YT YouTube2Text

YouTube2Text → Transcripts → Which level of Autism do you ACTUALLY have?

Which level of Autism do you ACTUALLY have? — Transcript

by Kati Morton · 5,758 words · 1,000 segments · language en · Watch on YouTube

Open in transcriber Summarize with AI Download SRT/VTT

Full transcript

0:00If you've heard someone described as
0:01having level one, level two, or level
0:03three autism, those numbers probably
0:05sound pretty straightforward. Level one
0:07means less severe. Level three means
0:10more severe. And level two is somewhere
0:12in the middle, right?
0:14Not exactly. Those levels are supposed
0:17to describe how much support someone
0:18needs, not how autistic they are. And
0:22even that gets complicated because
0:24someone can actually be level one in one
0:26area and level two or three in another.
0:29So, I want to explain what each level
0:31actually means, [music]
0:32how clinicians decide which one to use,
0:35and why these three neat little
0:37categories can [music] get surprisingly
0:38messy in real life.
0:41Eight years ago, I made a video called
0:42what is high-functioning autism, and it
0:45was well received back then.
0:47But, I wouldn't use that phrase now.
0:49>> [music]
0:49>> The way we talk about autism has
0:51changed, and so has the diagnostic
0:52framework.
0:54And I'm also going to correct two things
0:55from that old video because I went back
0:57and watched it. Cringey. Don't do it.
0:59Don't recommend it. But, there's one
1:01claim that I think I like in particular
1:03that I overstated. Understanding why the
1:05term high-functioning became a problem
1:08helps explain what the support levels
1:10were trying to do differently. In my
1:122018 video, I told you that
1:14high-functioning autism was never an
1:16official diagnosis, which was accurate.
1:18It wasn't a diagnosis in the DSM, which
1:20I have right here if you noticed.
1:22Instead, it became shorthand for
1:24autistic people who might speak
1:26fluently, do well academically, have
1:29average or above-average intelligence,
1:31or appear relatively independent.
1:34And that's where things get messy
1:36because being intellectually capable
1:38doesn't necessarily tell us how well
1:40someone can function in everyday life.
1:43Researchers have actually measured this.
1:45Let me pull up my research. They've
1:47actually measured measured this. That in
1:48one large study of more than 2,000
1:51autistic children and adolescents,
1:53researchers compared IQ with what is
1:56called adaptive functioning.
1:59Like everyday skills like communicating
2:01your needs, taking care of yourself,
2:03managing responsibilities, or navigating
2:05daily life.
2:07And some of the biggest gaps showed up
2:10in autistic kids without intellectual
2:12disability.
2:14In other words, like someone could test
2:16really well, okay? They did great
2:18cognitively and still struggle
2:20significantly with everyday functioning.
2:23Other research has found that this
2:25mismatch between IQ and adaptive
2:27functioning can persist and in some
2:29groups become more pronounced as
2:32autistic people get older. And you can
2:34imagine what that looks like in real
2:36life, right? Someone can explain the
2:38French Revolution to you in incredible
2:40detail
2:41and be unable to make a phone call to
2:43reschedule a dentist appointment, for
2:45example. It's like someone can carry a
2:463.9 GPA and struggle to feed themselves
2:49reliably during finals.
2:51Someone can have a successful career and
2:54then come home completely depleted
2:55because navigating that work day
2:57required an enormous amount of, you
3:00know, like that internal invisible
3:01effort.
3:03Those things
3:04can coexist. And that's one of the
3:06biggest problems with calling someone
3:08high-functioning. It takes a
3:10complicated, uneven set of abilities and
3:13support needs and then turns them into
3:15like one overall judgment, this person
3:17functions well.
3:19And that can make real support needs
3:20invisible. And autistic people have been
3:22pointing out the other side of this,
3:24too. How calling someone low-functioning
3:27can reduce expectations and obscure the
3:29abilities that they do have.
3:32So, these broad labels can fail in both
3:34directions. Like high-functioning can
3:36suggest that you don't need help, while
3:38low-functioning can suggest that you
3:40aren't capable.
3:41Neither tells us what we actually need
3:43to know, which is what does this
3:45particular person need help with?
3:48And that is what the autism support
3:50levels were designed to describe. So,
3:53let's get into them.
3:55In 2013, the DSM-5, which is what I have
3:58here, brought several older diagnoses
4:01including Asperger's disorder and
4:03pervasive developmental disorder not
4:05otherwise specified or for short
4:07PDD-NOS, cuz that's easier, right?
