Dr. Sharp: Hello, everyone. Welcome to The Testing Psychologist podcast, the podcast where we talk all about the business and practice of psychological and neuropsychological assessment. I’m your host, Dr. Jeremy Sharp, licensed psychologist, group practice owner, and private practice coach.
This episode is brought to you by PAR. PAR has recently released the Feifer Assessment of Childhood Trauma, or the FACT, the first and only comprehensive instrument measuring how stress and trauma can impact children in a school-based setting. You can learn more or purchase the FACT teacher form by visiting parinc.com\fact_teacher.
Hey, everyone. Welcome back to the podcast. Today’s guest, Dr. Robb Mapou is an ABCN board-certified clinical neuropsychologist practicing in Rehoboth Beach, Delaware, and Chevy Chase, Maryland.
For 30 years, he has specialized in the evaluation of adolescents and adults with learning disabilities and ADHD. However, for almost 10 years, he has been seeing individuals for evaluation of autism spectrum disorders as well. He also evaluates individuals with neurological conditions including memory deficits, dementia, traumatic brain injury, and stroke.
Dr. Mapou is a consultant to the Federal Aviation Administration, the Delaware Division of Developmental Disabilities Services, Princeton University, and Howard University. He holds faculty appointments in the Department of Psychiatry at the Uniformed Services University of the Health Sciences and the Department of Neurology (Psychology) at Georgetown University School of Medicine.
Robb is here talking with me about neurodevelopmental disorders in adults. We cover many topics during this episode. We spend a good bit of time talking about interview strategies for adults with neurodevelopmental disorders. Specific questions you might want to ask. Things to be aware of. We talk about the definition of disability and how that has shifted over the years and some of Robb’s changing thoughts on that construct. We also spend a fair amount of time on disability law and the relevant guidelines when we’re considering accommodations for different neurodevelopmental disorders. So lots of information to take away from this one.
It was a pleasure speaking with Robb. We met two years ago at an AACN conference, compared tattoos, and shared tattoo stories. And it was nice to get into a clinical context and really tap his expertise. So, I hope you enjoy this one. There’s a lot to take away.
Now, if you’re a testing practice owner and you are looking for some group coaching and accountability or support, I would invite you to check out The Testing Psychologist mastermind groups. You can get some info at thetestingpsychologist.com/consulting and book a pre-group call there. There are enrolling cohorts for both beginner practice and intermediate practice groups that should start in the new year. So if that’s interesting, check it out, schedule a pre-group call and we’ll figure out if it’s a good fit for you.
All right. Let’s get to my conversation with Dr. Robb Mapou.
Dr. Sharp: Hey, Robb, welcome to the podcast.
Dr. Robb: Thank you. I appreciate the opportunity to be here.
Dr. Sharp: I love the opportunity to be able to talk with you. I first got your book on testing for ADHD in college students or young adults whenever it came, 10 years ago. Was that 10 years ago? Maybe 12.
Dr. Robb: The publication date is 2009, but it actually dropped in the fall of 2008, like many books do that are published that time a year.
Dr. Sharp: Yeah. I got that book and it was kind of a revelation. I just loved having all the explicit instructions and ideas and specific questions to ask. It was really valuable for me there for a long time. I’ve held a lot of those ideas. It’s so great to have you. I feel honored that you are here.
Dr. Robb: Well, thanks. It’s my minor contribution to the field. And then now, a little bit out of date both in terms of the tests that we use as well as the evolution of the law, since then, perhaps a more important consideration.
Dr. Sharp: That’s true. I wonder if we might get into some of that here as we talk?
I usually open with this question of why this particular work is important to you. I know that it was maybe more important in the past a little bit, but I’m curious, how did you stumble into this whole area of assessing ADHD and learning disorders?
Dr. Robb: Well, at the time I started the work, actually my primary work was research on the effects of HIV and AIDS on the brain. I was doing a part-time practice with a group in Maryland, suburbs of DC. I had started there in 1992/1993. That was shortly after the Americans with Disabilities Act had been implemented in 1990. And what was happening was that the practice was getting more adults who were being referred and wondering about learning disabilities or ADHD.
And so, wanting to be evidence-based, I started looking at the literature in the area to see, is there anything by which I can guide my assessments? And that population was my primary work for many years because that is what that practice did. The specialty was learning disabilities and ADHD.
And as I looked at the literature, and there wasn’t very much. In the mid-90s, a book came out on assessment of learning disabilities in adults from folks down at Georgia State in their system there. Not Georgia State, the University of Georgia. And around the same time, Kathleen Nadeau published her book on Adults with ADHD. And then we had the Hallowell and Ratey book Driven to Distraction that was really popular, but included so much in there that could or could not be ADHD that from a clinical standpoint, that was hard to apply.
I started with those books and then started looking at other literature and gradually accumulated enough to go out and start doing some workshops on the topic, which I guess was somewhere around 1997 or so. And I started with a one-hour freebie workshop for the Maryland Psychological Association. And then it grew to three hours and then six hours and then 12 hours.
What I often found in doing this work back then is that a lot of the reports that I would see did not adequately document the disability or the impact of the disability. They were brief psychoeducational evaluations that did not look at the underlying cognitive and language deficits that often go along with learning disabilities.
