Tony Mantor: Why Not Me the World

Dr. Sanam Hafiz: Unfolding Neuropsychology – From Holistic Profiling to Navigating Adulthood Challenges in Autism and Giftedness

• Tony Mantor

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Unlock the secrets of the mind with our esteemed guest, Dr. Sanam Hafiz, a leading neuropsychologist renowned for her work in trauma, ADHD, learning difficulties, and autism. 
Join us as Dr. Hafiz unfolds her intriguing journey into neuropsychology, revealing a methodology that transcends traditional diagnostic approaches. 
She shares how she crafts a holistic profile for each individual by considering family history, environmental factors, and detailed collaborations with educators. Her insights offer a fresh perspective on the vital role genetics play in mental health, applicable to all ages.

The conversation broadens to address the often-overlooked challenges faced by autistic individuals transitioning into adulthood. Hear compelling stories about the vulnerabilities in this journey, from the threat of online scams to everyday misunderstandings. 
Dr. Hafiz also guides us through essential safety measures and legal processes that can safeguard wellbeing. 
Finally, we dive into the nuanced intersection of giftedness and autism, examining the unique mental health challenges this overlap presents. 
Connect with Dr. Hafiz and engage in a dialogue that promotes a deeper understanding of these complex issues.

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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)

Speaker 1:

Welcome to why Not Me, the World Podcast, hosted by Tony Mantor, broadcasting from Music City, usa, nashville, tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Their stories Some will make you laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. Hopefully, you gain more awareness, acceptance and a better understanding for autism Around the World. Hi, I'm Tony Mantour. Welcome to why Not Me? The World. Today we welcome Sanam Hafiz, a renowned pioneer in neuropsychological assessments, with expertise in trauma, learning problems, adhd and autism. As a trusted media expert, she has received multiple honors, including faculty appointments, and is on the New York City panel of medical experts for the court systems. Since founding Comprehend the Mind in 2006, her organization has experienced continuous growth. It's an honor to have her with us today. Thanks for coming on.

Speaker 2:

Thank you. Thanks for having me on.

Speaker 1:

Oh, it's my pleasure. So if you would give us a little background on how you started and what led you to do the work that you do today.

Speaker 2:

So I have a doctorate in psychology and the doctorate was very sort of scientific for a doctorate in psychology very evidence-based cognitive behavioral therapy with a huge emphasis on assessments and evaluations. And then it turned out that I absolutely just loved it. I love the diagnostic part of neuropsychology and I ended up. My first job out of graduate school was as a neurodevelopmental psychologist in a hospital in Brooklyn. I enjoyed that immensely and I started like a small private practice on the side which evolved and became big enough that at one point I had like 100 contractors evaluating for me. And now we have a small center about five psychologists and a decent sized team that does administrative and psychometric type tasks. So I spend my time managing or directing the center, seeing patients. I see patients every day and I do some forensic and media work, like we're doing right now.

Speaker 1:

So do you specialize in any one thing with your psychology, or do you expand into other things as well?

Speaker 2:

So my specialization is assessments, is diagnostics, so you name it, you know whether it's ADHD, learning disabilities, autism and but also to parse out bipolar disorder from depression or to diagnose schizophrenia. You know, the brain is a beautiful organ but it's very small and so it's sometimes a lot of things overlap. You could have something neurological but also have something psychiatric going on.

Speaker 1:

Sure, because many times you'll see an autistic person that is also diagnosed with ADHD.

Speaker 2:

It's very common to have overlapping diagnoses.

Speaker 1:

Yes, so what's your process when a parent brings a child to you not knowing what's going on? What are the steps that they have to take to find out whether it's autism, adhd or whatever else it might be?

Speaker 2:

So it's a really well-structured and it's complex but a simple process. We start with a very detailed initial assessment that allows me to interview, and if we're going to talk about children, then I interview the parents, I interview the child, I observe, I get the teachers involved, and so we kind of develop a profile, a background. You know children, they don't exist and they're not an island. They don't exist and they're not an island. They don't exist in isolation, they're an eco, they're part of a big ecosystem that involves, you know, who lives at home, their family history, genetics, the teachers, the school, the kind of services they get, and so to do an evaluation without taking all of those factors into account would be such a disservice, as you can understand right. And so I call my initial assessment a probe. I'm probing, I'm digging, I'm asking questions, as in. So who goes grocery shopping in your home? And you'd be amazed at what a lot of simplistic questions can bring up about a family. I ask has anyone been diagnosed? And a lot of times the answer is like no.

