Educational Identification of Autism Spectrum Disorders: the Law and Eligibility in the Schools

Ruth Aspy, PH.D. Author

01/23/2019 Added

212 Plays

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The Law and Eligibility: Overview -Legal Foundations: Special Education & the Law -Autism Spectrum Disorder Defined -Tiers of Eligibility for Services ‐ Educational Need -Debacles – Breaking the Law -Eligibility Vs. Diagnosis -“High Cognition”‐ Gifted and the Law -Girls with ASD and the Law -Primacy and the Law

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[00:00:01.160]- [Ruth] Hello, I'm Ruth Aspy,
[00:00:02.820]and we're here to talk about educational identification
[00:00:06.150]of autism in the public school.
[00:00:10.670]These are some of the topics
[00:00:11.910]that we're going to cover today.
[00:00:13.750]We're going to talk about the legal foundations
[00:00:15.770]of evaluation of autism in the schools.
[00:00:19.090]We're also going to talk about eligibility
[00:00:22.020]and compare that to diagnosis.
[00:00:24.250]We're going to talk about what the law has to say
[00:00:27.605]about assessing students with strong cognitive abilities,
[00:00:31.350]and how the law applies to evaluation of girls with autism.
[00:00:36.510]We're also going to talk about the issue of primacy.
[00:00:42.470]We begin with the legal foundations
[00:00:44.800]of evaluation in special education.
[00:00:47.775]The federal law is clear that it is the school district's
[00:00:51.570]responsibility to provide a full evaluation
[00:00:55.320]before serving students through special education.
[00:00:59.310]In other words, there is no FAPE,
[00:01:02.390]no free appropriate public education,
[00:01:05.160]without an evaluation to determine
[00:01:07.620]the students' needs and strengths.
[00:01:09.920]The evaluation is the foundation upon which
[00:01:13.190]an appropriate education program is built.
[00:01:18.200]This is one of the most important parts of IDEA,
[00:01:22.030]it's in the introduction, and it's talking about
[00:01:25.640]the purpose of special education.
[00:01:27.810]This is what it says.
[00:01:29.510]The purpose is 'to ensure that all children'
[00:01:32.000]'with disabilities have available to them'
[00:01:35.480]'a free appropriate public education'
[00:01:38.358]'that emphasizes special education and related services'
[00:01:42.060]'designed to meet their unique need'
[00:01:45.020]'and prepare them for further education,'
[00:01:48.070]'employment, and independent living'.
[00:01:51.690]This is one of the most important statements
[00:01:53.740]in the entire law,
[00:01:55.330]and we're going to revisit this in a little bit.
[00:01:59.960]Child Find is an important law to consider.
[00:02:02.960]It states, 'each school district shall adopt'
[00:02:05.570]'and implement written policies and procedures'
[00:02:07.902]'that ensure all children with disabilities'
[00:02:10.757]'residing within the district'
[00:02:12.563]'and who are in need of special education'
[00:02:14.713]'and related services are identified, located,'
[00:02:19.080]'and evaluated' as required by IDEA.
[00:02:23.380]So evaluation is actually a part of Child Find.
[00:02:30.240]What age group do you associate with Child Find?
[00:02:36.620]The answer is, all of the above.
[00:02:41.450]People often think of Child Find
[00:02:43.860]as pertaining to preschool children.
[00:02:46.360]The law states it applies to all children with disabilities.
[00:02:50.640]This means that at any point a disability is suspected,
[00:02:55.460]even if this occurs during the fall semester
[00:02:58.150]of the senior year in high school,
[00:03:00.320]the district must evaluate.
[00:03:04.090]This is a list the disabilities
[00:03:06.320]that are provided in the handbook in Kansas.
[00:03:11.689]Here you see the same list, just in a bulleted format.
[00:03:16.980]And you see autism is highlighted,
[00:03:20.120]and we will talk more about this,
[00:03:23.160]but just want you to see autism
[00:03:25.005]in the context of the other disabilities.
[00:03:30.430]The law is clear that a student must be tested
[00:03:32.930]in all areas of suspected disability.
[00:03:36.720]It brings to mind the child who may be called speech only,
[00:03:40.230]who is receiving services under that eligibility,
[00:03:45.110]but the staff does suspect that there may be autism present.
[00:03:50.890]And the law is clear, if you suspect a disability,
[00:03:54.780]you must test in that area.
[00:03:57.070]Sometimes the staff is worried what the parents' response
[00:04:00.870]will be to that suggestion that an additional evaluation
[00:04:05.416]in the area of autism is needed.
[00:04:08.570]And I get that concern,
[00:04:12.060]and it's not always an easy discussion to have,
[00:04:15.950]but there are appropriate staff members in the district
[00:04:20.810]who are able to have that conversation,
[00:04:25.162]and it's important that the school district
[00:04:30.154]goes through the procedures that the law requires.
[00:04:33.950]This is one of them, if you suspect a disability,
[00:04:36.980]you provide the evaluation, or at least recommend it.
[00:04:43.430]In 2011, OSEP sent a letter to state directors
[00:04:47.840]of special education regarding RTI.
[00:04:53.719]The letter states that 'states and LEAs have an obligation'
[00:04:59.330]'to ensure that evaluations of children'
[00:05:02.150]'suspected of having a disability are not delayed or denied'
[00:05:06.910]'because of implementation of an RTI strategy'.
[00:05:11.443]It goes on to say, 'it is critical'
[00:05:14.207]'that this identification occur in a timely manner'
[00:05:17.120]'and that no procedures or practices result'
[00:05:19.890]'in delaying or denying this identification'.
[00:05:23.750]'It has come to the attention'
[00:05:25.200]'of the Office of Special Education Programs, OSEP,'
[00:05:28.650]'that in some instances, local education agencies'
[00:05:33.040]'may be using response to intervention, RTI strategies'
[00:05:37.730]'to delay or deny a timely initial evaluation'
[00:05:42.603]'for children suspected of having a disability'.
[00:05:45.990]So what OSEP is saying is that,
[00:05:49.830]not that it's not okay to do RTI with children
[00:05:53.148]who are suspected of having a disability,
[00:05:56.620]it's fine to do that, it's good to do that.
[00:05:59.040]But you cannot put off a referral for an evaluation
[00:06:05.130]for special education if a disability is suspected.
[00:06:09.642]You can do those things simultaneously, RTI and IDEA,
[00:06:14.470]but you cannot delay a referral for evaluation
[00:06:18.995]in order to start the RTI process.
[00:06:24.742]Let's look at how autism is defined by Kansas,
[00:06:30.490]by IDEA, and by the DSM.
