the corner and shoves their head
[00:34:27.480]in that corner and will not look at anyone,
[00:34:30.500]talk to anyone, every time this is happening,
[00:34:34.180]whatever, there could be a million different scenarios,
[00:34:38.150]make your first thought be, I wanna understand
[00:34:41.640]why this is happening, I wanna understand
[00:34:43.470]what this person is trying to communicate.
[00:34:46.128]And, one of the best ways you can do that,
[00:34:47.380]there is a hashtag, if you are on social media,
[00:34:50.150]Twitter, Facebook, I don't do Facebook
[00:34:52.800]because it kinda freaks me out,
[00:34:55.000]but I know on Twitter it exists.
[00:34:57.320]It's called #askingautistics
[00:35:00.140]and it is specifically created for educators, parents,
[00:35:03.990]anyone who's curious about autistic people, researchers,
[00:35:07.910]works with autistic people, community members, whoever,
[00:35:10.980]to use this hashtag #askingautistic
[00:35:13.400]and ask about situations like that.
[00:35:16.170]And, the autistic community, we will be direct,
[00:35:18.400]we will be straightforward, we will be blunt,
[00:35:22.040]but I can also guarantee you that you will get
[00:35:24.070]an outpouring of very valuable responses
[00:35:28.600]and also immense amounts of thanks and praise
[00:35:33.410]for asking them, rather than relying
[00:35:36.870]on your own biases as to what is going on.
[00:35:40.450]So, great resource.
[00:35:43.410]Educators should use it more.
[00:35:46.190]Okay, so learn from autistic people,
[00:35:48.100]not from your own experience.
[00:35:50.660]If someone is working to take off that mask,
[00:35:54.350]like, we've identified that they just
[00:35:55.900]have this built-up mask and we're trying to work
[00:36:00.390]with them to get back to the core of who they are,
[00:36:04.610]know that what you thought you knew about them,
[00:36:07.300]how you thought you knew that person,
[00:36:08.830]it may no longer be valid.
[00:36:10.770]And so, it's really validating
[00:36:13.150]who they are at their true core.
[00:36:17.010]That's it.
[00:36:17.940]Number two, question.
[00:36:19.310]Be critical of any programs, therapies,
[00:36:22.040]interventions, supports, strategies, plans that attempt
[00:36:27.500]to get rid of or reduce different behaviors.
[00:36:30.950]Hold on, I have to make an emergency switch because (laughs)
[00:36:34.670]apparently doing this really drained
[00:36:36.930]my computer battery and I'm not plugged in.
[00:36:40.230]So, we're just gonna take a little trip.
[00:36:42.370]I can give you the tour, the grand tour of my casa.
[00:36:50.086]It would be a real shame if I lost this now, right? (laughs)
[00:36:53.880]This is Zoom life though, you're all familiar with it.
[00:36:56.610]All right, all right, I'm in the power source.
[00:36:57.810]Sorry about that.
[00:36:59.660]Close call.
[00:37:00.493]Okay, so be critical of any programs,
[00:37:03.320]therapies, interventions, strategies,
[00:37:05.570]plans that attempt to automatically just get rid of
[00:37:08.650]or reduce different behaviors.
[00:37:10.950]Again, especially without questioning the function
[00:37:14.100]of those behaviors and if those behaviors
[00:37:16.730]aren't things that are damaging, harmful, destructive
[00:37:22.270]and distracting to others in the learning environment.
[00:37:26.140]I think, you know, this is one
[00:37:27.490]of my biggest sticking points here,
[00:37:30.350]there's a lot of emphasis on normal, this idea of normal.
[00:37:33.880]And, to me, this is the root of both of the problem for,
[00:37:38.840]you know, autistic people who do and do not mask.
[00:37:42.470]This is why we have those outcomes, those poor outcomes
[00:37:46.660]for both sets of individuals, of autistic individuals,
[00:37:50.080]because either you're explicitly showing
[00:37:54.140]that you're not normal and that you're different
[00:37:57.530]and weird and bizarre and odd and special
[00:38:01.190]and all these things, or you're not,
[00:38:04.550]and so you have access to more things and
[00:38:11.110]you can pass in society, but you know the inner toll,
[00:38:15.220]the amount of energy needed for you
[00:38:19.590]to be considered okay in society.
[00:38:22.610]And, the message from all of that is that someone is broken.
[00:38:26.530]Again, it's that damned if we do, damned if we don't, thing.
[00:38:29.810]So, let go of that normal.
