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Affect Autism: We chose play, joy every day, Affect Autism: We chose play, and Joy every day द्वारा प्रदान की गई सामग्री. एपिसोड, ग्राफिक्स और पॉडकास्ट विवरण सहित सभी पॉडकास्ट सामग्री Affect Autism: We chose play, joy every day, Affect Autism: We chose play, and Joy every day या उनके पॉडकास्ट प्लेटफ़ॉर्म पार्टनर द्वारा सीधे अपलोड और प्रदान की जाती है। यदि आपको लगता है कि कोई आपकी अनुमति के बिना आपके कॉपीराइट किए गए कार्य का उपयोग कर रहा है, तो आप यहां बताई गई प्रक्रिया का पालन कर सकते हैं https://hi.player.fm/legal
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Diagnosing Autism in Girls and Women

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Manage episode 446868415 series 2110455
Affect Autism: We chose play, joy every day, Affect Autism: We chose play, and Joy every day द्वारा प्रदान की गई सामग्री. एपिसोड, ग्राफिक्स और पॉडकास्ट विवरण सहित सभी पॉडकास्ट सामग्री Affect Autism: We chose play, joy every day, Affect Autism: We chose play, and Joy every day या उनके पॉडकास्ट प्लेटफ़ॉर्म पार्टनर द्वारा सीधे अपलोड और प्रदान की जाती है। यदि आपको लगता है कि कोई आपकी अनुमति के बिना आपके कॉपीराइट किए गए कार्य का उपयोग कर रहा है, तो आप यहां बताई गई प्रक्रिया का पालन कर सकते हैं https://hi.player.fm/legal

This Week’s Guest

Dr. Robert Naseef is a clinical psychologist in Philadelphia who co-runs a fathers support group for fathers and male caregivers of autistic individuals at the Drexel Autism Institute. He is the father of an adult 45-year-old autistic son.

This Week’s Topic

There’s been a lot of talk about how autistic girls are not recognized and diagnosed and on social media around many women being diagnosed as autistic after their children are diagnosed. Dr. Naseef has been diagnosing children and adults with autism since 2008 and especially after the pandemic, he has seen an increase in females seeking diagnosis. This episode we discuss diagnosis and examples of autism in girls and late-diagnosed women.

Diagnosing Autism in Girls and Women

by Affect Autism

https://affectautism.com/wp-content/uploads/2025/10/2024-10-25.mp3

Key Takeaways PDF for Members

We will never share your e-mail.

Download

Success!

Diagnosing Autism

Before the Pandemic, Dr. Naseef would diagnose 1 or 2 adults per month, and in the pandemic it increased to 1 or 2 per week, averaging about 1 per week since. His process evolved slowly. Some of the boys he diagnosed, whom he sat on the floor with, grew up and became adults. Some went to college and some went to residential placements. Having been through the process with his son, first of all, then as a clinical psychologist, he knew what it looked like in adults, but the reason 80% of those diagnosed are male has been true for decades: the girls have less outward behavioural symptoms. The diagnosis rates by sex are shifting, but there isn’t a lot of data yet, he says.

Boys tend to have the classically autistic behaviours–flapping and behavioural dysregulation, often with high intelligence, often with low support needs, Dr. Naseef says. Very few girls have the outward behaviours and if they did, may have been diagnosed with a behavioural disorder. Most of the girls he sees are quiet, mostly introverted, have a friend or two, and have done well in school. They don’t cause problems for other people, and their suffering is internal. They may have past diagnoses of depression, anxiety, OCD, or attention deficits, and they come to him saying they’ve been reading about autism because none of their diagnoses descried who they were.

Even though most of the females Dr. Naseef diagnoses have friends, they struggle making friends, keeping friends, and socializing with people they don’t know very well. Those are some of the core differences between the males and females he sees in his practice. I wondered if the internal experience is the same in both sexes, but just manifests differently outwardly. Dr. Naseef emphatically agrees. He uses the same instruments on both sexes and their answers are very similar. Some of the female sensory profiles are more extreme than he’s seen, but they’re inside, hidden from the outside world.

Dr. Naseef adds that he has observed an increase in late-diagnosed autistic females in his practice as well as in the online forums. Many find it to be a relief and even transformational in that the diagnosis is a lens to understand their life story. Some will continue to snuggle with their co-occurring mental health issues. Others have the same or similar questions and begin their journey of reflection and psychoeducation through reading and possibly working with a therapist. Many get accommodations in the workplace because they now have a diagnosed difference that may also be a disability.

