Improving Outcomes With the Ziggurat Model - Part 1

Kim Clairy, Ruth Aspy and Barry Grossman Author

04/14/2022 Added

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Conference 2022

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[00:00:02.870]We are glad to be here.
[00:00:06.122](clears throat)
[00:00:06.955]We feel a special affinity for our friends in Nebraska.
[00:00:11.220]I don't know if you know how fortunate you
[00:00:13.330]are to be in a state
[00:00:14.980]that does such good work focused on autism,
[00:00:18.930]but we've always been impressed by the people there.
[00:00:21.650]So we're just glad to be able
[00:00:22.750]to be a part of this conference.
[00:00:25.420]I'm Ruth Aspy.
[00:00:32.300]All right.
[00:00:37.700]We're going to be talking
[00:00:39.040]about improving outcomes using the Ziggurat model.
[00:00:43.280]And we want to begin with Kim talking to you
[00:00:49.310]about some of her experiences and challenges along the way.
[00:00:55.028]So during my very first talk,
[00:00:57.550]I was asked by a parent,
[00:00:59.687]"what was the hardest thing for me?"
[00:01:01.810]And this was my reply.
[00:01:04.060]Societal and self expectations, fear of judgment,
[00:01:08.020]lack of understanding from healthcare professionals,
[00:01:11.210]miscommunications, that I'm very gifted in some areas,
[00:01:15.280]but cannot pursue it fully because of my limitations mixing
[00:01:18.860]with our present society.
[00:01:22.520]Being a spectator.
[00:01:23.750]Being fully present inside but not to be outside.
[00:01:28.010]Watching and not being able to partake
[00:01:30.300]in social activities or conversations.
[00:01:33.490]I may look like I am, but it's not me, it's an act.
[00:01:37.950]Being told I am doing, feeling
[00:01:39.570]or thinking something I am not, and remaining steadfast.
[00:01:43.297]And what I know is my authentic self.
[00:01:46.400]Persevering, to get through the judgment and accusations,
[00:01:50.490]not giving up with trying to help others understand.
[00:01:54.300]Swimming through the pain of harsh labels
[00:01:56.840]and being told I am someone I am not.
[00:01:59.290]Fighting the notions, I'm a failure and defective and wrong.
[00:02:04.150]Defiant, oppositional, selfish or manipulative.
[00:02:07.380]Falling down, but getting back up,
[00:02:09.670]screaming out loudly,
[00:02:11.790]and then eventually screaming in loudly.
[00:02:14.800]Trying and trying differently over and over and over,
[00:02:18.590]to help others understand my world,
[00:02:21.210]so I can relearn how to be myself,
[00:02:23.520]after years of trying to be someone I'm not.
[00:02:26.970]Trying to fit in, but failing,
[00:02:29.780]learning that in order for me to be happy and successful.
[00:02:33.380]I had to break away
[00:02:34.370]from these ingrained impossible expectations.
[00:02:37.883]I had come to place on myself and instead embrace
[00:02:41.400]the true me and learn to work with my differences
[00:02:45.370]in order to thrive.
[00:02:49.010]And we're (clears throat)
[00:02:50.110]so glad I'm speaking for Barry and myself.
[00:02:52.440]We're so glad that we have had the opportunity
[00:02:55.850]to get to know Kim and, imagining
[00:03:04.430]people negatively judging her is almost impossible to me
[00:03:08.333]because of how highly we think of Kim.
[00:03:12.330]But we're going to share together
[00:03:14.670]kind of the blend of her work.
[00:03:17.870]You, Barry and I are psychologist,
[00:03:19.710]and so there's a real mental health element
[00:03:22.620]of course to our focus.
[00:03:25.360]And Kim is an occupational therapist.
[00:03:28.070]So there's a mental health focus in her work as well.
[00:03:31.747]And so we're going to talk about some of the challenges.
[00:03:37.080]If you go to the next slide, Barry,
[00:03:38.820]with mental health outcomes for autistic people.
[00:03:43.910]And Kim has already hint at masking,
[00:03:47.540]being one of those challenges,
[00:03:48.820]we're going to talk about more about that.
[00:03:51.670]And then we're going to talk
[00:03:52.760]about how finding appropriate treatment,
[00:03:57.020]finding appropriate supports is very challenging often
[00:04:00.670]for people on the spectrum.
[00:04:03.230]So let's just look on the next slide at mental health
[00:04:08.132]and autism in general.
[00:04:09.840](clears throat)
[00:04:10.673]There are co-occurring mental health conditions
[00:04:13.990]are more prevalent in those with autism compared
[00:04:17.460]to neurotypical peers.
[00:04:22.140]These are statistics from the UK
[00:04:25.480]that at almost eight and 10 autistic adults
[00:04:30.001]have an additional mental health condition.
[00:04:34.880]And you probably, if you've looked at any of the statistics
[00:04:40.420]around autism and mental health that really,
[00:04:46.280]if you meet someone who's been identified with autism,
[00:04:49.810]it is most likely that they have also been identified
[00:04:54.130]with other conditions as well.
[00:04:56.780]Very often, something was identified before the autism was,
[00:05:03.670]often it's ADHD,
[00:05:05.920]sometimes it's a child is caught oppositional defiant,
[00:05:10.960]sometimes anxiety or mood disorders are identified,
[00:05:15.260]before people are able to recognize
[00:05:18.700]that actually autism is probably underlying
[00:05:22.510]most of what they're seeing.
[00:05:25.760]So on the next slide you see other statistics,
[00:05:30.410]and this says that more than six in 10 autistic people
[00:05:35.690]have considered suicide,
[00:05:38.600]and more than three in 10 autistic adults
[00:05:42.060]have attempted suicide.
[00:05:44.240]Again, these are statistics that come from the UK,
[00:05:47.610]but it doesn't matter which researchers you follow.
[00:05:50.830]If you look at the research, what you're going to see
[00:05:54.170]is that the risk for suicide
[00:05:56.460]is much higher for autistic people.
[00:06:00.100]And it's a very significant mental health challenge
[00:06:04.330]for those of us who are working to support people
[00:06:07.748]on the spectrum.
[00:06:08.970]The next slide,
[00:06:12.680]talks about camouflaging and there are multiple of words
[00:06:16.550]that get used here.
[00:06:17.730]But the point here is that studies have found
[00:06:22.060]that camouflaging is associated
[00:06:25.310]with more significant mental health concerns.
[00:06:28.450]So what is camouflaging?
[00:06:30.360]Camouflaging is efforts to fit in,
[00:06:34.490]efforts to look neurotypical.
[00:06:38.140]And what we know is that men
[00:06:42.920]on the spectrum and women on the spectrum,
[00:06:45.810]equally will report that they use masking or camouflaging.
[00:06:50.580]That the same percent of men and the report
[00:06:53.870]that they camouflage sometimes as women on the spectrum.
[00:06:57.900]The difference is that women on the spectrum report
[00:07:01.280]that they camouflage more of the time.
[00:07:04.890]And what we know is that time spent masking,
[00:07:09.460]time spent camouflaging increases risk
[00:07:13.490]for other mental health concerns,
[00:07:16.590]in particular for depression.
[00:07:21.160]So next is talking more about masking.
[00:07:26.200]On the next slide we see other names for masking.
[00:07:29.860]That include, blending, acting, pretending,
[00:07:34.010]mimicking and camouflaging.
[00:07:37.170]And I've had various friends who are autistic,
[00:07:42.000]who use their own words for this process.
[00:07:47.240]And I've been with them when they've said I'm done,
[00:07:51.070]and they switch from camouflaging
[00:07:55.265]to being their real selves.
[00:07:59.383]And we need to be aware
[00:08:01.630]when we're working with people on the spectrum,
[00:08:05.540]that they may be putting effort into trying
[00:08:10.420]to fit in into trying to be someone they're not.
[00:08:14.180]So on the next slide,
[00:08:16.240]there's information from Kim's own life
[00:08:18.410]and Kim's own experience
[00:08:19.960]that we would like her to share with you.
[00:08:24.382]Not many people knew the amount of energy and work
[00:08:26.660]I expended in order to function and to look normal.
[00:08:30.730]And this masking started early on when I was a child.
[00:08:37.940]So Ruth or Barry, can you cue me?
[00:08:44.130]Yes, can you talk about some of the things
[00:08:48.320]that you did in order to mask,
[00:08:53.990]in order to cover up your autism?
[00:08:58.550]When I was little,
[00:09:05.030]I used to watch what other people did in social situations
[00:09:09.260]and environments and I would copy,
[00:09:12.020]what they did, if they were smiling, I'd smile,
[00:09:14.180]if they were laughing, I would laugh.
[00:09:15.637]And I didn't really know why they were laughing or smiling,
[00:09:19.310]but I just knew that they were,
[00:09:21.000]so I would copy what I saw.
[00:09:25.690]That got me through a lot of social situations.
[00:09:32.700]It got me through the social situations
[00:09:35.010]by inside I felt very alone and isolated.
[00:09:40.210]Kim, how did you know that you needed to mask?
[00:09:44.000]How did you know that you needed to hide who you were?
[00:09:49.750]I didn't know what to do.
[00:09:57.910]As far as social, I didn't know what to do.
[00:10:00.490]I noticed that my reactions were different
[00:10:03.890]than other people's and that I would say the wrong thing
[00:10:11.070]or do the wrong thing and get made fun of,
[00:10:13.610]or get in trouble.