When I began dealing with accommodations for High-Stakes testing in particular for the United States Medical Licensing Exam, the board exam, and then before that, the MCAT, the LSAT, I often had people referred who had been turned down. And that was largely because the evaluations were not thorough enough, didn’t demonstrate the disability well enough, and didn’t describe the impact on functioning beyond taking a standardized test because if it’s really a disability, it should be affecting all aspects of your life and not just test performance.
And so, my reputation in being able to do these evaluations grew. I would get referrals. I did some appeals sometimes involving attorneys and was able to get people accommodations when they hadn’t been able to do so in the past. But that was also with a thorough credible job on these evaluations and trying not to overstate the data and turn what might’ve been a relative weakness into a disability.
Now, granted, my thinking on this topic has really evolved over the years. And I looked back at some of my earlier writings on this book chapters. At that time I was more comfortable with the concept of, well if a person has average reading and writing skills and they have intellectual abilities of 120 or 130, they’re not able to read and write at the same level of their reasoning skills and their thinking skills.
And for a while, I thought that was an acceptable definition of a disability. But over time, I began to really question that and began to look at the fairness issue. If your skills are really in the average range, what does that mean for the person who has an average intellect and average reading and writing skills? Why shouldn’t they get accommodations compared to the person with 120 or one 130 IQ and getting accommodation? So I became more conservative in doing that.
The other thing that I noticed over time is that a lot of people just wanted the accommodation whereas intervention could be very helpful in terms of improving the skill. And yet people often didn’t want to do the work. It’s kind of akin if we look at ADHD to wanting a pill just to fix everything when in fact the problem could be depression, anxiety, overall stress level, a sleep problem, something that would take a lot more work to “fix.” I continued to see that over time.
My impression is perhaps what’s happened over the last 20 to 30 years, is that there is this expectation for everybody, for stellar academic performance. And if there is not stellar academic performance, the parents begin to think something is wrong and they seek out an evaluation. And to me, the purpose of the evaluation is to figure out what the problem is and what to do about it. And that might or might not be accommodations or medication, but as I saw more people who the only thing that they wanted was an accommodation on a test, I said, I’m not sure I’m the best person for you to see.
And that truly was my bread and butter for many years, and I never would have done that. Perhaps I changed in my approach also because the folks I work with now, many of whom are on the autism spectrum, some of whom have very complex histories with a lot of psychiatric overlays that needs to be teased out as to whether it is secondary to autism or really it’s the primary disorder, these folks are struggling with life. Taking a test is the least of their worries.
I was struck by this level of disability. I also began wondering about, well, what does it really mean to have a learning disability or to be impaired by ADHD? That has had an impact on my thinking of this. These days, I do far less of this. Most of my ADHD work ends up being undiagnosing people who want to be a pilot or an air traffic controller and are referred by the Federal Aviation Administration for an evaluation because somewhere along the way they read they’re diagnosed with ADHD, were treated with a psychostimulant without a diagnosis, and we have to figure out is that the true diagnosis?
I still do diagnostic evaluations though. Sometimes these are combinations. I’ve got two right now that I’m working on both with questions of, is this ADHD, autism, or both? It’s really the process of doing that that again, I find lacking in a lot of evaluations. That is what I try to focus on. The detailed process of really applying the diagnostic criteria and seeing if people meet those criteria. I don’t know if I did meandering a little bit too much from your question.
Dr. Sharp: No, I think you’ve managed to touch on about seven crucial points and ideas in our field right now over the last five minutes. So the challenge is which direction to go. I’m going to go, though with the philosophical question that, of course, turns into a reality.
I wonder what thoughts you have about one of the points you touched on or maybe alluded to, which is the increase in prevalence or diagnostic rates for maybe ADHD or people seeking accommodations. Autism certainly is in there. It’s just skyrocketing. That’s a very open-ended question, but I trust that we can find our way through it.
Dr. Robb: When it comes to ADHD, I’m not convinced that the prevalence has really changed in any way. Autism is another story because they do seem to be large population studies that indicate that the prevalence has been increasing. I can’t remember the figures right off the bat though I have compiled them for a recent workshop that I did for the FAA.
We’re not sure the reasons behind that. It may be because we are looking now at folks who may be highly intelligent but lack social skills, have problems with flexibility, have intense interests that occupied their time to the detriment of other things but are still really, really smart. And often when I see that, they’re the folks who are really struggling to move forward in life because of the impairments.
But with ADHD, there is nothing that seems to indicate the prevalence is increasing. I really think that social media has driven a lot of people to self-diagnose. I’m not on TikTok or Instagram or any of these places, Reddit, that people look, but there is so much out there right now where people are telling their stories about having ADHD or being on the autism spectrum. Other folks look at this and they begin to think, again with what happened with ADHD and now many ways autism, maybe this explains the difficulties that I’ve had.