[00:38:33.500]Difference is not deficit.
[00:38:35.520]And so, that's another really key point
[00:38:38.550]that you could take away from this presentation
[00:38:41.110]and automatically help not to contribute to a mask.
[00:38:46.570]Feed the need, don't hold hostage the very things
[00:38:50.120]that serve to regulate an autistic person.
[00:38:53.370]Those coping mechanisms and those activities
[00:38:55.760]that someone needs to actively engage
[00:38:57.560]in the classroom or in their job.
[00:39:01.310]Things like token economies
[00:39:02.640]and reward systems are very common.
[00:39:05.570]When I travel, when I was traveling
[00:39:08.040]and going into classrooms in the United States
[00:39:10.920]and around the world, they are there, always.
[00:39:14.740]They're, like, ubiquitous around the world.
[00:39:17.133]But, they often use key needs as rewards.
[00:39:21.820]And, things like food, physical activity,
[00:39:24.580]rest, solitude and time away from others,
[00:39:27.410]those stimming things that, again,
[00:39:29.270]are just different and not deficits.
[00:39:32.470]Breaks and people's interests.
[00:39:35.900]Holding those things hostage is part of building a mask.
[00:39:40.940]It is teaching someone to repress, again, what is so natural
[00:39:46.010]and needed for them in order to endure something.
[00:39:51.070]And, I can tell you, I did my bike sprints before this,
[00:39:54.830]there is no way that I could say, okay, Jacquelyn,
[00:39:58.810]if you get through this presentation,
[00:40:00.740]then you can do those bike sprints.
[00:40:02.770]You need to feed the need first,
[00:40:06.640]and then the participation and active engagement can occur.
[00:40:11.530]So, it's not about getting out of tasks
[00:40:14.840]that are not preferred, not that you guys
[00:40:16.730]are not preferred to me, (laughs)
[00:40:19.530]but it's about doing the things beforehand that will
[00:40:23.410]enable someone to participate to the best of their ability.
[00:40:27.970]Advocate and educate, fight to ensure autistic people
[00:40:30.563]have the supports they need, that their way
[00:40:32.800]of being is understood by those around them.
[00:40:35.810]Take the time to understand the person,
[00:40:37.410]know their needs and profile, know their environments,
[00:40:40.040]their activities and where modifications can occur.
[00:40:43.010]This is huge, it's a two-way street.
[00:40:45.550]Yes, we wanna teach autistic people to have tools
[00:40:48.650]and strategies and ways of coping with things, certainly.
[00:40:52.870]And, we want those things, we want to have independence
[00:40:55.850]and be able to do those things, but there are times
[00:40:58.820]where simple environmental modifications can easily be made.
[00:41:04.460]And, too often, I feel that the full burden for all of this
[00:41:08.600]falls on the shoulders of the autistic person,
[00:41:12.750]and that's not okay.
[00:41:14.943]And, we have a great resource on Autism Level UP!,
[00:41:17.950]it's called the PIC, the person in context,
[00:41:20.370]and it will allow you to fill out the person's profile,
[00:41:22.860]the profile of the environments that they're in
[00:41:25.007]and the profile of the activities that they do,
[00:41:27.390]and you can see where these matches and mismatches
[00:41:30.370]between their profile and the environment
[00:41:33.590]and the activities are occurring and it gives you places
[00:41:38.740]to write out both what we can change
[00:41:40.390]about the activities and the environments,
[00:41:42.840]and then the things we can do to prepare an autistic person
[00:41:46.090]to be in those environments 'cause there are also things
[00:41:48.310]that can't be changed in an environment.
[00:41:51.090]I will say too that the more an autistic person
[00:41:54.390]explicitly understands their own profile
[00:41:57.010]and their own needs, the better off they will be.
[00:42:00.830]If you can teach someone the things they need
[00:42:03.720]to be able to actively engage and learn,
[00:42:06.260]all the content in the world can be theirs later.
[00:42:10.460]You know, we get caught up and I know this is, like,
[00:42:12.740]an educational system thing, teachers
[00:42:15.950]and staff don't always have control of this,
[00:42:18.170]get caught up in needing to ensure
[00:42:20.700]that certain things in the curriculum
[00:42:23.210]are taught by certain times and people pass
[00:42:25.240]at certain points, but if we focus more
[00:42:28.310]on making sure people understand how they learn
[00:42:32.870]and what they need to learn, the content will come.
