Early Identification of Autism in Girls

Susan Hepburn, PhD Author

06/21/2021 Added

207 Plays

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There is substantial research to draw from regarding early signs of ASD, particularly in boys. Some of the behavioral markers of ASD that we are trained to look for in young children may not be apparent in young girls who later receive a diagnosis of ASD. We need to consider a broader set of markers when evaluating a young girl for possible ASD.

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[00:00:13.640]Hello everyone.
[00:00:15.260]My name is Susan Hepburn
[00:00:16.890]and I'm really pleased to be here today
[00:00:18.810]to talk with you about
[00:00:20.290]early signs of autism spectrum disorder in young girls.
[00:00:24.550]I'm currently a professor at Colorado State University
[00:00:27.370]in the Department of Human Development and Family Studies,
[00:00:30.410]where we are trying to launch several projects
[00:00:32.710]looking at improving autism identification
[00:00:35.070]across the lifespan.
[00:00:36.970]I'm quite interested in understanding how people
[00:00:41.190]with the same overall constellation of difficulties
[00:00:44.250]that characterize autism, problems in social communication
[00:00:48.250]and range of interests and overall flexibility.
[00:00:51.170]How individuals with that common profile
[00:00:53.600]can also present so very differently.
[00:00:56.340]And many of us have been developing some working models
[00:01:00.950]of the kinds of ways to take into account
[00:01:03.920]some of these differences.
[00:01:05.260]And as I hope to discuss today
[00:01:07.350]we're seeing some really important advances
[00:01:10.690]in the field of understanding symptom progression over time
[00:01:14.680]that I hope will be helpful
[00:01:16.300]in improving our identification efforts.
[00:01:20.240]So for today, I am hoping to do a very brief overview
[00:01:24.470]of the markers of ASD in young children.
[00:01:27.000]I recognize that our audience is highly skilled
[00:01:29.700]and you are probably very familiar with a lot of these.
[00:01:32.940]I'm going to spend more of my time
[00:01:34.810]looking at the symptom pattern differences
[00:01:37.660]that we are learning about from the research
[00:01:39.700]in boys and girls particularly during the toddler
[00:01:42.910]and early childhood periods.
[00:01:44.900]Then my hope is to share with you a handful of strategies
[00:01:49.510]that have impacted my personal practice
[00:01:52.560]and that I hope you will find useful
[00:01:54.790]to consider for your practice.
[00:01:56.690]These strategies are not based in empirical evidence.
[00:02:00.160]I have not studied them explicitly
[00:02:02.410]to determine that they are the so-called right way to go
[00:02:05.680]but I wanna share them as things to consider
[00:02:07.770]in your clinical practice.
[00:02:11.260]So there is substantial research out there to draw from
[00:02:14.980]regarding what the early childhood profile
[00:02:18.860]of ASD looks like.
[00:02:20.910]However, we're also learning that some of the things
[00:02:23.810]that we are trained to look for that signal risk for autism
[00:02:27.810]in young children may not be as evident in young girls
[00:02:32.910]as they are in young boys.
[00:02:35.000]So I'd like to propose that as a field
[00:02:37.720]we need to consider a broader set of markers
[00:02:40.470]when we're evaluating a young girl
[00:02:42.280]for possible autism spectrum disorder.
[00:02:44.570]And in a topic that probably goes too far
[00:02:47.660]beyond the time we have today.
[00:02:49.730]There are also some very interesting insights
[00:02:52.720]that could be gleaned from watching the development of girls
[00:02:56.470]on the spectrum over time, particularly in comparison
[00:02:59.520]to the development of autism symptoms in boys over time.
[00:03:03.390]By understanding those complex developmental trajectories
[00:03:07.890]we may begin to learn more about the actual nature
[00:03:11.470]of autism itself and what we need to do
[00:03:14.510]to help different children at different times.
[00:03:18.020]Now, as I mentioned, I'm trained as a child
[00:03:20.540]clinical psychologist, and most of my work
[00:03:23.190]prior to coming to CSU was at JFK Partners
[00:03:26.160]at the School of Medicine at UC Denver.
[00:03:28.500]So I have worked primarily in a research
[00:03:30.460]and a clinical context, but I've also been really fortunate
[00:03:33.760]over the past 20 plus years
[00:03:36.100]to do ongoing school consultation work,
[00:03:38.980]particularly in Littleton Public Schools
[00:03:40.900]and a few other districts where I've been actively engaged
[00:03:43.840]with educational identification teams.
[00:03:45.830]And we've really tried to wrestle
[00:03:47.750]with some of the best ways to talk about autism symptoms
[00:03:51.660]as they present in students in school
[00:03:53.670]and to also try to generate good protocols
[00:03:57.200]and solid ways of communicating with our colleagues
[00:04:00.000]and with families.
[00:04:01.210]When we begin to see some of the behaviors
[00:04:03.660]that could signal that an evaluation for educational
[00:04:08.760]identification could be important.
[00:04:11.360]So I do wanna remember that what I'm talking about today
[00:04:14.850]while somewhat clinical is going to be couched
[00:04:17.800]in the educational identification of ASD.
[00:04:21.710]So I recognize that as a clinical psychologist,
[00:04:25.140]what I do in a clinical of ALS is going to differ
[00:04:27.860]from what educational teams are doing
[00:04:29.780]in their educational identification of ALS.
[00:04:31.910]But I think both processes can really inform the other.
[00:04:35.840]So for today, I'm gonna review some of the research
[00:04:38.570]on sex differences in our ability
[00:04:40.740]to identify people with ASD.
[00:04:43.720]Talk briefly about those early markers,
[00:04:46.050]talk to you about different symptom profiles
[00:04:48.060]and males and females across development
[00:04:50.030]at least what the research is telling us
[00:04:51.880]and then discuss
[00:04:53.190]I guess we have nine implications for practice
[00:04:55.680]when evaluating.
[00:04:57.020]I do need to let you know
[00:04:58.060]that I kind of went down the rabbit hole
[00:04:59.850]in researching this topic
[00:05:01.360]and I am grateful to the help of a very talented
[00:05:05.520]recent graduate from Colorado State University
[00:05:08.240]Kendal Nolan, who is a self advocate
[00:05:11.230]and working in the developmental disabilities community
[00:05:13.990]in Northern Colorado.
[00:05:15.550]We'll hear from Kendal toward the end of this talk
[00:05:18.940]as her commitment to improving identification
[00:05:22.100]and support for females on the spectrum
[00:05:24.230]has really been important
[00:05:26.170]in shaping how I think about it as well.
[00:05:28.410]So my thanks to Kendal for her perspective,
[00:05:30.500]and for gathering so much of the research
[00:05:33.240]that I'll be talking with you about today.
[00:05:35.260]And Kendal if I ever do read every single article
[00:05:38.140]I'll be sure to let you know.
[00:05:40.120]So let's start with sex differences in ASD identification.
[00:05:45.260]As many of you know,
[00:05:46.770]we identify boys about four times more often
[00:05:50.820]than we identify girls with autism spectrum disorder.
[00:05:54.440]In fact, the prevalence estimates
[00:05:56.150]from several well designed studies
[00:05:58.320]tend to suggest that one in 42 males
[00:06:01.890]presents with significant symptoms of autism
[00:06:04.840]and one in 189 females will also present with these symptoms
[00:06:10.510]through the surveillance methods
[00:06:12.200]that are done in public health work,
[00:06:13.940]which is primarily record review.
[00:06:16.030]So it's really important to note,
[00:06:17.820]as we're looking at these numbers that prevalence estimates
[00:06:20.970]are about record review
[00:06:22.430]and who looks like they might have it.
[00:06:24.390]It's not necessarily the same
[00:06:26.430]as if you did a full diagnostic workup
[00:06:29.350]but because surveillance studies are designed
[00:06:31.550]to give us reliable numbers over time
[00:06:34.730]we can look at any changes over time
[00:06:38.470]which can be helpful for understanding causes.
[00:06:40.950]And we can look for different patterns within subgroups
[00:06:44.600]'cause we're using the same methodology to find boys
[00:06:47.260]as we're using to find girls.
[00:06:49.340]So not only do we identify them
[00:06:51.680]with the diagnosis less often
[00:06:54.110]but we aren't picking them up
[00:06:56.300]even when we're doing record review surveillance
[00:06:58.620]studies of risks.