[00:06:35.300]IDEA defines autism as
[00:06:37.870]'a developmental disability significantly affecting'
[00:06:41.380]'verbal and non-verbal communication and social interaction'
[00:06:45.690]'generally evident before age three'
[00:06:48.153]'that adversely affects a child's educational performance'.
[00:06:52.350]'Other characteristics often associated with autism'
[00:06:55.180]'are engaging in repetitive activities'
[00:06:57.850]'and stereotyped movements,'
[00:06:59.660]'resistance to environmental change'
[00:07:01.567]'or a change in daily routines,'
[00:07:03.753]'and unusual responses to sensory experiences'.
[00:07:09.018]You can see here that the definition of autism that's used
[00:07:14.290]in Kansas is very similar to the federal definition.
[00:07:18.810]The highlighted phrase here is where the difference lies.
[00:07:22.870]It says that autism is 'generally evident before age three'
[00:07:27.610]'but not necessarily so'.
[00:07:31.010]So the a definition of autism used in Kansas
[00:07:34.422]is actually a little broader, allows for more students
[00:07:38.710]to be included under this definition
[00:07:41.461]than the federal definition does.
[00:07:46.720]So the two definitions are almost identical,
[00:07:50.390]and states have the freedom to use definitions
[00:07:56.530]that include more students, they do not have the freedom
[00:08:00.160]to use definitions that exclude more students
[00:08:03.520]than the federal definition would.
[00:08:07.000]You can see that the diagnostic manual has addressed autism
[00:08:11.190]in a range of ways since the 1950s.
[00:08:14.760]We're going to look at how the current diagnostic manual,
[00:08:18.770]the DSM-5, addresses autism.
[00:08:23.981]The DSM-5 moved from the previous PDD,
[00:08:27.930]pervasive developmental disorders,
[00:08:30.060]with a range of disorders related to autism,
[00:08:33.850]to autism spectrum disorder.
[00:08:36.972]In the DSM-IV-TR, there were three symptom areas,
[00:08:41.740]it's what we used to call the triad,
[00:08:44.570]communication, social, and repetitive behaviors.
[00:08:47.840]In the DSM-5, two of those areas were collapsed,
[00:08:51.520]so now there are two symptom areas.
[00:08:53.810]Number one is deficits in social communications
[00:08:56.970]and number two is restricted,
[00:08:58.570]repetitive patterns of behavior.
[00:09:01.817]In the social communication and social interaction area
[00:09:06.580]there are three characteristics that are listed,
[00:09:09.950]and you see here it's three out of three.
[00:09:12.980]So the DSM-5 suggests that an individual should have
[00:09:17.997]all three of these characteristics
[00:09:20.501]in order to have the diagnosis.
[00:09:23.980]And you can see what the characteristics are here,
[00:09:27.270]social-emotional reciprocity,
[00:09:29.540]deficits in non-verbal communication,
[00:09:31.790]and deficits in developing, maintaining,
[00:09:34.270]and understanding relationships.
[00:09:36.020]And I'll just tell you ahead of time
[00:09:37.960]that the second one, the non-verbal communication,
[00:09:42.030]is one that requires the most training and,
[00:09:47.450]the best skills to be able to recognize
[00:09:53.280]the non-verbal characteristics of autism.
[00:09:56.760]And sometimes it's so oversimplified
[00:09:59.850]that someone will say something like,
[00:10:01.280]well, he made eye contact, so he can't have autism.
[00:10:05.080]And that is very much oversimplified and it is problematic,
[00:10:11.381]and people who are working in the field of autism evaluation
[00:10:16.627]need to work hard to get a better understanding
[00:10:20.140]of non-verbal communication and how it can be impacted.
[00:10:26.450]Especially, I'm gonna add here,
[00:10:28.890]if you're working with girls or women.
[00:10:32.431]In the restricted repetitive patterns
[00:10:34.720]of behavior, interest or activities,
[00:10:36.750]there are four characteristics that are listed.
[00:10:39.461]The recommendation is the individual
[00:10:41.530]have two out of the four characteristics.
[00:10:44.340]You can see they include stereotyped
[00:10:47.390]or repetitive motor movements, use of objects or speech,
[00:10:51.360]insistence on sameness, restricted interest,
[00:10:56.000]and then sensory hyperactivity,
[00:10:59.530]hyperreactivity, or hyporeactivity.
[00:11:04.630]Some things that were definite improvements in the DSM-5
[00:11:08.771]are including the sensory component of autism.
[00:11:13.157]The vast majority of individuals with autism
[00:11:16.300]do have significant sensory differences,
[00:11:18.880]and that needs to be considered when we do the evaluation.
[00:11:24.082]Another great improvement is the inclusion of catatonia
[00:11:28.530]as a specifier, and if you don't know what catatonia is
[00:11:32.730]I encourage you to look it up and to learn more about it.
[00:11:37.910]Catatonia is a disorder that as many as 18% of people
[00:11:43.340]on the spectrum, especially once they hit early adolescence,
[00:11:46.980]are likely to have.
[00:11:48.530]So if 18% of the population has it,
[00:11:51.461]the likelihood is that if you're working with a group
[00:11:55.190]with autism you're going to encounter catatonia as well.
[00:11:58.740]You need to be able to recognize it.
[00:12:00.950]So we can't go into that further here, but just a note
[00:12:05.010]about how important it is to consider catatonia
[00:12:07.860]whenever you are considering the possibility of autism.
[00:12:11.240]And the DSM-5 also makes clear
[00:12:15.310]that the symptoms must be early present, but,
[00:12:19.430]it's important to know that the characteristics
[00:12:23.230]may not become fully manifest until the demands,
[00:12:27.750]the social demands on the individual,
[00:12:30.567]outpace their capacity to adjust to them.
[00:12:34.380]So when that's likely to occur
[00:12:38.320]is around the middle school age.
[00:12:42.290]So sometimes we'll see high functioning kids
[00:12:45.270]make it through elementary school without being identified,
[00:12:49.700]but the social demands of middle school and high school
[00:12:54.020]are so high that those students,
[00:12:57.155]their differences become more apparent.
[00:13:02.000]Here is the Kansas definition of autism again,
[00:13:05.400]and here you see something different that is in bold.
[00:13:09.350]And that is that autism is a disability
[00:13:12.291]'that adversely affects a child's educational performance'.
[00:13:19.230]That adverse effect is sometimes called
[00:13:22.690]the second tier of eligibility.
[00:13:25.360]In order for a student to be determined
[00:13:28.210]to be eligible for special education services,
[00:13:31.710]they must first have the characteristics of the disability.
[00:13:36.270]And second, they must have an adverse effect,
[00:13:39.860]it must adversely affect their educational performance.
[00:13:46.010]Once we know that an individual has a disability
[00:13:48.930]that leads to adverse effect, then we know that the student
[00:13:52.670]requires specially designed instruction.