4:10They brought all of this under one
4:11diagnosis and they called it autism
4:14spectrum disorder.
4:16And with that came three severity
4:18levels. Level one,
4:21requiring support.
4:23Level two,
4:24requiring substantial support and level
4:27three, requiring very substantial
4:30support.
4:32Notice something about those
4:33descriptions?
4:34Every single level assumes that support
4:38is needed.
4:39Level one doesn't mean mild autism. It
4:42doesn't mean, "Oh, they're basically
4:43fine."
4:44And it definitely doesn't mean this
4:46person doesn't need help.
4:48It means requiring support.
4:51The important thing to note here, and
4:53honestly what I see people miss when
4:54talking about this, is that technically
4:57you aren't supposed to get just one
4:59autism level. Let that sink in. How many
5:03of you or people you've heard just
5:04talking about they are blank level
5:06autism?
5:07You're not supposed to just get one.
5:09It's possible. I'll explain, okay? So,
5:12the DSM, what it does is it asks
5:14clinicians such as myself
5:16to rate severity separately.
5:18Okay, so we're going to give these three
5:20levels separately in two core domains of
5:22autism. The first domain is what they
5:26call, let me double check here, they
5:28call it uh social communication.
5:31Now, the second domain is restricted and
5:33repetitive behaviors, which includes
5:36things like difficulty with change or
5:38those repetitive behaviors we think like
5:40stimming. There's highly focused
5:42interests and other patterns that we'll
5:43talk about as we get through this. But,
5:46what that means is that someone might be
5:48level one for social communication.
5:50Maybe they don't have any problem with
5:52communicating. They're very verbal.
5:55And they can be level two for restricted
5:57and repetitive behaviors.
5:59And even just thinking about that, like
6:01that tells us a lot more, right? Maybe
6:04this person communicates well enough
6:06that other people don't immediately
6:08notice that they're struggling or think
6:10anything differently.
6:12They can have a conversation, you know,
6:13maintain eye contact somewhat or have
6:16good relationships, go to school, go to
6:17work. Everything's fine.
6:20However, changes in routine
6:23incredibly difficult. Like unexpected
6:25transitions can derail their entire day.
6:28Their sensory needs or repetitive
6:30behaviors may interfere significantly
6:32with daily life.
6:34If we take all of that and simply say,
6:36"Ah,
6:37that person's level one autistic."
6:40We're ignoring a huge and vital piece of
6:42information.
6:43And ironically, that missing piece may
6:45be the one that explains why someone who
6:47appears to be doing so well can still
6:49have days when functioning becomes
6:51incredibly difficult.
6:53So, anytime you see one number attached
6:55to an autistic person, just remember the
6:57actual picture is more complicated than
7:00that number makes it look.
7:02So, if level one doesn't mean high
7:04functioning, what does it actually look
7:06like? Now, first, I'm just checking my
7:08notes here. First, a caveat that belongs
7:10at like the front of all three of these
7:12levels, like before we get into it, is
7:14that autistic people vary enormously,
7:16right? People are Everybody's different.
7:18And so, knowing someone's level doesn't
7:20tell you their personality, their
7:22intelligence, their strengths, their
7:24interests, or what their life is going
7:25to look like. It really just tells us
7:28where and how significantly autism is
7:31affecting functioning
7:33and support needs.
7:35So, in their social communication
7:36portion, someone at level one can
7:38typically speak in full sentences and
7:40engage in conversation. But, the It's
7:43like the natural back and forth of
7:44conversation may be difficult for them
7:46to navigate.
7:47The timing might feel slightly off or
7:50starting and maintaining an interaction
7:52can be difficult.
7:54Attempts to make friends may not work
7:57despite their genuine effort and genuine
7:59desire for connection.
8:01And without support, these social
8:02communication differences can cause
8:04noticeable impairment.
8:06In the restricted and repetitive
8:08behavior domain, level one can mean
8:10inflexibility that significantly
8:12interferes with functioning in at least
8:14one setting. And these settings are
8:16usually like, you know, work or school,
8:17at home, with friends, right? Think of
8:19the different settings in your life. So,
8:21it's going to interfere in at least one
8:23of those.
8:24So, switching between activities can be
8:26difficult. Unexpected changes can be
8:29especially disruptive. Problems with
8:31organization and planning can interfere
8:33with their independence.