Masking in Autism

I shared that I’ve been making my way through the book Autistic Masking. It seems like girls are really socialized to keep it all inside and that masking is what impacts their mental health as they reach adolescence and adulthood. Dr. Naseef says that there’s a good questionnaire that measures the extent to which individuals mask and breaks down all the behaviours that go with it such as matching the voice and mimicking the body posture of the person you’re talking to. Like autistic boys, autistic girls learn through logic versus intuition, Dr. Naseef explains, but they’re socialized to learn masking quickly. Everyone says boys will be boys when their behaviours that emerge are different, but nobody says girls will be girls when they don’t behave in a neurotypical or allistic way.

Everybody masks to some extent, Dr. Naseef says, but autistic people mask to the extent that their very identity is hidden and the pressure of trying to fit in is overwhelming, mentally and emotionally. Kieran Rose defines it as a trauma response. It’s different than impression management where you present your best self at a job interview or on a first date. Masking is a survival mechanism where you have no choice but to mask, he says. Dr. Naseef agrees. One of the things that comes up with diagnosing individuals is that it’s often a relief to know that there’s a way to understand what the individual has gone through and that they’re not defective. They’re different.

They don’t have to keep apologizing for being different and don’t have to tip toe everywhere for being different. They also figure out if there are behaviours or things they want to stop masking. The question is personal and sometimes it’s as simple as not wanting to pretend around the people they know the best, Dr. Naseef says. They want to take breaks when they need to take breaks, or if they flap when they’re excited, they will flap. It’s never that they want to go to work and unmask everything, but it is about being more of their authentic self whenever that’s possible, he adds.

Widening or Dividing the Spectrum

Dr. Naseef and self-advocate, Dr. Stephen Shore co-wrote an article entitled, We’re all on the same side: Unite the Spectrum. In it, Dr. Naseef shared how Dr. Stephen Shore talked about how he had the same characteristics as Dr. Naseef’s son, Tariq, who is non speaking. That was Dr. Naseef’s most powerful case not to divide the spectrum because all of the autistic speakers Dr. Naseef has met talk about the needs of all autistic children and adults. He adds that finally children of colour are being diagnosed at the same rate as white children for the first time since statistics have been kept. In his practice, he’s also seeing more and more women of colour. He said they would have had no chance of being diagnosed before.

Kieran Rose talks about there being over 100 co-occurrences with autism including ADHD, anxiety, sensory processing disorder, and others, some of which occur at a very high rate, and in women they may come in with diagnoses of bipolar disorder, borderline personality disorder, anxiety and depression. Regarding this notion of widening the spectrum, the spectrum has always been wide, and that is finally being understood. Now we’re seeing that a lot of these co-occurrences are under the umbrella of an autistic neurotype. Depending on the co-occurrences that someone comes in with, they may require lower or higher supports needs. In the case of Dr. Stephen Shore, his current support needs might be more invisible, which is certainly the case for many autistic females, too.

Dr. Naseef will ask the females he diagnoses how they will feel if they get an autistic diagnosis or not. They often say they don’t care what the outcome is. They just want to know, whereas men and boys don’t seem to want to know, for different reasons since they might feel defective because of how they’ve been treated. The other thing about the world of girls, Dr. Naseef shares, is that the world is supportive of girls being quiet and different. The world of boys is very competitive. One of the problems that girls and women have talked to him about is having a different best friend every year where that friend becomes a special interest and it wears them out, and then they make another friend. It’s a common pattern that he hears about.

Specific to Females

A lot of autistic women feel they’ve been ‘too much to handle’ in their lives, which can impact self-esteem because you’re not trying to be difficult. Dr. Naseef says that having a child (or other family member) diagnosed and realizing that you share essential characteristic makes them question themselves. With social media, you no longer have to read academic papers to find other people who are speaking their truth, and you recognize yourself. He has others who say that they haven’t looked on the internet and don’t want to talk about other people but wonder if they are neurodivergent.

There are a lot of autism advantages, Dr. Naseef says, including being direct and having attention to detail, having great loyalty as friends and a strong sense of justice. Regarding bipolar, borderline, and obsessive-compulsive disorder (OCD), Dr. Naseef explains that if you have difficulty regulating emotions and it causes relationships to go bad, it’s very easy for someone going by the DSM to conclude that you’re a borderline. If you have wide fluctuations in mood, trouble with mood regulation that could be driven by sensory differences, it’s very easy for someone going by the DSM to call it bipolar disorder.