[00:07:01.000]We also know from the research
[00:07:02.780]that girls are usually identified later than boys
[00:07:06.460]usually years later
[00:07:08.600]and there are different data for different states.
[00:07:11.320]In general, in the United States
[00:07:13.630]the average age of identification for boys
[00:07:16.360]still hovers at around four years of age
[00:07:19.090]there are places where we're doing a better job
[00:07:21.370]and identifying more younger children.
[00:07:24.350]But if you consider the average age for boys
[00:07:26.800]to be around four some of the available data
[00:07:29.600]from Shattuk and colleagues suggests that
[00:07:32.040]girls aren't identified until closer to the age of eight.
[00:07:35.920]So that is a significant gap in identification
[00:07:39.900]and really shuts the door
[00:07:41.740]on any possibilities for early intervention.
[00:07:46.290]As you look at these data more closely
[00:07:48.410]what you'll discover is that as a field
[00:07:51.330]we're pretty good at identifying girls
[00:07:54.700]who also have an intellectual impairment
[00:07:57.780]in addition to autism.
[00:07:59.440]And this intellectual impairment doesn't have to be severe
[00:08:02.150]it could be in the mild range or even borderline
[00:08:04.950]and they're more likely to be identified.
[00:08:07.460]It's girls who have intact cognitive functioning
[00:08:11.740]or are perceived to be particularly bright
[00:08:14.860]who are most likely to be missed,
[00:08:17.510]particularly when evaluated in early childhood,
[00:08:20.470]but also sometimes across the lifespan.
[00:08:24.430]So what are the early markers of ASD?
[00:08:28.190]Well, we've learned a lot from particularly
[00:08:30.980]the Baby Siblings Consortium project
[00:08:33.810]about the symptoms to look for in the first year of life.
[00:08:37.820]For those of you who may be unfamiliar
[00:08:40.250]the Baby Sibs Consortium Project is an international attempt
[00:08:44.870]to try to understand what autism looks like from birth
[00:08:49.800]through early childhood by identifying families
[00:08:54.560]who have one or more children with autism,
[00:08:57.490]and then getting involved and observing
[00:09:01.580]and studying their children,
[00:09:04.530]the children that they have after
[00:09:06.400]they've found out they have another child with autism.
[00:09:09.040]In other words, we're capitalizing on the genetics of autism
[00:09:13.860]and recognizing that approximately 18 to 25%
[00:09:18.090]of younger brothers and sisters of somebody on the spectrum
[00:09:20.910]is going to present with some significant
[00:09:22.980]symptoms of autism.
[00:09:24.390]So by following these babies from birth
[00:09:27.010]who we don't know yet, if they have autism
[00:09:29.610]but they have a brother or sister who does
[00:09:31.690]we've been able over time, thanks to the work of
[00:09:34.940]really some unexceptional research teams in Canada
[00:09:37.630]and in the United States to see these markers of ASD
[00:09:40.280]in the first year of life.
[00:09:42.090]So what we know is that early on
[00:09:44.550]you see developmental delays and sensory motor functioning.
[00:09:47.430]So you could see reflexes being held on too long
[00:09:50.340]for example, we see a reduced gaze fixation at six months.
[00:09:54.180]In other words, it's very difficult for boys
[00:09:58.790]in particular at young ages to maintain their attention
[00:10:01.640]to faces where as when we talk in a few minutes
[00:10:05.530]infant girls may actually look at faces too long
[00:10:09.030]and have a hard time shifting away
[00:10:11.390]which could be relevant clinically years later.
[00:10:14.460]We also see in the first year of life
[00:10:16.250]that there's a limited range of intonation in a young child
[00:10:20.480]or a baby's babbling.
[00:10:22.310]So we see this limited range communicatively from the start.
[00:10:27.880]In the second year of life,
[00:10:29.640]we begin to see developmental delays
[00:10:31.610]in several aspects of social communication.
[00:10:34.240]So it's often talked about that young children
[00:10:37.740]who turn out to have ASD
[00:10:39.540]tend to not follow an adult's point.
[00:10:41.900]So they don't respond to bids of joint attention
[00:10:45.510]as frequently as toddlers without ASD.
[00:10:49.340]We also tend to see significant delays
[00:10:51.670]in language understanding and fine motor skills,
[00:10:54.560]particularly relative to the ability to solve problems
[00:10:58.540]that don't involve language or what we would call
[00:11:00.570]non-verbal cognition.
[00:11:02.700]Atypical eye contact in other words,
[00:11:05.020]not particularly meshed
[00:11:06.710]with other nonverbal communicative behaviors
[00:11:09.530]is often observed in the second year of life
[00:11:12.500]as is poor visual tracking of objects
[00:11:15.590]suggesting that the sensory motor system
[00:11:18.860]and the neurological integrity
[00:11:20.590]of the developing infant is impaired
[00:11:23.410]in ways that can be subtle and hard to track.
[00:11:26.110]There also appear to be some findings
[00:11:28.140]that there is difficulty for young children on the spectrum
[00:11:31.560]both boys and girls to disengage their attention
[00:11:35.710]particularly when they're looking at something
[00:11:38.300]fear inspiring, anxiety producing or unpleasant.
[00:11:42.270]It's almost as though in young children
[00:11:45.120]the difficulty shifting attention
[00:11:46.880]that we see in older people with ASD
[00:11:49.730]results in really kind of being stuck
[00:11:52.300]at focusing on upsetting content
[00:11:56.200]without the tool of being able to look away and feel better.
[00:12:00.940]And that difficulty could get in the way
[00:12:04.490]of referencing caregivers
[00:12:06.060]who can give you comfort when you're upset
[00:12:08.210]and may in my opinion actually set the scene
[00:12:11.590]for the emotional dysregulation we often see later
[00:12:15.180]but that has yet to be proven in the research.
[00:12:17.850]And then lastly, the other marker we are used to looking for
[00:12:21.140]is an inconsistent response to name.
[00:12:23.780]So a tendency to be in one's own world
[00:12:26.360]and not really responding to the bids of others.
[00:12:31.490]We also see less looking at caregivers faces,
[00:12:34.580]less monitoring of what other people are looking at,
[00:12:37.330]less frequent imitation
[00:12:38.970]especially when there are no objects involved
[00:12:41.130]and it's purely for social play
[00:12:43.120]and less shared an effect particularly a range of effect.
[00:12:47.210]And as I mentioned before
[00:12:48.600]less frequent joint attention behaviors.
[00:12:51.640]So overall we know that in the first two years of life
[00:12:54.760]there are several things that we could be looking for
[00:12:57.700]that will help us identify
[00:12:59.450]young children who may be presenting
[00:13:01.640]with signs or symptoms of an autism spectrum disorder.
[00:13:05.730]But what do we know about the different symptom patterns
[00:13:08.930]that there may be between females and males
[00:13:12.770]across development?
[00:13:18.900]Well, when you look at the research on sex differences,
[00:13:23.180]what you'll find
[00:13:24.897]is that we have a lot of contradictory findings
[00:13:27.720]and the short story is
[00:13:29.300]that those findings are probably different
[00:13:31.540]because researchers have been examining
[00:13:35.390]different groups of children recruited in different ways
[00:13:38.170]and have used different methods to evaluate them.
[00:13:41.330]So for example, studies really differ on who they include,
[00:13:44.880]how old they are, if they have other genetic conditions,
[00:13:47.710]if the children have already been clinically identified
[00:13:51.140]or if they're coming from the broader population.
[00:13:54.310]This idea of how they are recruited is really important
[00:13:58.010]because the research is going to reflect
[00:14:01.030]who's been included in the study
[00:14:02.870]and the differences in recruitment
[00:14:05.480]are substantial in this literature.
[00:14:07.990]One of the important aspects that I'll be emphasizing today
[00:14:11.480]is that many of these studies do not take into account
[00:14:15.760]the cognitive or developmental level of the child
[00:14:18.750]and so we could be seeing studies that find differences
[00:14:22.810]or don't find differences but they haven't even looked
[00:14:25.710]at whether or not cognitive functioning
[00:14:27.910]is driving some of the ways
[00:14:29.810]those profiles express themselves.
[00:14:33.000]So in general, the better research in the field
[00:14:36.110]is developmentally sensitive.