8:35What we can miss when we only look at
8:37the clinical description is how much
8:39work someone may be doing just to get
8:41through their day. We've talked about
8:42this in other videos a lot, kind of like
8:43the invisible workload. It's like think
8:45about a kid who does well academically,
8:47okay?
8:48They're at school, they're doing well,
8:49the teachers describe them as, you know,
8:50quiet or quirky, and they hold it
8:53together for 7 hours at school or
8:55however long they're at school.
8:57Only to completely fall apart in the car
9:00or the minute the front door closes and
9:01they're home. So, everyone at school
9:03sees a kid who's managing just fine.
9:05Their family sees how much it took out
9:07of them once they get home.
9:09Or think about an adult who appears
9:11completely competent at work, doing a
9:13great job, you know, getting promotions,
9:15but is privately putting in an enormous
9:18amount of effort into appearing that
9:20way. Like they could rehearse
9:21conversations before a meeting, script
9:23what they're going to say, or monitor
9:25other people's reactions throughout it.
9:28Then need significant time alone
9:30afterward to recover.
9:32And that's often called masking or
9:33camouflaging, and not every autistic
9:35person does it.
9:36But when someone does, it can make their
9:38support needs much harder for other
9:40people to see cuz it's like we appear
9:42fine, right? And this is one reason that
9:45our support needs can become much more
9:47obvious
9:48as the demands of our environment
9:50increase.
9:51Junior high, when I was reading about
9:53this, I found this kind of fascinating,
9:54but it also makes sense cuz junior high
9:55is a tough time for all of us, but
9:57especially those of us with ASD, okay?
10:01It's a great example. I want to talk
10:02about junior high because during these
10:05years
10:06social rules suddenly become more
10:09complex. Like, friend groups get more
10:12complicated.
10:13And it was funny to think about it. I
10:14was like, "Yeah, you're right." Like,
10:16communication becomes more subtle. There
10:18are more like transitions, more
10:20independence is expected. You move
10:22classes. I remember before we would stay
10:24in one class all day, but when you get
10:26to middle school, at least in my
10:27experience, we move classes every time
10:30the bell rings. So, there's so many more
10:32transitions, and then you're supposed to
10:33be more independent. No one's like
10:35hand-holding you for your homework and
10:37things like that. They're like, you're
10:38just expected to pick it up.
10:40And you're also supposed to understand
10:42rules that nobody actually explains to
10:44you.
10:45Like, social rules, things that are
10:47happening. People have a crush on
10:48someone. Things are shifting, and nobody
10:50talks about it usually explicitly. And
10:53so, a kid who seems to manage elementary
10:55school
10:56may begin struggling around 12 or 13.
10:59Now,
11:00this kid didn't suddenly become more
11:02autistic.
11:03The environment changed. And when these
11:05support needs aren't recognized, the
11:07long-term cost can be significant. Like,
11:09autistic people have elevated rates of
11:11anxiety and depression, and many of you
11:13have told me just how exhausted and
11:14burnt out you are.
11:16And when these struggles go unnoticed,
11:18kids often come up with their own
11:20explanation for them. Instead of
11:22understanding that their brain works
11:23differently and they may need more
11:24support, they assume that they're doing
11:26something wrong.
11:27>> [music]
11:28>> One thing I've realized is that I don't
11:30actually want to spend more time
11:31thinking about money. I just want to
11:33feel like I know what's going on with
11:35it, you know? And that's what I really
11:36like about Monarch. It connects all of
11:39our accounts, credit cards, investments,
11:40everything. So, instead of opening five
11:42different apps and trying to piece
11:44together the bigger picture, I can see
11:45it all right here.
11:48And one of my favorite things is that it
11:49immediately, so I signed up for Monarch
11:51and it immediately showed me all the
11:52subscriptions we were being charged for.
11:54There were things that I had completely
11:56forgotten about and being able to see
11:57them all in one place made it really
11:59easy to figure out what we actually use
12:01and then cancel what we don't and we've
12:03already saved, you guys, like over $40 a
12:04month just from doing that.
12:06I can also quickly see our spending, net
12:09worth, and goals. And Shawn and I can
12:11share the same view, so we're both
12:12working from the same financial picture.
12:15Thank you to Monarch for partnering with
12:17me. You can start your free trial and
12:19get 50% off your first year of Monarch
12:21Core using my link on the screen or code
12:23KM50. It's just made knowing what's
12:26happening with our money so much
12:27simpler.
12:30Level two means requiring substantial
12:33support. And I think it's especially
12:34important here that we don't confuse
12:36needing more support with being less
12:38intelligent or less capable.