Speaker 2:

Back in the day, no one ever went to a psychologist or a psychiatrist, or you know, my culture has been very sort of suspicious or mistrusting of mental health.

Speaker 2:

So we don't have a lot of that.

Speaker 2:

But I dig and I find out that they're often family members, relatives, people they've never met, where there was a fair history or at least a narrative that there was something going on with them mental health wise.

Speaker 2:

So I try to show families that, look, you may have a grandparent that you've never met, but their DNA has met you, right, their genes have somehow made it down to you and into your child, and it really does open up a lot of dialogue with families that have never considered that. So that's one aspect of it. Then I basically take all that data that I've gathered, a lot of the quantitative data that I've gathered, and I go back to my team and psychiatric functioning and we designed a battery of tests, a set of tests based on what the patient might have come looking for, but also what that initial assessment evoked or brought up, and I say, well, I also want to look at this, this and this, and so when we set out to test, we're looking at all facets of a child's functioning or an individual's functioning. If you were to come to my office, we would use the same exact paradigm, if you will, on you.

Speaker 1:

Okay, that was my next question. What's the difference between a five-year-old, a 15-year-old, 25-year-old or even a 35-year-old? That may come to you.

Speaker 2:

So you know it's interesting, it differs, but it really doesn't differ because people are people and so a five-year-old might have an in-progress like it's a site under construction, right? When you're five, your cognitive functioning is not set in stone yet, You're still developing. You might be getting services at the school level. You have parents that control or determine a lot of what's happening with you. A 25 or a 35-year-old are in. Even if they're adult, they're in two developmental milestones or developmental stages that are very different.

Speaker 2:

So a 25-year-old maybe someone who just got out of school, maybe someone who's getting a job and lives with a bunch of roommates, maybe someone who's struggling and has moved back in with his or her parents they may not have a lot of history about themselves, right?

Speaker 2:

So a lot of times they say if you have a parent around, especially if you have a mom around, ask her, ask her these things you know, ask her if she recalls having concerns about, let's say, let's talk about autism. I see a lot of adults very concerned that they may be on the spectrum and really almost sometimes even fighting for that diagnosis. And I say, well, if you have a parent around, ask them when you spoke, ask them when you walked, ask them how related you were, if you made eye contact, if you toe walked, if you flapped your hands, if you had tantrums. So a lot of times the adults of 25 and 35 year olds may not have a lot of historical narrative about themselves because they've never asked anyone, but I will say do you recall getting pulled out for services? Do you recall struggling when you were younger? And so that does bring up a lot of stuff that doesn't always point to autism, and so we cannot do psychiatric testing or personality measures with a five-year-old, but we can do that with a 25 and a 35-year-old.

Speaker 1:

When a parent comes to you with their child, you see that they are really struggling, not knowing exactly what's going on. Their child has meltdowns that happen from time to time. They have all the markers that point towards their child being autistic. How do you define those markers so they can go to their local charity or their local community so they can search out and find the help that they need to get them through this?

Speaker 2:

So when we do the assessment process, when they come back to us for testing, we use, like I said, a battery of tests and at the end of that assessment model is an appointment that's almost always with me to discuss the results and findings. So what they get after I give them the results and the diagnoses, they get a report, a written, detailed, 30, 40, 50 page report that entails all of that data. That entails a summary of the findings and what that means diagnoses and very detailed recommendations, because a neuropsychological evaluation can look really fancy but if you don't tell people what to do with that, it's useless, right? It's essentially doesn't mean anything, just fancy words and tables on a report. So I am very, very detailed and very committed to having people patients of mine find resources and find ways to remediate or help themselves.

Speaker 2:

Of course, when someone brings us a five-year-old, the world's my oyster, right? I can recommend a million things and hey, come back every year and a half so I can keep reassessing your kid. But what do I do with a 25 and a 35 year old that has missed a lot of time to make some of those changes? But also, life gets in the. But even if you implement three or four of the recommendations out of the 20 that I'm making. When you come, see me back in 2025, you're going to see that you're a very different person than you are now, because the change isn't going to happen overnight. But consistency is what matters.

Speaker 2:

What you said about our sound during this podcast is true for valuations and treatment as well. Consistency and a commitment to doing it day in, day out is what's going to make a big difference. And, yes, a year and a half, two years later, people come back and they are like they're born anew. But a lot of that, we just did the job of assessing them, diagnosing them and giving them the direction. A lot of that is really on them. They do the work.