[00:14:38.010]We have several studies for example
[00:14:39.690]that instead of including anybody from the age of four to 25
[00:14:43.800]and looking at symptom differences between males and females
[00:14:46.990]those studies are only broadly helpful.
[00:14:48.860]We have several studies that look just at two year olds
[00:14:51.530]or look at just three to five-year-olds.
[00:14:54.150]We also need to pay attention to those studies
[00:14:56.730]that take into account the developmental levels
[00:14:59.790]of the individuals being assessed.
[00:15:02.410]Since we know that as a field
[00:15:04.730]we are doing kind of the...
[00:15:09.050]We're doing least well I should say
[00:15:11.250]identifying girls who have high IQs
[00:15:14.080]we have to be particularly thoughtful
[00:15:16.530]about the role of developmental functioning
[00:15:18.810]in our assessments.
[00:15:20.460]So in general, when you take into account
[00:15:23.520]all of the work that has been done
[00:15:25.780]even though more studies have been conducted
[00:15:29.640]on older children and adults as far as the sex differences
[00:15:34.400]we find that the evidence base is actually stronger
[00:15:39.090]for suggesting that young children
[00:15:41.930]probably show more differences
[00:15:44.840]in the male versus female phenotype
[00:15:46.930]than they do at girl older ages.
[00:15:49.290]So not only do we need to study this particular period more
[00:15:53.320]but we need to pay attention to the findings
[00:15:55.950]that those researchers who've approached this
[00:15:57.840]with a developmentally sensitive lens
[00:15:59.900]have been able to find.
[00:16:02.490]So what do we know?
[00:16:04.200]Well, during infancy
[00:16:05.830]we'll basically go chronologically here.
[00:16:09.100]We have some evidence
[00:16:10.820]from some cognitive neuroscience protocols
[00:16:13.630]that between the ages of six and 12 months of age
[00:16:17.040]girls are showing a particular risk for ASD
[00:16:21.510]when they show too much attention to social targets.
[00:16:25.110]In other words, they have an increased problem
[00:16:28.620]looking away from stimuli
[00:16:31.150]and that fixation could be associated with increasing
[00:16:36.470]co-occurrence of social anxiety in later years.
[00:16:39.800]So there's a sort of hyper-vigilance or over attending
[00:16:43.920]to cues from faces and voices
[00:16:47.060]that some of the young infant girls are demonstrating
[00:16:50.550]particularly those who grow up to be
[00:16:52.380]high functioning people on the spectrum.
[00:16:55.070]So we have to be thoughtful about
[00:16:57.700]perhaps as more social information is coming in
[00:17:01.740]and there isn't that ability to shift away
[00:17:04.730]that could have some impact
[00:17:06.560]on the development of co-occurring anxiety disorders later
[00:17:11.320]which we definitely see in the literature
[00:17:14.300]on adolescents and adults females in particular with ASD.
[00:17:21.490]So whereas the infant literature
[00:17:23.280]can give us some gaze shifting paradigms to consider
[00:17:27.410]the toddler literature has a different set of data to offer.
[00:17:31.410]And some of these findings are contradictory.
[00:17:34.290]So one of the first people
[00:17:35.330]to study differences in males and females
[00:17:38.170]between the ranges of 14 to 35 months
[00:17:40.850]was Alice Carter and colleagues.
[00:17:42.620]And they found there were no differences
[00:17:44.420]on parent report of symptoms when they used the ADI-R.
[00:17:47.840]They did find on the ADOS
[00:17:49.550]that the young girls showed more impairments
[00:17:52.200]in the communication domain
[00:17:54.180]with particular problems in empathizing and withdrawing
[00:17:59.220]when they are in stress as reported by parents
[00:18:01.760]and a few other of their parent report measures.
[00:18:05.610]They also helped focus us as a field
[00:18:08.440]on looking at the cognitive profile on standardized testing.
[00:18:12.550]And it turns out that this is a finding
[00:18:14.350]that's been replicated by several groups
[00:18:17.010]within using in this particular case,
[00:18:19.490]the Mullen Scales of Early Learning
[00:18:22.110]young girls showed larger discrepancies
[00:18:25.840]within their profile than the young boys.
[00:18:28.620]In general, girls tended to show relative weaknesses
[00:18:33.120]in receptive language and fine motor
[00:18:35.950]relative to their visual receptive skills.
[00:18:39.090]So it's important to think
[00:18:40.410]not only about their overall cognitive performance
[00:18:43.270]but where their discrepancies lay.
[00:18:47.330]Another study conducted by Reinhardt and colleagues
[00:18:50.740]that used a much larger sample size
[00:18:54.070]recruited from various web-based portals
[00:18:56.960]run by the Florida State University looked at toddlers
[00:19:01.360]and compared their social communication skills
[00:19:04.550]at the age of 20 months.
[00:19:06.350]What was I think interesting about this particular study
[00:19:09.470]is they included children
[00:19:11.320]who eventually received a diagnosis of ASD
[00:19:14.470]and also those who were typically developing
[00:19:16.710]but matched by age.
[00:19:18.310]And what you can see on this chart is at the top there
[00:19:22.560]that's where you have the typical girls
[00:19:24.360]and the typical boys.
[00:19:25.570]So these are mean scores
[00:19:27.950]from the communication and social behavior skills scales
[00:19:31.520]by whether be it all
[00:19:32.660]higher score meaning better social communication skills.
[00:19:35.950]And you can see that in this 20 month old sample
[00:19:39.160]there are very few differences
[00:19:40.730]between typical boys and girls.
[00:19:42.500]They're right up there at the top.
[00:19:44.360]When we look at the toddler boys and girls
[00:19:47.860]what you see are no differences in emotion items
[00:19:51.060]a slight advantage for girls in gestures
[00:19:53.930]not meaningful though at all,
[00:19:55.800]but when you look at overall attempts to communicate
[00:19:58.870]and overall effectiveness of merging
[00:20:02.050]non-verbal and verbal communication
[00:20:04.320]you see a relative strength
[00:20:06.360]in boys on the spectrum over girls.
[00:20:09.480]So perhaps there could be a subtle difference
[00:20:13.660]that begins to occur in the second year of life
[00:20:16.980]which over time could cascade into longer term impacts.
[00:20:23.020]Several studies have concurred
[00:20:25.630]on an important finding that will be very relevant
[00:20:28.140]for our practices in early identification.
[00:20:30.690]And that is that two year old girls
[00:20:33.120]who were later found to have confirmed diagnosis of ASD
[00:20:36.910]show fewer repetitive behaviors
[00:20:39.210]than their male counterparts.
[00:20:41.550]Specifically, several groups have noted
[00:20:44.330]less unusual actions on objects I guess you might say.
[00:20:48.600]There's less frequent spinning,
[00:20:50.010]less frequent carrying or over attachment to objects
[00:20:52.810]and overall less abnormal body use.
[00:20:56.070]Now that is not to say
[00:20:57.490]that there aren't girls who do do some repetitive behaviors
[00:21:00.640]but those who do tend to also have
[00:21:03.600]a more significant developmental delay
[00:21:06.030]at the time of their autism evaluation.
[00:21:09.140]So in general,
[00:21:10.270]there appear to be some early emerging differences
[00:21:13.270]in that third aspect of what we used to call
[00:21:16.350]the triad of autism symptoms, social communication
[00:21:19.860]and then repetitive behaviors and interests.
[00:21:21.970]So repetitive and behaviors and interests
[00:21:23.920]could be an area of significant sex differences.
[00:21:29.160]Relative to young boys other studies have shown
[00:21:32.400]that girls who turn out to have ASD show more difficulties
[00:21:36.660]in the emotion regulation domain particularly in sharing
[00:21:41.560]different types of effect with caregivers,
[00:21:44.140]in regulating intense emotions and in demonstrating empathy.
[00:21:49.440]So in my clinical work just anecdotally
[00:21:52.200]noted that many times girls in the elementary,
[00:21:55.220]middle and high school years are really struggling
[00:21:58.010]with making sense of other people's emotions,
[00:22:00.550]of interpreting emotional information correctly
[00:22:03.960]and regulating their strong responses
[00:22:07.880]to what's going on around them
[00:22:09.210]is often a challenge for parents and teachers.