[00:10:15.360]And that if I followed what everybody else's doing
[00:10:17.980]even if I didn't understand it,
[00:10:20.160]then I wouldn't get in trouble.
[00:10:24.040]Right, so you kept so kinda just copying
[00:10:27.990]the people around you, kept you outta trouble?
[00:10:32.060]Yes.
[00:10:32.893]Okay, so people were actually kind of reprimanding you
[00:10:37.190]for were acting the way you were acting?
[00:10:40.220]Yes.
[00:10:41.605]Okay, all right.
[00:10:43.040]Is there anything that you want to say
[00:10:44.670]about the sensory aspect of masking?
[00:10:49.260]Yeah, so the world was not making sense to me.
[00:10:53.170]The world, not making sense, social sensory,
[00:10:56.690]my own body and emotion wise,
[00:10:59.110]all of those led to masking.
[00:11:02.970]So with sensory, I have extreme sensory sensitivities
[00:11:05.620]in my hearing, taste and smell, et cetera.
[00:11:10.780]And I thought that everybody else experienced
[00:11:15.220]the world like me.
[00:11:16.190]And I didn't understand why I was the only one having
[00:11:20.400]these extreme reactions.
[00:11:23.250]I didn't understand
[00:11:24.290]why I had a high need for movement and pressure
[00:11:27.940]and why I couldn't just sit still
[00:11:29.550]and behave like everybody else.
[00:11:33.840]And that sense of seeing everybody else being able to manage
[00:11:40.250]these sensory components,
[00:11:51.400]seeing how they could handle it,
[00:11:56.560]and how I could not handle it,
[00:11:59.830]led me to do a lot of dissociating,
[00:12:04.490]a lot of negative self-talk,
[00:12:08.070]a lot of trying to hide what I really needed.
[00:12:11.200]I would dissociate so I could handle it,
[00:12:14.760]so then I wouldn't look different with my body.
[00:12:20.870]So my body was really unknown to me,
[00:12:23.280]still is unknown to me.
[00:12:24.940]I can't feel my boundaries.
[00:12:27.890]It feels like I'm floating in air.
[00:12:32.070]And it feels very alien.
[00:12:34.820]So again, just not being connected with myself.
[00:12:40.000]What ways did you (clears throat) disregard some
[00:12:43.500]of your body signals?
[00:12:50.660]So what do you mean?
[00:12:53.603]Were there times that your body was telling you,
[00:12:59.010]like it's too much, this is too loud for me,
[00:13:01.400]or I need movement to regulate?
[00:13:04.230]Were there times that your body gave you signals
[00:13:06.930]that maybe you didn't listen to them
[00:13:09.370]or maybe you wanted to climb or flap your arms,
[00:13:12.500]but you withheld that because you were masking?
[00:13:16.760]So originally,
[00:13:19.760]I did the things my body was telling me to do.
[00:13:21.800]I would flap, I would rhyme words,
[00:13:24.520]I would jump and spin, fidget.
[00:13:29.170]And those were natural,
[00:13:30.760]to me those were natural ways for me to cope with the world.
[00:13:36.460]It made the world make sense.
[00:13:38.980]But then I was told by so many people
[00:13:43.480]that those were babyish, or I looked retarded, so I stopped
[00:13:46.850]and instead I began doing things like pulling out my hair,
[00:13:49.820]pinching myself, biting myself, scratching.
[00:13:52.940]Eventually I would throw up and I learned to dissociate.
[00:13:57.900]And that's how I came to tolerate my surroundings,
[00:14:03.010]because it no longer made sense.
[00:14:06.570]I mean, it no longer mattered if my surroundings made sense,
[00:14:10.820]but what mattered was how others made sense of me,
[00:14:14.140]because I didn't want to disappoint or embarrassed,
[00:14:16.560]so instead I just disengaged.
[00:14:20.639]Mm-hmm!
[00:14:21.650]So you really prioritized what others might be thinking
[00:14:25.820]over your own needs as an effort in this case
[00:14:30.280]to camouflage or mask or fit in?
[00:14:33.700]Yes.
[00:14:34.790]And Kim, we have two photographs here on the screen.
[00:14:39.440]And can you tell us what,
[00:14:42.200]well, I guess who's in the first photograph
[00:14:44.390]there on the left and then what you see
[00:14:47.810]when you look at these photographs?
[00:14:54.320]Well, and on the left, that's my dad and my sister
[00:14:58.140]and me I'm in the back, flapping or clapping.
[00:15:02.890]I look very happy.
[00:15:06.630]The other picture is also me and I'm lining things up.
[00:15:09.220]I didn't play with my toys regularly,
[00:15:11.810]I usually just lined them up.
[00:15:15.100]And again, I look pretty happy there as well.
[00:15:18.750]And that was right before the age
[00:15:20.820]where I started really picking up that I was different.
[00:15:27.840]Okay.
[00:15:29.550]So when you moved past this age is a picture on the right,
[00:15:34.830]you became better and better at camouflaging
[00:15:37.970]and more and more miserable, is that accurate?
[00:15:40.960]Yes.
[00:15:42.339]All right.
[00:15:43.397]All right.
[00:15:44.690]So in the next slide.
[00:15:49.430]Yeah, so I started feeling alien at about age seven
[00:15:53.090]because I was noticing I was different.
[00:15:55.360]I thought I was stupid and a bad person,
[00:15:57.150]I didn't understand why I got in trouble.
[00:15:59.830]Why nobody wanted to be my friend, why I wasn't fitting in,
[00:16:04.180]and pictures taking it of me went from vibrant,
[00:16:08.670]carefree, bright and colorful
[00:16:10.780]to being very damp and stiff.
[00:16:14.370]And it's very evident, you can see that in the pictures.
[00:16:21.870]Yeah, a real shift.
[00:16:26.910]Can you tell us how you, I'm sorry.
[00:16:29.110]I'm on the wrong one here.
[00:16:30.237](Barry laughing)
[00:16:31.070]Okay.
[00:16:31.903]Tell us a little bit about, all right.
[00:16:36.750]About this one.
[00:16:39.490]So in my childhood,
[00:16:42.520]as you can see that's where the masking started
[00:16:46.700]and it continued through adulthood.
[00:16:50.720]I was diagnosed with autism, I think at age 25.
[00:16:57.960]And at that age, I remember,
[00:17:04.140]when I went into the evaluation, they were telling me
[00:17:10.649]the results, I don't know if that's the right word,
[00:17:12.090]but I felt like the way that they interacted with me
[00:17:16.610]was the first time that somebody was talking to me
[00:17:20.010]in a way that made sense.
[00:17:24.270]And I felt really relieved and validated and hopeful.
[00:17:31.480]But then I discovered that people don't know
[00:17:36.610]how to treat autism in adults.
[00:17:38.480]And I became very,
[00:17:44.040]at that point too, I was caught up in going in and out
[00:17:46.870]of psych hospitals for my eating disorder.
[00:17:50.500]And I thought that having a diagnosis of autism
[00:17:53.370]would help these providers better understand how to help me,
[00:17:57.490]but they didn't.
[00:17:58.760]They still didn't understand autism,
[00:18:00.740]and something I wrote in a journal is, can I remember,
[00:18:07.910]people don't understand autism, especially in adults.
[00:18:11.410]The medical system is set up to diagnose
[00:18:13.640]and label people and not treat them.
[00:18:16.550]But my ability to mask and my inner strength
[00:18:19.250]to get me through tough situations.
[00:18:24.750]Sorry.
[00:18:26.832]I will make it through because of my ability to mask
[00:18:29.720]and my inner strength to get me through tough situations.
[00:18:33.210]But this also becomes a hindrance
[00:18:35.400]because in order to fit other people's expectations
[00:18:39.110]and to survive, I have to hide,
[00:18:41.670]and then I forget who I am.
[00:18:46.700]So Kim, are you saying in order to survive
[00:18:49.570]the treatment for your eating disorder,
[00:18:54.210]you had to mask your autism
[00:18:56.900]because they didn't know how to address it?
[00:18:59.780]Yes.
[00:19:00.970]I was even told by some providers.
[00:19:03.910]Usually when I went to a treatment center,
[00:19:05.690]I had one person,
[00:19:08.900]one provider who was kind of my ally,
[00:19:13.300]and they would help advocate for me.
[00:19:15.610]And I remember in one of the places
[00:19:18.710]that person told me,
[00:19:20.327]"Kim, you're just gonna have to play the game
[00:19:22.337]"because otherwise you're not gonna get outta here,
[00:19:25.057]"they're not gonna see you."
[00:19:27.230]Another provider told me,
[00:19:29.587]"Kim, you have to get into a world
[00:19:31.187]"'cause they can't get into your world,
[00:19:35.437]"you have to pretend."
[00:19:37.470]Wow.
[00:19:38.660]These are by healthcare professionals.
[00:19:40.840]Yeah.
[00:19:42.320]Well I apologize on behalf of all professionals,
[00:19:47.000]that is such a nightmare.
[00:19:49.380]That's such a nightmare, yeah.
[00:19:51.840]Yeah.
[00:19:52.690]And you know, I mean, it makes me want to throw in here
[00:19:56.030]and I don't know if we have it in a future slide here,
[00:19:59.110]but something that's being acknowledged
[00:20:01.870]is the dual empathy problem.
[00:20:04.410]And we've kind of talked for years
[00:20:08.350]about how people on the spectrum
[00:20:10.770]have difficulty having empathy.