If you have repetitive activities that interfere with relating and communicating, are they really OCD, or can they be OCD in some cases, and just repetitive activities in some cases? Yes, Dr. Naseef asserts. The dividing line for OCD is that you do something because if you don’t there’s impending doom and disaster. For autistic repetitive activities, they’re soothing and self-regulating. That’s how these misdiagnoses of co-occurrences occur, he continues. It’s not looking at the big developmental picture, and not looking at the person you’re talking to as a unique human and just matching up what the doctor or therapist hears with the Diagnostic and Statistical Manual (DSM).

The whole movement around neurodiversity is really like a social justice, humanistic movement to just look at people as people, Dr. Naseef states. We are deep into this now, and there have been great contributions to this way of thinking that’s really taking hold including Barry Prizant’s book Uniquely Human and Steve Silberman’s book Neurotribes, along with many autistics who have led the way.

Monotropist Thinking

In the Autistic Masking book, they discuss Monotropism, which is not only about intense passions, but also about the way one thinks. I gave an example of perseveration of thoughts and Dr. Naseef says that it is autistic whereas obessive-compulsive disorder is about having to wash your hands 50 or 100 times a day or you think you will die. You have to go back and check that you turned off the gas on your stove for the 5th time or your house will blow up while you’re at work.

There’s many more variations in OCD, but they have a different feel, and are all connected with some disaster, Dr. Naseef explains. Perseveration of thought in autistic people who are likely to miss social cues and feel the need to be prepared is not OCD. If the perseveration is after the fact, second guessing events over and over is about wishing things were different than the way they really were. While it’s human to question things, the perseveration makes it autistic, Dr. Naseef says.

Uniting the Spectrum

I asked Dr. Naseef why a parent could be late-diagnosed as autistic and have relatively lower support needs than their autistic child. He said it’s because we’re all different in our essence. We’re all made up of many genes and neurons. The world needs many different kinds of brains and there’s wide variability. There’s some non speaking individuals who communicate fluidly in other ways by typing, spelling, or using different devices like the Proloquo2go. Sometimes it leads to more spoken language. Some just speak late. There are many variations in autism, but they share the same core characteristics of difficulty socializing and communicating, sensory differences, and passionate interests, he says.

This is how we understand it from a humanistic perspective, Dr. Naseef continues. From the medical perspective, you have to get a label to get accommodations and require a report about how you meet the medical label, when really, you’re just a differently and uniquely abled individual and human being. This is how our system works, he laments. Everywhere in the world where autism is being diagnosed and studied, the incidence seems to be the same, which is about 3%.

I posed the question to Dr. Naseef that I hear some parents say: You don’t speak for my child. Dr. Naseef understands what some parents are saying and what some kids are saying. Dr. Naseef was a second opinion on a diagnosis of a boy who was autistic in a regular classroom and who was very verbal. The boy said, “But I’m not like those kids in the autistic classroom. I’m not like them.” Dr. Naseef replied, “You actually are, but you have some skills that they don’t have, and you don’t belong in that classroom.” Now, some 7 years later he proudly tells everyone he is autistic. If we had adequate supports, we could make a big dent in education where nobody deserves being in that segregated class.

Adult autistics can shed light on why autistic children behave the way they do. The DSM really describes the stress response of autistics more so than characteristics, I added, and comparing that to a neurotypical norm. Look at the Double Empathy Problem where autistics seem to socialize fine with autistics and neurotypicals fine with neurotypicals but not when they’re mixed. Dr. Naseef says that there is so much we can learn from autistics who can can express and share what it’s like to be autistic. Dr. Naseef learned so much from Dr. Shore when they met about 30 years ago.

Dividing the spectrum dilutes the power that we can have united, advocating for everybody’s needs whether they’re low support or high support. Everybody needs the support they need. Disability is a function of society’s ineptitude of including people in the social fabric.

Psychologist Dr. Robert Naseef

Who says that suffering is a competitive sport? Dr. Naseef says that we all function and roll the way we roll. It’s really important throughout the community at every way of functioning to look at and focus on the strengths because the society that we live in has chosen to focus on the weaknesses. When we focus on our strengths, accepting how we are, that’s how we grow, according to our individual abilities, and getting the supports we need along the way, which is really the DIR way, he adds.