[00:22:11.860]It's quite possible as we learn more
[00:22:14.070]about the early emergence of emotion regulation skills
[00:22:17.730]with people on the spectrum that we'll discover
[00:22:20.330]that females have a particularly difficult time
[00:22:23.360]in this emotional domain.
[00:22:26.760]Other studies of toddlers that have stratified their samples
[00:22:30.600]by the level of cognitive functioning
[00:22:33.040]have also been informative.
[00:22:35.400]In one study by Mathias and colleagues,
[00:22:37.530]we see that two year old girls who have ASD
[00:22:40.860]but do not have a significant cognitive delay
[00:22:44.350]relative to boys who are also two years old
[00:22:49.170]showed more overreactions to sounds, more clumsiness,
[00:22:52.660]and more problems with personal space.
[00:22:54.910]They also show relative to their male counterparts
[00:22:57.470]fewer problems with imitation,
[00:22:59.660]preoccupation with parts and abnormal visual fascinations.
[00:23:04.130]So when I look at this particular article
[00:23:06.990]one of the things I thought about is how...
[00:23:09.570]You know how in schizophrenia they talk about
[00:23:11.670]positive symptoms, those are things that you can see
[00:23:14.680]and then there are negative symptoms such as withdrawal.
[00:23:17.430]The things that involve the person
[00:23:19.180]they're kind of internal things
[00:23:20.470]they're the absence of something.
[00:23:21.950]It's what you don't see that matters.
[00:23:24.210]Here I think what we might be faced with as a field
[00:23:27.770]is that at young ages
[00:23:29.520]there are fewer positive symptoms perhaps
[00:23:33.150]demonstrated by high functioning girls
[00:23:35.610]than by their male counterparts.
[00:23:37.460]And when I think we all pay more attention
[00:23:41.290]to unusual behaviors that are right in front of us
[00:23:44.040]then we are able to observe the lack or inconsistency
[00:23:49.080]of a behavior we would hope or expect to see.
[00:23:52.670]So it's quite possible
[00:23:54.340]that what we need to be thinking about
[00:23:57.130]is less of a focus on taking a term
[00:24:00.020]from the schizophrenia literature positive symptoms
[00:24:02.920]and more of a focus on those negative symptoms
[00:24:05.560]or what's actually lacking.
[00:24:08.470]When we examine a second comparison,
[00:24:12.350]two year old girls with ASD and a cognitive delay
[00:24:15.640]matched to two year old boys with ASD and a cognitive delay
[00:24:20.350]what we see is that the girls present with
[00:24:24.220]more problems with gesture use,
[00:24:26.610]a more limited range of facial expressions
[00:24:29.030]and a lack of exploration and even curiosity
[00:24:31.820]as it's described than the boys in the study.
[00:24:35.600]They also, the girls also tend to show fewer problems
[00:24:40.110]attempting to communicate
[00:24:41.950]and they're reported to interact
[00:24:44.630]for purely social purposes more often
[00:24:47.360]than their male counterparts.
[00:24:49.720]This to me was very consonant
[00:24:52.190]with some of my anecdotal experience clinically
[00:24:55.210]where I would be evaluating a two year old girl
[00:24:58.230]and she would look at my face and smile
[00:25:00.740]or she would initiate an interaction
[00:25:02.980]maybe not be able to sustain it,
[00:25:04.790]but that sense of being with me in the room
[00:25:08.250]often influenced my thinking
[00:25:10.280]that this child was perhaps on the right track socially.
[00:25:13.740]Then if I had the opportunity
[00:25:15.420]to see that girl a year or two later
[00:25:18.370]I sometimes saw that the social impairments
[00:25:21.270]were more debilitating than I had recognized.
[00:25:24.320]And I've begun to wonder
[00:25:26.590]if girls because of some biological differences
[00:25:30.650]in brain development
[00:25:31.990]have a spared capacity to socially relate.
[00:25:37.180]If that does exist, as some of the sex differences studies
[00:25:40.310]and typically developing males and females tell us
[00:25:43.520]then perhaps the slight advantage
[00:25:46.450]in being able to respond in a social situation
[00:25:49.860]particularly with a one-on-one adult
[00:25:53.010]could give us the impression
[00:25:55.330]that a young girl is less socially affected by autism
[00:25:59.570]than she may be.
[00:26:00.810]Because as we look in the literature
[00:26:02.680]when social demands are increasing
[00:26:05.210]the social impairments are emerging more and more.
[00:26:08.860]So it seems to me that the literature is suggesting to us
[00:26:12.490]that in really young children
[00:26:14.240]we should pay attention to the communication profile,
[00:26:17.090]we should pay attention to the emotional aspect
[00:26:19.640]and we shouldn't give young girls too much credit
[00:26:22.640]if they're a little bit responsive,
[00:26:24.470]do a little bit of imitation
[00:26:26.060]and do a little bit of joint attention
[00:26:28.010]because what we really need to see
[00:26:29.830]is how they do with other children in more complex settings
[00:26:33.740]and if those social behaviors can be built upon and deepened
[00:26:38.020]and not just go through this surface level of responsivity.
[00:26:43.210]When we turn our attention to three to five-year-olds
[00:26:45.670]what we see is that girls are looking better
[00:26:48.650]than their male counterparts
[00:26:50.130]on parent and teacher interviews
[00:26:52.980]and socialization and daily living skills.
[00:26:55.400]And those better adaptive behaviors can be deceptive.
[00:27:00.670]When you look at what's required
[00:27:02.550]of a four-year-old socially it's kind of just the basics.
[00:27:07.330]If only we were held
[00:27:08.900]to the social conventions of four year olds
[00:27:11.350]we would all seem socially successful.
[00:27:13.710]Unfortunately, other studies tell us that over time
[00:27:17.430]girls who seemed relatively okay in socialization
[00:27:21.770]as four year olds often struggle with those skills
[00:27:26.130]when their parents are interviewed just a few years later.
[00:27:30.400]So some of the strengths that we may witness
[00:27:33.870]in girls that we have concerns about
[00:27:35.790]we wonder if they're on the spectrum.
[00:27:37.700]Those strengths that we see in preschool
[00:27:39.870]may not maintain across development.
[00:27:44.520]As we move our attention to school-aged youth and teens
[00:27:47.110]and I'm gonna be very brief here.
[00:27:48.550]The literature is deep and I wasn't able to get through it.
[00:27:51.600]What we see in general
[00:27:53.070]is that girls tend to show less severe repetitive behaviors
[00:27:56.630]and fewer restricted interests
[00:27:58.860]or if they have those restricted interests
[00:28:01.100]they tend to be more in common with their peers.
[00:28:03.440]It's just that they love it more.
[00:28:05.140]Whereas boys are thought to have a greater likelihood
[00:28:08.210]of more unusual interests.
[00:28:10.750]Girls are also at increased risk
[00:28:13.360]of developing co-occurring internalizing disorders
[00:28:16.120]such as anxiety or depression.
[00:28:18.410]This is very significant.
[00:28:20.490]In fact, the most common reason
[00:28:22.850]for a girl to be referred for an evaluation
[00:28:26.440]during the elementary years is for anxiety or depression.
[00:28:30.580]I should say the most common reason
[00:28:32.010]for girls who are later found to have autism.
[00:28:33.940]They are not usually referred because of autism concerns.
[00:28:37.010]They're referred for concerns around anxiety,
[00:28:39.330]depression, learning disability or attention.
[00:28:43.200]Rarely are autism spectrum disorders
[00:28:46.750]the primary reason for asking for an evaluation
[00:28:51.110]in the elementary or middle school years
[00:28:52.730]across the country is what the data are telling us.
[00:28:55.630]Girls tend to show fewer disruptive behavior problems
[00:28:58.290]at home and school.
[00:28:59.710]That's true whether you have ASD or not
[00:29:02.390]and it is thought that part of the reason
[00:29:04.530]that we are under identifying girls in the school system
[00:29:07.710]is that they are able to kind of fly under the radar
[00:29:11.150]and can respond to some of the response to intervention
[00:29:14.960]approaches that we take
[00:29:16.640]and may not necessarily seem to require identification
[00:29:22.040]until we get farther down their educational path
[00:29:25.082]and realize that there're a lot of gaps
[00:29:28.420]in what they've actually learned
[00:29:29.970]and while they can be in the classroom
[00:29:32.380]and go with the flow of many classroom routines
[00:29:35.510]unfortunately, we're seeing a lot of unidentified girls
[00:29:39.330]not actually able to benefit
[00:29:41.410]from their educational opportunities
[00:29:43.990]because they're not necessarily engaged at a deep level.