[00:20:13.280]And it's just kind of this thing that we say,
[00:20:15.980]and isn't true
[00:20:19.810]that people on the spectrum can't have empathy.
[00:20:22.260]And at the same time, neurotypical people,
[00:20:25.390]including neurotypical mental health providers
[00:20:29.430]are having a total lack of empathy
[00:20:32.210]for the autistic people that we're trying to support.
[00:20:37.330]So we have as much responsibility I speak
[00:20:40.350]as a neurotypical mental health provider.
[00:20:43.930]We have the responsibility
[00:20:47.697]to try to step into their shoes,
[00:20:49.700]to try to take a perspective,
[00:20:52.440]to think of the experience of the individual
[00:20:54.930]on the spectrum and to not require them to mask
[00:20:58.990]in order to get the services and support that they need.
[00:21:02.887]And to build on that as well,
[00:21:06.080]when we think about so for mental health providers,
[00:21:08.317]and we think, well and not just mental health providers,
[00:21:10.750]any provider, your relationship is key.
[00:21:14.450]And so how do we build those relationships and ensure,
[00:21:18.875]you can imagine it's gonna go a long way
[00:21:21.050]to build a relationship if you take the time and effort
[00:21:24.210]to really understand the other persons lived experience.
[00:21:31.070]And so if we wanna be more effective
[00:21:34.756]in whatever we're doing,
[00:21:35.589]whether we're in OTs, SLPs, psychologists, social workers
[00:21:39.110]or whatever, we are music therapist, you name it.
[00:21:41.780]If we wanna be better with what we're doing,
[00:21:44.290]building that relationship, having that rapport
[00:21:47.790]is going to be key and this is just one component
[00:21:52.010]of building those healthy working relationships.
[00:21:58.430]I want to share really quick something,
[00:22:02.660]I asked some of my clients,
[00:22:04.520]if they could write out
[00:22:08.350]what advice they'll would give to providers?
[00:22:11.300]And one of them wrote this.
[00:22:16.807]"So I have learned to squeeze myself
[00:22:18.747]"and my symptoms into a language
[00:22:20.537]"that I hope you'll understand.
[00:22:24.117]"Even when that does my healing a disservice.
[00:22:28.977]"Because I hope that if I make myself simpler to you,
[00:22:32.347]"you'll take the time to see me as my whole self
[00:22:35.017]"and not a cluster of symptoms.
[00:22:37.007]"The sooner you become my ally,
[00:22:38.737]"the sooner the energy can refocus on the actual goals
[00:22:41.757]"of our work together."
[00:22:44.690]And I wanted to share that,
[00:22:45.940]because I see this so often
[00:22:50.360]and I've experienced it myself,
[00:22:54.440]when we go to providers
[00:22:57.070]for mental health, for OT services,
[00:23:01.150]for whatever kind of services we're needing,
[00:23:04.600]we do tend to,
[00:23:06.700]people with autism, we do tend to mask ourselves
[00:23:10.430]for the sake of the provider
[00:23:11.810]so the provider doesn't judge us.
[00:23:13.760]So the provider will be able to connect with us
[00:23:18.980]because I know for me,
[00:23:24.960]it's very hard to go to a provider,
[00:23:27.640]who's you're going to get help
[00:23:31.480]and they don't understand you
[00:23:33.910]because you speak a different language.
[00:23:36.260]So I will tend to mask and try to make it,
[00:23:41.070]so I'm entering their world always, and I see that a lot.
[00:23:47.720]We have a lot to teach providers, Kim,
[00:23:51.080]and I'm so glad that you are doing this work, it's needed,
[00:23:56.530]and people need, they need to listen to you.
[00:23:58.850]You have a lot of important things to share.
[00:24:02.990]I wanna move to this next slide here.
[00:24:05.860]Tell us a little about this learning to thrive.
[00:24:10.160]What did you do to learn to thrive?
[00:24:12.090]What helped you?
[00:24:14.500]So, well, it took a lot of determination.
[00:24:21.400]I found that the foundation to discovering
[00:24:26.410]who myself was becoming more self aware.
[00:24:30.560]I had to discover the whys behind what I was doing,
[00:24:39.162]because I had, as we mentioned before,
[00:24:41.140]I was in and outta of psychiatric hospitals
[00:24:42.970]for my eating disorder.
[00:24:44.540]I had to figure out the whys behind my symptoms.
[00:24:49.200]A lot of my eating disorder symptoms
[00:24:51.260]were tied up with autism
[00:24:52.830]and were tied up with sensory processing.
[00:24:55.530]And I had to figure out like, okay, why am I throwing up?
[00:25:00.890]Why am I restricting my food intake?
[00:25:04.160]Why am I over exercising?
[00:25:05.880]Because sometimes it might be for eating disorder reason,
[00:25:08.770]sometimes it might be for a sensory reason.
[00:25:13.500]And in order for me to even discover the why,
[00:25:16.200]I had to first learn about autism,
[00:25:19.000]and learn how the different characteristics
[00:25:22.150]of autism affect me personally,
[00:25:25.723]and how that looks like in daily life
[00:25:26.940]and different situations, in different environments.
[00:25:32.687]And it wasn't just being self aware,
[00:25:36.950]I had to learn how to communicate effectively,
[00:25:39.720]so I could get the help I needed.
[00:25:44.200]Because there were times when I knew what was going on,
[00:25:47.510]but I wasn't to communicate in a way
[00:25:50.950]that other people were really understanding.
[00:25:57.300]Right, thank you for, I think there's,
[00:26:02.650]so much for me to absorb.
[00:26:04.370]Every time I hear you speak, I learn more and more.
[00:26:07.080]And what you do, kind of do,
[00:26:08.226]learn it on your own, is remarkable.
[00:26:13.450]Makes me wonder what you also could have learned
[00:26:16.670]had you had someone who understood
[00:26:20.440]and could have provided more guidance too.
[00:26:29.440]Tell us a little bit
[00:26:32.130]about how you process the world.
[00:26:39.120]Yeah, I learned one of the key things to help me,
[00:26:43.409]learned to take off that mask was learning,
[00:26:45.710]like I said, my autism traits,
[00:26:47.300]but also that I process information differently
[00:26:51.650]and that differently it's okay, it's not wrong,
[00:26:55.370]it's just different.
[00:26:57.630]And understanding that,
[00:27:02.030]understanding how I process and that it was okay
[00:27:05.270]that I processed that way,
[00:27:07.410]gave me permission to restructure my thoughts
[00:27:12.910]and go from I'm stupid I can't,
[00:27:18.230]I'm stupid because I can't do this, or I'm a bad person
[00:27:21.270]because I hurt this person's feelings too,
[00:27:24.470]oh, maybe I'm not understanding the social cue,
[00:27:29.360]this person's social cues.
[00:27:30.590]What can I do to better understand this situation?
[00:27:35.670]It's understanding
[00:27:40.430]my processing differences helped me to,
[00:27:49.050]rebuild my self-esteem.
[00:27:54.250]I've seen that too.
[00:27:55.140]I remember we've had this conversation before.
[00:27:57.100]I remember one of these days we're gonna finish this sketch,
[00:28:00.940]this drawing we started to create
[00:28:02.670]about what helped things turn around,
[00:28:05.340]and it's gonna be brilliant.
[00:28:06.300]I know it will be.
[00:28:10.828]And I love how you turn that corner
[00:28:13.630]from kind of looking at yourself
[00:28:15.740]as different in a negative way
[00:28:18.311]to really kind of,
[00:28:19.144]really starting to pinpoint you have sensory differences
[00:28:22.180]that this is okay, and here's some things,
[00:28:24.550]this is something I can do something about et cetera.
[00:28:27.250]And turning that corner seems like
[00:28:29.320]it was one of the many components
[00:28:31.900]that really helped turn things around for you.
[00:28:35.310]You've already touched on this a lot,
[00:28:37.570]but I wanted to see was there anything else
[00:28:40.080]that you wanted to add
[00:28:41.520]about what helped make things turn around for you?
[00:28:48.530]Yeah, so I had,
[00:28:52.070]my initial, like turning around
[00:28:54.050]was having a provider who was willing
[00:28:57.480]to just come into my world first.
[00:29:00.170]And that provider didn't know that much about autism.
[00:29:03.740]But she came into my world without expectations,
[00:29:08.980]or without agendas or judgment.
[00:29:11.730]She listened to my ways of communicating,
[00:29:14.300]and she didn't try to fix me or tell me I was wrong
[00:29:17.680]or feeling something that I wasn't.
[00:29:20.930]And I think that's really important to remember
[00:29:23.110]'cause so many times providers jump in and try
[00:29:26.570]to find a fix to a problem them instead of listening,
[00:29:30.920]and you really need to listen first.
[00:29:35.470]Listen first, I think that's sage advice.
[00:29:40.690]I was going to share just a little bit
[00:29:43.200]about some additional strategies,
[00:29:46.090]but I really think it kind of builds on that listen first,
[00:29:50.010]for how a mental healthcare provider
[00:29:53.670]or other providers might address masking in session.
[00:29:57.350]And this is something I do routinely,
[00:30:01.120]I always collect part of my intake,
[00:30:03.400]I use well, the underlying characteristics checklist.
[00:30:06.620]I think we're gonna talk about that a little bit today,
[00:30:09.010]but there are self reports on there.
[00:30:11.000]And the self reports are amazing,
[00:30:12.660]'cause they really help me to understand
[00:30:15.060]the world through somebody else's eyes.
[00:30:17.060]I wanna understand their lived experience.