[00:13:57.150]Specially designed instruction means
[00:13:59.870]that instruction is adapted to address
[00:14:02.110]the unique needs of a child with a disability.
[00:14:07.440]This is a list of potential ways that a disability
[00:14:11.770]may have an adverse effect on educational performance.
[00:14:18.150]How many of these adverse effects on educational performance
[00:14:22.180]may result from autism?
[00:14:25.810]All of these might be an outcome of autism,
[00:14:29.218]and all of these may result in an adverse effect
[00:14:33.320]on educational performance.
[00:14:37.230]Because of the underlying characteristics of autism,
[00:14:40.750]many students with autism have difficulty asking for help.
[00:14:45.820]Many of them make irrelevant comments
[00:14:49.180]when they are participating in a class discussion,
[00:14:52.200]they may say something that seems
[00:14:55.950]completely tangential to the discussion.
[00:14:59.530]They also often have difficulty with conversation,
[00:15:03.080]with starting, joining, or ending a conversation.
[00:15:07.979]So how does a school decide whether or not
[00:15:11.440]the communication challenges related to autism
[00:15:14.212]are having an adverse effect on educational performance?
[00:15:19.160]One helpful thing to do, a helpful process,
[00:15:22.780]is to think about what is the purpose of special education?
[00:15:26.440]Why are we providing these services?
[00:15:28.620]And the reason is to prepare students with disabilities
[00:15:32.190]for further education, employment, and independent living.
[00:15:36.610]So look at a student's challenges
[00:15:39.430]in the area of communication, and ask yourself,
[00:15:43.230]would this difficulty result in difficulty
[00:15:48.750]with further education, employment, or independent living?
[00:15:52.420]And for each of these, the answer is pretty clear.
[00:15:57.520]Does asking for help, difficultly asking for help,
[00:16:01.860]will that have a longterm impact in further education
[00:16:05.097]and employment and independent living?
[00:16:07.910]Asking irrelevant questions, difficulty with conversation.
[00:16:12.020]What's it going to be like to be at a job interview
[00:16:15.640]or to work in group projects in a class in college
[00:16:22.590]if the student has difficultly with conversation?
[00:16:25.550]So when you ask yourself, is this having adverse impact,
[00:16:30.240]ask yourself what is this going to do,
[00:16:33.270]if we don't help this student to make a difference
[00:16:36.330]in these characteristics,
[00:16:38.240]then how is it going to impact them in their further
[00:16:42.380]education, employment and independent living?
[00:16:44.710]Because that is the whole reason
[00:16:46.320]that special education services exist,
[00:16:49.310]to make a change in those outcomes.
[00:16:53.630]Here are our two tiers, the evaluation to determine
[00:16:58.210]whether or not the characteristics of the disability
[00:17:00.980]are present is the first tier,
[00:17:03.660]the second tier is adverse effect,
[00:17:06.910]and in this case we're looking at whether or not
[00:17:09.400]the communication challenges would have an adverse effect
[00:17:12.670]on further education, employment, and independent living,
[00:17:15.700]and then if that is true, then we have eligibility.
[00:17:25.720]Many students with autism
[00:17:27.160]have difficulty with problem solving skills.
[00:17:30.800]They may become stressed
[00:17:32.520]whenever they're given a new task to do
[00:17:35.690]or when things change a little bit.
[00:17:38.130]They may have difficulty seeing the connection
[00:17:41.630]between their behavior and the consequences,
[00:17:44.810]so they keep making the same mistakes over and over,
[00:17:49.150]because they can't see the big picture
[00:17:50.750]and see that the consequences are connected to the behavior.
[00:17:55.090]So we ask ourself, would this have an adverse effect
[00:18:00.690]on educational performance?
[00:18:03.800]In answering the question,
[00:18:05.600]do these problem solving challenges have an adverse effect
[00:18:09.160]on educational performance, it is again helpful to look at
[00:18:14.110]how they relate to further education,
[00:18:16.750]employment, and independent living.
[00:18:19.280]And it's very clear that in order to be successful
[00:18:22.870]in any of those areas, students are going to need
[00:18:25.370]to have skills to deal with novelty, to deal with change.
[00:18:29.310]And they're going to need to understand
[00:18:32.580]the relationship between the behavior
[00:18:34.777]and the consequences of those behaviors.
[00:18:37.520]If they don't understand that relationship,
[00:18:42.350]there are going to be social challenges,
[00:18:46.000]some students end up with legal challenges.
[00:18:49.500]Adulthood can be very difficult
[00:18:54.490]if that problem solving concern hasn't been addressed.
[00:19:03.010]Let's look at problem solving skills
[00:19:05.310]from the perspective of the two tiers of eligibility.
[00:19:08.780]If we've done an evaluation and we see that the student
[00:19:12.330]has the characteristics of autism,
[00:19:15.870]then we know that the first tier is checked,
[00:19:20.680]that they have the disability.
[00:19:22.630]Then we look at the adverse effect,
[00:19:26.570]and if we can see that the problem solving challenges
[00:19:30.230]are significant, and that they're likely going to interfere
[00:19:33.880]with further education, employment and independent living
[00:19:37.050]if some really good interventions aren't put in place
[00:19:40.880]then we have adverse effect, and therefore we have tier one,
[00:19:45.250]we have tier two, we have eligibility.
[00:19:49.330]You may know some students with autism
[00:19:51.350]who have difficulty with hygiene skills,
[00:19:54.080]even students who are very high functioning
[00:19:56.827]may struggle with some things related to hygiene.
[00:20:01.290]Some students have difficulty using utensils
[00:20:04.230]in the cafeteria, some students,
[00:20:06.420]even very high functioning students,
[00:20:08.580]have difficulty wiping their nose
[00:20:10.630]or cleaning their mouth when needed.
[00:20:13.360]And we ask ourselves, would this have an impact
[00:20:18.000]on further education, employment, and independent living.
[00:20:23.750]There's little question that these would have an impact,
[00:20:27.790]a significant impact.
[00:20:29.730]If someone goes to a job interview and they look unkempt,
[00:20:35.070]or their face is dirty in a way
[00:20:37.310]that makes people feel kinda nauseated,
[00:20:40.360]if they want to participate in further education
[00:20:44.333]but they're struggling with basic hygiene,
[00:20:47.480]then clearly that's going to be a problem.
[00:20:51.090]So do we have eligibility, let's look.
[00:20:56.060]If we have the characteristics of autism disability
[00:20:59.930]according to the state definition,
[00:21:02.180]and if we have adverse effect,
[00:21:04.930]and in this example the adverse effect is caused by
[00:21:09.590]difficulty with hygiene, then we have the two tiers
[00:21:13.400]of eligibility, so the student would be eligible
[00:21:16.690]for special education services.