[00:29:47.690]But they don't cause a lot of disruption
[00:29:50.080]and may not get the attention of the people around them.
[00:29:54.540]By the age of nine girls on the spectrum tend to show
[00:29:58.320]more significant social communication impairment
[00:30:01.760]than their male counterparts.
[00:30:03.360]They actually tend to show a overall lower cognitive ability
[00:30:07.040]and lower adaptive functioning.
[00:30:09.210]And this is from a really large study
[00:30:11.180]with a more epidemiological reach.
[00:30:13.700]So it's something that we can generalize from.
[00:30:16.740]What those data tell me
[00:30:18.540]is that many of those girls by the age of nine
[00:30:21.310]hadn't had the benefit of intervention or identification.
[00:30:25.560]And as we'll consider, imagine going through life
[00:30:29.400]with a different learning style
[00:30:32.290]with some gaps in your understanding of other people
[00:30:35.080]or some nervousness about what the world's about
[00:30:38.550]and how to communicate.
[00:30:40.570]If no one identifies that you have those challenges
[00:30:44.170]yet you're constantly held to the same standards
[00:30:46.540]as everybody around you without the tools to get there,
[00:30:50.040]that alone feels to me like a recipe
[00:30:53.360]for anxiety or depression.
[00:30:55.370]And as we'll find,
[00:30:56.203]if you dip into the literature on ASD and women
[00:30:59.050]there's also a lot of research that suggests
[00:31:01.830]an overly dependent relationship style
[00:31:04.650]and an increased risk for domestic violence as adults.
[00:31:08.950]So we need to get better at this.
[00:31:11.250]We need to understand what it means to be a girl
[00:31:14.540]with autism spectrum disorder.
[00:31:17.950]As we look some more into the research on teenagers,
[00:31:21.710]we see that girls with intact cognitive ability
[00:31:24.610]tend to do something that we call masking in the literature.
[00:31:28.070]And this is where they learn
[00:31:29.100]how to compensate for their difficulties
[00:31:31.550]by either finding the right situation to be in
[00:31:34.500]or many times a strategy like following one child
[00:31:38.750]or overly fixating on one child sometimes.
[00:31:41.410]Sometimes it's a friendship.
[00:31:42.610]Sometimes it's a bit of a fixation,
[00:31:44.900]but the strategy of doing what the people around you do
[00:31:47.850]can help you get by.
[00:31:50.170]Masking has long-term adverse consequences
[00:31:53.890]as has been written about in a lot of first person accounts
[00:31:57.570]as well as by researchers.
[00:31:59.740]If you're constantly trying to pretend
[00:32:03.070]that you're something other than who you are
[00:32:06.370]that has just an awful effect
[00:32:08.970]on how you think about yourself and whether you're worthy
[00:32:11.940]leads to a lot of social isolation
[00:32:15.160]and a lot of learned helplessness
[00:32:17.310]and a lack of a sense of competence.
[00:32:20.210]It also creates in my mind
[00:32:22.800]almost like what a person
[00:32:24.710]with an obsessive compulsive disorder goes through
[00:32:27.630]which is that constantly fatiguing task
[00:32:32.090]of trying to hide the thing that is not okay.
[00:32:35.670]That if you are constantly vigilant
[00:32:38.140]about not wanting someone to find you out
[00:32:40.970]that that alone can detract from your ability to cope
[00:32:44.900]and your ability to have a positive quality of life.
[00:32:49.640]One of the things that I think
[00:32:51.580]is a manifestation of masking that we see in school systems
[00:32:54.980]is a very frequent observation
[00:32:57.340]that I've had in team meetings.
[00:32:58.570]Once again, this is anecdotal.
[00:33:00.200]I don't know this from empirical evidence
[00:33:02.410]but perhaps it will ring true with your experience.
[00:33:05.640]I've been in many meetings where parents have said,
[00:33:09.790]the school team is telling me
[00:33:11.120]that she behaves well at school
[00:33:13.520]and I believe that she can hold it together
[00:33:16.240]and she knows that she wants her friends to like her
[00:33:18.960]or she needs to behave well
[00:33:19.990]or she wants her teacher to like her et cetera,
[00:33:21.950]but when she comes home, she completely falls apart.
[00:33:26.550]I've heard this pattern from so many families.
[00:33:29.750]And at first I think teams would sit back and think,
[00:33:32.490]okay, what is it?
[00:33:33.370]Well, school has more demands than home.
[00:33:35.830]Maybe home's not as structured
[00:33:37.380]and maybe the child has a hard time
[00:33:39.300]in unstructured situations
[00:33:40.950]or sometimes teams have said,
[00:33:43.150]maybe at home they don't expect enough from her
[00:33:45.800]or maybe they expect too much.
[00:33:47.440]So they're always concerns about the consistency.
[00:33:49.720]And sometimes those concerns can come out as judgy
[00:33:52.530]even if they're not intended to be so.
[00:33:55.150]I've also heard a lot of parents say,
[00:33:57.500]I feel like the school team doesn't believe me
[00:33:59.920]but it's absolutely true.
[00:34:01.510]She may not tantrum at school,
[00:34:02.960]I don't know how that can be
[00:34:04.080]but from the time she comes home until she goes to bed
[00:34:06.870]she's just a dysregulated mess.
[00:34:10.160]Those things are real
[00:34:11.810]and I think that they could be indicators
[00:34:14.290]of a young child or a growing child
[00:34:17.570]trying to make it through the day,
[00:34:20.480]having enough social cognition
[00:34:22.130]to recognize what she's supposed to be doing
[00:34:24.890]but then that eats up all of her resources
[00:34:27.180]and she can't maintain good behavior at home.
[00:34:31.890]So as I said,
[00:34:32.810]masking can have long-term adverse consequences
[00:34:35.860]and we may actually see some of those consequences
[00:34:38.680]in the girls we're working with in the school system
[00:34:41.210]particularly if not everybody is understanding
[00:34:44.920]what the nature of the child's challenges are.
[00:34:47.960]That old question of, is it a can't or a want
[00:34:51.750]and with any child but particularly with girls
[00:34:55.970]in the elementary years,
[00:34:57.390]I suggest that we fall back on the assumption of
[00:35:00.290]it's a can't and we teach it
[00:35:02.590]and then once we've known that we've taught it
[00:35:04.570]if the child's actually actively choosing
[00:35:07.330]not to do the right thing, then it's a won't.
[00:35:09.800]But in general
[00:35:10.830]I think we need to provide a lot more support
[00:35:13.370]for girls than we currently are.
[00:35:16.890]So what are implications for practice
[00:35:19.620]particularly in the assessment of young girls?
[00:35:24.640]Well, first of all, let's think about
[00:35:28.030]this idea in the literature
[00:35:29.320]that there may be what scientists are calling
[00:35:31.610]a female protective factor at play.
[00:35:34.540]What this basically means
[00:35:35.900]is that maybe there are biological differences
[00:35:39.290]in how our brains and nervous systems are structured
[00:35:42.240]such that girls have a biological advantage
[00:35:45.880]to be kind of geared up to be a little more social
[00:35:49.050]than their male counterparts to start with.
[00:35:51.410]These are controversial theories.
[00:35:53.140]They go into evolutionary biology
[00:35:54.950]in ways that we don't have time for today
[00:35:56.830]but they're really interesting.
[00:35:58.570]And in general, when you look at the research
[00:36:01.020]on differences in behavior in typical girls
[00:36:04.030]versus typical boys, you see in the early childhood years
[00:36:08.210]several early emerging social strengths
[00:36:11.550]and those strengths are thought to on a group level
[00:36:14.850]persist across the lifespan.
[00:36:17.350]So if there is a female protective factor
[00:36:20.540]that each of us who are female may be born into the world
[00:36:24.220]with a nervous system that has a higher probability
[00:36:28.100]at being better at these things
[00:36:30.810]then if the girl also has autism, what does that mean?