[00:30:18.810]And there's several items
[00:30:19.710]in there that really talk about masking.
[00:30:22.670]And so I always look at those items before
[00:30:24.810]my very first session.
[00:30:29.242]And I can recall a story where there was someone
[00:30:31.610]who, heavily endorsed how much they had kind of masked
[00:30:35.810]in their childhood and adult life.
[00:30:37.490]And so from the very first session,
[00:30:40.670]we start having converse and about masking
[00:30:43.260]and I wanna encourage them this is a safe place
[00:30:46.510]for you to be unmasked.
[00:30:47.910]And that may be kind of foreign for them.
[00:30:49.770]Some of these individuals are masked even at home
[00:30:53.896]with their family.
[00:30:54.940]And so trying to encourage them to do something
[00:30:58.950]that it's kind of become a habit
[00:31:02.700]for them to be masked,
[00:31:05.370]but to encourage them, to try to something different
[00:31:09.491]is a learning experience.
[00:31:10.980]And so we encourage that from the first session.
[00:31:14.244]And I remember in one particular example,
[00:31:17.330]we had this discussion,
[00:31:18.510]I could hear this kind of breath of relief
[00:31:21.830]and the person even told me that that feels
[00:31:23.660]so good to hear that.
[00:31:25.630]And this was, I want you to know this was three minutes
[00:31:28.370]into building rapport, the very first session.
[00:31:31.330]And boy,
[00:31:33.240]we had a different session that day
[00:31:34.650]than we probably would have had we not had that discussion.
[00:31:38.580]And so we're gonna start that from the beginning
[00:31:41.470]and helping the client, helping our individuals
[00:31:45.060]to see the gifts of autism.
[00:31:47.350]And I think Kim, as you described it also beautifully,
[00:31:50.530]you started to see things as it's not bad,
[00:31:53.590]it's just different.
[00:31:54.810]And I wanna avoid that, I'm broken that shame cycle.
[00:32:00.160]That's just never a good place to be in.
[00:32:02.300]And that certainly does not marinating
[00:32:05.780]in those juices, so to speak,
[00:32:07.470]the arm broken is not good for our mental health
[00:32:09.850]and it's not accurate.
[00:32:11.820]And so we start to,
[00:32:13.715]we're really work on trying
[00:32:14.880]to change beliefs associated with masking.
[00:32:17.308]If people knew the real me,
[00:32:21.013]they wouldn't like me or I could never make friends
[00:32:24.069]if starting to challenge that well actually you
[00:32:26.170]have some friends and after we have lengthy discussions
[00:32:29.900]about, well, I mask when I'm at work,
[00:32:31.390]but not when I'm with my friends.
[00:32:33.280]So you have friends and your friends like you?
[00:32:35.990]Yes they do.
[00:32:36.823]And you're not masked around them?
[00:32:37.860]No, I'm not.
[00:32:38.930]Hey, wait a minute.
[00:32:40.440]Maybe people can like me and the real me.
[00:32:43.340]And it's just starting to kinda chip away at that,
[00:32:45.980]and working on strategies to address that anxiety
[00:32:49.010]that is adherent.
[00:32:50.840]When we think about unmasking
[00:32:53.810]and working on other kinds of things
[00:32:58.380]to try to build rapport and create
[00:33:00.510]a comfortable therapy setting.
[00:33:02.010]What can we do to address sensory differences?
[00:33:05.120]Oftentimes different seating, movement needs, et cetera,
[00:33:09.990]just to create that environment where that person
[00:33:12.110]who have may previously have held back things like rocking
[00:33:20.080]or flapping or pacing.
[00:33:22.270]I want to create an environment where they can be free
[00:33:25.360]to do whatever they need to do to be regulated.
[00:33:28.970]And maybe they are used to not saying anything
[00:33:32.720]about the fluorescent lights
[00:33:34.130]because they don't wanna stand out.
[00:33:36.360]And no, no, no, I wanna create an environment
[00:33:37.960]where they can say, you know what,
[00:33:38.870]how about we turn the lights off and open the blinds today.
[00:33:42.000]That's great.
[00:33:43.780]And incidentally,
[00:33:45.850]for those of you who may be providing services
[00:33:47.900]through telehealth, we do the same thing,
[00:33:50.820]there's no difference.
[00:33:53.130]I've had some clients tell me,
[00:33:56.920]through telehealth, you may not be able to tell,
[00:33:58.550]but I have one of those ring light here.
[00:34:00.490]I'll show you here.
[00:34:01.380]You can see a little reflection
[00:34:02.620]I tried to hide it over here,
[00:34:03.890]a little round light, those bright lights.
[00:34:06.300]And I had one person say, hey, will you turn that off?
[00:34:09.050]It's too bright, you're face.
[00:34:10.390]That's what I told William this morning.
[00:34:12.456](laughing)
[00:34:13.289]And so for me, it's okay.
[00:34:15.220]You know, I wanna make sure I'm not in shadow,
[00:34:17.130]but for this individual, yeah, that's right.
[00:34:20.332]It was too bright for them.
[00:34:21.165]And I've had individuals who they're sitting down,
[00:34:24.480]at home with a laptop,
[00:34:25.930]you know we're doing telehealth
[00:34:27.910]and I can tell that they're becoming dysregulated.
[00:34:31.570]And so I will encourage them to,
[00:34:33.520]well, how about standing up?
[00:34:35.470]How about walking around a little bit
[00:34:37.800]and let's try that out?
[00:34:39.410]And so what we're practicing,
[00:34:41.350]we're using different alternate seating techniques
[00:34:43.660]and other movement techniques and bottom up strategies,
[00:34:47.545]even though we're doing telehealth.
[00:34:49.340]So you can do that, whether you're in person or not.
[00:34:51.520]And so these are helpful tools for trying
[00:34:54.270]to begin that process of unmasking and helping people
[00:34:57.580]to be more comfortable with that.
[00:35:00.340]Before you change slides.
[00:35:01.850]Oh, yes, oh, sorry, I pressed a button.
[00:35:03.710]Yes, here we go.
[00:35:05.130]I wanted to add two things on teaching strategies
[00:35:09.290]to address anxiety associated with unmasking.
[00:35:13.200]Something that I do with clients who are needing to,
[00:35:19.260]'cause a lot of people are really ashamed
[00:35:21.660]to say I have autism or to ask for accommodations
[00:35:26.540]and that creates a lot of anxiety.
[00:35:29.550]And something that I do to help clients
[00:35:33.890]with that is I'll do create some scripts with them,
[00:35:38.810]but have several different versions of it.
[00:35:41.762]So, okay, this is what you'll say to this person,
[00:35:46.240]to your boss at work because you need accommodations,
[00:35:49.730]and how can your boss respond?
[00:35:52.370]He might respond this way, this way, this way or this way.
[00:35:56.256]And then we make a script for each of those ways
[00:35:58.210]that we identified.
[00:35:59.980]And that really decreases the anxiety
[00:36:02.580]of the unknown as far as like what is going to happen
[00:36:06.150]or not happen.
[00:36:07.330]'Cause they have a formula or format for each situation.
[00:36:13.120]And that really helps them to make that step forward
[00:36:16.830]and work through that anxiety.
[00:36:19.445]Look at that, I'm gonna write it down right now.
[00:36:21.160]We're gonna make that change so people
[00:36:23.509]can have that visual support there, creating scripts.
[00:36:26.840]And then with the adjustments,
[00:36:28.620]on the sensory aspect.
[00:36:33.230]Because a lot of people,
[00:36:36.060]when I first start working with them are really embarrassed
[00:36:38.580]about needing to use different sensory supports
[00:36:42.470]or they might not even know what sensory supports they need,
[00:36:45.030]but I make sure, and I tell them,
[00:36:48.010]you know what, I'm using TheraPutty, it's right here,
[00:36:51.040]and I show them.
[00:36:52.110]And like I'm walking on a treadmill
[00:36:55.420]or I'm on my balance board
[00:36:57.840]because I need to move when I'm interacting and conversing.
[00:37:03.910]And that shows them that, hey, it's okay, Kim's doing this.
[00:37:09.780]And it makes them not feel as alone
[00:37:14.320]because they see that you're doing it as well.
[00:37:18.790]It also helps,
[00:37:19.940]it's also helped when I have a child or a person
[00:37:26.540]who needs a support person with them during session,
[00:37:29.590]during a virtual session,
[00:37:31.700]to see that, hey, it's okay for Johnny to pace
[00:37:39.310]because it will help him to better interact
[00:37:42.800]because Kim's pacing.
[00:37:46.510]So you're modeling,
[00:37:47.690]you're helping the person to really see that it's okay.
[00:37:51.447]And you know what's that?
[00:37:52.580]That's also building, relationship building.
[00:37:54.560]And that goes a long way,
[00:37:56.420]and especially
[00:37:59.390]when are have a good relationship with you
[00:38:03.725]then that's gonna even take what you're doing even further.
[00:38:06.850]This is something, you said earlier, you said, just listen.
[00:38:09.920]And so I just wanted to just highlight that as well.
[00:38:15.130]And so for counselor's I like,
[00:38:18.130]I wanna learn your language.
[00:38:20.100]And so sometimes people have different ways
[00:38:23.250]of describing their emotions.
[00:38:24.560]Like I'm having shiny thoughts.
[00:38:26.370]Well, that's great.
[00:38:27.203]I just need to learn what that means.
[00:38:30.451]And that becomes part of my language.