12:40Those are not the same things.
12:42In the social communication portion, the
12:43differences are more noticeable, even
12:45when the person already has support in
12:47place.
12:48For example, someone may speak in
12:50shorter, simpler sentences. Now,
12:52obviously, that's not true for everyone
12:53at level two, it's just an example.
12:56Some people are very verbal.
12:58The difficulty is more about using
13:01communication socially and going back
13:03and forth with another person. And that
13:05was interesting for me to hear because I
13:06thought it was just communication
13:08purely. You guys know I do not
13:09specialize in the treatment of autism.
13:11So, this was fascinating to me because
13:12it was less about actual communication
13:15and more about this ability to go back
13:17and forth. And the examples that they
13:19gave, let me check, wrong page here,
13:20hold on. Um, is that we may have a
13:24harder their initiating conversations,
13:28responding to other people,
13:30or [snorts] shifting a conversation away
13:32from something that we're especially
13:34interested in. And these differences are
13:36noticeable enough that they affect our
13:37everyday interactions.
13:40In the restricted and repetitive
13:41behavior portion, difficulty with change
13:43and switching between activities becomes
13:45more obvious and it interferes with
13:47functioning in multiple settings.
13:49Remember at level one, it was one
13:50setting. This is multiple settings. So,
13:53like a change in plans can cause cause
13:55significant distress. Moving from one
13:57task to another
13:59can be really difficult.
14:01Repetitive behaviors may be more
14:02noticeable to other people and adapting
14:05when something doesn't go according to
14:06plan can require a lot of support.
14:09And this is where I want to come back to
14:11something that we talked about earlier,
14:12that intelligence doesn't tell us how
14:14much support someone needs.
14:16You could have someone who's incredibly
14:18bright and articulate.
14:20They can talk to you for an hour about
14:22something they're interested in and
14:23clearly know a lot about it.
14:26But living independently requires dozens
14:29of other skills like
14:31remembering medication, planning meals,
14:34grocery shopping, making appointments,
14:35filling out forms, getting into those
14:36appointments, keeping up with the
14:38laundry, paying the bills, managing a
14:39schedule, and being able to adjust when
14:42any part of that schedule changes.
14:44Someone may be completely capable of
14:46doing things well in a college class,
14:48but really struggle to manage their full
14:50schedule, like their apartment or their
14:52meals, their laundry, their
14:53appointments, and everything else at the
14:55same time.
14:56And that's the gap we talk about that we
14:58talked about earlier between what
15:00someone is capable of intellectually and
15:03what they're able to manage in their
15:04everyday life.
15:06And with level two, support is usually
15:08going to be more substantial. That could
15:10include help with planning and
15:12organizing. You could get like an
15:13occupational therapist or have visual
15:15schedules around. Preparing ahead of
15:18time for changes. I talked about that in
15:19our last video, like setting an alarm on
15:21your phone. You might need support with
15:23communication as well or help with daily
15:25living skills. And again, those supports
15:28are not evidence that someone isn't
15:29capable.
15:31They're what can allow that person to
15:33use the abilities that they already
15:34have.
15:36Level three means requiring very
15:38substantial support. And I want to spend
15:39a little more time on this one because
15:41this is where we can easily make
15:42assumptions about what someone
15:43understands, what they're capable of,
15:45and what their life can look like based
15:47only on what we see from the outside.
15:50In the social communication portion,
15:52there are severe difficulties with
15:54verbal and non-verbal social
15:56communication. Someone may use only a
15:58few spoken words or they may not use
16:00spoken language at all.
16:02They may rarely initiate interactions
16:04with other people and they may respond
16:06only to very direct attempts to engage
16:09with them.
16:10But it's important to note that how much
16:11someone speaks
16:13does not tell us how much they
16:15understand. That's a really important
16:17distinction. Some autistic people at
16:19level three also have an intellectual
16:21disability and some don't. Some
16:24understand much more language than
16:25they're able to express verbally.
16:28And for people who don't use speech or
16:30who use very little of it, communication
16:32can happen in other ways. I actually I'd
16:35read about this in uh the Telepathy
16:37Tapes, if you haven't listened to that
16:38podcast, highly recommend. But this was
16:40interesting for me to read about because
16:42they can include things like
16:44augmentative and uh alternative
16:46communication devices or like Hold on,
16:49one sec. I can hear it says Oh, the AAC
16:51devices. And these like
16:54really help people communicate. They can
16:55also use picture-based communication
16:57systems, something I learned, it was
16:59new. Sign language, gestures, or even
17:01other forms of communication. People can
17:03get really creative. It's kind of cool.