Now, for autism, if you’re an adult, there really is no treatment. There is no pill. It’s more I think a desire of people to figure themselves out, to conceptualize themselves. I’ve got two cases there right now, one of which may actually fit, and the other, I don’t think it does. These are all neurodevelopmental disorders. And again, the big piece that I find missing, even in evaluations from institutions or individuals who are considered competent in the area, what I often find missing is the thorough developmental history, especially with a parent and preferably some record reviews, because that’s where the information you need to make the diagnosis is.
Again, with ADHD, someone may rely on an evaluation entirely on self-report on a rating scale and not bother to look at someone’s history. I saw this in the case of, again, a person who wanted to fly who had had a stellar military career as an enlisted officer, had risen through the ranks over the years, had nothing in a childhood history that would suggest ADHD, but his kid got diagnosed. He started thinking, hmm, maybe these are similar, went to a military mental health professional, and got diagnosed without the person really taking a look at the stress he was experiencing in his life, the increased stress of a new job, and the fact that he kept getting promoted without difficulty.
That history is not typical of someone with ADHD. And yet he got diagnosed by several different people. Treated for some 10 years. Now, he wants to fly planes and the FAA says, at this diagnosis, you have to go get evaluated for it. But that historical piece is what I often find is missing. I found that missing in my early cases where people were turned down to accommodations because no one had documented that the difficulty had been there since childhood.
Dr. Sharp: Sure. You’re touching on some pretty important pieces here. I wonder if we might dig in and talk about some details. So you mentioned the thorough diagnostic interview, certainly record review. I know some of the writing that you have done on this topic, you have some pretty extensive questions that you’re asking in that interview. Can we dive into some of that and just talk through it here?
Dr. Robb: Yeah. That again really started with the work in learning disabilities and ADHD. I just recently finished the chapter on interviewing adults for neurodevelopmental disorders, autism spectrum disorder, attention deficit, hyperactivity disorder, and specific learning disorders, with a very brief- two paragraphs on intellectual disabilities, which are a lot easier to deal with in an adult because there’s going to be a history.
In there, I have tables of information that one should collect in an evaluation through a combination of interviews with the patient, informants- preferably parents, review of academic records, medical records when relevant. And it’s really a semi-structured approach of what should be covered in these evaluations. It’s going to be in a book that is edited by Yana Suchy and Justin Miller specifically focused on interviewing adults during a neuropsychological assessment. So they’re going to talk about, how do you interview adults when the question is dementia or other traumatic brain injuries, and so on? And so this is on neurodevelopmental disorders.
It gave me a chance to pull together my thoughts on, okay, what do I really want to ask? What information do I want to collect? And now before I see someone, I’ll actually print out a copy of the table, make sure that I cover everything. You can’t always get everything. Often parents may not remember. Again, in some of those cases, I’ll bring in a sibling to interview as well.
But to me, these are, I mean, to everyone, they should be, neuro- meaning-affecting the brain, developmental disorders, which means they start in childhood. You don’t suddenly get ADHD as an adult. There has to be some into that. The same is true of learning disabilities and the autism spectrum. The problem may not become impairing until the demands of life exceed your capacities. And there are certainly very specific points when that happens, but the interviewing and the record review allow you to see, okay, what were some of the hints of these problems that were going on before?
Dr. Sharp: Yes. I would love to ask you about some of those points where the impairment becomes more evident. Do you find that there are any consistencies or commonalities between people where they start to show up?
Dr. Robb: Yeah, definitely. So the key areas to look at are really to start during those first years of life, infancy, toddler years, kindergarten. You are looking for any evidence of developmental delays in the language area, in the social area, emotional and behavioral regulation. There are often hints of that.
Sometimes with intervention, these problems go away and the kid is fine, but then they may re-emerge at certain points. So beginning of school, learning to read, write, sit still in class, become important or less important in kindergarten or in the toddler years. This is where you may first see the manifestations of a specific learning disability or ADHD. But in kids who are really bright, you may not see that at all.
Socially, during those early years, during the elementary school years, you have parents who are doing a lot of the ranging of social events and structuring it. So for kids on the autism spectrum, things may be less noticeable because they are not expected to be out there arranging their own social events.
4th and 5th grade is the time when, as it’s been described, now you’ve learned to read. Now you have to read to learn. So again, problems in the learning disability area may come out at that point because the reading may not be smooth. Kids may not be comprehending what’s going on. So that’s another point where kids may be coming in for an evaluation.
In the middle school years, there are increased demands on executive functioning and increased demands on forming your social group and finding your place. And the middle school years can be very difficult for kids with ADHD or on the autism spectrum. We see a fair number of kids that the social problems really become obvious in those middle school years whereas prior to that, the quirks that were there, the little professor syndrome, pedantic newness with adults. Adults may have gone, oh, wow, that’s really cute. I can really talk to this kid. It’s not so good when they can’t talk to their peers in middle school.
High schools see more demands on executive functioning and social skill. At the same time in high school, kids who are quirky find a group of kids who are quirky and fit in with that group. College, now, the young adults are off on their own. Even more demands on executive functioning and expectations for independent social functioning. So that’s another point where someone may come in for an evaluation.
And then finally, post-college, it may be that person has never been able to settle on a career. Failure to launch. Is unable to escape from their parents because they’re not able to get a job with which they can support themselves. For people with ADHD, it’s often the issue of not being able to focus and sustain attention on something that’s not of great interest, which emphasizes really the importance for folks with ADHD to find things for which they have a passion that will engage them and will help with that.