[00:21:20.560]Here is a visual that Dr. Grossman and I developed
[00:21:23.360]at some point to look at this whole process.
[00:21:27.000]And what you see is that the purpose of special education
[00:21:32.860]is to prepare students for further education,
[00:21:35.060]employment, and independent living.
[00:21:37.170]So what do we do?
[00:21:38.620]We evaluate a student to see if they have a disability,
[00:21:42.540]and we evaluate them in functional,
[00:21:45.370]developmental and academic areas.
[00:21:47.960]And then we determine whether or not they're eligible,
[00:21:52.360]whether or not they have the disability
[00:21:55.570]and an adverse effect, and if they do,
[00:21:58.630]then we put an IEP in place that addresses
[00:22:01.590]their functional, developmental and academic needs.
[00:22:04.790]And then, because we've been thorough
[00:22:07.200]and we've looked at them as a whole student,
[00:22:10.120]then they are more likely to be able to participate
[00:22:13.880]in further education, employment,
[00:22:15.990]and independent living successfully.
[00:22:18.590]That's how it's supposed to go.
[00:22:21.290]But too often what happens is that
[00:22:24.880]we forget the functional and developmental piece.
[00:22:28.240]So we may evaluate and we emphasize in the evaluation
[00:22:34.940]how they're doing academically.
[00:22:36.810]We make eligibility decisions based on
[00:22:39.760]whether or not they're doing well academically,
[00:22:42.540]and then we do an IEP that over-emphasizes
[00:22:50.090]the academic functioning over functional
[00:22:53.107]and developmental skills, and what we end up with
[00:22:57.030]is students who are not prepared
[00:22:59.440]for further education, employment, and independent living.
[00:23:02.550]Because you cannot get ready for further education,
[00:23:05.910]employment, and independent living
[00:23:07.920]just by focusing on academics.
[00:23:12.950]A debacle is a great disaster or complete failure.
[00:23:18.340]We're going to look at two debacles
[00:23:21.200]that occur in the public schools
[00:23:23.730]related to the evaluation of autism.
[00:23:28.014]Debacle number one is the hold off.
[00:23:34.970]Think about how your district identifies
[00:23:38.510]students with learning disabilities.
[00:23:41.070]Think about the process for students with speech impairment
[00:23:44.315]and with students with emotional disturbance.
[00:23:48.990]Now compare that to the process your district uses
[00:23:53.406]to identify students with autism spectrum disorder.
[00:23:59.281]There is a widespread egregious practice
[00:24:02.500]in the United States.
[00:24:04.350]Inaction of the public schools until receipt
[00:24:07.440]of the outside, medical diagnosis of ASD,
[00:24:11.180]or even worse, the response to an evaluation request
[00:24:15.440]with a counter-request for a private diagnosis.
[00:24:19.340]This is illegal, and may deny a student FAPE.
[00:24:26.160]Here is the hold off.
[00:24:28.100]Bring us the diagnosis, we'll talk.
[00:24:31.520]When schools respond to the parents'
[00:24:35.460]request for an evaluation by saying,
[00:24:38.330]bring us another diagnosis, bring us an outside diagnosis,
[00:24:41.770]and then we'll consider autism,
[00:24:43.930]they are clearly breaking the law.
[00:24:48.180]Remember that school districts are given the responsibility
[00:24:52.670]to identify, locate and evaluate
[00:24:55.750]all students with disabilities all the way through age 21.
[00:25:00.150]So it's never going to be okay
[00:25:02.970]for the district to look at the family
[00:25:05.980]in a situation where there is suspicion of a disability
[00:25:09.250]and say, go get an outside evaluation
[00:25:13.140]and bring it back to us and then we'll consider it.
[00:25:16.980]Now, that's not to say that it's always necessary
[00:25:21.960]for people within the district to do the evaluation.
[00:25:26.260]Sometimes there aren't people within a district
[00:25:28.650]who are knowledgeable and trained enough
[00:25:30.690]to adequately complete an autism evaluation,
[00:25:35.010]and in that case it is expected
[00:25:38.470]that the school district will pay for people
[00:25:40.860]outside of the district to complete that evaluation.
[00:25:45.070]In that case, it is imperative
[00:25:47.450]that the district pays for the evaluation,
[00:25:51.450]and that the evaluation meet the IDEA guidelines,
[00:25:55.810]and that it's within the timelines that IDEA sets out.
[00:25:59.740]So it is always going to fall on the school district
[00:26:04.230]to complete the evaluation.
[00:26:08.965]Let's look at the autism identification process.
[00:26:14.482]This is a flowchart that Dr. Grossman and I developed,
[00:26:18.370]and you see on the left-hand side
[00:26:21.310]the steps that are required, are legally required,
[00:26:26.020]of school districts for evaluation.
[00:26:28.840]And on the right-hand column you see
[00:26:31.410]how a family can respond if they suspect a disability.
[00:26:38.410]Parents always have an option.
[00:26:41.580]They can seek private screening
[00:26:45.040]and evaluation if they desire,
[00:26:47.560]they can contact the school and request evaluation
[00:26:50.212]through the school, and then the school
[00:26:52.340]has a responsibility to follow their process.
[00:26:55.640]And the parents can get a diagnostic decision
[00:27:00.220]and they may then share it with the school, they may not.
[00:27:04.500]That is their choice.
[00:27:09.010]On the left-hand side,
[00:27:10.800]all of these steps are required procedure.
[00:27:17.100]Notice that no place in the flowchart
[00:27:20.140]allows for the school to tell the parents
[00:27:22.430]to go get a diagnosis and come back.
[00:27:25.000]The law does not allow for that.
[00:27:30.760]Are you ready for debacle number two?
[00:27:33.560]Debacle number two is called the false dichotomy.
[00:27:38.100]You may have heard some statement similar to,
[00:27:42.500]a medical diagnosis is different from educational autism.
[00:27:49.750]It's important to remember that there is no such thing
[00:27:53.770]as a medical diagnosis of autism, it doesn't exist.
[00:28:00.443]The Center for Disease Control in 2018 says,
[00:28:05.180]'diagnosing autism spectrum disorder can be difficult'
[00:28:08.590]'since there is no medical test, like a blood test,'
[00:28:11.910]'to diagnose the disorder'.
[00:28:13.910]Professionals 'look at the child's behavior'
[00:28:16.930]'and development to make a diagnosis'.
[00:28:20.650]The Autism Society says,
[00:28:22.657]'there are no medical tests for diagnosing autism'.
[00:28:26.470]'An accurate diagnosis must be based'
[00:28:28.650]'on observation of the individual's communication,'
[00:28:31.489]'behavior, and developmental levels'.