[00:42:36.070]Take it from someone who failed math, (laughs)
[00:42:39.380]algebra, all of it, hated it, thought it was useless
[00:42:42.000]and pointless, could not make any explicit connections
[00:42:45.720]to the meaning of it in the world,
[00:42:47.160]and is now a researcher and statistician.
[00:42:50.080]So, learning how to learn, it's powerful.
[00:42:56.130]Use caution, taking off the mask is a privilege.
[00:42:58.330]Some are not in a position to do so.
[00:43:01.600]That's key.
[00:43:02.690]Some have masked so long, they don't even know
[00:43:04.610]what is the mask and what is their true self.
[00:43:07.030]It's a really tough process.
[00:43:08.790]It can take years to craft and assemble that mask
[00:43:12.437]and it can take just as long to deconstruct it.
[00:43:16.530]It can be really difficult to take off,
[00:43:18.850]even when it's desired by the individual,
[00:43:20.620]because remember the context of our society,
[00:43:23.750]damned if you do, damned if you don't.
[00:43:25.680]But, for your health, for your mental health,
[00:43:28.070]it is an ideal in the end.
[00:43:30.144](phone beeping)
[00:43:31.870]So, hopefully I didn't go too long here.
[00:43:34.520]I will stop here and thank you for your time and listening,
[00:43:37.810]and be available for some questions.
[00:43:40.910]Thank you.
[00:43:44.040]Okay, thank you so much, Jacquelyn,
[00:43:45.930]for talking with us about masking and autism.
[00:43:52.730]We're gonna open it up for a Q&A session now.
[00:43:57.280]Okay.
[00:43:58.200]Well, I'll say, while we're waiting for some questions
[00:44:00.010]to come, for individuals who are masking
[00:44:06.170]that maybe they're engaging in, let's say,
[00:44:09.500]behavior that might be considered risky or dangerous,
[00:44:16.640]for example, let's say a person who maybe
[00:44:20.570]they don't understand relationships,
[00:44:24.000]so dating and things like that, and are,
[00:44:33.810]I'll say, looking for love, what they think is love,
[00:44:37.200]and maybe they're getting, you know,
[00:44:38.870]getting attention that doesn't necessarily lead
[00:44:42.060]to the meaningful relationship that they're wanting.
[00:44:46.610]Hmm.
[00:44:47.443]So, that's a really tough one.
[00:44:49.110]I think anything in that domain is really difficult.
[00:44:54.120]One of the things that is so important
[00:44:56.810]is really how explicit you have to be about all of it.
[00:45:04.120]I mean, even me, I'm 32 years old,
[00:45:08.090]I need people to explain to me
[00:45:11.940]even the fact that people can have intentions
[00:45:15.380]in their head that they don't say out loud,
[00:45:17.490]or the things that they say out loud,
[00:45:21.970]I can't take them at face value, necessarily, those words.
[00:45:26.890]That is, like, a lifelong learning process
[00:45:30.180]for me and for many autistic people.
[00:45:32.830]So, the more explicit you can be and getting
[00:45:35.960]that information to them in ways that is accessible to them,
[00:45:41.010]visually, well-written social stories,
[00:45:45.030]things like that, the better off they will be.
[00:45:49.570]I know I worked at a camp, well,
[00:45:52.430]like, two summers ago, pre-COVID,
[00:45:55.010]where we had a guy who just loves the feel of skin,
[00:46:01.780]like, just loves the feel of skin
[00:46:05.100]and getting that information to him that, yes,
[00:46:10.310]there are people in your life where you can,
[00:46:12.750]like, rub their arms and you can put your hands on them
[00:46:15.920]and they are your family and it's all good,
[00:46:19.870]but there are also people who will take
[00:46:22.100]that a very different way and it can get you in trouble,
[00:46:26.890]even though you have no ill will
[00:46:29.610]or, like, negative thoughts towards them,
[00:46:32.170]you don't want to harm them in any way.
[00:46:35.530]We had to be very explicit, but it's also always a balance
[00:46:40.860]of making sure that they know that just because
[00:46:45.410]we're being this explicit with them,
[00:46:46.870]just because we're putting these guidelines
[00:46:48.960]in place doesn't mean that we don't understand
[00:46:53.470]that this is a real challenge for them and that,
[00:46:57.850]you know, they're not trying really hard
[00:47:00.900]and that that need isn't real for them.
[00:47:02.760]So, there's a lot of dimensions there.
[00:47:04.770]It's a really great question.