Dr. Sharp: Right. It sounds like it, which maybe makes intuitive sense, but when you lay it out like that across the lifespan, I think it’s nice to get that big picture view. It’s really like this transition points that we need to be paying attention to and really digging in to see what’s happening, right?
Dr. Robb: Exactly. It’s different from an acquired neurological condition where you’re going along, going along, going along and something happens. So you have a significant brain injury, for older adults or even some younger adults, a stroke, onset of symptoms, and multiple sclerosis. There’s been normal functioning all along.
In this case, again, the concept is that these deficits may have been present, but up to a certain point you’re able to cope with them, and then you reach a point where the demands on social functioning, on attention and executive functioning, on written language, exceed what your capabilities are and then that leads to the assessment or to the referral.
Dr. Sharp: Sure. So one of the things, I want to pull out this thread of, again, you touched on earlier, but this difference between disability and maybe inconvenience, that’s maybe not the right word, but you know what I mean. I’m so curious how you think about this and how that’s defined because I think that gets back to our discussion of self-identification or self-diagnosis. Who gets to define disability and impairment? is that us, is that the client, is it some combination? How do we sort through that?
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Dr. Robb: Well, that’s a good question. That’s what I grapple with. I think back to some of the earlier cases, in particular, one particular girl who I first saw I guess when she was 14 and she didn’t have extreme deficit. She was an average kid at that time, but her reading and spelling skills were lower if I recall this correctly. I ended up diagnosing her with dyslexia. She did reading intervention. And I think back, and this was like, I can’t think of the word right now that I’m looking for, but it really made a difference in her life.
Let’s fast forward to now. She is a professor at an esteemed university teaching other students how to get around problems with executive functioning. I helped her get accommodations along the way. And I look back and I’m thinking if I saw her now, has my standard changed? Would I diagnose this differently? Because by any standard, at this point in her life, she’s not disabled. She is excelling. She is doing very well.
And I also think back, she came from a family of very high achievers. Everyone in her family is either a doctor or a lawyer. And how much did that shape what she was going to be like, because indeed she was different from the other kids there, but now she has succeeded in her own field very well? I’d like to think that that diagnosis in the intervention really helped her.
Dr. Sharp: It sure sounds like it.
Dr. Robb: But then I wonder, if she came to my office now, would I look at this in the same way?
Dr. Sharp: Yeah, I’ve asked that question myself too on a smaller scale. I tend to see younger kids under 18 years. So, I see a kid at 5years old and make whatever diagnoses and then they return at 10years old or 12years old and they’ve had a lot of intervention, and I think man, I’d be hard-pressed to make that same diagnosis now.
Dr. Robb: That speaks to one of the things that have influenced me where I have diagnosed maybe a mild disability. I’m dealing with a case right now, someone I saw back in 2016. He had a pretty well-documented history of learning disability and ADHD if I’m recalling correctly. At that time he was in college. He had had a bit of a Rocky college course. He left. Came back. He was getting ready to wrap things up and he wanted to go to medical school. So, of course, the goal was to get accommodations on the MCAT.
I looked back because he recently contacted me. He said, I never took the end MCAT, but they did give me accommodations. They said, either I need to have a full updated evaluation or a letter stating that there really is no need and the problem is unchanged. And I looked back and it was interesting because what I said in the evaluation was, he’s had 50% time. Based upon the data that I have, I would recommend 25% time, but because this is what he’s had, and this is what’s led to success, and we can talk about, by the way, the arbitrariness of that 50% figure, I’m recommending this for that reason. And I’m recommending this on the MCAT, Medical School USMLE, and so on.
The MCAT indeed granted him most of the accommodations but did give him 25% time, but with off-the-clock breaks for ADHD, which effectively can end up being 50% time. For whatever reason, he never took the MCAT. He ended up getting certification as an EMT and doing that work for a while and then returned to school, got accommodations again because it had been documented previously, and now wants to take the MCAT again.
Essentially, my approach to this case was, I spoke with him and I said, I looked back at your data and the thing I would caution you about is that based upon these data, I don’t think you’re going to get accommodations on the USMLE. You may get them on the MCAT, but I think the USMLE the US medical Licensing Exam is going to look at this and say, it doesn’t really meet up to the ADA definition of disability. It won’t be worth the fight. You’ll be better off doing some type of intervention if test-taking skills are still an issue for you.
It was interesting. He said to me, “I’m not really interested in that. I’m not thinking about that down the line. I think I’ll do okay. I’m just looking at the MCAT now.” So I said, all right, I don’t see the point in doing a full evaluation. And I wrote a letter stating here’s what I found back then. Here’s what I recommended back then. Here’s what he got back then. I tested him as an adult. He was 21. I don’t have any reason to believe the profile has changed. So give him the same thing again.
But there are other cases where I ended up in a position of having to recommend accommodations where I really didn’t feel the testing agency would approve it. And that became uncomfortable. I’ve gotten referrals in recent years, for example, United States Medical Licensing Examination Accommodations where I’ve said to the person, it is very tough to get accommodations. I’m willing to see you, but it’s with the understanding that we look at the profile and testing and decide, do you really qualify for accommodations or should we move in the direction of intervention?