Speaker 1:

Once you diagnose them you find them to be autistic, adhd or whatever the case may be Do you help them find other areas that can help them expand, learn and evolve so that they can keep moving forward with their life?

Speaker 2:

So we explain them. You know what their diagnoses mean clinically, what the implications are, why there's so much of an overlap. They start to make those connections when we give them the final report. We also give them resources. We give them resources such as psychiatrists who are in their neighborhood who take insurance. We give them psychologists or therapists in their neighborhood who take their insurance With individuals who are on the spectrum or have ADHD. We have resources in the community in New York City, entire agencies and charities that are dedicated to working with those populations. We refer them to a state agency if they're under the age of 18. There's a state agency called OPWDD. It basically stands for Office of Persons with Developmental Disabilities. It is funded by New York State. It's a federal agency. It's a state agency that gets federal funding and they can get set up for services and help basically throughout life. They get something called a Medicaid waiver and it allows them to access those services.

Speaker 2:

Now let me bring you back to that 25-year-old. Now, let's say a 25-year-old. When they turned 18 or 20, they graduated from their school's special education program. They went to an adults with disabilities program, but they also graduated from there. You can't stay there indefinitely, right, and maybe they trained them to do some sort of a job and so they have a job. You know something simplistic, perhaps you know they get mail from the office and they feel a sense of you know, community and a sense of contribution to their life. But mom says, listen, I'm getting older and I'm worried that my son may have a job, but he can get taken and these are real stories, by the way. My 25-year-old autistic son goes online and has gotten scammed and we've had to get the police involved. Or my son ignored the jury duty notice three times till we got a warrant or something. These are things that happen to people because you don't wear a sign on your chest that says I'm autistic and a lot of autistic folks look very neurotypical. You can't tell.

Speaker 1:

That's so very true. I've said right along that the reason why some charities have a difficult time raising money is because it's a mental issue that can't be seen With that said, what can we do to help people and help change that dynamic?

Speaker 2:

So one of the things that I've been a huge advocate for is how do we keep them safe? Right Safety is a big deal and I recall this one patient I was seeing, since he was maybe 14 years old. The last time I saw him he was maybe 17 or 18. No, the time before last I said to his dad I said, look, your son is autistic. But he does not look autistic. I mean, I don't know what, even what? That is right, a lot of people don't. And I said if something happens and he had suddenly grown to be very tall and very big, if something were to happen in public, if he reacts, if he bolts, he just looks like a big black guy and I worry about him because what does that mean?

Speaker 2:

The next time dad comes back and he goes, dr Hafiz, I've got to tell you he had a seizure. He passed out in a McDonald's. When he woke up there were cops looking at him, ems, and he bolted and he was a big guy and I had asked him to have him make and this is like 10 years ago I had asked dad to maybe make a bracelet and make him wear it. That said hi, my name is so-and-so, I'm autistic. And when the cop saw that he told everyone stop, stop, stop, you're going to freak him out, he's autistic. And the dad was like, had I not done that? I am really shook by what could have happened to my son that day.

Speaker 1:

Wow, that is just such a great idea and such a great story for people to hear.

Speaker 2:

So it's important for parents aging parents sometimes to take stock of their child's situation and say what happens to them when I'm gone. So I then also guide them towards what we call surrogate court. It's a court that allows you to bring a case to the judge, to the court, and say this child has profound developmental disabilities. They cannot make decisions for themselves. They may be intelligent on paper, but they have autism or a defining disability that will not allow them to make that decision. So I need to be able to assign another adult to either take full guardianship, which the courts are not crazy about, or specifically financial and medical guardianship or conservatorship. So there are ways to address, but you have to address everything. You can't just be like, okay, we'll put them on medication, that'll be the end of it. You got to teach them skills, you got to get them into job training, but you also got to take care of the legal end of things. That's what I try to do with that end goal in mind.

Speaker 1:

So you diagnose. Once you have your diagnosis complete, do you follow through with them or do you direct them to other people that can help that may be closer to them where they live? How do you get that network together so they have that safety net in place to help them through any particular crisis, just in case something doesn't go as planned?

Speaker 2:

Yeah, so we do both. We do follow up with them. We do an evaluation in another year and a half, but we're not a treatment facility, so we connect them to a lot of treatment providers psychiatrists, therapists, like I said, charities, institutions, agencies then they then provide the services we recommend in our reports.