I presented another argument I see around adult late diagnosis: “There are lots of people with problems in the world. You’re just having some other difficulties. Everybody has struggles in life. Aren’t you taking away from others who need the help? Isn’t it a privilege to know yourself better even though you never really had a problem with it?” For other autistic mothers I know, that self knowledge helped tremendously with their support needs and being able to request for the support they need. To diminish another’s reality and refuse to validate someone’s difference that makes living in this world more difficult and more trying seems inhumane to Dr. Naseef. Alcoholism and eating disorders are very common co-occurrences with autism as well, Dr. Naseef adds.

The Medical Model Hasn’t Caught Up

This week I had the privilege of co-presenting the following presentation at ICDL’s 2024 International DIRFloortime Conference: Lived Experience Matters: What We Can Learn from Autistic Floortime Mothers and Daughters. The mother of two autistic daughters shared that she had severe post partum depression (PPD) that she now believes was autistic burnout. The medical model hasn’t yet caught up with the lived experiences of autistics, she stated. The way they treated her PPD was not helpful at all. Cognitive Behaviour Therapy (CBT) to her felt like she was gaslighting herself. The autism diagnosis gave her the self-knowledge that helped her understand her support needs.

To be effective, treatments need to be adapted to the individual, Dr. Naseef explains, and that’s often not what’s happening. We can’t really wait for the medical model, Dr. Naseef says. We have to just go forward as best as we can. I shared that the information on neurodiversity online is exploding and Dr. Naseef agrees, but says that we do have a long, uphill battle with the medical model and he has to have a foot in both worlds to make a difference. Diagnosis is just a label and identity is understanding who you are and how you experience life, and many have intersecting identities including gender, ethnicity, and faith, and differently-wired brains is just one of them.

It’s very common in autism as well to have different gender identities. Dr. Naseef says that gender non-conforming identities occurs at least twice as much in autistics. I acknowledged that as a DIRFloortime person, myself, and Dr. Naseef having a foot in the DIRFloortime world, we may not be as cutting-edge as some autistic self-advocates sites are, but we are allies and we are learning. It was an enjoyable conversation!

Resources

Autism in Girls

Neurodiversity Strengths Checklist

Autistic Women and Nonbinary Adult Packet

Chicklist Checklist

Autism In Adulthood where you can sign up to receive updates and free downloads from the only journal devoted to Autism in adulthood

This week’s PRACTICE TIP:

This week let’s think about people in our life that we grew up with and wonder about neurodivergence.

For example: Can you remember classmates or relatives as a child who exhibited neurodivergent signs? Did you interact with them? Were they discouraged from being who they were or were their differences cherished?

Many thanks to Dr. Naseef for sharing his experience of diagnosing females with us. I hope you found it as helpful as I did and will consider sharing this post on social media.

Until next time, here’s to choosing play and experiencing joy everyday!

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iconसाझा करें
 
Manage episode 446868415 series 2110455
Affect Autism: We chose play, joy every day, Affect Autism: We chose play, and Joy every day द्वारा प्रदान की गई सामग्री. एपिसोड, ग्राफिक्स और पॉडकास्ट विवरण सहित सभी पॉडकास्ट सामग्री Affect Autism: We chose play, joy every day, Affect Autism: We chose play, and Joy every day या उनके पॉडकास्ट प्लेटफ़ॉर्म पार्टनर द्वारा सीधे अपलोड और प्रदान की जाती है। यदि आपको लगता है कि कोई आपकी अनुमति के बिना आपके कॉपीराइट किए गए कार्य का उपयोग कर रहा है, तो आप यहां बताई गई प्रक्रिया का पालन कर सकते हैं https://hi.player.fm/legal

This Week’s Guest

Dr. Robert Naseef is a clinical psychologist in Philadelphia who co-runs a fathers support group for fathers and male caregivers of autistic individuals at the Drexel Autism Institute. He is the father of an adult 45-year-old autistic son.

This Week’s Topic

There’s been a lot of talk about how autistic girls are not recognized and diagnosed and on social media around many women being diagnosed as autistic after their children are diagnosed. Dr. Naseef has been diagnosing children and adults with autism since 2008 and especially after the pandemic, he has seen an increase in females seeking diagnosis. This episode we discuss diagnosis and examples of autism in girls and late-diagnosed women.