I happen to know a really good program that helps with test-taking skills for this. It’s called STATMed Learning at West Virginia. They are very successful in teaching people test-taking skills. In some cases, I have had people say, okay, I’m willing to do that, and in other cases, sorry, all I want is the accommodation. And I said, “In that case, I’m really not the best person for you to see.”
Dr. Sharp: Sure. I think you owe it to the client to prep them ahead of time if you can see that coming down the road, right?
Dr. Robb: Yeah. I’ve been doing this now for 30 years. I’ve seen the testing agencies, that’s something that we can talk further about, which has to do with the changes in terms of testing agencies that began around 2012 or so, where we’ve since seen a shift. And it might be interesting to talk a little bit about the history of the ADA and the ADA Amendments Act of 2008 which has shifted the landscape in the last 5 to 10 years.
Dr. Sharp: Got you. Yeah, I think it’d be helpful to at least touch on that to provide a little bit of context for the rest of our conversation. Yeah, if we can touch on that.
Dr. Robb: So the Americans with Disabilities Act, the original one was passed in 1990. In 2008, the ADA Amendments Act was passed. And that was really designed to deal with invisible “disability” such as learning disabilities and ADHD. So different areas of life functioning were added because the ADA was really geared toward visible disabilities, physical disabilities that were quite obvious: blindness, deafness, things that were clearly there except that the application more and more was focused on invisible disabilities. So the ADA Amendments Act of 2008 was designed to remedy that.
Now, you may recall from high school civics class that once a bill passed the Congress, they have to write regulations to implement that. And so, in 2011, the Equal Employment Opportunity Commission wrote regulations to implement the ADA Amendments Act.
And, again, the issue was to cover people with less severe impairments and really to focus on discriminatory conduct as opposed to whether or not one had a disability. And so, some of the definitions changed. It became less stringent and there was the acknowledgment that you can’t consider mitigating factors. For example, a person with ADHD may take medication, but they may still be disabled. And a disability could be cyclical, for example, a seizure disorder or multiple sclerosis. There also was a decreased emphasis on doing the types of more extensive evaluations that we do. And so we start, well, they should rely on what was described as common-sense judgment.
Now, there’ve been documentation guidelines issued first by the Association on Higher Education And Disability in the late 1990s, and also by the Educational Testing Service that basically said, here’s what should be in a good evaluation of learning disabilities or ADHD. And they were expanded to other disabilities as well. But then, in 2012 after the EEOC regulations were issued, the Association on Higher Education And Disability did a review of that and said, Hmm, what really should be best practices for recommending accommodations? And so with their best practices, there was a decreased emphasis on written reports and an increased emphasis on self-report and observation say by a disability support professional.
Now, at that time, I was on the board of the National Academy of Neuropsychology (NAN) and we began getting queries from neuropsychologists saying, “Hey, what are we supposed to do? This is going to eliminate an area of practice for us.”
So I spoke with the then president of the Association on Higher Education And Disability. And basically what he said was these guidelines were meant for disability support professionals say at a college and not for psychologists. We’re not saying that there should be no documentation, but the bottom line is that in their guidelines of best practices, they said primary documentation should be the student’s self-report. Secondary documentation is observation and interaction with the disability support professional. And down after that, tertiary documentation was a formal report or IEP or something.
And actually, a lot of disabilities professionals pushed back and said, this is asking us to be armchair psychologists and make this decision. We really can’t do that. But the idea was laudable because it was to reduce the burden on the student, to reduce the expense on the student. And this certainly could help out students from lower SES who were not able to afford this type of evaluation. That piece is really important.
In early 2014, the department of justice issued their interpretation of the ADA Amendments Act of 2008. It essentially paralleled the EEOC regulations, but it was really prompted by increased complaints to the justice department about people who were turned down for accommodations on national examinations, the LSAT, CPA, other professional examinations.
And so again, the justice department said, there shouldn’t require extensive analysis. You really should consider the evidence of a disability, not just from a clinical report. Then in May 2014, the Law School Admission Council administers the LSAT, settled a class-action lawsuit for people who had been turned down for accommodations. And I will say that one of my own clients at that time was involved with this lawsuit as a key plaintiff in the lawsuit. I had a few other people who were subsequently affected by the decision.
LSAT at that point said, they’re no longer going to flag when accommodations were given because that would always be a key to the law school that something was different and they wouldn’t require an updated evaluation if the same accommodations being requested were granted previously on a college entrance exam or a GED, or in fact, another standardized test, let’s say the GMAT. They developed a panel for best practices, and then there was a compensation fund as well.
In 2015, the expert panel recommendations for the LSAT came out. And what they said was documentation for the LSAT from the age of 13 and older should be accepted without needing an updated evaluation. Now, the problem that I had with that is a 13-year-old brain is not the 22, 23, 24-year-old brain because we know the frontal lobes mature and the brain changes. But I thought that was significant.