17:05So we should never assume that just
17:07because someone isn't speaking that they
17:09don't understand us, don't have
17:11preferences, or don't have anything to
17:13communicate. In the restricted and
17:15repetitive behavior portion, level three
17:17means that these differences interfere
17:19significantly with function functioning
17:21across many parts of their life, right?
17:23Level one it was like one area, level
17:25two was multiples, and this is many,
17:28okay?
17:29Changes can be extremely dysregulating
17:32and really difficult. Moving from one
17:34activity to another can cause someone
17:36with a level three autism significant
17:39distress.
17:40Repetitive behaviors can be really
17:41difficult to interrupt or redirect, and
17:44someone may need another person to help
17:45them navigate these situations
17:47throughout their day.
17:48And this is also where I think the word
17:50support can sound
17:53almost it's like simplified, like it's
17:55it's it's simpler than what we're
17:56actually talking about because for some
17:58people at level three, support may mean
18:02help with all communication, with
18:04eating, with dressing, with hygiene, and
18:06other basic daily activities. There may
18:08be significant sensory needs. Some
18:10people may need closer revision because
18:13of safety concerns, like wandering or
18:15not recognizing danger.
18:17And for some people, that support is
18:19needed throughout the day and into the
18:20night. So, when the DSM says requiring
18:23very substantial support, we're talking
18:25about people whose disabilities can have
18:27a significant impact on their everyday
18:29lives.
18:30But level three still doesn't tell us
18:32everything about that person. Doesn't
18:34tell us what they understand. It doesn't
18:36tell us what they enjoy. It doesn't tell
18:38us what skills they may develop. And it
18:40doesn't tell us what their life will
18:42look like in 5, 10, or even 20 years
18:44from now.
18:46Support needs can change. People learn
18:48new skills. Someone may gain access to a
18:51communication system that works better
18:52for them. And the right environment and
18:54the right support can make an enormous
18:57difference in what someone is able to
18:58do.
18:59And if you're a parent or caregiver for
19:01someone who needs this level of support,
19:02I also don't want to gloss over what
19:05that can require from you. Like
19:06coordinating all their therapies,
19:08medical care, school services,
19:09communication support, safety, respite
19:11care, and eventually adult services.
19:14It can become this enormous job in and
19:17of itself. I went down a Reddit rabbit
19:18hole
19:19and the conversations were really
19:20intense. There can be a lot that's being
19:22asked of you, and many families simply
19:25aren't given enough help to do that. So,
19:27if you're exhausted, I just
19:28I just wanted to bring it up cuz it
19:29doesn't mean you're doing anything
19:30wrong, okay? It could mean that you're
19:32being asked to provide a level of care
19:35that
19:36I don't know, one person or one family
19:37alone
19:39isn't supposed to have to deal with. You
19:41know, it's almost like we're asking more
19:43of families and more of their caregivers
19:47than is really reasonable.
19:50So, how does a clinician actually decide
19:52whether someone is level one, level two,
19:54or level three?
19:56Ideally, that level comes out of a
19:58comprehensive autism evaluation.
20:01That can include someone's developmental
20:02history, direct observation,
20:05standardized assessments, information
20:07from parents, teachers, partners, or
20:08other people who know them well, and an
20:11assessment of adaptive functioning,
20:13meaning how they're managing everyday
20:15life, the things that we do that like
20:17that invisible workload that I talked
20:19about.
20:20The clinician's going to take all that
20:22information. Yes, that's a lot. It can
20:24take some time. They're going to take it
20:25all in, and then they're going to
20:26determine the severity level for each of
20:29those two domains that we've been
20:31talking about.
20:32But, unfortunately, there's a problem,
20:34okay? When the DSM introduced these
20:37levels, it didn't give clinicians a
20:40standardized test or simple formula for
20:42deciding exactly where level one ends
20:45and level two begins or where level two
20:47becomes level three.
20:48That would be really helpful. They
20:49didn't do it.
20:51And the research that I read, it
20:52actually suggests that the levels aren't
20:54always documented consistently. Like one
20:56study looked at records for autistic
20:58kids across like multiple sites in I
21:00think it was around the US only, but
21:03across multiple sites in the US.
21:05And only around Hold on one second, let
21:07me pull it. Only around 40% had a
21:09severity level documented at all.