[00:28:34.315]That means that there is no such thing
[00:28:38.180]as a medical diagnosis of autism.
[00:28:40.790]There's no medical procedure that's going to
[00:28:44.345]determine whether or not autism is present.
[00:28:48.130]I encourage you, if you use the term medical diagnosis,
[00:28:53.270]to stop using that term immediately.
[00:28:56.800]It's hard to do, sometimes it's all around us,
[00:28:59.580]people use that term, but it's not accurate,
[00:29:02.980]it's clear that there's no such thing as a medical diagnosis
[00:29:06.380]and sometimes it slants the attitude of families
[00:29:12.949]away from trusting the school district.
[00:29:16.760]Because if they go to a clinic or a hospital,
[00:29:21.380]a private setting, they may have in their mind that it's
[00:29:27.106]medical in some way, but actually the way that people
[00:29:31.560]in a clinic setting would evaluate autism
[00:29:35.343]is through the same strategies
[00:29:37.420]that people in the school district would evaluate autism.
[00:29:40.400]So they're not doing medical tests.
[00:29:45.220]But if we keep using the term medical diagnosis,
[00:29:48.800]we may leave the impression that people in a medical setting
[00:29:54.760]are more qualified to consider autism
[00:29:58.240]than people in an educational setting,
[00:30:00.220]and that's just not always true.
[00:30:05.600]Here's a question,
[00:30:07.210]and I bet you're going to choose the right answer.
[00:30:13.630]Let's compare diagnosis and eligibility.
[00:30:17.110]A diagnosis is based on a set of criteria
[00:30:20.720]such as the DSM-5, which we've been discussing.
[00:30:24.680]Eligibility is based on the federal law
[00:30:28.140]and how it defines the disability of autism.
[00:30:32.830]Diagnosis is a single condition
[00:30:35.470]with different levels of symptom severity,
[00:30:38.420]and it didn't used to be that way in the DSM-IV-TR,
[00:30:42.800]there was pervasive developmental disorders
[00:30:45.250]with a range of autism related disorders falling under that.
[00:30:49.840]However in the public schools, eligibility has always been
[00:30:54.670]a broad category referred to as autism.
[00:30:58.810]So now autism is a broad category in the schools
[00:31:03.860]and it's a broad category if it's diagnosed privately.
[00:31:09.030]Diagnosis is used in private settings,
[00:31:11.360]eligibility is used in the public schools.
[00:31:15.637]Diagnosis may be determined by an individual or a team,
[00:31:20.100]however in the schools eligibility
[00:31:22.680]must be determined by a team.
[00:31:24.850]This is a way that the evaluation process of autism
[00:31:28.530]has always had been stronger in the schools
[00:31:32.820]than it potentially is in the private setting
[00:31:35.920]because autism is such a complex disorder,
[00:31:39.690]and having professionals from different backgrounds
[00:31:42.660]contribute to the evaluation is really state-of-the-art.
[00:31:46.420]It's the way it should be done.
[00:31:48.070]Sometimes that's the way it's done in a private setting,
[00:31:50.600]and sometimes it isn't.
[00:31:52.930]Finally, the diagnosis requires
[00:31:57.570]a clinically-significant impairment in functioning.
[00:32:01.800]In eligibility, it requires an adverse effect.
[00:32:05.410]And I can remember times when I was told that
[00:32:09.426]autism in the schools was something different
[00:32:12.440]from autism in the private world because
[00:32:15.679]in the schools there had to be an adverse effect.
[00:32:18.770]And I remember being kinda bewildered by that,
[00:32:21.070]because I'm a psychologist,
[00:32:22.630]I'm trained in diagnosis, and what I know is
[00:32:25.970]in order for a person to receive a diagnosis,
[00:32:28.710]there must be a clinically-significant
[00:32:30.700]impairment in their functioning.
[00:32:32.570]So another word for clinically significant impairment
[00:32:35.450]in functioning is adverse effect.
[00:32:39.220]So it's just not true that adverse effect
[00:32:43.031]is only required in the school setting,
[00:32:46.360]there's two tiers for eligibility
[00:32:48.720]and there's two tiers for diagnosis.
[00:32:54.410]It boils down to, autism is autism.
[00:32:58.630]Whether it's diagnosis or an eligibility,
[00:33:01.920]if a person has autism in the grocery store,
[00:33:07.129]they have autism at school.
[00:33:09.310]If a person has autism at Boy Scouts,
[00:33:13.120]they have autism at school.
[00:33:15.500]If a person has autism in a clinic,
[00:33:18.500]they have autism when they go to school in the morning.
[00:33:21.380]So autism is autism.
[00:33:25.823]Do you remember the story of The Emperor's New Clothes
[00:33:29.540]where these two swindlers came to town
[00:33:31.750]and said they were making clothes for the emperor?
[00:33:35.320]And they actually weren't making anything,
[00:33:37.750]but they said that if anyone, that the clothes were magical.
[00:33:42.230]And that if anyone could not see them,
[00:33:45.010]it's because they were invisible to people
[00:33:48.110]who were stupid or incompetent.
[00:33:50.720]So that is the feeling that I used to have
[00:33:54.530]when I would hear people talk about educational autism.
[00:33:57.890]As if autism at school was something else.
[00:34:01.350]And I remember feeling like I was going crazy,
[00:34:04.690]like how is it that I am not seeing or,
[00:34:07.880]I'm not seeing something or everyone else is saying
[00:34:10.030]there's something there, but when I see it, I don't see it,
[00:34:13.150]because autism is autism.
[00:34:15.840]And finally when we made that chart and compared diagnosis
[00:34:19.500]and eligibility and I could begin to see it's because,
[00:34:24.536]people are thinking in deceptive ways.
[00:34:27.320]So don't be deceived, autism is autism.
[00:34:32.060]This pie chart shows the range of cognitive functioning
[00:34:38.380]for individuals with autism.
[00:34:40.600]You can see that the 44% refers to
[00:34:44.639]average to above average functioning.
[00:34:47.110]And we know that it's hard to get a good estimate
[00:34:51.280]of an individual's cognitive ability when they have autism
[00:34:55.090]because of the characteristics of autism,
[00:34:57.350]so these are probably under-estimates of their functioning.
[00:35:01.540]Nonetheless, it's just important to note here
[00:35:03.920]that the majority of individuals with autism
[00:35:08.200]are above the intellectual disability range.
[00:35:12.200]Many of them, most of them, well above that range.
[00:35:16.477]Strong cognitive ability sometimes
[00:35:19.730]gets in the way of eligibility in the public schools.
[00:35:23.640]We're going to talk about what the law says about that.