[00:38:33.380]And so, you know, when someone's talking to me,
[00:38:36.060]I might say, was that one of your shiny thought moments
[00:38:38.360]or are you having a shiny thought right now?
[00:38:40.580]Or is your energy shooting?
[00:38:42.710]And so I'm gonna use their language.
[00:38:44.540]And that's part of that double empathy like Ruth
[00:38:47.700]is talking about.
[00:38:50.140]Okay.
[00:38:53.940]So Kim, tell us a little bit about how you help your clients
[00:38:58.050]and you of course, you've been talking
[00:38:59.140]about that all day today,
[00:39:00.230]but if there's additional ways that you help.
[00:39:03.640]Yeah, I do a lot of different questionnaires.
[00:39:08.180]I use the UCC from model Ziggurat,
[00:39:11.310]but I also use a variety of sensory questionnaires
[00:39:15.840]and I use,
[00:39:21.980]the listening therapy has a really good intake form
[00:39:26.120]and it goes through a lot of processing information,
[00:39:31.040]asking questions, like,
[00:39:32.240]how do you process visually?
[00:39:34.510]How do you process auditory?
[00:39:36.310]It's really detailed, and I use that.
[00:39:39.500]I also make up a lot of my own questions
[00:39:41.950]and I send them,
[00:39:45.750]I send to a lot of clients webinars
[00:39:49.100]and videos and blogs from other autistic individuals
[00:39:53.430]or other experts talking on specific topics
[00:39:57.430]that I think this client would benefit from hearing.
[00:40:01.280]And giving them that information,
[00:40:03.480]now really helps them to better understand themselves
[00:40:07.260]and also not to feel so alone in their experiences.
[00:40:13.075]I... Great.
[00:40:13.908]Do a lot of, like helping them discover
[00:40:15.480]their strengths as well.
[00:40:19.610]So if they,
[00:40:21.610]so perseverating or getting stuck
[00:40:26.420]is easily seen as a weakness,
[00:40:28.750]but, or not a weakness,
[00:40:30.290]but something not preferred.
[00:40:33.900]But it can be a strength too.
[00:40:36.370]So reframing your thoughts
[00:40:39.140]and seeing both sides of a trait.
[00:40:43.640]I love how you do that.
[00:40:44.767]And those are dots,
[00:40:47.440]I would say that that are sometimes difficult
[00:40:50.270]to connect, especially for individuals
[00:40:54.480]who have kind of a long history of being self critical,
[00:41:00.108]and being self critical they probably have good,
[00:41:05.110]that didn't develop on its own.
[00:41:07.170]That those are messages
[00:41:08.630]they've heard from others and so forth,
[00:41:10.940]and kind of got internalized.
[00:41:13.040]But to hear the healthier way,
[00:41:15.760]looking at things from an alternate perspective,
[00:41:20.043]with your wisdom and your guidance is such a gift.
[00:41:26.200]Let's see.
[00:41:27.150]Also I wanna touch briefly on interceptive awareness,
[00:41:31.010]which is really important too.
[00:41:32.420]And intersection is,
[00:41:36.200]or interceptive awareness is your ability
[00:41:39.440]to translate your internal body cues.
[00:41:44.140]So am I hungry?
[00:41:46.080]Am I full?
[00:41:46.980]Do I have to go to the bathroom?
[00:41:49.110]Am I mad?
[00:41:50.470]Am I happy?
[00:41:51.750]Because emotions,
[00:41:55.670]are really just body sensations
[00:41:57.840]that we've put definitions towards to.
[00:42:03.120]And so helping people understand what these body sensations
[00:42:06.540]are that they're experiencing,
[00:42:08.650]and also if they tend to over experience
[00:42:12.520]these sensations, under experience them,
[00:42:15.800]or have difficulty differentiating between them,
[00:42:20.010]and to do that, I do a lot of body experiments.
[00:42:25.430]So having them do different actions
[00:42:31.600]and yeah, just a different actions
[00:42:35.886]and things with their different body parts,
[00:42:37.240]and then having them kind of analyze
[00:42:42.416]what did that feel like?
[00:42:43.590]Did you have any kind of thoughts?
[00:42:44.920]Did it change what you wanted to do?
[00:42:49.807]Did it change your level of focus?
[00:42:51.330]And just really getting
[00:42:52.750]them to try to understand their body.
[00:42:57.150]So wise in that interceptive piece really comes first,
[00:43:03.680]for helping people to regulate their emotions.
[00:43:06.990]They have to identify them first
[00:43:08.530]and that I want you to,
[00:43:13.838]can you tell us a little about some of this intervention
[00:43:16.360]in particular and how you use this with clients?
[00:43:19.620]Yeah, so one of my clients was going to a new therapist
[00:43:25.210]and after like the third session,
[00:43:29.360]she came back to me and was just like,
[00:43:31.190]she's not understanding me at all.
[00:43:34.387]And so together we made a list of what her therapist needs
[00:43:41.330]to understand about her because she has autism.
[00:43:44.140]So we went through and listed out these things.
[00:43:51.520]I do a list like this whenever I go to a new provider,
[00:43:55.280]whether it's a doctor or a therapist or,
[00:44:02.600]well psychotherapist or a physical therapist,
[00:44:05.350]any kind of healthcare professional,
[00:44:08.407]I usually go through and make one of these.
[00:44:11.920]I hope they listen to you.
[00:44:13.070]There's so much wisdom here.
[00:44:14.250]And I'm thinking if someone provided this to me,
[00:44:16.960]oh my goodness, this is what a great,
[00:44:20.780]first off it's great that you have that insight
[00:44:22.500]and that you kind of understand what your needs are,
[00:44:24.560]but I'm thankful.
[00:44:25.960]I'm thankful that you would be sharing this with me
[00:44:29.600]so that we could,
[00:44:31.960]it certainly helps my learning curve
[00:44:34.060]to know what's effective for you
[00:44:36.170]and so that we could begin to do important things.
[00:44:43.720]Is like sometimes the provider still isn't gonna get it.
[00:44:47.344]And that's okay.
[00:44:50.252](muffled speaking)
[00:44:51.440]Yeah.
[00:44:52.980]It happens a lot, but it still makes me feel,
[00:44:57.850]or it makes a client feel,
[00:45:03.250]like they're self advocating still for what they need.
[00:45:07.160]And it gives them the information that, okay, hey,
[00:45:09.940]I'm self advocating and I let this provider know
[00:45:13.440]this is what I need.
[00:45:14.740]It's not working.
[00:45:15.573]So, okay, it's time to go and try a different provider now.
[00:45:19.220]Yeah, that's wise.
[00:45:20.770]Yeah, you tell someone what you need
[00:45:23.366]and they don't give it to you
[00:45:24.280]then let's find someone who can.
[00:45:27.670]Tell us about this intervention
[00:45:29.100]that you've done with a client.
[00:45:32.230]That is with the same one as before.
[00:45:35.290]So we did what I need you to know about me
[00:45:38.500]and then also a what I need and how you can help me.
[00:45:44.630]We were finding that a lot of trauma therapists,
[00:45:48.980]they're very client-centered, which is great.
[00:45:51.730]But the way that this particular provider
[00:45:54.810]was being client-centered was not offering enough structure
[00:46:00.400]for my client who has autism
[00:46:02.210]and people with autism typically need a lot of structure.
[00:46:08.510]And so that was a big issue.
[00:46:10.290]So we created this list to help with issues like that.
[00:46:21.190]This is how you can communicate with me,
[00:46:25.637]asking concrete questions,
[00:46:31.260]asking me to write out what I need to focus on,
[00:46:34.150]and then emailing it to you can be helpful.
[00:46:36.560]Because a lot of times people
[00:46:38.880]with autism might process better with writing,
[00:46:42.760]and they need to think about it before
[00:46:46.160]the moment of the session
[00:46:49.520]because of how we process information.
[00:46:54.740]All right.
[00:46:55.573]Well, I'm gonna tell you why I'm smiling.
[00:46:59.340]Y'all don't know this,
[00:47:00.173]but what we're about to do is hear some more poems from Kim.
[00:47:03.470]These are Some Who am I Poems?
[00:47:06.080]So I knew that, but y'all didn't.
[00:47:07.810]Oh, so I do Who am I Poems with my clients too.
[00:47:12.420]So, because they have spent so long masking
[00:47:15.810]and telling themselves these negative dialogues,
[00:47:19.850]and they've kind of created this negative self-portrait,
[00:47:24.360]I try to help them once we've explored
[00:47:28.420]their autism traits
[00:47:29.590]and their strengths.
[00:47:33.100]I encourage them to make Who am I Poem.
[00:47:36.560]And so I started doing,
[00:47:41.360]I did my own, Who am I Poem,
[00:47:42.850]because I found myself one day just thinking in my head,
[00:47:46.640]you know, why can't I do this?
[00:47:51.061]I'm being so dumb, and then I was like, wait a minute.
[00:47:52.500]No, it's just hard for me
[00:47:55.941]because I'm having a hard time with regulation.
[00:48:00.117]And then a poem came out of it.
[00:48:02.310]Who am I?
[00:48:03.197]"I am not a diagnosis.
[00:48:04.787]"I am not a label.
[00:48:06.127]"I'm not eating disorder.
[00:48:07.527]"I'm not autism.
[00:48:08.607]"Or sent through processing disorder.
[00:48:10.887]"I'm not a failure.
[00:48:11.767]"I'm not worthless.
[00:48:12.617]"I'm not stupid.