Speaker 1:

Yeah, that makes sense. So now it's the big unknown. When a parent brings their child between four and eight, or eight to 10, or even as much as 12 years old, it's the big unknown. They don't know what's going on, they're confused. They see all these things that it could be, they hear all the stories, they hear everything. They're just really totally overwhelmed, because the biggest fear and unknown is that most people, when first introduced to autism, they just have no clue as to what it is and what it's about.

Speaker 2:

So that's a huge debate. When I started working, autism had very clean, clear demarcations. If you were not fully autistic, like textbook autistic, we could look for features of Asperger's or people who are maybe PDD NOS. We used to call them pervasive developmental disorder, not otherwise specified. There were a couple of other types of autism called Rett syndrome or childhood disintegrative disorder. When the DSM-5 kind of redid autism we got rid of all of those terminologies. We just made it one big spectrum of autism Over the pandemic and I can tell you because I've been in practice and in the center doing assessments for almost 18 years now over the pandemic people had a lot more time on their hands and a lot of people were taking to social media and obviously it's not a bad thing that there's so much awareness of stuff.

Speaker 2:

But there were articles being written that could not quite capture everything about what autism is and the idea of neurodivergence really gained popularity. We went back to work and we only took maybe about three months off. When we went back to work, you know, the idea of autism sort of exploded. Everyone wanted to come in and be evaluated and assessed for autism. Everyone was neurodivergent and there were some people who wouldn't take no for an answer.

Speaker 2:

So it kind of became frustrating because you know I have actually said these exact words. But if you knew you were autistic, why did you bother coming to see us? You know we're people with licenses and doctorates and two or three decades of experiences. I've got other people in my team who've been practicing for longer than me. So I would tell them look, we are not just giving you expert opinion with clinical discretion, we're also using standardized tests to tell you whether you're autistic and if you're not, what else might be going on that could mimic or look like autism. And a lot of times people are very grateful for it, and there are a lot of times that it's primarily to do with autism, where people are so married to the idea that all their difficulties stem from autism that they're unwilling to accept what else it might be.

Speaker 1:

Yeah, that's very interesting. So tell me, what have you found that mimics autism, where people think they might be autistic but in reality they're not?

Speaker 2:

Yeah, I mean, look some people and let's talk about adults for a minute. They might just have certain personality traits. A lot of times I find that that's not always the only thing. They usually have a parent who also might have been on the spectrum or looked like they were on the spectrum, people who are, you know, back in the day we would call quirky or odd or peculiar. And yeah, in younger children for the longest time Remember the diagnosis I said PDD-NOS. So if there was a child who, let's say, wasn't speaking yet or speech was a big part of the problem and they were having temper tantrums and someone suspected autism but we didn't have enough information about it, we might just give them PDD-NOS.

Speaker 2:

So to this day now we have better tools and better understanding of autism and if there are some other things going on, you know, very often I've put in reports and I've explained to the families that your child may have had a diagnosis of autism, but your child also is intellectually deficient. So it's hard for us to parse out the low cognitive functioning, the low intelligence, from autistic features, and so this is why we need to see him again in a year and a half. So features, and so this is why we need to see them again in a year and a half, so we can. You know, it's sort of like the oil and water it separates and you get to see the different things. With older people not children, but let's say teenagers or adults we notice a tremendous amount of overlap in people who might have pretty severe ADHD, maybe some social, emotional immaturity and a lot of times anxiety or OCD. So a lot of rigidity around. Things can look like autism, especially if you combine it with neurological neurodivergence, like ADHD.

Speaker 1:

Wow, that's pretty interesting. So is there anything else that can mimic autism within adults?

Speaker 2:

Sometimes people who have severe social anxiety and can't make eye contact can appear autistic to the naked eye. Sometimes people with even mood disorder, ptsd and bipolar disorder can appear autistic if there's enough of a neurological spin to the way they present outwardly. And we do these tests, these very sensitive standardized tests like IQ testing, and there's a measure for autism called the ADOS. It's the Autism Diagnostic Observation Schedule. We also give them self-reporting scales and then we observe them through several sessions and it's a team effort and it's not always black and white, but we're able to tell them hey, this test comes up. Yes, you rated yourself pretty high as autistic. But when we did the ADOS, which is a clinician administered test, you were able to have a lot of reciprocal conversation.