[00:47:06.326]Sorry, (laughs) that was a complicated question
[00:47:07.860]to start things off, but I work with, let's say,
[00:47:11.320]usually younger adults and that comes up frequently.
[00:47:17.420]Yes. So,
[00:47:18.253]I appreciate you talking about being explicit, so.
[00:47:23.270]Okay, we do have some questions that have come in.
[00:47:27.200]We have one from Carlos.
[00:47:29.490]Ah, yes.
[00:47:32.070]He says, excuse my ignorance, but I always thought
[00:47:34.610]that autism was diagnosed in childhood.
[00:47:37.410]How was your journey in figuring out
[00:47:40.490]and getting the diagnosis of autism?
[00:47:42.870]Yes, that is a great question.
[00:47:45.150]And, most times, it is in childhood and we want it
[00:47:48.260]to be in childhood because the earlier we know,
[00:47:51.880]the better supports we can put in place
[00:47:54.710]and the better the outcomes can be, especially now.
[00:47:57.760]Earlier on, that might've not been the case,
[00:47:59.840]but now, for sure.
[00:48:01.520]I did not come to my autism diagnosis
[00:48:05.510]until I was in this all-out burnout,
[00:48:11.770]depression, anxiety, like I said,
[00:48:14.000]I questioned whether I was suicidal everyday.
[00:48:19.520]And, it was finally, after months and months
[00:48:23.510]and months, I told or showed someone,
[00:48:27.930]my, like, one trusted social contact, all of the damage
[00:48:32.090]that I had done to my condominium,
[00:48:34.050]the holes in my doors, the broken-in cabinets.
[00:48:39.417]And, it was that point where
[00:48:41.480]we started working through this.
[00:48:44.210]And, at first, we were just going down the sensory route,
[00:48:48.290]just, like, me as a sensory mess,
[00:48:52.600]but my (laughs) social aspects,
[00:48:55.970]where I have no social understanding,
[00:48:59.120]or very low social understanding,
[00:49:02.120]and we did use information from my childhood
[00:49:07.700]to inform that diagnosis when I went to a clinician.
[00:49:12.150]They do ask about the history.
[00:49:13.750]They do ask what you were like as a child.
[00:49:16.120]I did have to ask my mom for information
[00:49:19.880]and, you know, she provided great information,
[00:49:23.650]like the fact that she could leave me alone
[00:49:27.610]for hours and hours and hours and, you know,
[00:49:31.020]my brother, he could play alone,
[00:49:33.010]but it wouldn't be more than 20 minutes
[00:49:35.220]before he was like, hey, Mom, Mom, Mom,
[00:49:37.660]come help me, Mom, come see what I did, Mom.
[00:49:40.190]And, she cannot remember a single time
[00:49:42.970]in my childhood where I ever went to get her,
[00:49:46.410]where I ever asked her for help, anything like that.
[00:49:49.840]And, there were also times in my childhood
[00:49:52.770]where I could not access language.
[00:49:57.990]My vocabulary was typically developing,
[00:50:00.800]but when something felt weird or different in bed
[00:50:05.810]and I wanted my mother, I would, like,
[00:50:07.580]creep to the top of the stairs and I would just try for,
[00:50:11.540]I don't even know how long, to just get myself
[00:50:14.210]to say the word Mom and all I could do was go, mm, mm, mm.
[00:50:22.140]So, in really amped up, high-energy situations
[00:50:26.450]in my childhood, I didn't have access to that language.
[00:50:29.500]I could go non-verbal.
[00:50:30.630]And, there were all these things that came out
[00:50:32.940]that I had never even thought about and it's really,
[00:50:37.010]it's part of the time of when I grew up, autism, females,
[00:50:41.900]it wasn't a big, it wasn't a thought-about thing.
[00:50:46.460]And, there's a whole kind of generation,
[00:50:48.530]that they call the Lost Girls, of these women
[00:50:52.290]who have gone through these kinds of burnouts
[00:50:54.170]and that's how they discover it late in life.
[00:50:56.770]So, it's a great question and you can read
[00:50:59.970]a lot of wonderful blogs and written pieces
[00:51:03.750]from autistic adults about similar paths and journeys.
[00:51:11.055]Okay, let's see.
[00:51:15.180]Oh, this question's from Debra,
[00:51:18.630]where she says, advice for teachers
[00:51:21.320]of elementary age students in determining
[00:51:25.320]if a child is masking or not?