Diagnosing Autism in Girls and Women

by Affect Autism

https://affectautism.com/wp-content/uploads/2025/10/2024-10-25.mp3

Key Takeaways PDF for Members

We will never share your e-mail.

Download

Success!

Diagnosing Autism

Before the Pandemic, Dr. Naseef would diagnose 1 or 2 adults per month, and in the pandemic it increased to 1 or 2 per week, averaging about 1 per week since. His process evolved slowly. Some of the boys he diagnosed, whom he sat on the floor with, grew up and became adults. Some went to college and some went to residential placements. Having been through the process with his son, first of all, then as a clinical psychologist, he knew what it looked like in adults, but the reason 80% of those diagnosed are male has been true for decades: the girls have less outward behavioural symptoms. The diagnosis rates by sex are shifting, but there isn’t a lot of data yet, he says.

Boys tend to have the classically autistic behaviours–flapping and behavioural dysregulation, often with high intelligence, often with low support needs, Dr. Naseef says. Very few girls have the outward behaviours and if they did, may have been diagnosed with a behavioural disorder. Most of the girls he sees are quiet, mostly introverted, have a friend or two, and have done well in school. They don’t cause problems for other people, and their suffering is internal. They may have past diagnoses of depression, anxiety, OCD, or attention deficits, and they come to him saying they’ve been reading about autism because none of their diagnoses descried who they were.

Even though most of the females Dr. Naseef diagnoses have friends, they struggle making friends, keeping friends, and socializing with people they don’t know very well. Those are some of the core differences between the males and females he sees in his practice. I wondered if the internal experience is the same in both sexes, but just manifests differently outwardly. Dr. Naseef emphatically agrees. He uses the same instruments on both sexes and their answers are very similar. Some of the female sensory profiles are more extreme than he’s seen, but they’re inside, hidden from the outside world.

Dr. Naseef adds that he has observed an increase in late-diagnosed autistic females in his practice as well as in the online forums. Many find it to be a relief and even transformational in that the diagnosis is a lens to understand their life story. Some will continue to snuggle with their co-occurring mental health issues. Others have the same or similar questions and begin their journey of reflection and psychoeducation through reading and possibly working with a therapist. Many get accommodations in the workplace because they now have a diagnosed difference that may also be a disability.

Masking in Autism

I shared that I’ve been making my way through the book Autistic Masking. It seems like girls are really socialized to keep it all inside and that masking is what impacts their mental health as they reach adolescence and adulthood. Dr. Naseef says that there’s a good questionnaire that measures the extent to which individuals mask and breaks down all the behaviours that go with it such as matching the voice and mimicking the body posture of the person you’re talking to. Like autistic boys, autistic girls learn through logic versus intuition, Dr. Naseef explains, but they’re socialized to learn masking quickly. Everyone says boys will be boys when their behaviours that emerge are different, but nobody says girls will be girls when they don’t behave in a neurotypical or allistic way.

Everybody masks to some extent, Dr. Naseef says, but autistic people mask to the extent that their very identity is hidden and the pressure of trying to fit in is overwhelming, mentally and emotionally. Kieran Rose defines it as a trauma response. It’s different than impression management where you present your best self at a job interview or on a first date. Masking is a survival mechanism where you have no choice but to mask, he says. Dr. Naseef agrees. One of the things that comes up with diagnosing individuals is that it’s often a relief to know that there’s a way to understand what the individual has gone through and that they’re not defective. They’re different.

They don’t have to keep apologizing for being different and don’t have to tip toe everywhere for being different. They also figure out if there are behaviours or things they want to stop masking. The question is personal and sometimes it’s as simple as not wanting to pretend around the people they know the best, Dr. Naseef says. They want to take breaks when they need to take breaks, or if they flap when they’re excited, they will flap. It’s never that they want to go to work and unmask everything, but it is about being more of their authentic self whenever that’s possible, he adds.

Widening or Dividing the Spectrum

Dr. Naseef and self-advocate, Dr. Stephen Shore co-wrote an article entitled, We’re all on the same side: Unite the Spectrum. In it, Dr. Naseef shared how Dr. Stephen Shore talked about how he had the same characteristics as Dr. Naseef’s son, Tariq, who is non speaking. That was Dr. Naseef’s most powerful case not to divide the spectrum because all of the autistic speakers Dr. Naseef has met talk about the needs of all autistic children and adults. He adds that finally children of colour are being diagnosed at the same rate as white children for the first time since statistics have been kept. In his practice, he’s also seeing more and more women of colour. He said they would have had no chance of being diagnosed before.