21:13Less than half.
21:14And that varied dramatically depending
21:16on the site. Some sites I think it was
21:18fewer than like 5% of children
21:21had a level documented, but at others it
21:23was more than 70%. So, yay, you know, I
21:26guess. There were also records where
21:29different severity levels had been
21:31documented for the same domain during a
21:34single evaluation. Do you hear what I'm
21:36saying there? That different severity
21:38levels had been documented. So, they're
21:40given
21:41different levels for the same domain
21:44during a single evaluation. Like,
21:47what?
21:48How does How's that happen?
21:50So, I think it's important to understand
21:51that these numbers can be useful, but
21:53they're not as precise as they look.
21:56A level is a clinician's assessment.
21:58It's like my interpretation, right? Of
22:00the severity of someone's autism
22:02symptoms and associated support needs
22:04based on the information available at
22:06that point in their life.
22:08And those support needs can look
22:09different depending on the environment.
22:11Like, someone may function very
22:12differently at home than they do at
22:14school. They may need more support
22:16during a major transition than they did
22:17six months earlier.
22:19And as someone develops new skills or
22:21their environment changes, their level
22:23may need to be reassessed, too.
22:25That's why I wouldn't think of level
22:27one, two, or three as a permanent
22:28description of how we're functioning.
22:31It's more that the levels can help
22:32clinicians, such as myself, communicate
22:35about severity and support needs. And
22:38those that communication may help inform
22:40treatment, accommodations, services, or
22:43support planning.
22:44But, they're not very good at telling
22:46you who a person is. They don't tell you
22:48someone's intelligence or personality,
22:50their strengths, their interests, or
22:51their potential. And as we've already
22:53seen, even one number can leave out the
22:56fact that someone's support needs may be
22:58very different across the two domains.
23:01And one more thing because I know this
23:03question is going to come up.
23:05Can you assign yourself an autism level?
23:08Technically, these levels are clinician
23:11specifiers. They're assigned as part of
23:13a professional assessment. So, you can't
23:15technically diagnose yourself as having
23:17level one, two, or three.
23:18That doesn't mean someone can't
23:20recognize their own support needs. Who
23:23would know that better than you, right?
23:25There are autistic adults who
23:27self-identify as autistic for many
23:29reasons, including the cost of
23:31assessment, difficulty finding someone
23:33who evaluates adults, or previous
23:36experiences of having their concerns
23:37dismissed. I've heard that from a lot of
23:39you.
23:40So, whether or not you have a level
23:41attached to your diagnosis, you can
23:43still recognize where you're struggling,
23:45what makes your functioning harder, and
23:47what kinds of support make things
23:49easier.
23:50Before we wrap up, I promised you I'd go
23:52back to that old video, Chris, super
23:53cringe, from 2018 and correct a few
23:55things, okay? And there are actually
23:57three that stood out to me.
23:58First,
24:00I talked about serotonin.
24:02This one was hard to watch. I was like,
24:03"Oh, Kate, why are you saying that?" In
24:05that video, I talked about how OCD and
24:07autism commonly occur together, which is
24:10true.
24:11And then I mentioned research involving
24:12serotonin.
24:14But, when I said that, I took it one
24:17step further and I said that we could
24:18then conclude,
24:20I don't know why I said this, that all
24:22of the conditions that commonly occur
24:23alongside autism could be caused or
24:26affected by changes in serotonin.
24:28I shouldn't have said that. I took that
24:30one finding from one study with OCD and
24:33autism. It's very specific. And then I
24:34applied it to all sorts of things. And
24:36that's just more than the research
24:37supported. So, I just wanted to mention
24:39that because we do know, obviously, that
24:41conditions like anxiety, depression, and
24:43OCD occur at higher rates in the
24:45autistic community. But, why they occur
24:48together,
24:50I tried to look into it to give you guys
24:51like a better answer, but it's just
24:52really complicated. And there's still a
24:54lot that we don't understand.
24:57We definitely can't explain all of it
24:58with one neurotransmitter. It'd be
25:00awesome if we could, but we can't. So,
25:02if I were making that video today, I
25:03would just leave that part out entirely,
25:05cuz it's not it's not helpful. It's not
25:07true.
25:08Second thing,
25:10tantrums.
25:11Again, I was watching this and I'm like,
25:12"Oh." I described autistic people as
25:15being more prone to tantrums when
25:16they're overtired or overstimulated.