[00:51:28.650]I think it's a really tough question
[00:51:30.770]and I started to get at it earlier,
[00:51:33.040]about involving as many well-informed people
[00:51:36.380]as you can, including the parents,
[00:51:38.720]because in school, my teachers would tell me
[00:51:42.230]that they wished that they had
[00:51:43.910]an entire classroom of mes, (laughs)
[00:51:47.170]because I was that, you know, by the book, by the rule.
[00:51:52.640]So, asking the parents what happens
[00:51:54.640]at home is also really important,
[00:51:57.900]a really important piece of the equation.
[00:52:00.830]And, just starting now, with this new knowledge
[00:52:04.330]that you have, you might look at things differently.
[00:52:06.910]You might be more critical of things that are going on.
[00:52:10.340]And, if you come with that lens of,
[00:52:13.690]I just wanna understand you, rather than,
[00:52:15.830]I'm trying to make you look a certain way,
[00:52:19.350]it will help to ensure that anything that has been built up
[00:52:24.140]isn't accumulating over a lifetime.
[00:52:26.670]So, another difficult one, but I think
[00:52:30.380]you're more armed with knowledge now
[00:52:32.530]to be able to make some of those determinations.
[00:52:36.770]Okay, great.
[00:52:37.980]Okay, let's see, there's a question from Marvin.
[00:52:40.560]And, actually, this kinda goes along
[00:52:41.820]with that last question, so he works
[00:52:44.230]in a high school structured classroom.
[00:52:47.000]Okay. And, he's fine with his,
[00:52:48.810]you know, the students stimming, resting,
[00:52:51.330]expending energy, taking breaks, whatever they need to do.
[00:52:55.240]Yet, most work environments aren't ready for this.
[00:53:00.250]And so, do you have any tips on talking
[00:53:02.600]to work sites and potential employers
[00:53:05.030]about the mental health harms of masking?
[00:53:09.440]Yes, well, you're free to share
[00:53:11.010]this information with anyone that you want.
[00:53:13.780]I've actually had a few parents share this with teachers
[00:53:18.110]and community sites that their teen
[00:53:23.410]or young adult attends, to inform them about it.
[00:53:27.620]So, information is always good.
[00:53:29.600]I will also say that I am fully out
[00:53:34.290]with my autistic self to my work and you know what?
[00:53:40.260]They're great about it, but it also gives them more freedom
[00:53:43.970]to do things that they need for themselves.
[00:53:46.350]It's a really positive thing for a workplace
[00:53:49.530]when people can just meet the needs they have
[00:53:52.030]and understand it that way.
[00:53:54.700]So,
[00:53:58.630]sometimes I think, one thing you wanna prepare
[00:54:01.680]in autistic young adults or someone who's going
[00:54:05.160]into the workplace for, is that a lot of the times,
[00:54:08.480]the burden will fall on them to educate their coworkers
[00:54:12.680]and the people around them, but it can be
[00:54:16.560]a really positive thing for the workplace overall.
[00:54:20.430]And, I also have a little video.
[00:54:23.410]I can send this, it's a little video clip, if it's helpful,
[00:54:26.340]of, I took a time-lapse video of myself
[00:54:29.550]taking a work call (laughs) and what I do
[00:54:33.180]to be engaged in that call, I am upside down,
[00:54:36.060]I am all over the place and it's just, you know,
[00:54:40.620]people will say that meeting all these needs,
[00:54:43.990]having all these accommodations,
[00:54:45.610]all these supports is not the real world, but it is.
[00:54:49.310]The real world is knowing what your needs are
[00:54:51.520]and knowing how to meet them and taking care
[00:54:54.430]of those things so that you can engage in the work.
[00:54:56.500]The real world is not having a coworker
[00:54:58.670]that follows you around and reminds you
[00:55:02.400]to sit down constantly or puts, you know,
[00:55:05.130]little stars on a chart for you to earn your work break.
[00:55:08.686]So, the more we can inform someone
[00:55:10.470]about their true needs and present it
[00:55:12.840]in that advocacy kind of a format,
[00:55:15.160]the better off they will be and the better off
[00:55:17.540]their workplace will be for having that awesome employee.
[00:55:20.510]Yeah, they want them to be able to function, right?
[00:55:23.175]Yep.
[00:55:24.008]Yeah, absolutely.
[00:55:25.510]Okay, let's see.
[00:55:26.630]This is from Mindy.
[00:55:29.400]When we are evaluating a student
[00:55:31.710]for special education eligibility in schools,
[00:55:35.950]what are ways to assess if the student is masking,
[00:55:40.130]to ensure that we're not misdiagnosing?