In September 2015, the civil rights division disability rights section of the US department of justice issued recommended practices on testing accommodations in terms of what a testing agency should accept is the documentation for accommodations. And again, recommended that they should not be stringent. Some of the things that should be accepted included just simply a recommendation from a qualified professional, proof of past testing accommodations, observations from educators. Number four on this list is the result of psychoeducational or other professional evaluations, an applicant’s history of a diagnosis, and an applicant statement of his or her history regarding testing accommodations.
Now, this in some ways, brought us back to the situation that prompted the first guidelines in the late 1990s, because at that time someone would come in for accommodation, say in college or elsewhere with a note from a psychologist or a psychiatrist, “Dear testing agency, Johnny has been diagnosed with ADHD and he should get 50% extended time on tests. Thank you. Doctor specialist.” And so the guidelines for documentation have risen out of that, but this almost seemed like a return to that. I can come back to that with a recent case shortly.
So really since 2015, again, what DOJ said, if a candidate has previously had the same accommodations on a standardized test or in an IEP or a section 504 plan or in a formal plan in a private school or even informal accommodations, they should get the same accommodations on a standardized test. Period.
Dr. Sharp: This seems to just fly in the face of a lot of my experience and I’m guessing others experience too.
Dr. Robb: And this in a lot of ways is how we’ve seen the atmosphere change. They also said, testing agencies should defer to the opinion of a qualified professional over the opinion of “testing entity reviewers” who have never conducted the requisite assessment of the candidate. So they’re really saying, testing agencies should count on a reviewer. If a report comes in and says they should have the accommodation, they should.
And then October 2016, the DOJ put regulations into place for this. And really, my read on this, the implications is that since the testing agencies and universities are increasingly being pressured to accept an evaluation, regardless of when it was done. A poorly done evaluation that does not show data consistent with the requested accommodation should be accepted. And if there’s an IEP and evidence of prior accommodations, an evaluation might not even be required.
But consider the case of a kid who’s identified in 1st grade. They’re diagnosed with a specific learning disability. They get immediately into good evidence-based intervention, which we know exists for improving reading skills and can make a world of difference. Jack Fletcher and his colleagues have written about this in their book.
We know that early identification and intervention can ameliorate or at least decrease if not even eliminate the problem. Although again, at those transition points that I mentioned, the problem may re-emerge, but also what if the initial documentation was poor? What if that report done in 2nd grade really only showed relative weaknesses, and they immediately went to accommodations with no intervention. I’ve seen this. Then that can get carried through over time.
The school just updates the IEP or the 504 plan with no new evaluation. Then you get to the SAT, and the SAT basically says, okay, they’ve had the accommodation for a year. We’ll give them the same accommodation. And then you see the same thing happen with GRE, GMAT, LSAT, MCAT. It keeps getting passed down when in fact nobody has bothered to ask, huh, have they improved?
I see a lot of college students that because of the volume of reading and writing they have to do in college, they get better at it. And after four years, they’ve improved, they’ve tested better. Again, as I said earlier, the 24-year-old brain is not the 13-year-old brain, the frontal lobes improve with time.
There’s also the issue of self-report. If you’re relying on that alone, it can be motivated by secondary gain. And there are plenty of websites, blogs, et cetera, on how to convince people to give you accommodations, how to convince your doctor you have ADHD. So the kids can go out there and they want to get an edge. They want to do better. The diagnosis is not equivalent to a disability. And so if you don’t do an updated assessment, you’re not going to have data about a person’s functioning.
Again, since then, we’ve continued to see […] I think of the definition of disability, even at the legal level. Now what we’re seeing is a lot of schools, a lot of colleges are dropping SAT or ACT requirements. Law schools are dropping LSAT requirements. February 2016, for example, the University of Arizona College of Law said they accepted the GRE instead of the LSAT. Other universities were considering this. By May 2019, 40 law schools were accepting the GRE.
And so, I think we’ve really seen an evolution of this. In Canada, for example, my colleagues there have said that again, a simple note from a physician can speak to the issue of disability and the need for accommodation. So their testing centers there don’t need to do anything and are shutting down. 2016 colleges and universities in Canada can not require a diagnosis. They may only request a note from a healthcare professional stating the functional impairments that require accommodations and requested accommodations.
Dr.Sharp: I understand the rationale and the intent to honor a client’s experience and not put them through any number of unnecessary evaluations. And this seems like it’s going too far, at least.
Dr. Robb: It does fit in with the concept of nothing about me without me and the advocacy within different communities of neurodiverse folks. And that isn’t a bad thing. Frankly, if we got rid of time tests, that would solve the problem. Do we really need time tests?
Dr. Sharp: That’s a great question.
Dr. Robb: I’m guessing in the pandemic, we see less of this. Reportedly, I think there’ve been articles about more cheating during the pandemic. But again, is it fair to that student who is just average and is not getting accommodations if the person of 120 or 130 IQ and average reading gets the accommodation? This has affected clinicians. It’s another reason why I don’t like doing as much of this work because essentially you’ve got parents who want extended time to help a child reach his or her potential.
That wasn’t the purpose of disability law. The purpose of disability law was to provide access to a test. Then the parents complain, “Well, Johnny who is sitting next to my kid over there is getting extended time even though they don’t have an obvious disability. So why should my kid be penalized?” They think extended time will solve the problem.