[00:36:36.290]Well, it might mean
[00:36:38.180]that if the girl has average to above average IQ,
[00:36:42.550]you may be able to see those small social behaviors
[00:36:48.740]that are enhanced by this protective factor
[00:36:50.680]as really positive
[00:36:51.740]and it could mask their underlying impairments
[00:36:54.550]until those social demands get more complex.
[00:36:57.540]Particularly given
[00:36:58.860]that any child who has the cognitive ability
[00:37:02.100]can often use a cognitive means to behave better socially
[00:37:05.720]but it may not necessarily be an intuitive way
[00:37:08.900]of behaving better socially.
[00:37:10.930]So this biological protective factor
[00:37:13.560]could lead to an increasing likelihood
[00:37:17.360]of girls with average to above average IQ
[00:37:19.630]masking their impairments somehow
[00:37:21.600]which is very likely to confuse and frustrate adults
[00:37:24.660]who are gonna see gaps in development they didn't expect,
[00:37:27.660]who might see more problems from third grade on
[00:37:30.410]than they ever anticipated
[00:37:32.480]and who may notice and report
[00:37:34.050]different behaviors in different contexts.
[00:37:36.570]It's a very inconsistent kind of presentation
[00:37:39.720]when you have a slight advantage
[00:37:42.330]at some of these early social behaviors.
[00:37:45.320]For girls with an intellectual disability
[00:37:48.250]it is thought that that protective factor is wiped out
[00:37:52.470]by whatever processes are driving
[00:37:55.070]the differences in their brain development,
[00:37:58.220]such that girls with an intellectual disability
[00:38:02.270]are likely to present with even more severe delays
[00:38:05.930]that if they have enough problems
[00:38:08.820]to kind of overwhelm the female protective effect,
[00:38:11.340]the idea is that those problems could be increasingly severe
[00:38:15.290]and thus increase the likelihood
[00:38:17.500]that we identify girls with ASD
[00:38:19.760]when there is a cognitive deficit present.
[00:38:22.650]And it turns out that's what the data suggests we're doing.
[00:38:26.840]So what are the implications of this?
[00:38:29.370]Well, obviously my first thought
[00:38:31.280]is that we absolutely need to make sure
[00:38:33.600]that we are assessing
[00:38:35.180]a young girl's cognitive and developmental functioning
[00:38:38.400]through multiple ways
[00:38:39.820]and we are interpreting the symptoms that we are seeing
[00:38:43.530]in social and communication and affect
[00:38:46.230]within the lens of that development.
[00:38:49.160]I realize that school systems
[00:38:51.300]don't always embrace standardized testing
[00:38:54.280]for a lot of important reasons.
[00:38:56.080]And I realized that there are a lot of problems
[00:38:58.580]with the diversity equity and inclusion
[00:39:00.770]of the norms on these assessments.
[00:39:03.410]I would also suggest that until we get something better
[00:39:06.920]and as we're working towards something better
[00:39:09.190]it is important to integrate standardized testing
[00:39:12.650]into our young child evaluations
[00:39:15.150]mostly so we can look at standardized profiles
[00:39:19.320]across children.
[00:39:21.550]So this child relative to other children her age
[00:39:24.440]but within the child,
[00:39:25.720]looking at different differences in the domains
[00:39:28.370]and different ways that the child responds
[00:39:30.470]to items in those domains.
[00:39:32.560]We also wanna keep in mind
[00:39:34.390]when you are assessing an intellectually capable young girl
[00:39:38.540]that you should expect to see some social strengths,
[00:39:42.080]you should expect to see some of the good markers
[00:39:46.460]that suggest autism isn't there
[00:39:47.890]like some imitation, some joint attention.
[00:39:50.490]However, take a look at when the social context
[00:39:53.560]becomes more complex.
[00:39:55.500]Those impairments might become more evident.
[00:40:01.070]Second implication I'd like to propose
[00:40:03.700]is that we as a field assess emotional regulation skills
[00:40:07.920]in the young children we're assessing for autism.
[00:40:10.660]Now, sometimes this can happen
[00:40:12.030]just through behavioral observation.
[00:40:13.660]There're also some tools that are being developed
[00:40:16.330]that would allow for parent and teacher report
[00:40:18.760]of emotional and behavioral responses in different contexts.
[00:40:22.960]From what I've been reading, it seems as though
[00:40:26.270]the emotional differences in young children
[00:40:28.480]are definitely worth considering
[00:40:31.200]when we're trying to understand
[00:40:32.600]differences between males and females.
[00:40:34.870]So while the girls may show
[00:40:36.520]some social strengths at young ages
[00:40:39.140]in my experience they don't show
[00:40:41.530]as many emotion regulation strengths
[00:40:43.930]and the literature seems to be backing that up.
[00:40:47.120]It's also important to look for differences
[00:40:49.350]in emotion regulation across settings
[00:40:51.730]and to look at the aspects of emotionality
[00:40:55.030]that I've listed here in the third bullet point.
[00:40:57.760]because these are the emotional issues
[00:41:02.340]that I've been seeing in my clinical practice
[00:41:04.730]and that colleagues of mine report
[00:41:06.250]in their clinical practice
[00:41:07.720]when they are working with girls on the spectrum.
[00:41:11.320]And some of those include exaggerated emotional intensity
[00:41:15.160]kind of going from zero to 60 very, very quickly
[00:41:18.030]but then also categorically stopping that high emotion
[00:41:22.130]and jumping into a different emotional state
[00:41:24.940]almost as if these are discontinuous emotional experiences.
[00:41:29.470]Parents often report high levels of reactivity.
[00:41:31.890]Some of which doesn't seem make a lot of logical sense
[00:41:35.050]or getting stuck emotionally
[00:41:36.830]on something and having a hard time moving through it.
[00:41:39.630]There can be a lot of black and white thinking
[00:41:41.650]about their own feelings or other people's feelings
[00:41:44.350]a misunderstanding as with boys of course
[00:41:47.210]that you can't have one feeling
[00:41:49.420]more than one feeling at a time for example.
[00:41:52.600]There is a lot in the literature
[00:41:54.240]and in clinical experience to suggest
[00:41:57.330]that whereas boys may not pick up on somebody's affect
[00:42:01.640]girls tend to misinterpret what they're picking up.
[00:42:05.670]So several studies are being done
[00:42:07.150]to look at possible differences
[00:42:09.070]in the perception of emotional cues,
[00:42:11.790]but so far the studies that I have found
[00:42:13.770]have been with adults and we don't know much
[00:42:15.930]about emotional perception in girls,
[00:42:18.120]but this is an area that we wanna try to understand better.
[00:42:21.979]There're also some reports in the literature
[00:42:24.390]about young girls picking up
[00:42:26.540]on the emotions of those around them,
[00:42:29.330]completely out of context.
[00:42:30.630]So adopting another person's emotion
[00:42:32.540]even when there's no reason for them
[00:42:34.390]to actually share in that affective state.
[00:42:37.710]That's something we need to understand better.
[00:42:39.750]And it could be consistent
[00:42:41.380]with some of the identity formation problems
[00:42:43.950]we learn about in adolescent girls on the spectrum.
[00:42:48.870]We also see parent report and teacher report
[00:42:51.930]about inappropriate affect
[00:42:53.450]as far as what's going on in the context
[00:42:55.680]that the range of affect can be kind of limited
[00:42:58.340]and might only be, you know, towards the negative
[00:43:01.020]or might only be towards the positive
[00:43:03.120]or might only be about mad versus sad.
[00:43:05.920]And most importantly, probably from a coping standpoint
[00:43:09.740]we see a limited range of strategies
[00:43:11.730]or the ways that a young girl can sooth herself.
[00:43:17.910]A third implication we wanna consider
[00:43:20.080]in our evaluations of young girls
[00:43:21.770]is I think it's really important
[00:43:23.890]to pay attention to motor functioning, eating,
[00:43:27.390]sleeping and toileting.
[00:43:29.130]All of these things could be looked at as lifestyle factors
[00:43:32.370]that either help us have a good quality of life
[00:43:34.830]or can get in the way.
[00:43:36.400]They also have a lot to do
[00:43:37.840]with your overall neurological integrity and really speak to
[00:43:42.210]how well organized the nervous system is.