[00:48:14.017]"I'm not a mistake, nor am I my mistakes.
[00:48:18.537]"Who am I?
[00:48:19.517]"I am brave.
[00:48:20.350]"I am strong.
[00:48:21.183]"I'm creative and innovative.
[00:48:22.967]"I am a thinker.
[00:48:25.237]"I am perceptive and intuitive.
[00:48:26.727]"I am full of energy.
[00:48:29.837]"I have autism.
[00:48:30.707]"I see things differently.
[00:48:32.187]"The world moves very fast.
[00:48:34.437]"And I am often unable to keep up, but that is okay,
[00:48:37.007]"I don't have to.
[00:48:38.627]"I see details.
[00:48:39.867]"I can figure out things others often can't,
[00:48:42.947]"because I notice, I create my own solutions.
[00:48:47.347]"I think in pictures.
[00:48:48.947]"My words are visual representations.
[00:48:51.447]"I can't always verbalize my thoughts.
[00:48:53.127]"I can be slow to learn or mishear what is said.
[00:48:56.741]"This can be frustrating,
[00:48:57.647]"but patience, persistence and not giving up is key.
[00:49:02.437]"I feel and see emotions and colors, shapes, and textures.
[00:49:06.587]"I don't like loud or busy places
[00:49:08.447]"because they make my ears bleed in my eye eyes burn.
[00:49:12.197]"I need deep pressure to calm down.
[00:49:15.807]"I may act a little immature or childlike at times,
[00:49:18.877]"and it may do strange things, but that is okay.
[00:49:22.107]"'Cause otherwise, I would not be able to interact
[00:49:25.317]"and be with the world, with you, with me."
[00:49:31.800]Thank you, Kim.
[00:49:33.830]That is true.
[00:49:37.560]You are who you are and whoever is in a role
[00:49:41.620]to serve you or anyone
[00:49:45.590]on the spectrum needs to meet you as you are,
[00:49:49.370]and to be ready to address, to accept you,
[00:49:56.470]and to address those needs.
[00:49:58.210]And we're going to talk about how rare
[00:50:01.810]that is to find professionals
[00:50:06.739]who understand autism and know to adapt,
[00:50:09.440]how to adapt their services for people on the spectrum.
[00:50:13.550]So problem, number two, we talked about masking.
[00:50:16.297]And so problem number two
[00:50:17.610]is the lack of appropriate supports.
[00:50:20.430]And in the next slide you see an email
[00:50:24.530]that Barry and I received a while ago now from Kim.
[00:50:29.700]And it says,
[00:50:30.533]"I became so excited when I found Ziggurat and CAPS.
[00:50:34.447]"I did research on them both
[00:50:36.667]"and read through the books, watched webinars.
[00:50:39.607]"As I educated myself, I became more excited.
[00:50:43.027]"I thought finally, someone created a model
[00:50:45.747]"and a way to structure treatments that make sense
[00:50:48.627]"and they take into account the entirety of the person.
[00:50:52.407]"I also thought, darn I wish they came out
[00:50:55.317]"with that when I was a kid or early 20s, LOL.
[00:50:59.427]"I strongly feel that CAPS and Ziggurat
[00:51:02.517]"have implications for more than just school aged children.
[00:51:08.267]"Like it's often taught in conjunction with,
[00:51:10.637]"more than just for those with ASD or SPD,
[00:51:14.797]"more than just for kids."
[00:51:17.480]And this email from Kim began our relationship
[00:51:23.770]and began our friendship.
[00:51:25.710]And one of the things
[00:51:27.150]that Barry and I have found since creating
[00:51:30.540]the Ziggurat model
[00:51:31.800]is the people who catch onto it,
[00:51:35.750]the most quickly, are autistic people.
[00:51:39.180]And I think it's because the Ziggurat is systematic.
[00:51:43.960]And people who are autistic tend to think systematically
[00:51:50.080]and tend to prefer things that they can routinize
[00:51:55.740]and they can have a plan ahead of time.
[00:51:58.470]That's what the Ziggurat model does.
[00:52:01.230]And so Kim was one of those people who went,
[00:52:05.220]man, I'm so glad this is here.
[00:52:07.150]I'm so glad we found it.
[00:52:08.540]And she has taken the model.
[00:52:11.810]And indeed, when we first started using the Ziggurat model,
[00:52:17.240]we applied it very often to children and to school settings.
[00:52:22.060]And it's still ideal and thriving
[00:52:25.200]and working with children in school settings,
[00:52:27.140]but more and more,
[00:52:28.790]we using it to adapt mental health services
[00:52:31.540]and to adapt services and supports for adults.
[00:52:35.690]And that's what Kim was enlightening us on in this email.
[00:52:41.260]And on the next slide,
[00:52:43.480]Kim has more to say about how she has used
[00:52:47.880]the Ziggurat model.
[00:52:51.892]Yeah, the Ziggurat model is one of the few tools
[00:52:53.830]that would've made a great impact,
[00:52:55.870]for me if I had been introduced to it early on.
[00:52:58.960]So I have found this model to be good as a self-help guide,
[00:53:05.030]a tool for self-advocacy,
[00:53:07.600]a framework for planning strategies,
[00:53:11.060]for my self planning strategies for me,
[00:53:15.355]but also to give to my providers to give them a framework.
[00:53:19.500]It also bridges the gap between different providers
[00:53:22.830]and also between family members.
[00:53:26.520]Yeah, so we're gonna talk specifically about how to use
[00:53:30.500]the Ziggurat model to adapt mental health services
[00:53:35.450]and other services that people on the spectrum seek.
[00:53:43.400]So in the next slide, just more about the problem.
[00:53:47.480]And here, this is a title of an article,
[00:53:52.790]and the title is People Like Me Don't Get Support,
[00:53:57.935]Autistic adults', experiences of support and treatment
[00:54:02.120]for mental health difficulties,
[00:54:03.950]self-injury and suicidality.
[00:54:07.425]And some of these authors here on this article
[00:54:08.990]are leaders in the field of looking
[00:54:11.080]at how we can better match mental health services
[00:54:14.960]to people on the spectrum,
[00:54:16.890]to the needs of people on the spectrum.
[00:54:19.770]But what they found when they did their surveys
[00:54:22.260]is that autistic people were just really struggling,
[00:54:25.270]just like Kim has described.
[00:54:27.600]With finding people
[00:54:28.850]who they don't have to show how to help them.
[00:54:34.092]We should know how to adapt our services.
[00:54:36.820]We should go in.
[00:54:39.280]We're not talking about a small group of people,
[00:54:41.460]we're talking about a significant group of people
[00:54:44.440]who are going to need support just like anybody
[00:54:48.210]in this world needs support from time to time.
[00:54:50.880]And we need to know how to make it accessible to them.
[00:54:54.800]So on the next slide are some quotations
[00:54:57.950]from people who have sought help.
[00:55:00.450]The first one is a parent.
[00:55:02.567]"The health services try to dismiss very clear diagnosis
[00:55:06.017]"of autism
[00:55:07.497]"and put my son into a mental health residential placement."
[00:55:12.060]The second one from a parent.
[00:55:14.027]"Misdiagnosis and mistreatment led to a wasted seven years."
[00:55:20.440]And over and over people who have the diagnosis of autism,
[00:55:27.128]especially if they're women like Kim is,
[00:55:29.790]or if they're bright
[00:55:32.680]and have a lot of skills like Kim does,
[00:55:36.480]people will actually dismiss the autism diagnosis.
[00:55:42.550]Well, (indistinct) somebody got that wrong.
[00:55:45.810]And...
[00:55:46.643]I had a client who came to me and said,
[00:55:50.380]this was the very first time she had told anybody
[00:55:53.120]about her autism diagnosis.
[00:55:55.250]She told her medical provider,
[00:55:57.740]and her medical provider said,
[00:56:00.410]you can communicate to me just fine, you don't have autism.
[00:56:05.900]It makes, yeah.
[00:56:07.120]I've actually, you know work with somebody
[00:56:09.210]whose physician said you are smiling
[00:56:13.010]and you can't have autism if you smile.
[00:56:15.140]I've heard people say you can't have autism
[00:56:17.692]if you make eye contact, it goes on and on.
[00:56:19.740]And it's just- Laugh.
[00:56:21.705]Yeah, if you laugh.
[00:56:23.770]Yeah, it's stupidity is what it is.
[00:56:26.290]The things that people say,
[00:56:27.610]if you'll forgive me for being so rude here.
[00:56:30.890]But so one of the big challenges is people misdiagnosing
[00:56:34.700]or dismissing an autism diagnosis,
[00:56:37.410]'cause somehow it doesn't fit into their concept
[00:56:40.130]of what autism looks like.
[00:56:41.930]And then the quotation, this is an adult whoops,
[00:56:44.980]adult with autism.
[00:56:46.287]"I was alone with the constant struggling,
[00:56:48.097]"having no idea why I felt and behaved the way I did.
[00:56:51.397]"I was told that I was simply too dramatic or sensitive."
[00:56:54.490]So this is someone ignoring the autism
[00:56:57.700]and people not recognizing their autism.
[00:57:01.477]And then finally a brilliant person, Kim Clairy.
[00:57:04.390]Who's talking about her experience being referred
[00:57:07.710]to a clinic.
[00:57:10.020]And the question was asked,
[00:57:13.007]"do we need to worry about her throwing chairs at us?"
[00:57:16.690]When asked, "what was asked when my therapist mentioned
[00:57:21.240]to clinicians at a treatment facility that I have autism."