What I found with ADHD is that college students I see with ADHD, it ain’t the tests, the issue is sitting down and getting the work done. So they’re putting off studying till the last minute or not studying at all. They’re not getting assignments done. They need an executive functioning coach. They may need medication, but 50% time on tests doesn’t make any difference. And there’s some research that kind of bears that out.
Dr. Sharp: Yeah. I was just going to say, I feel like I’ve read that, that the extended time accommodation isn’t actually that helpful for kids or adults with ADHD.
Dr. Robb: Yeah. And there is some work, again, my colleague, Allyson Harrison who I think would be a great person to interview if you haven’t interviewed her yet.
Dr. Sharp: We did. She and Julie were on the podcast maybe a year ago. I don’t know. I’ve lost track of time, but they talked about this. Well, they talked primarily about evidence-based assessment for ADHD and how to determine whether someone has ADHD.
Dr. Robb: What Allyson has also done there with a special issue, and she’s actually working on a new one in psychological injury and the law, they talked about testing issues, and they did one study where they looked at how much time students in Canada received for as an accommodation, and how much time did they actually used.
And they found that the vast majority of students use no more than 25% extended time, if not less. And many students finished the test within the allotted time. They were really able to do an ecologically valid study looking at the amount of time that students were using. And it was way less.
In the UK, the extended time has always been like 25% or 33%. That seems to work for people. Earlier, I talked about 50% being arbitrary. Somebody just pulled that out. I don’t know where it came from. There was never any empirical support that said, oh, this is the amount of time you should give it.
Dr. Sharp: And you make those recommendations, where does that come from? Is there any grounding in data?
Dr. Robb: There really is no good grounding in data. What I look at is the degree of slowness on time tests. On the Nelson Denny Reading Test, do they finish it within the standard amount of time or not? Although frankly, the norms on the new Nelson Denny Reading Test, I think are much more realistic and way less conservative than the old norms. I have seen maybe some low average scores. It’s also now age normed, which is way better than being grade norm. So I highly recommend the new version of the Nelson Denny to get a read on reading, no pun intended.
But we still don’t have any empirical studies that say, if this test, then give this amount of time. I sort of laid a little bit of that out in my book in a series of charts there, but nowadays, I look carefully, I will ask the person, okay, you have 50% time, how much time do you really use? And more often than not I hear, well, no, I don’t use the full amount of time. Sometimes even I hear, I actually don’t need it.
Dr. Sharp: I hear that a lot as well.
Dr. Robb: I think that’s an important question to ask. But again, I think there’s a lot of pressure on evaluators because the parents believe the extended time will solve the problem. And then they’re unhappy when they don’t get what they want, especially when they’re paying for a private evaluation because these are considered educational so insurance doesn’t pay.
There’s a belief that the extended time will ease anxiety during tests and improve performance, but performance anxiety is not a disability. And then, when you get to the college level, the students want the extended time on classroom standardized test scores so that they could get into the prestigious college, graduate school, medical school, law school, and so on. There’s a desire to have psychostimulant medication to gain an edge when studying and taking tests. Things have just gotten so competitive. I’ve described this as like wanting to lose weight or build muscle without working out. You got to do some work to build the skill when the skill is weak rather than just simply accommodating that.
So, that combined with the types of folks with these complex issues who are not managing life very well has really moved me away a lot from doing these evaluations. I will do them occasionally provided that I have a client who’s willing to listen to what I have to say. It’s not if I ask for your opinion, I’ll give it to you. If they’re coming to me as a professional presumably because I have some expertise and if they’re not really interested in that expertise and they already have an agenda, it’s best for them not to see me.
Dr. Sharp: Yeah. I think it’s nice to be clear in that and to find a script or a way to say that to clients because I think a lot of us get drawn into wanting to “help.”
Dr. Robb: So, this podcast will definitely not help increase my referrals, but that’s fine because I’m trying to be semi-retired. So, I don’t need more referrals at this stage of my career.
Dr. Sharp: Anti-marketing. Tell the truth. Well, let me ask you one last question before we wrap up. And this is just a very applied question. Doing any kind of evaluation like this for adults with neurodevelopmental concerns, record review is a big part of these evaluations. So I’m really curious how you handle it when you can’t get records or the adult says, I don’t want you to talk to anyone in my family. We’re estranged. It’s not private, whatever.
Dr. Robb: That’s really tough. It’s a little bit easier with a learning disability because that’s where the tests themselves tell you what’s going on. With autism spectrum, with ADHD, which are behaviorally diagnosed disorders for which you need a history and current symptoms, it is a lot tougher. And I may say I’m not able to make a definitive diagnosis. I can tell you what I think this might be, but I will say in a report I could not establish a childhood history of ADHD, and just leave it at that.
And it’s kind of like, well, here are the problems that you’re having in everyday life. If you want to talk to your doctor about stimulant medication at this point, that’s between you and your doctor. I think because of the problems that you’ve told me about with planning, organization, getting work done, you would really benefit from an executive functioning coach, whether or not you have ADHD.