[00:55:42.910]Hmm, that's a great question and that's a really tough one
[00:55:47.020]because a very common path for people who find out
[00:55:53.010]they are autistic late in life is that they have
[00:55:55.340]been misdiagnosed with so many different things
[00:55:58.940]along the course of their career or their life
[00:56:01.340]and it, like, it might cover one little domain,
[00:56:03.960]but it doesn't quite fit for their full presentation
[00:56:07.350]and what they truly experience.
[00:56:10.090]So, it's, again, I'm gonna resort back to it,
[00:56:13.990]including as many informed people in the conversation
[00:56:17.770]as you possibly can, and I know, in any kind of diagnosis
[00:56:23.030]or making determinations about these kinds of things,
[00:56:27.380]we try to do that anyway, but again, I think,
[00:56:31.620]with your new knowledge and with some of this information,
[00:56:36.710]you might be able to look at things differently.
[00:56:39.580]I know so many autistic women
[00:56:41.810]who were diagnosed with OCD first
[00:56:45.660]or with generalized anxiety disorder, and another big one
[00:56:50.310]to look out for is also eating disorders.
[00:56:53.550]That one is really common and it may not be (laughs)
[00:56:59.670]because they want to look a certain way.
[00:57:03.680]It is, again, that rule of, this is all I see
[00:57:07.240]as that expression of what someone
[00:57:09.300]is supposed to be like in society,
[00:57:10.920]and so this is what I need to be,
[00:57:14.562]which is a little bit different
[00:57:15.530]from a traditional eating disorder, but yeah,
[00:57:21.060]another great sign is if they've had that series of just,
[00:57:24.870]first, it was bipolar, and then it was
[00:57:26.770]borderline personality disorder, and then it was OCD,
[00:57:29.340]and now maybe there's an eating disorder,
[00:57:31.920]you might wanna take a broader look and consider autism.
[00:57:34.730]And, that really may require helping
[00:57:37.980]to educate a clinician, and finding people
[00:57:41.980]who really understand these nuances is tough.
[00:57:46.300]Definitely.
[00:57:49.470]Let's see, from Margie, she's asking,
[00:57:52.390]well, first she says, super interesting presentation,
[00:57:55.890]and then she says, can you elaborate
[00:57:58.000]about masking traits that are specific to males with autism?
[00:58:02.800]Yes, actually, many of the traits for masking in males
[00:58:07.370]are very similar to the ones that we listed.
[00:58:11.540]And, I will find another good study that includes males,
[00:58:17.900]but it's a lot of the same things, it just tends to be
[00:58:21.610]less of the time and less common within the population.
[00:58:26.610]So, you will still see a lot of the strict adherence
[00:58:31.580]to anything that they can determine as a social norm.
[00:58:36.620]There might be, like, a hyper-masculinity or kind of
[00:58:41.750]a fear of anything that doesn't line up with that.
[00:58:46.310]Things like that, but nothing significantly different,
[00:58:49.950]just tends to be a little less and a little less frequent.
[00:58:58.710]All right, one last question.
[00:59:00.840]This is from Melinda and she says
[00:59:03.890]she has a hard time finding resources that are in Spanish.
[00:59:07.550]Do you have any recommendations?
[00:59:10.320]Yes, actually, we have a few of our tools
[00:59:13.930]on Autism Level UP! in Spanish and in multiple languages.
[00:59:18.760]We are lucky and fortunate enough to work
[00:59:21.220]with someone who does some of that translating for us.
[00:59:27.460]And, we have used them in many different schools.
[00:59:31.700]And, we always, always say, when you're using
[00:59:34.340]our Spanish translations, please give us feedback.
[00:59:38.480]We know Spanish is not one, (laughs)
[00:59:40.820]you know, homogenous language for everyone,
[00:59:45.040]so if, for your population, for the community you serve,
[00:59:49.390]this is not the type of Spanish that resonates,
[00:59:52.470]please give us feedback and we will work
[00:59:54.560]to get that fixed for you.
[00:59:57.900]So, check it out.
[01:00:00.638]All right, well, Jacquelyn,
[01:00:02.240]thank you so much for talking with us this afternoon,
[01:00:05.950]answering all of our questions and sharing your resources.
[01:00:08.850]I really appreciate it.
[01:00:10.390]Well, thank you all for being here
[01:00:11.287]and your great questions.
[01:00:14.170]Really complex questions, but great questions.

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Masking and Mental Health

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