[00:57:24.890]So it's just another example of,
[00:57:28.510]just lack of information and understanding
[00:57:30.850]what it means to have autism
[00:57:33.320]that people experience when they need to seek help.
[00:57:37.370]So the next slide,
[00:57:40.040]is a poem by Kim, will you share this?
[00:57:44.767]"The colors I hold inside.
[00:57:46.707]"The struggles I try to hide.
[00:57:48.667]"I don't know where to go or what to do.
[00:57:50.497]"And everything is different and new,
[00:57:52.847]"everywhere getting lost,
[00:57:54.577]"feeling lost
[00:57:55.507]"in every way.
[00:57:56.977]"Despite the smile on my face.
[00:57:59.137]"No, I am not okay.
[00:58:01.217]"The colors I hold inside.
[00:58:02.827]"The struggles I try to hide.
[00:58:04.957]"I wish I could put into words what it is like to be me.
[00:58:07.767]"To live in a world inside my head
[00:58:10.817]"where often thoughts are buzzing around like bees.
[00:58:13.817]"Noises come from outside and from within.
[00:58:17.167]"All day, I'm trying to sort out, all that is coming in.
[00:58:20.947]"My senses are bombarded by texture,
[00:58:22.747]"sight smells and sounds.
[00:58:24.717]"There's nowhere safe to go this commotion is always around.
[00:58:28.637]"All that is coming in, it's hard to sort out.
[00:58:31.217]"Especially when on top of that,
[00:58:32.887]"I have these eating disorder voices that love to shout.
[00:58:36.627]"Will I ever recover from this eating disorder
[00:58:38.987]"and be set free
[00:58:40.397]"when the ones who can help don't ever seem to listen to me.
[00:58:44.637]"The colors I hold the struggles I try to hide."
[00:58:49.480]I wrote that at one of the treatment centers.
[00:58:53.370]Yeah.
[00:58:54.697]And it was probably at a time when you were needing people
[00:58:59.040]to understand better who you are, including your autism.
[00:59:03.340]Yeah, so I was told by several different providers
[00:59:07.320]in different places that I would never be able
[00:59:10.730]to live on my own, I needed to live in a nursing home.
[00:59:13.830]My autism was severe,
[00:59:18.380]because they weren't listening to me.
[00:59:22.490]I'm accommodating my sensory and my communication needs.
[00:59:26.970]Yeah, so Barry, if you'll skip one slide here
[00:59:30.290]we go one more.
[00:59:33.780]No, that's it.
[00:59:35.150]Yeah, so in general, what we're talking
[00:59:37.310]about is that when autistic people seek help,
[00:59:43.900]they end up dealing with mental health professionals
[00:59:46.640]and psychiatrists who are not trained
[00:59:49.680]in recognizing autism and are not trained
[00:59:52.760]in adapting their services to people who are autistic.
[01:00:01.760]When we use assessment tools,
[01:00:05.460]most assessment instruments have not been validated
[01:00:08.910]on the autistic population.
[01:00:11.980]So we are giving tests with cutoff points
[01:00:17.541]that don't really apply very well to people with autism
[01:00:20.830]who may be interpreting the items more literally
[01:00:24.380]or differently from the neurotypical peers.
[01:00:27.060]So we don't have people who are trained to work with autism.
[01:00:30.760]We don't have instruments that are good.
[01:00:33.880]And then we need to,
[01:00:37.580]people tend to take the therapies,
[01:00:42.480]the field that they've been trained in,
[01:00:46.720]and the traditions from that field,
[01:00:50.250]and just apply it to everyone who walks into their office.
[01:00:53.960]Well, if you have neurotypical people who walk
[01:00:56.410]into your building
[01:01:00.870]or show up on your screen in this day of teletherapy,
[01:01:06.080]then neurotypical people probably
[01:01:10.000]are going to be able to respond
[01:01:11.800]to most of the traditional approaches you always have.
[01:01:15.770]But if you're dealing with a neuro divergent population,
[01:01:19.060]if you're dealing with people who are wired differently,
[01:01:21.860]then we cannot take what we've traditionally done
[01:01:24.520]and just force it on people who are autistic.
[01:01:30.950]So we need to adapt therapies, or adapt our approaches
[01:01:36.260]for people on the spectrum.
[01:01:38.180]And on the next slide,
[01:01:40.010]you kind of see the heart of that.
[01:01:41.890]The heart of adapting therapies,
[01:01:43.700]the adapting therapist at the top,
[01:01:45.370]but at the bottom there is building knowledge of autism,
[01:01:50.710]building experience and autism.
[01:01:53.280]And Barry and I developed the Ziggurat model
[01:01:56.300]to adapt education settings,
[01:01:59.610]to adapt mental health settings,
[01:02:01.590]to adapt other therapeutic settings
[01:02:04.980]for people on the spectrum.
[01:02:07.860]But it's from our knowledge and experience working
[01:02:10.520]with people with autism.
[01:02:12.490]So first you need to gain some experience and familiarity
[01:02:18.290]with the spectrum, with people on the spectrum,
[01:02:21.690]then you develop a therapeutic relationship.
[01:02:25.680]You have to begin with relationship,
[01:02:28.682]and then you take your field, knowledge in your field
[01:02:32.820]and adapt it using the Ziggurat model
[01:02:37.200]to address the needs and streams
[01:02:42.556]of people on the spectrum.
[01:02:45.440]So what is this funny thing?
[01:02:47.800]This thing called the Ziggurat model.
[01:02:49.500]I'm gonna tell you very briefly here, this story.
[01:02:53.920]The Ziggurat is,
[01:02:58.910]here's a definite from the dictionary here.
[01:03:01.380]It's a temple having the form of a terraced pyramid.
[01:03:04.520]But if Ruth and I could be so bold,
[01:03:07.010]we'd love to add some definitions
[01:03:08.800]and one of them, is that it's a framework
[01:03:10.570]for designing comprehensive interventions
[01:03:12.670]for individuals with autism spectrum disorder.
[01:03:15.260]But guess what,
[01:03:16.170]it's also a framework for adapting mental health
[01:03:20.820]or any kind of therapies for individuals with autism
[01:03:25.080]and believe it or not,
[01:03:26.778]there's a third definition we would add here,
[01:03:28.890]fourth rather,
[01:03:30.000]which would be that it's also a framework for self-help.
[01:03:34.800]And so today we're gonna focus a little bit more
[01:03:37.498]on the self-help and the adapting therapies, okay?
[01:03:42.990]Again, as we've talked about before,
[01:03:44.950]this Ziggurat model was developed initially
[01:03:47.200]for school-aged populations,
[01:03:49.210]for developing IEPs and insisting in that, and it shines
[01:03:54.040]but today we're gonna focus on different ways of using this.
[01:03:57.310]So maybe some of you may different
[01:03:59.750]from what you may be familiar with.
[01:04:01.790]This approach, the Ziggurat models
[01:04:03.570]is helpful for individuals across the spectrum.
[01:04:06.970]It's also helpful for individuals across the lifespan.
[01:04:12.790]Here's a snapshot of what the Ziggurat model is.
[01:04:16.940]On the left hand side,
[01:04:17.960]we have the characteristics of autism.
[01:04:20.760]We have the core features, the associated features,
[01:04:24.050]but also the strengths and skills.
[01:04:27.000]And so what we wanna do is we always start with assessment
[01:04:30.450]and that's with our tool,
[01:04:31.410]the underlying characteristics checklist.
[01:04:33.770]Next slide, when we go to it, you'll see some of the areas
[01:04:36.800]and how broad that tool is.
[01:04:38.880]And we always start with assessment.
[01:04:40.380]But this is assessment for planning.
[01:04:42.010]This is as for treatment planning,
[01:04:45.250]counseling plans, et cetera.
[01:04:47.870]And for individuals on the spectrum,
[01:04:49.330]it's assessment to help them to understand their needs,
[01:04:53.470]but also their strengths.
[01:04:55.660]And we wanna build on those strengths
[01:04:58.600]and what are we gonna do with that?
[01:05:00.240]We have five levels of intervention on the right,
[01:05:02.900]that's see intervention, that's a support.
[01:05:05.530]And so we're using our assessment tool
[01:05:09.240]to identify needs and strengths,
[01:05:10.850]and we're addressing them comprehensively.
[01:05:13.720]We wanna make sure we have sufficient supports
[01:05:17.030]and strategies on all five of our levels
[01:05:20.560]that you can see here.
[01:05:22.060]If we leave a level off, what's going to happen?
[01:05:25.030]We're not gonna make progress.
[01:05:26.480]And that's not what we want of course.
[01:05:29.400]So we wanna be comprehensive in how we address this.
[01:05:33.620]Well, I mentioned the underlying characteristics checklist
[01:05:36.220]in our five versions.
[01:05:37.550]They go all the way from early intervention
[01:05:39.940]from three months.
[01:05:41.450]And then we have an adolescent and adult self report.
[01:05:45.020]So we really cover the full range of ages and our favorites,
[01:05:49.760]or now of course,
[01:05:51.610]of how practical they're useful in counseling
[01:05:54.620]and other settings of the self reports.
[01:05:57.230]And so I love little Kim's quote here
[01:06:00.270]it's that they, it's a wonderful to build self-awareness.
[01:06:05.440]And that for her is one of the foundations you've talked
[01:06:08.592]about what helps you kind of turn that corner
[01:06:11.300]is really understanding yourself,
[01:06:12.580]your own sensory, differences and so forth.