[00:35:27.950]The law says that if an individual student has a disability
[00:35:33.130]of autism based on the definition of autism
[00:35:37.100]in the federal law and in the state law,
[00:35:40.080]and they have an adverse effect on educational performance
[00:35:44.580]which could be in a number of areas
[00:35:46.150]that we looked at earlier, you can see some here,
[00:35:48.700]academic communication, social functioning,
[00:35:51.630]pragmatic language, emotion regulation, etc.
[00:35:55.190]If they have those two tiers of eligibility,
[00:35:58.140]then they should be considered to be eligible
[00:36:01.700]under the autism category.
[00:36:03.670]It doesn't make any difference
[00:36:05.949]if they have strong cognitive ability.
[00:36:09.300]If these two tiers are met, then eligibility is met.
[00:36:13.030]Let's look at more about that.
[00:36:15.950]A reminder, school evaluation teams
[00:36:18.910]sometimes fail to consider educational factors
[00:36:21.870]beyond traditional academics.
[00:36:24.370]As a result, academically capable students with autism
[00:36:28.810]who display deficits in socialization and communication
[00:36:32.480]that impact educational progress often are not served.
[00:36:37.100]It's important to see exactly what the law says.
[00:36:40.690]IDEA says, 'each state must ensure that FAPE is available'
[00:36:44.807]'to any child with a disability who needs special education'
[00:36:48.153]'and related services, even though the child has not failed'
[00:36:52.310]'or been retained in a course or grade'
[00:36:54.710]'and is advancing from grade to grade'.
[00:36:58.960]Here is a letter from OSEP.
[00:37:00.927]'It remains the department's position'
[00:37:03.410]'that students who have high cognition'
[00:37:06.021]'have disabilities and regular special education'
[00:37:08.693]'and related services are protected under the IDEA'
[00:37:13.602]'and its implementing regulations'.
[00:37:18.340]It goes on,
[00:37:19.800]'the department, in responding to public comments,'
[00:37:23.210]'recognized that there will be some students who are gifted'
[00:37:27.190]'but also need special education and related services'.
[00:37:32.164]Let's look at outcomes.
[00:37:34.370]When it comes to independent living,
[00:37:37.770]living outside of the parents' home,
[00:37:40.910]only 20% of students with autism after they leave
[00:37:45.830]the public schools are able to live independently.
[00:37:51.240]Let's look at outcomes in terms of full-time employment
[00:37:54.720]for students with autism.
[00:37:57.090]Across the spectrum, after graduation,
[00:38:00.390]14% of individuals with autism have full-time employment.
[00:38:06.450]So you might be asking yourself, well yes,
[00:38:08.550]but that's a broad spectrum, what about the students
[00:38:11.360]who were at the high functioning end?
[00:38:13.600]Well for students with autism who get a college degree,
[00:38:18.708]15% of them have full-time employment.
[00:38:22.960]So it doesn't matter where the individual is on the spectrum
[00:38:27.450]their full-time employment outcome is just horrific.
[00:38:31.850]If you compare that for the employment rate for individuals
[00:38:35.590]with developmental disabilities without autism,
[00:38:39.470]that rate is 79% full-time employment.
[00:38:43.720]So something is going terribly wrong
[00:38:46.550]in preparing students with autism for full-time employment.
[00:38:54.210]The unemployment rate of college graduates
[00:38:57.550]with autism is 85%.
[00:39:01.530]If you compare that to the national unemployment rate,
[00:39:06.070]that is 4.5%, then you can tell,
[00:39:11.830]that regardless of the level of functioning,
[00:39:16.770]we are just not providing the services needed
[00:39:22.640]to help these students to graduate and be employed.
[00:39:29.190]Looking at involvement in the community,
[00:39:32.120]we see that 54% of students with autism after they graduate
[00:39:36.870]were not invited to activities with friends.
[00:39:40.290]69% said that they never saw friends,
[00:39:43.900]and 65% never talked with friends on the phone.
[00:39:48.360]That's a lot of isolation.
[00:39:51.610]What do these outcomes tell us?
[00:39:54.560]They tell us that we're missing the boat
[00:39:57.414]in preparing students with autism
[00:40:00.177]for further education, employment, and independent living.
[00:40:06.070]Regardless of where they are on the spectrum,
[00:40:08.020]whether they're classic end or high functioning,
[00:40:11.180]these students outcomes are worse
[00:40:14.040]than the outcomes for any other areas of disability.
[00:40:19.120]We have got to figure out, what can we do differently?
[00:40:25.560]Are we excluding people at the point of evaluation?
[00:40:29.670]Are we looking closely enough at functional
[00:40:34.100]and developmental skills that are critical?
[00:40:37.650]Are we too focused on the academic
[00:40:41.410]at the expense of other things that are going to
[00:40:44.610]help this person to have more independence,
[00:40:47.850]and to be able to be employed etc.
[00:40:51.980]We need to reflect, we need to figure it out,
[00:40:54.990]and part of it begins at the evaluation process.
[00:41:01.400]In the same way that individuals with autism
[00:41:05.097]and high cognitive abilities are being under-identified,
[00:41:09.630]girls with autism are being under-identified.
[00:41:14.070]You've probably seen graphs where there are lines
[00:41:19.130]that are slanted upward that are showing the rapid increase
[00:41:23.330]in the rate of autism across decades.
[00:41:26.716]And it's important to note that that dramatic increase
[00:41:32.200]in identification applies only to boys.
[00:41:35.940]It's all accounted for by males on the spectrum.
[00:41:39.480]Girls are not being identified at a higher rate.
[00:41:44.680]Four boys are identified with autism
[00:41:47.680]for every girl that is identified with autism.
[00:41:51.950]There probably is a gender gap, but it's not that wide.
[00:41:57.670]More and more researchers are telling us that
[00:42:01.492]we are failing to recognize girls with autism.
[00:42:06.563]Here is our self-reinforcing cycle.
[00:42:10.990]From very early on in the 1900s,
[00:42:15.220]the descriptions of autism were based mostly on males,
[00:42:21.180]and as we do research most of the data comes from males,
[00:42:27.480]so data based on males are used as the norm for autism.
[00:42:33.680]Therefore, fewer females with autism are diagnosed.
[00:42:40.434]Then when data is taken, it's taken more from males,
[00:42:45.780]and that's what's used for the norm for autism,
[00:42:49.017]and it just keeps going.
[00:42:52.420]In general, it is easier, I'm gonna say,
[00:42:58.250]to recognize autism at the classic end of the spectrum
[00:43:03.490]than it is at the high functioning end of the spectrum.
[00:43:07.443]That said, average or above average IQ decreased the chance
[00:43:12.630]of an ASD diagnosis more in girls than in boys.
[00:43:18.417]Some quick research findings,
[00:43:21.180]girls are less likely to be identified with autism
[00:43:24.500]even when their symptoms are equally severe as boys.