25:19Today, I I I'd just be more careful
25:22about the language, because what I was
25:24describing was really what in the
25:26research and in Reddit conversations
25:29is really described as a meltdown.
25:32A tantrum and a meltdown can look
25:34similar from the outside. Like, even if
25:36you're watching this, if you don't have
25:37autism, you might be like, "Those sound
25:38the same." But, what's happening inside
25:40the person going through it can be very
25:41different, okay? With a tantrum, there's
25:44often something that the person or child
25:47wants or is trying to communicate
25:49through their behavior. They're throwing
25:50a tantrum to get something, okay? A
25:52meltdown happens when someone becomes so
25:56overwhelmed that they're no longer able
25:58to regulate.
26:00And I feel like that difference matters,
26:02because our response, like
26:04the people on the outside, our response
26:06needs to be different, right? If
26:07someone's having a meltdown, because
26:09they're completely overwhelmed,
26:10reasoning with them, adding demands, or
26:12trying to discipline their behavior in
26:13that moment is not really going to help.
26:16The priority is reducing the
26:17stimulation, keeping them safe, maybe
26:19lowering demands, or giving their
26:21nervous system a little time to to
26:23settle.
26:24And third,
26:26ABA.
26:27I know, I can already hear you guys
26:29typing. But, in that old video, I
26:31acknowledged that some people find
26:33applied behavior analysis or ABA too
26:35intense or even traumatizing. But, then
26:38I followed that by saying that ABA had
26:40been shown to, {quote} "work miracles."
26:43Why, Katie? Why? I don't know.
26:45And that it shouldn't be ruled out.
26:48I wouldn't describe it that way today.
26:49Now, ABA is a much bigger and more
26:52complicated conversation than
26:54like I like I even made it sound in that
26:56video, okay? There is research showing
26:58benefits from some behavioral
27:00interventions for some autistic
27:02children.
27:03That's what the research shows. There is
27:05also serious criticisms of ABA,
27:08including concerns raised by autistic
27:10adults about experiences that they had
27:12when they were kids. And ABA itself has
27:15changed a ton over time. I was actually
27:17surprised. Again, I don't practice it,
27:19never have, never worked in a, you know,
27:22a clinic that offers it. So, it's
27:24changed a lot over time. So, what
27:26someone experienced 20 or 30 years ago
27:28may look very different from what
27:29another provider calls ABA today.
27:32There's a lot more to this conversation,
27:35and I just don't want to try to squeeze
27:36it into a few minutes at the end of this
27:37video about autism levels. I think ABA
27:40deserves a video of its own. So, if you
27:41want me to do a deep dive on that, let
27:42me know.
27:44Like maybe it's a topic that we cover on
27:45the podcast. I don't know. Let me know.
27:47But since I've spent all this time
27:48telling you what I'd change from that
27:50old video,
27:51there are also some things that I would
27:53still say today. Like some things I was
27:55like, "That's still true." Like, for
27:57example, autism isn't something someone
27:59simply grows out of. That might sound
28:02obvious to us, but I found people still
28:03talking about it online.
28:05People don't grow out of it, and an
28:07autistic person doesn't need to be
28:09cured.
28:10And one of the problems with labels like
28:12high-functioning is that someone can be
28:14struggling significantly and still have
28:16a very difficult time getting other
28:17people to believe they need support. And
28:19the last thing I said in that video was
28:21essentially this.
28:22Listen to the individual person before
28:25you make assumptions about what they can
28:27or cannot do.
28:29Eight years later, can't believe 2018
28:31was eight was eight years ago, but eight
28:32years later, I still think that that's
28:34the most important part.
28:37So, what do you actually do with all of
28:39this?
28:40Well, I have four things I want you to
28:41remember. First, ask about both numbers.
28:46If you're being evaluated or you already
28:48have an autism evaluation sitting in a
28:50drawer somewhere, look to see whether
28:52there are separate levels for social
28:54communication and restricted and
28:56repetitive behaviors. If there's only
28:58one level listed,
29:00you can ask the person who did the
29:01evaluation how they came to that number
29:04and whether the two areas were
29:05considered separately. Because it's
29:07possible that they were the same, so
29:09they just put one. Let's just ask.
29:11Second,
29:13don't stop at the number. Whether
29:15someone's level one, two, or three
29:17is much less useful than knowing exactly
29:20where they need support. Like, what
29:23situations are difficult? Are there
29:24sensory needs that need to be
29:25accommodated? Do they need help with
29:27planning, organizing, meals, hygiene,
29:29transportation, or appointments? What
29:31happens when plans suddenly change? What
29:33makes communication easier or harder for
29:35them?