[01:06:18.443]And that's a helpful tool there.
[01:06:20.520]And so this is the UCC.
[01:06:22.530]We look at the core features of autism,
[01:06:24.650]like social and behavior, interest,
[01:06:26.330]communication and sensory,
[01:06:27.800]but also associated features like executive functioning,
[01:06:32.070]movement, emotional differences.
[01:06:33.960]And as we've talked about earlier,
[01:06:36.370]there can be other co-occurring conditions,
[01:06:41.470]both mental health and also physical health conditions.
[01:06:44.370]And it's important to understand
[01:06:45.820]what those are so that we can address them.
[01:06:49.210]All right.
[01:06:51.990]All right, so Kim.
[01:06:53.680]Well, we already said that.
[01:06:55.540]We did, didn't we?
[01:06:56.750]All right, is there anything more you wanna add here?
[01:06:59.130]No.
[01:06:59.963]All right, no problem.
[01:07:01.460]So the five levels of the Ziggurat,
[01:07:04.030]we're gonna talk
[01:07:04.910]about them in a little bit more depth today.
[01:07:07.400]But just wanted to highlight.
[01:07:08.650]We start from our foundation, that's the bottom
[01:07:11.200]and we work our way up.
[01:07:13.030]So there is a bit of a hierarchy here, skills to teach,
[01:07:15.920]we can't learn new skills if we don't support,
[01:07:20.110]if we don't have all those foundational pieces
[01:07:22.750]in place first, and so they're all critical.
[01:07:26.510]And we mentioned today,
[01:07:27.560]we're gonna focus on how we use Ziggurat
[01:07:30.890]in a little different way.
[01:07:33.130]And so here, we're using it to,
[01:07:35.970]for the mental health practitioner or other practitioners,
[01:07:39.580]to modify our thing therapies.
[01:07:41.147]And so we like to say that those levels
[01:07:43.170]that we think in levels.
[01:07:44.870]And so again, for our school age population,
[01:07:47.500]we apply it in very,
[01:07:52.230]it's a wonderful tool that we can use to develop strategies
[01:07:55.840]and supports for that setting
[01:07:57.570]but we can also use it in other ways.
[01:07:59.990]Mental health practitioners and other practitioners,
[01:08:02.330]starting at the sensory biological level.
[01:08:04.960]Is my client anxious or uncomfortable?
[01:08:07.060]Is his body dysregulated?
[01:08:09.490]What can we do to adapt our therapy environment?
[01:08:12.770]What can we do to help support the individual
[01:08:15.940]so that they can be regulated?
[01:08:18.210]Reinforcement are positives for progress in place.
[01:08:22.480]And sometimes that may be, praise,
[01:08:24.780]and sometimes it may be some clients
[01:08:27.430]will after the session they'll get Starbucks, right?
[01:08:31.010]Or go get a milkshake,
[01:08:32.210]something that they're doing something hard,
[01:08:34.430]and they should kind of reinforce themselves.
[01:08:36.840]Structure and visual, tactile supports.
[01:08:39.541]This is world predictable.
[01:08:40.374]What does he need to see?
[01:08:41.480]We incorporate visuals in our counseling,
[01:08:44.390]in our support all the time.
[01:08:47.541]I've told Ruth,
[01:08:48.509]I said, you know, people ask me all the time,
[01:08:49.342]what's the best,
[01:08:50.710]how do you help people in the spectrum?
[01:08:52.270]What's the best tool I can buy?
[01:08:54.210]And I'll tell them tool you could buy if you're listening,
[01:08:58.110]go to an office supply store and buy blank paper.
[01:09:02.350]Really, blank paper?
[01:09:03.760]That's the best tool.
[01:09:05.260]'Cause what are we doing with that tool?
[01:09:08.040]Visual, visual, visual.
[01:09:10.420]We're drawing pictures.
[01:09:11.750]We're creating graphs.
[01:09:13.030]We're doing cartooning.
[01:09:14.310]We're writing scripts.
[01:09:15.920]We're writing everything.
[01:09:17.300]I want it visual, I want it structured.
[01:09:20.040]Visuals can create routines.
[01:09:22.660]We'll use visuals to structure the session.
[01:09:26.470]So they'll see...
[01:09:27.725]My gosh!
[01:09:28.558]I do so many charts with my clients.
[01:09:29.708]It's just.
[01:09:32.133]Yeah.
[01:09:32.990]Blank paper.
[01:09:34.450]That's right.
[01:09:35.340]Person walks into my office, first thing I do,
[01:09:37.210]grab my blank paper, let's go sit down and talk.
[01:09:39.710]And guess what?
[01:09:40.980]We use it for telehealth, instead of blank paper,
[01:09:43.440]what do I do?
[01:09:44.273]I have electronic paper, it's called PowerPoint.
[01:09:47.200]And so I'll share my screen.
[01:09:49.530]And so we will create the PowerPoints together.
[01:09:52.858]And then after the session I can share them.
[01:09:55.090]All right, task demands.
[01:09:56.570]Is he in over his head?
[01:09:57.800]What obstacles need to be removed?
[01:10:00.200]And you can imagine there may be obstacles like again,
[01:10:02.870]fluorescent lights or other obstacles like communication.
[01:10:06.990]Maybe we need visuals to assist in that.
[01:10:09.330]We're gonna talk about that in more depth.
[01:10:11.820]Skills to teach.
[01:10:12.660]What does he need to know?
[01:10:14.730]And so these are for the practitioner,
[01:10:17.060]how we might adapt what we're doing
[01:10:19.520]to address the needs and build on strengths
[01:10:22.870]for someone on the spectrum.
[01:10:24.760]Well, we can also teach our clients to think in levels.
[01:10:29.620]And so this parallels on the sensory level.
[01:10:33.655]Am I anxious or am I uncomfortable?
[01:10:34.890]Is my body dysregulated?
[01:10:36.400]What am I working for?
[01:10:38.080]Is my world predictable?
[01:10:39.320]And so on.
[01:10:40.520]So we teach people to think in levels.
[01:10:42.300]And by the way,
[01:10:43.133]this is a wonderful strategy for self-help, right?
[01:10:47.170]Because now I can prepare myself for,
[01:10:52.810]family coming in town this weekend.
[01:10:54.630]Or I can prepare myself for going to school
[01:10:57.670]or whatever it may be going into the work setting.
[01:11:00.340]What can I do to prepare myself for it?
[01:11:03.320]What can I do during my Workday?
[01:11:05.810]Thinking in levels.
[01:11:07.777]And even after the Workday,
[01:11:08.640]how can I plan a nice planned recovery after the work day?
[01:11:15.330]And so Kim's going to give us a real quick example
[01:11:19.310]of kind of putting this together and then.
[01:11:21.410]Well, I can give an example.
[01:11:23.050]We don't have to do the next slide.
[01:11:24.410]I can give an example of today of doing the webinar.
[01:11:28.070]That's perfect.
[01:11:30.130]So if I'm going through the questions, sensory wise,
[01:11:34.300]I need to be regulated and I know that.
[01:11:38.155]I need to be regulated while I'm talking to you guys,
[01:11:39.930]but also beforehand.
[01:11:41.780]So right now I'm on the treadmill.
[01:11:45.270]And also I have my TheraPutty at my headphones.
[01:11:48.850]Before I needed to do some regulation,
[01:11:54.650]sensory regulation by jumping on my trampoline.
[01:11:58.130]That was,
[01:12:01.949]a little bit harder to do
[01:12:03.120]because my parents did come outta town,
[01:12:05.400]which disrupted my routine.
[01:12:07.430]So the task demand, I'm gonna jump around a little,
[01:12:12.020]the task demands of me regulating myself in the morning,
[01:12:17.420]I had to think through that.
[01:12:19.970]And I texted, Barry and Ruth,
[01:12:23.380]because I needed a visual structure
[01:12:26.300]and prompting to help figure out what to do.
[01:12:32.680]The reinforcement is me being able
[01:12:36.700]to do this webinar.
[01:12:39.970]For me, reinforcement is usually accomplishment of a task.
[01:12:44.320]And it's important for me to be able
[01:12:47.250]to share my experiences and teach
[01:12:51.560]about how to better help those with autism.
[01:12:54.900]That's right.
[01:12:56.720]I love this example.
[01:12:58.540]I love, it's a real life example that was timely here
[01:13:02.230]and talking about today.
[01:13:04.930]We're gonna come back after lunch for part two.
[01:13:10.458]We wanted to just share this with anyone
[01:13:12.320]who may not be back with us in the afternoon.
[01:13:15.150]We have a discount on the Ziggurat materials.
[01:13:18.070]So, use the code, Nebraska 20,
[01:13:19.840]I think y'all can remember that.
[01:13:21.410]And we will see you this afternoon after lunch.
[01:13:26.540]Yeah, part two.
[01:13:28.477]Part two, we're going a little bit more in depth
[01:13:31.550]and looking at each of the levels separately.
[01:13:35.740]Right, see you a little bit.
[01:13:37.730]Thank you, we'll see you in one hour.
[01:13:41.408]We'll be in the same room at 12:45, in one hour.
[01:13:44.320]Go enjoy your lunch
[01:13:46.210]and we'll see you back in one hour, thank you.
[01:13:49.687]Thank you all.
[01:13:50.758]Thank you.
[01:14:09.413]All right, so I guess we should.

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Improving Outcomes With the Ziggurat Model - Part 1

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