[00:43:29.410]Girls tend not to be identified with autism
[00:43:32.720]until they have autism and something else,
[00:43:36.470]and it's usually recognizing the something else
[00:43:40.340]that leads to the identification of autism.
[00:43:45.240]When diagnosis does happen for girls
[00:43:48.140]it tends to be later, more delayed than it is for males.
[00:43:54.150]On an average, ASD diagnosis in females occurred
[00:43:57.475]two years after caregivers first expressed concerns.
[00:44:02.230]The average time between the first symptoms
[00:44:04.430]and diagnosis was longer for females.
[00:44:07.690]Girls with high functioning autism are identified later
[00:44:12.170]than boys, and average of two years later,
[00:44:14.350]and that delay carries on in identification in adulthood.
[00:44:20.036]In adulthood females who are identified are identified later
[00:44:24.930]than males who are identified in adulthood.
[00:44:28.460]Here's a quote from Wilkinson,
[00:44:30.280]'the consequences of a missed or late diagnosis include'
[00:44:34.150]'social isolation, peer rejection, lowered grades,'
[00:44:38.730]'and a greater risk for mental health'
[00:44:40.930]'and behavioral distress such as anxiety and depression'
[00:44:44.430]'during adolescence and adulthood'.
[00:44:48.320]We know also that there's a higher risk of eating disorders
[00:44:52.780]and that people on the spectrum including females
[00:44:56.590]have a higher rate of being bullied and of being assaulted.
[00:45:00.520]So that delay of two years or more is a delay
[00:45:06.320]that is very consequential for females on the spectrum.
[00:45:11.670]Why are girls and women under-identified with autism?
[00:45:17.109]Girls with autism have different communication
[00:45:21.890]and social challenges than boys with autism do,
[00:45:25.840]so often families and professional will attribute
[00:45:30.820]their difficulties to the fact that they're just shy,
[00:45:35.900]or they're a little bit anxious.
[00:45:38.420]And for that reason, the girls aren't referred,
[00:45:42.740]or if they are referred, the focus is on the anxiety
[00:45:46.810]and not on the big picture, which may be underlying autism.
[00:45:54.110]The places on these brains that are highlighted in red
[00:45:59.987]indicate places where there are physical differences
[00:46:04.830]in the brain between boys with autism and girls with autism.
[00:46:11.070]We have to assume that these physical differences
[00:46:15.050]lead to functional differences.
[00:46:17.963]And if we are basing our descriptions of autism on males
[00:46:25.179]and we know that the brains are structurally different,
[00:46:29.090]then it's going to lead to us missing
[00:46:32.700]some of the characteristics of autism in females
[00:46:37.350]that we need to learn how to identify.
[00:46:42.550]Compared to boys on the spectrum,
[00:46:44.840]girls on the higher end of the spectrum
[00:46:47.110]have fewer special interests,
[00:46:50.030]better superficial social skills,
[00:46:52.800]better language and communication skills,
[00:46:55.820]and less hyperactivity and aggression.
[00:46:58.870]So when we are doing an evaluation,
[00:47:01.800]we need to compare girls with other girls
[00:47:06.370]in their environment, not with boys with autism.
[00:47:10.930]We need to see, is this girl having difficulty functioning
[00:47:15.390]compared to other girls in her environment,
[00:47:19.238]and that difference is significant.
[00:47:24.515]This is a description of the results of a 2016 study
[00:47:30.396]using the social responsiveness scale and the ADI-R
[00:47:35.889]that found that females with autism
[00:47:39.435]'had substantially lower levels of restricted interest'
[00:47:43.840]'that could not be accounted for by measurement bias'.
[00:47:50.440]These researchers concluded that because girls have
[00:47:54.980]less prominent restricted repetitive behaviors
[00:47:57.980]that people in their environment
[00:48:00.030]may fail to refer them for evaluation,
[00:48:04.534]and if they are referred that they are often misclassified,
[00:48:09.260]and the underlying autism is missed.
[00:48:19.210]You see here a list of special interests
[00:48:21.490]that are common among girls on the spectrum,
[00:48:25.130]and you see that they're very social in nature.
[00:48:29.000]They include animals, pop groups,
[00:48:31.310]princesses, imaginary friends.
[00:48:34.027]These are interests that a lot of little girls have,
[00:48:37.500]but they're different in the individual on the spectrum.
[00:48:41.600]Another social interest that you will often see
[00:48:44.980]in girls on the spectrum is their best friend.
[00:48:48.360]They may be a little bit more possessive of that person
[00:48:51.080]and they may focus on them more than is typical.
[00:48:57.300]You may be familiar with the work of Francesca Happe,
[00:49:00.790]she's doing some of the best research in the area
[00:49:04.780]of girls and women on the spectrum.
[00:49:06.830]And I'm gonna read this quote because I can't improve on it.
[00:49:10.160]She says, 'a girl with autism may be fascinated by horses'
[00:49:14.000]'or by a particular pop star'.
[00:49:16.220]'This isn't unusual among girls,'
[00:49:18.473]'and may not stand out as much as a boy who is obsessed'
[00:49:22.650]'with the Latin names of plants, for example.'
[00:49:25.130]'But the intensity and narrowness'
[00:49:27.980]'of her interest is unusual'.
[00:49:30.110]That's the thing to keep in mind.
[00:49:32.310]She may be interested in things that a lot of other girls
[00:49:35.730]are interested in, but focus on, in trying to figure out,
[00:49:40.270]is this a meaningful, special interest,
[00:49:43.680]focus on whether or not it's extremely intense.
[00:49:48.050]Is it actually in some ways
[00:49:50.600]getting in the way of her functioning?
[00:49:53.380]That's a critical thing to take note of.
[00:49:57.460]Right now it's just not possible to find enough
[00:50:01.520]good test instruments for looking at autism in females.
[00:50:07.540]The norms are going to be biased towards identifying males.
[00:50:12.090]If you use cutoff scores, then most experts in the field
[00:50:16.240]right now are saying that you need to adjust
[00:50:19.850]the cutoff scores downward so you have a greater likelihood
[00:50:24.600]of capturing females who aren't
[00:50:26.890]well-described in the instrument.
[00:50:29.130]Other people are saying don't use those cutoff scores,
[00:50:31.840]just use the information that you gather
[00:50:35.020]and use your good clinical judgment,
[00:50:38.880]but don't apply an unfair cutoff score to females
[00:50:43.940]that you are doing evaluations with.
[00:50:48.440]This is just a quote from the DSM-5
[00:50:51.410]that supports the idea that the diagnostic criteria
[00:50:54.350]were formulated on the basis of how autism looks in boys.
[00:50:59.410]Here's another quote from the DSM-5.