[00:43:45.890]We all know that when we are deprived of sleep
[00:43:49.120]or we aren't well-nourished
[00:43:50.650]or we don't have a chance for exercise
[00:43:52.910]that our mood, our behavior, our cognition
[00:43:55.700]are all likely to be affected.
[00:43:58.020]So just as I actually would make
[00:43:59.800]this recommendation for boys,
[00:44:01.400]I think it's really critical
[00:44:02.650]that we pay attention to these things in the girls.
[00:44:05.810]The other thing that we are seeing in the literature
[00:44:08.490]is some increased case reports on self-harm in females.
[00:44:14.050]So that girls that may pick at their skin or their fingers
[00:44:17.600]that seems to be a behavior that is generating more concern
[00:44:22.120]in the ABA protocols, for example.
[00:44:25.520]And there's a lack of understanding why this occurs
[00:44:28.570]and I don't mean to say that we know
[00:44:30.610]that this is female specific
[00:44:32.680]we are just seeing more case reports now in the field
[00:44:35.760]of looking at self-harm as an important
[00:44:38.210]and sometimes overlooked indicator in early identification.
[00:44:44.370]Our fourth implication is gonna be familiar to all of you
[00:44:48.420]who operate in this sector but I didn't wanna miss it.
[00:44:52.470]And that is we really need to be careful
[00:44:54.800]to not only assess the problems or challenges
[00:44:58.240]that a young child has,
[00:44:59.700]but to pay attention to the strengths,
[00:45:01.600]the interests and the motivators
[00:45:03.420]and to do this across the lifespan of the individuals
[00:45:06.550]that we work with.
[00:45:08.320]Given the significant self-esteem issues
[00:45:10.670]that we hear from females on the spectrum as they grow older
[00:45:14.110]I think taking a strength-based approach
[00:45:16.020]is particularly important with females.
[00:45:18.960]We need to have this kind of ongoing programming approach
[00:45:22.930]that not only helps to bolster those areas of weakness
[00:45:27.110]but finds ways to make sure every child
[00:45:29.980]gets to feel competent and confident and joyful each day
[00:45:35.650]in indulging in things they're good at or that they enjoy.
[00:45:38.920]And the identification of motivators
[00:45:41.240]is gonna be hugely helpful
[00:45:42.990]as we're trying to work towards encouraging initiation
[00:45:45.920]and persistence to task completion.
[00:45:48.410]So we need to I think begin early in our first evaluations
[00:45:52.920]in helping parents and future teams
[00:45:55.120]identify strengths as well as areas of weakness.
[00:46:01.100]Implication number five.
[00:46:02.900]So now that we've sort of thought about cognitive testing
[00:46:06.300]we've thought about strengths,
[00:46:07.360]we've thought about motor and adaptive skills,
[00:46:09.950]I think it's also important that we consider whether or not
[00:46:12.980]the symptom tools that we're using
[00:46:15.040]have separate norms for males and females.
[00:46:17.960]So we don't yet have this
[00:46:19.940]for the autism diagnostic observation schedule, for example
[00:46:23.080]but I've heard that some of that is in the works.
[00:46:25.290]There are some tools out there that have different norms
[00:46:28.080]still referenced by age,
[00:46:29.720]but have been compared to samples of boys
[00:46:33.100]or samples of girls.
[00:46:34.410]The one that I really like
[00:46:35.790]is the Social Reciprocity Scale version two.
[00:46:38.680]It's a strongly validated tool
[00:46:41.700]and provides different versions for preschool,
[00:46:44.400]school age and adults also provides norms by sex
[00:46:48.990]and has different norms for self-report
[00:46:51.860]versus parent report.
[00:46:53.380]So that can also be useful.
[00:46:56.760]Next suggestion is that we not expect
[00:46:59.580]as many obvious repetitive behaviors
[00:47:01.700]and unusual interest in the young girls we see.
[00:47:04.750]Instead the literature
[00:47:07.110]and here I'm drawing not just from research,
[00:47:09.430]but from some of the self-report accounts
[00:47:12.510]and some of the case studies literature of adults.
[00:47:14.990]So this is a softer evidence-based slide.
[00:47:19.270]In general, what we're hearing is that girls or females
[00:47:23.540]tend to have more symptoms
[00:47:26.010]in the unusual sensory experience domain
[00:47:28.750]either being over or under sensitive,
[00:47:31.600]may have more unusual fears
[00:47:33.420]than actual restricted interests,
[00:47:36.480]may have more fixations that are social.
[00:47:39.000]So kind of becoming overly interested
[00:47:42.680]when one friend or in one adult.
[00:47:45.000]There's also in the literature
[00:47:47.190]a tendency to identify with animals,
[00:47:49.610]not only as an interest,
[00:47:51.560]but there are frequent anecdotal reports
[00:47:54.490]of a young girl taking on the behaviors of an animal
[00:47:57.930]particularly when under stress
[00:48:00.170]and doesn't necessarily recognize
[00:48:03.260]the right time or place for imaginary play.
[00:48:06.420]So the animals that I am hearing about clinically
[00:48:09.840]purely anecdotal, a lot of horses, unicorns and cats
[00:48:15.100]could be other animals of course.
[00:48:16.630]And it's very interesting to consider
[00:48:18.380]does that mean that animals
[00:48:19.510]could be a fruitful therapeutic agent
[00:48:22.160]for many girls on the spectrum?
[00:48:24.260]I would argue quite possibly yes.
[00:48:26.200]And particularly anything that encourages
[00:48:28.320]that kind of interest
[00:48:29.420]is something you wanna capitalize in intervention.
[00:48:32.400]So instead of looking for lining up toys
[00:48:35.320]we might wanna think about things
[00:48:36.940]like a tendency for magical thinking and imaginary friends
[00:48:40.380]and for those things to last longer across development
[00:48:43.450]than you might expect.
[00:48:45.780]As girls get older
[00:48:47.710]we do see reports that more special interests emerge
[00:48:50.990]and many times those involve for the cognitively able girls
[00:48:54.910]researching their topics of interests.
[00:48:58.070]So what we find is that, as I mentioned
[00:49:00.560]they tend to share interests in similar topics
[00:49:03.700]as other girls their age,
[00:49:05.180]but they focus more of their time and attention on them.
[00:49:10.400]Another implication,
[00:49:11.880]so we wanna make sure that we are observing the child
[00:49:15.340]not just in this one-on-one situation
[00:49:17.980]with a responsive adult,
[00:49:19.520]but we need to see young girls
[00:49:21.780]in unprompted play situations
[00:49:24.920]that go on for 15, 20, 30 minutes.
[00:49:27.830]So not just a quick observation a real in-depth observation
[00:49:31.440]we wanna watch them with other children
[00:49:33.470]and pay attention to the complexity of their play,
[00:49:36.590]both by themselves or when they're with a peer.
[00:49:40.070]What we are seeing is in general
[00:49:42.600]some limitations in a young girl's ability
[00:49:45.050]to generate her own ideas about what to do in play.
[00:49:47.950]She may follow the other child but a young girl with autism
[00:49:51.610]is less likely to add something new to the play scheme.
[00:49:55.960]It's also less common to see a young girl with autism
[00:49:59.250]initiate a variety of multi-step play activities
[00:50:02.530]when she's on her own
[00:50:04.010]as compared to a young girl without autism
[00:50:06.420]who's likely to do that quite well.
[00:50:08.880]So you wanna pay attention
[00:50:10.370]to not only can this child be with a peer
[00:50:13.130]but what's going on when this child is playing with others.
[00:50:19.050]The next implication is to try not to be fooled
[00:50:23.220]by some intact social skills with a responsive adult.
[00:50:26.680]Now many of us were delighted
[00:50:28.320]when we see this good social raw material
[00:50:30.850]we want to see that and our bias in wanting to see that
[00:50:34.560]could cloud our judgment.
[00:50:36.240]And it's quite possible that really bright girls
[00:50:39.130]are gonna show their best selves
[00:50:41.310]in some of the diagnostic contexts we tend to use
[00:50:44.060]at least in the clinical world
[00:50:45.520]such as the Autism Diagnostic Observation Schedule
[00:50:48.590]where we are, you know, one-on-one with a child
[00:50:51.120]with a structured set of activities.
[00:50:53.580]It may be more fruitful to observe the child
[00:50:56.420]in unstructured situations
[00:50:58.270]with very little adult involvement
[00:51:00.450]and look for those qualitative differences
[00:51:03.150]in social interactions.