And I’ve said this same about the autism spectrum. I’ve told some people, I’m not really sure if you meet the criteria, but I do think that a group like PEERS® for Young Adults, which is an evidence-based group, might help you in what you’re struggling with. And so the diagnosis doesn’t really matter. It’s what we do about it.
In a case I’m dealing with right now, a young woman, again, came in with questions of being on the autism spectrum. She’s very successful in her work. She seems to have very good people skills, can read nonverbal cues. If she wasn’t able to do this, she wouldn’t be as successful as she has been. And there was a triggering event when her behavior changed. I basically said to her, we were hooked in very well, and I said to her, the diagnosis at this point doesn’t matter. Here’s what you need to work on. This is what you need to be doing, and it’s working on emotional regulation because that’s the biggest problem for her.
And so again, if you direct the recommendations in the right direction, the diagnosis may not matter. And those are the folks who I’m most comfortable working with. They’re interested, but it’s not like… A good question to ask at the beginning, even during an intake is, well, what would it mean to you if I don’t diagnose you with autism, or I don’t diagnose you with ADHD? How would that feel? “Well, I would be totally devastated.” Then you either have to work with that or be aware of what you’re dealing with at that point.
The main point to me of an evaluation is to figure out what am I seeing? What can be done about it independently of what the ultimate diagnosis is?
Dr. Sharp: Yeah, I think that’s a good way to look at it. And being able to communicate that to clients sometimes is challenging if they are wrapped up or invested in a certain diagnosis.
Dr. Robb: Yeah. And again, at this stage of my career, I try to head that off at the intake level to figure out, is this going to be a good match? Is this a person who I’m going to be able to work with, they’re going to be able to work with me and get something out of this, or are they looking for something else and I may not be the best match for them and that’s fine?
Dr. Sharp: Right. I think that’s a nice note to end on. I’ll take that as a boost of confidence maybe for clinicians out there to stand firm and to be able to say from the beginning, Hey, I don’t know if I’m going to be able to meet your needs. And then if I can’t, here’s what else we can do. Here’s another option or here’s what it might look like.
Well, gosh, I feel like we covered a lot of ground in this conversation and at the same time, there’s so much more that can be said on any number of these topics, but I just appreciate being able to chat with you here for an hour or so and get your expertise and your thoughts and reflections on this work that we do. I know how challenging it can be. All the nuances.
Dr. Robb: I appreciate the invitation and to have a chance to talk with you because I’ve spent a whole career doing this and I like to at least share some of this wisdom, some of this knowledge with other folks. Hopefully, some of it will stick or they’ll say, Nah, I’m just going to keep doing what I’m doing.
Dr. Sharp: I hope a lot of it is sticking. I will ask one last question. You’ve done many things over the course of your career. Where are you headed next? What’s on the horizon for you?
Dr. Robb: I’m trying to slow down. I’ve got a lot of focus on the autism work, but also I’m in an underserved area here in Delaware and I’m getting dementia referrals. It’s kind of fun to return to my roots in neuropsychology and do some of these cases though, I’ve actually been consulting with a colleague who did this day in and day out just to make sure I’m on the right track.
I’m learning more about that. I think lifelong learning is really important and probably a reason why I’ve shifted my focus over the years. If I look at what I’ve done, I trained in traditional neuropsychology with neurological patients and then moved into traumatic brain injury, severe traumatic brain injury, and then, we’ve done in the neuropsychiatric evaluation unit. For about six years, I did research on HIV and AIDSand the effect on the brain while I began to build the practice in the LD and ADHD area.
And then, I don’t know, some 10 years ago, what really happened in the practice is that we were no longer getting just run-of-the-mill learning disabilities and ADHD. We were getting much more complicated cases.
We began looking at the possibility of the autism spectrum, and I just got really interested in and intrigued by it maybe because of my own background with Ham Radio and science and nerd stuff. Never video gamed. I found the population really interesting to work with and tough because there are not a lot of resources for folks.
At this point, I’m hoping to do a little bit more consulting, less hands-on practice. And I’m really trying to slow down though it’s not working that well at this point, I hope to be doing less and focus on other things besides work.
Dr. Sharp: I hear you. Well, hopefully, folks take that away as well. That you don’t have to do the same thing throughout your career. You’ve done many things and it seems like enjoyed all of them in different ways. Thank you again. This is good.
Dr. Robb: You’re welcome.
Dr. Sharp: I hope our paths cross again soon.
Dr. Robb: I’m sure they will. Bye.
Dr. Sharp: Okay everyone. Thank you as always for checking out this episode. I hope you found it informative. I know we covered a lot of ground. There are a number of resources in the show notes. As we mentioned, Robb has done quite a bit of writing. He has written books and articles on these topics. So check those out.
If you’re interested in some group coaching or accountability, you might check out the testing psychologist, mastermind groups. We’ve got cohorts enrolling for beginner practice and intermediate practice at the start of the new year. So, if that sounds like a good fit for you, or is even mildly interesting, schedule a pre-group call and we’ll figure out if it’s a good fit. You can do that at thetestingpsychologist.com/consulting.
All right, that’s it for now. I will catch you next time.
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