Speaker 2:

Not only did you make eye contact, you were able to integrate nonverbal communication with verbal communication. For instance, you're sitting there, you're nodding. I can see your eye blinking exactly when I say something. You're holding your chin as I'm talking, I'm using my hands, I'm gesturing in emphasis, even though the majority of people, who are all of the people who are listening to me, are not going to be able to see this. But this is the integration of nonverbal communication into verbal communication. Autistic individuals have a very difficult time with that. They can learn eye contact to some degree, even though it looks tilted and awkward or forced. They cannot learn how to do this and they cannot learn how to do this at the same level that I'm doing it right now. So those are the things that you can't always put into words or really explain to a lot of people who really believe that they check off all the criteria maybe on paper, but not when I see them.

Speaker 1:

What other information could you give us for any parent that may be thinking their child might be autistic?

Speaker 2:

If you are a parent, for instance, and you're listening to this and you're wondering about your child, look for things like eye contact. Look for a child having a really difficult time. And I don't mean a child who is having a temper tantrum because they didn't get what they wanted. I mean a child who likes to sleep on a specific pillow, or likes to eat very specific foods, or doesn't like loud, unanticipated noises, or has issues with textures, or really either struggles to make friends or has no interest in socializing, or they don't understand or display inflection. Their language doesn't have the intonation, the music of language. They don't understand sarcasm, they don't get jokes. Those are the things to look for If you're an adult.

Speaker 2:

The funny or the ironic thing is that if you're an adult and you may be on the spectrum, you don't necessarily recognize that you may be on the spectrum. Having an awareness, a hyper awareness of yourself, those sort of the inward navel gazing, is not something autistic people can do very well. That is a defining feature. So when people come and really go to bat for their diagnosis, I go. If you were truly autistic you probably couldn't do that.

Speaker 1:

Yes, I can understand where knowing yourself and understanding yourself might really make a big difference. Unfortunately, they think they can outgrow autism and that's just not the case.

Speaker 2:

It is not something that goes away, doesn't change, and when people sort of deny that they may not be autistic, they're actually shutting off the things that you can fix. You can't cure autism. What you can do is treat the things that sometimes come along with autism. So even if that is true let's say you're an Asperger's type person the way to correct that is to go into cognitive behavioral therapy with someone who knows autistic people, who can teach you social strategies, work with you on eye contact. We're not trying to change who they are. We're trying to make them feel more at home or more easy to get along with, or maybe go to an interview and get the job that they want and not feel left out.

Speaker 2:

Medication for anxiety can be helpful. Medication for ADHD can be helpful. The key is first to get a full assessment so you understand where you really belong on that spectrum and you know. When people tell me they've had a diagnosis, I am very curious where they got that diagnosis? Who diagnosed them? What tools did they use to give them that diagnosis? Because the majority of people I know don't own an ADOS, have never been trained on an ADOS and don't have the faintest idea what the ADOS is, and it's a very critical tool. Everyone on my team has a doctorate and is licensed and primarily does assessments. I still have everyone trained on the ADOS every two years because there's so much research and critical thinking about autism that comes out every couple of years.

Speaker 1:

That's great. I think that's good for everybody to know. Now there's one last thing I wanted to mention. I've heard that it's tough to diagnose the difference between autistic people and some of those people that might be gifted.

Speaker 2:

Gifted individuals tend to have a tremendous overlap with autism. I actually have a table that I use from the Davidson Institute and the CDC and it's basically the overlap or the similarities between people who are gifted and the people who are autistic. Sometimes a gifted person can, in fact, be autistic. There is no rule that makes autism mutually exclusive. You can have both. But sometimes what looks like autism is really giftedness. Being gifted is a bit of a blessing and a curse. I have yet to meet someone who got told that they were gifted, who went oh wow, look at me, I'm gifted. They feel like it is a burden. The brain never slows down, the brain never shuts down, the brain never takes a break. The brain is firing on all cylinders all the time and it's exhausting.

Speaker 1:

Yeah, I can just imagine how do people find you.

Speaker 2:

Comprehend the mind and my Instagram is just my name Dr Sanam Hafiz.

Speaker 1:

Well, this has really been great conversation and great information, so I really appreciate you coming on.

Speaker 2:

Yeah, great work, thank you. As a mental health provider, I thank you.

Speaker 1:

It's been my pleasure. Thanks again. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to TonyMantorcom Contact then they can give us their information so one day they may be a guest on our show. One more thing we ask tell everyone everywhere about why not me, the world, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world.