[00:51:02.623]It says that 'in clinic samples females tend to be'
[00:51:05.460]'more likely to show accompanying intellectual disability,'
[00:51:08.890]'which suggests that girls without accompanying'
[00:51:10.933]'intellectual disability or language delays'
[00:51:14.130]'may go unrecognized,'
[00:51:16.550]'perhaps because of subtler manifestation'
[00:51:19.360]'of social and communication difficulties'.
[00:51:22.400]And I would say here that you want to think about that
[00:51:26.710]carefully because girls with autism completely have autism,
[00:51:32.410]it's full-fledged autism, it's not subtle autism.
[00:51:36.400]It's only subtle because right now
[00:51:39.030]people who are doing the evaluations
[00:51:41.240]don't have the discernment to recognize
[00:51:44.650]what female autism looks like.
[00:51:47.270]But they are fully autistic
[00:51:49.690]in the way that females are autistic.
[00:51:52.150]And it is important for us to get better
[00:51:56.344]as evaluators at recognizing that autism,
[00:52:00.110]and not just excuse it by saying well, it's subtle.
[00:52:06.820]The law tells us that we have a responsibility
[00:52:10.260]to identify students with disabilities.
[00:52:13.320]And that includes high-functioning girls with autism.
[00:52:19.260]We've already talked about how that's difficult sometimes
[00:52:22.730]to recognize girls with autism because
[00:52:25.330]they look different boys with autism.
[00:52:27.790]To make matters worse, there's something called masking,
[00:52:32.140]blending, acting, pretending, mimicking, camouflaging.
[00:52:36.250]It depends who you're talking to what term they use,
[00:52:40.250]but this masking or camouflaging
[00:52:43.960]can make it very difficult to recognize the autism.
[00:52:48.600]Attwood says that 'girls with Asperger's syndrome'
[00:52:51.620]'may be more difficult to recognize and diagnose'
[00:52:54.820]'due to coping and camouflaging mechanisms'
[00:52:58.517]'which can also be used by some boys'.
[00:53:01.233]'One of the coping mechanisms is to learn'
[00:53:03.443]'how to act in a social study'.
[00:53:06.357]So some girls actually study the people in their environment
[00:53:10.660]identify someone who is socially successful,
[00:53:14.100]and take on the characteristics of that individual.
[00:53:18.090]These authors say that the special interests
[00:53:20.690]of some girls is other people.
[00:53:24.550]So they observe, analyze and imitate behaviors
[00:53:28.340]of other girls, and adopt the observed persona
[00:53:32.200]in their interaction with others.
[00:53:34.530]As evaluators, we have to be very astute
[00:53:37.530]to recognize what behaviors have just been taken on
[00:53:41.360]as a persona, rather than are really understood
[00:53:45.720]by the person who's exhibiting them.
[00:53:50.350]This is a quote from Rudy Simone,
[00:53:52.330]who is a woman on the spectrum.
[00:53:54.370]She says, 'I don't think females with ASD are rarer.'
[00:53:57.850]'There really is a very burgeoning awareness'
[00:54:00.970]'that women on the spectrum are better actors.'
[00:54:03.660]'There is more pressure on us from childhood'
[00:54:06.740]'to be social and to behave in a way'
[00:54:08.830]'that is not shocking or strange.'
[00:54:11.020]'We are good actors, and for most of us'
[00:54:14.280]'that's why we go undiagnosed or misdiagnosed'.
[00:54:18.150]It's important to know that that is also
[00:54:21.470]why they are stressed and exhausted.
[00:54:26.150]Everyone that I know on the spectrum who masks,
[00:54:30.960]who camouflages, talks about or I have observed,
[00:54:35.517]the time after they camouflage,
[00:54:40.360]there's a price that they pay.
[00:54:42.230]They may begin to stim, they may begin to rock,
[00:54:46.020]they may begin to make noises,
[00:54:48.400]they may have to spend a lot of downtime alone
[00:54:52.746]in a quiet space, they may have to get a lot more rest
[00:54:58.870]than other people, and that is because there's such a cost
[00:55:05.070]to the energy that has to be put into camouflaging
[00:55:10.933]when the person is in neurotypical company.
[00:55:18.020]One final legal issue to consider
[00:55:21.200]is whether or not autism is primary.
[00:55:25.240]We know that the vast majority of individuals
[00:55:27.470]who have autism also have another disorder.
[00:55:33.330]Both the federal law and the state law,
[00:55:35.540]when they're defining autism,
[00:55:37.360]at the end of that definition say, 'autism does not apply'
[00:55:42.480]'if a child's educational performance is adversely affected'
[00:55:47.479]'primarily because the child has an emotional disturbance'.
[00:55:53.160]That means that sometimes schools have to consider
[00:55:57.998]whether or not ED or autism is primary.
[00:56:05.400]And what we believe,
[00:56:10.230]by we I mean Dr. Grossman and I, Barry and I,
[00:56:12.811]we believe that autism is almost always primary.
[00:56:19.030]Here's one of the things that we consider.
[00:56:21.840]The definition of primary.
[00:56:24.270]Primary means of chief importance,
[00:56:27.380]or earliest in time or order of development.
[00:56:31.640]If you look at the importance,
[00:56:33.680]autism is a pervasive developmental disorder
[00:56:37.050]and it involves motor functioning and emotional functioning,
[00:56:42.740]social functioning, communication, etc.
[00:56:46.890]It is so broad and so,
[00:56:49.700]and relies so much of the functioning of the individual
[00:56:53.170]that it is difficult to imagine that it is not primary.
[00:56:59.770]Think of the sentence where you say that
[00:57:02.840]somebody had autism for so long that they became anxious,
[00:57:09.090]someone struggled with autism for so long
[00:57:11.690]that they became depressed.
[00:57:13.470]Now try to turn that idea around.
[00:57:15.600]Someone was anxious for so long that the became autistic.
[00:57:19.560]Someone was depressed for so long
[00:57:22.570]that they developed autism.
[00:57:24.230]That doesn't make any sense, it doesn't work.
[00:57:26.528]In your mind it makes sense that autism is primary.
[00:57:31.972]And so it is earlier in the time of development,
[00:57:36.240]especially when you consider that autism needs to be
[00:57:40.240]apparent, is usually apparent, by the age of three,
[00:57:45.890]and even if it isn't apparent it's there,
[00:57:48.470]it just hasn't come to its full manifestation
[00:57:51.750]because of the social demands in the environment.
[00:57:54.850]And then you look at the genetic factors,
[00:57:58.160]it is difficult not to consider it,
[00:58:00.300]as far as the order of the development, primary.

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Educational Identification of Autism Spectrum Disorders: the Law and Eligibility in the Schools

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