29:36Those are the things that help you
29:37figure out what kind of support might
29:39actually make someone's life easier,
29:40okay?
29:42And third, pay attention to what it
29:44takes for someone to get through their
29:45day.
29:47If this is you, pay attention. What's it
29:49take for you to get through it? Like, I
29:50think this is especially important for
29:51those of us whose struggles aren't
29:53obvious to everyone else.
29:56It's like we could be getting through
29:57school or work successfully, but that
29:58doesn't necessarily mean that it's easy
30:00for us.
30:01And if we're completely exhausted
30:02afterward or feel regularly overwhelmed
30:05or maybe we need a lot of time to
30:07recover,
30:08that's something that we should pay
30:09attention to.
30:11Maybe we need fewer demands after
30:12school. Maybe we need breaks during our
30:14work day. Maybe we need more
30:16predictability in our schedule. The goal
30:18isn't to decide what we should be able
30:20to handle based on our level.
30:23It's to pay attention to what actually
30:24helps us function.
30:26And fourth,
30:27ask about reassessment when things
30:30change. I think this is really
30:32important, okay? Because autism doesn't
30:33disappear, right? It's how our brain
30:35works. Nothing wrong with us, we just
30:37have to work with, not against our
30:38brain. So, it's not going to go away,
30:40but our support needs can and most
30:42likely do change with time.
30:45If we have a major transition, we're
30:47burnt out, we're dealing with grief,
30:50maybe we're starting college, beginning
30:52a new job, or moving out of our family
30:54home, all of those changes can reveal
30:56support needs that weren't obvious
30:58before. And the opposite can happen,
31:00too, right? Like the right
31:01accommodations, a better environment,
31:03new communication skills, or simply
31:04getting older and learning more about
31:06yourself can change the amount or type
31:08of support that we need. So, if
31:10someone's functioning looks very
31:12different from when they were originally
31:13evaluated,
31:15it's reasonable and highly encouraged to
31:17talk to their clinician about whether
31:19their current support needs should be
31:21reassessed. Because a level assigned to
31:23us at 6 years old
31:25tells us what our presentation and
31:27support needs look like at 6 years old.
31:31Okay? And I think the biggest thing that
31:33I want you to take away from this video
31:34is that a level can give us useful
31:36information about someone's support
31:37needs, but it doesn't tell us everything
31:39about them.
31:40It doesn't tell us how intelligent
31:41someone is. It doesn't tell us what
31:43they're capable of. It doesn't tell us
31:45what they're interested in, what they're
31:46good at, or what their life is going to
31:48look like. And even when we know
31:49someone's level,
31:51we still have to ask, you know, where
31:53are you struggling most? What support do
31:55you need? What actually helps you?
31:58Because two people can both be level one
32:01and need very different things. And the
32:03same is true for level two and level
32:05three.
32:06And if you were given one of these
32:07levels and felt like it didn't fully
32:08describe your experience,
32:10that's understandable. It's not supposed
32:13to describe everything about you. It's
32:14just like one piece of a much bigger
32:17picture.
32:18I'd also really like to hear from
32:20autistic people and families who have
32:22experience with this.
32:23>> [music]
32:23>> If you have a level or your child does,
32:25let me know in the comments. What did
32:27the level get right about your support
32:28[music] needs and what did it miss? Let
32:30me know. Thank you so much for watching.
32:32Have a wonderful week, and I will see
32:33[music] you next time.

About this transcript

This page contains the full transcript of Which level of Autism do you ACTUALLY have? by Kati Morton, generated from the public captions YouTube serves with the video. The transcript has 5,758 words across 1,000 segments, with the original timestamps preserved so you can click any line to jump to that moment in the embedded player.

What you can do with it

Use the transcript to take notes, quote the speaker, build a study guide, generate a summary with ChatGPT or Claude via the YouTube Summary tool, or export it as a timed subtitle file with YouTube to SRT. You can also re-open it in the transcriber to choose a caption track available on the video.

Free YouTube transcript tool

YouTube2Text is a free YouTube transcript generator — no signup, no daily limit. Paste any YouTube link and get the full transcript instantly, with timestamps, click-to-jump, caption language selection, AI prompts for ChatGPT, Claude, and Gemini, and exports to TXT, SRT, VTT, or Markdown.