[00:51:05.260]It's also important to spend time with parents
[00:51:08.070]trying to understand
[00:51:09.790]which pro-social behaviors you're watching
[00:51:13.010]came naturally from the child
[00:51:15.210]and which may have been actively taught
[00:51:18.130]or copied from a cartoon or a video.
[00:51:22.040]And then the last implication I'd like to share today
[00:51:24.720]before turning it over to Kendal for her perspective
[00:51:28.160]is that I believe we always need to be willing
[00:51:30.610]to revisit the question of whether or not
[00:51:33.420]this child has ASD later in development.
[00:51:36.640]It is quite possible with our current tools and abilities
[00:51:40.230]that you will evaluate a two year old girl
[00:51:43.340]and you'll hear some things
[00:51:44.720]that make you wonder if it's autism
[00:51:46.560]but you haven't gathered enough evidence
[00:51:48.710]to make the case to make the call.
[00:51:51.360]That is a very real phenomena
[00:51:53.400]and in that situation,
[00:51:55.390]I think the most important thing we can do
[00:51:57.700]is continue to narrate for the parents out loud
[00:52:01.620]and for the parents and the team in writing
[00:52:04.750]the relative strengths
[00:52:06.800]and qualitative differences you are observing,
[00:52:09.720]the things that you are concerned about tracking over time
[00:52:12.950]and then continue to monitor and assess those things
[00:52:17.150]that as the social context gets more complex
[00:52:21.570]some of the social behaviors we associate with autism
[00:52:26.560]could become more observable for girls
[00:52:30.080]in those elementary and middle school years.
[00:52:33.060]It's also important to make sure
[00:52:34.980]that if the child doesn't meet criteria for ASD
[00:52:38.170]but is presenting with a communication delay, for example
[00:52:42.440]or a learning disability or an attention problem
[00:52:45.390]that we identify these girls
[00:52:47.330]for special education services
[00:52:49.130]and provide them based on their needs
[00:52:51.120]and we should still pull in those interventions
[00:52:54.180]from the autism world that may help a particular student
[00:52:56.980]even if she hasn't yet met criteria
[00:52:59.270]for the full identification.
[00:53:01.260]So I guess what I'm saying is keep ASD on the table,
[00:53:05.500]make sure that you're not completely
[00:53:07.160]ruling it out for a lifetime
[00:53:08.690]and make sure that you don't, you know,
[00:53:11.200]continue a trajectory that if this girl
[00:53:13.090]were to show more impairments later in functioning
[00:53:16.300]that people would say,
[00:53:17.150]oh, but they ruled that out at the age of two,
[00:53:19.250]that can't be the case.
[00:53:20.720]We have to keep an open mind.
[00:53:22.840]And I guess I would finish there by saying
[00:53:25.620]the reason that I got interested in this topic
[00:53:28.270]is because I was involved in a longitudinal study
[00:53:30.700]of young children with autism and I noticed over time
[00:53:34.170]that I was making mistakes in my evaluations.
[00:53:37.360]I was seeing two-year-olds,
[00:53:38.830]three-year-olds four-year-old girls,
[00:53:40.820]I wasn't identifying autism in those girls at that age
[00:53:44.840]and we were using the best tools
[00:53:46.320]we had available at the time.
[00:53:48.010]I would see them a few years later
[00:53:50.230]and the autism symptoms were more clear
[00:53:53.090]and I found myself wondering, what did I miss?
[00:53:56.160]How did I get this wrong?
[00:53:57.690]And what could have happened?
[00:53:59.700]What kinds of interventions
[00:54:01.120]could have been provided to this child
[00:54:03.440]had we known that she needed those services?
[00:54:07.110]So in a sense, I think there's a certain humbleness
[00:54:10.240]that we have to have
[00:54:11.210]when we are doing any kind of diagnostic process
[00:54:14.250]where you're basing your conceptualization on, you know,
[00:54:17.300]behaviors and reporting and there is no medical test.
[00:54:21.320]But I think it's particularly important
[00:54:22.950]to do as any strong educational evaluation purports to do
[00:54:26.730]which is narrate what you're seeing.
[00:54:29.680]It's less about the category or the diagnosis
[00:54:32.920]and it's more about a really clear description
[00:54:36.050]of this child's strengths and needs
[00:54:38.780]and quite important to maintain a written record
[00:54:43.020]that helps to tell the story
[00:54:46.390]of what aspects of development are going well
[00:54:49.380]and which ones need to be monitored over time.
[00:54:52.140]And my last point,
[00:54:54.560]one of the things that we need to learn more about
[00:54:56.890]in the research is that there tends to be an increase
[00:55:01.250]in the social vulnerability or an overly trusting nature
[00:55:04.950]in many women on the spectrum.
[00:55:07.140]And so now one of the things
[00:55:08.840]that interventionists are considering in the field
[00:55:11.370]is how can we do a better job at
[00:55:14.360]while trying to encourage of course, trusting other people
[00:55:17.430]helping girls develop better social cognition skills.
[00:55:22.030]So whether they fully meet ASD criteria
[00:55:25.160]or present more like a child with a learning disability
[00:55:28.040]who also has some social naivete
[00:55:30.470]we wanna make sure that we are providing them
[00:55:33.360]with some education around how to think about other people
[00:55:37.570]and how to understand the motives and intentions of others.
[00:55:45.690]And now I'd like to turn to a video
[00:55:49.210]that we collected together.
[00:55:50.720]This is Kendal Nolan, Self Advocate
[00:55:52.790]and Vice President of the Board of Directors
[00:55:54.690]at the ArC of Larimer County.
[00:55:57.980]So now I'd like to turn to a colleague
[00:56:01.350]and self advocate Kendal Nolan
[00:56:03.700]to share with us her perspective
[00:56:05.800]about why early identification
[00:56:08.200]of autism spectrum disorder in girls is important.
[00:56:11.530]Kendall, if you don't mind,
[00:56:12.570]could you share your perspective
[00:56:13.860]on this topic for our audience?
[00:56:15.550]Yes, definitely.
[00:56:16.910]I think that from a personal standpoint
[00:56:20.320]growing up on the autism spectrum was very hard.
[00:56:25.290]A lot of resources weren't available
[00:56:28.170]and that was partly because
[00:56:29.470]we didn't know I had ASD until I was 15 years old.
[00:56:34.250]Some interventions with those skills
[00:56:38.370]would have been great at an earlier age
[00:56:41.130]with social skills and emotion regulation.
[00:56:46.860]Yeah, the earlier we can identify
[00:56:48.770]girls on the spectrum the better.
[00:56:50.910]It's definitely not labeling
[00:56:52.190]it gives them a sense of who they are
[00:56:55.180]and how to cope with it moving forward.
[00:56:58.750]Being diagnosed as a teenager can be
[00:57:00.880]or as many women are diagnosed as adults
[00:57:05.420]I've heard that could be a lot more challenging
[00:57:07.510]because I heard there's gonna be a lot more challenging
[00:57:10.200]because there's a lot of reflection
[00:57:14.400]on why they weren't diagnosed.
[00:57:16.250]There's a lot of stuff going on in adolescents,
[00:57:19.230]brain development going on in adolescents
[00:57:22.200]and exploring, becoming an adult.
[00:57:26.060]And I think the younger, the better.
[00:57:30.080]Thank you very much Kendal for providing that perspective
[00:57:33.730]really do appreciate your time in doing so.
[00:57:37.140]So that concludes our webinar today
[00:57:39.640]on the topic of Early Markers of ASD in Girls.
[00:57:44.300]I have included several references
[00:57:46.370]that were key to today's talk.
[00:57:47.980]I am happy to provide a full reference list
[00:57:50.740]for anybody who's interested.
[00:57:52.730]Kendal and I are working on an article for a journal
[00:57:55.850]that will review the literature.
[00:57:57.410]So again, I wanna thank her for helping me
[00:57:59.400]compile the literature and for her perspective in this talk.
[00:58:02.710]So thank you all for your time and attention
[00:58:04.990]and wish you luck
[00:58:06.460]as you continue your professional development
[00:58:09.210]in the areas of autism identification.
[00:58:11.640]It's really been a pleasure.

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Early Identification of Autism in Girls

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