Kieran Rose talks about there being over 100 co-occurrences with autism including ADHD, anxiety, sensory processing disorder, and others, some of which occur at a very high rate, and in women they may come in with diagnoses of bipolar disorder, borderline personality disorder, anxiety and depression. Regarding this notion of widening the spectrum, the spectrum has always been wide, and that is finally being understood. Now we’re seeing that a lot of these co-occurrences are under the umbrella of an autistic neurotype. Depending on the co-occurrences that someone comes in with, they may require lower or higher supports needs. In the case of Dr. Stephen Shore, his current support needs might be more invisible, which is certainly the case for many autistic females, too.

Dr. Naseef will ask the females he diagnoses how they will feel if they get an autistic diagnosis or not. They often say they don’t care what the outcome is. They just want to know, whereas men and boys don’t seem to want to know, for different reasons since they might feel defective because of how they’ve been treated. The other thing about the world of girls, Dr. Naseef shares, is that the world is supportive of girls being quiet and different. The world of boys is very competitive. One of the problems that girls and women have talked to him about is having a different best friend every year where that friend becomes a special interest and it wears them out, and then they make another friend. It’s a common pattern that he hears about.

Specific to Females

A lot of autistic women feel they’ve been ‘too much to handle’ in their lives, which can impact self-esteem because you’re not trying to be difficult. Dr. Naseef says that having a child (or other family member) diagnosed and realizing that you share essential characteristic makes them question themselves. With social media, you no longer have to read academic papers to find other people who are speaking their truth, and you recognize yourself. He has others who say that they haven’t looked on the internet and don’t want to talk about other people but wonder if they are neurodivergent.

There are a lot of autism advantages, Dr. Naseef says, including being direct and having attention to detail, having great loyalty as friends and a strong sense of justice. Regarding bipolar, borderline, and obsessive-compulsive disorder (OCD), Dr. Naseef explains that if you have difficulty regulating emotions and it causes relationships to go bad, it’s very easy for someone going by the DSM to conclude that you’re a borderline. If you have wide fluctuations in mood, trouble with mood regulation that could be driven by sensory differences, it’s very easy for someone going by the DSM to call it bipolar disorder.

If you have repetitive activities that interfere with relating and communicating, are they really OCD, or can they be OCD in some cases, and just repetitive activities in some cases? Yes, Dr. Naseef asserts. The dividing line for OCD is that you do something because if you don’t there’s impending doom and disaster. For autistic repetitive activities, they’re soothing and self-regulating. That’s how these misdiagnoses of co-occurrences occur, he continues. It’s not looking at the big developmental picture, and not looking at the person you’re talking to as a unique human and just matching up what the doctor or therapist hears with the Diagnostic and Statistical Manual (DSM).

The whole movement around neurodiversity is really like a social justice, humanistic movement to just look at people as people, Dr. Naseef states. We are deep into this now, and there have been great contributions to this way of thinking that’s really taking hold including Barry Prizant’s book Uniquely Human and Steve Silberman’s book Neurotribes, along with many autistics who have led the way.

Monotropist Thinking

In the Autistic Masking book, they discuss Monotropism, which is not only about intense passions, but also about the way one thinks. I gave an example of perseveration of thoughts and Dr. Naseef says that it is autistic whereas obessive-compulsive disorder is about having to wash your hands 50 or 100 times a day or you think you will die. You have to go back and check that you turned off the gas on your stove for the 5th time or your house will blow up while you’re at work.

There’s many more variations in OCD, but they have a different feel, and are all connected with some disaster, Dr. Naseef explains. Perseveration of thought in autistic people who are likely to miss social cues and feel the need to be prepared is not OCD. If the perseveration is after the fact, second guessing events over and over is about wishing things were different than the way they really were. While it’s human to question things, the perseveration makes it autistic, Dr. Naseef says.

Uniting the Spectrum

I asked Dr. Naseef why a parent could be late-diagnosed as autistic and have relatively lower support needs than their autistic child. He said it’s because we’re all different in our essence. We’re all made up of many genes and neurons. The world needs many different kinds of brains and there’s wide variability. There’s some non speaking individuals who communicate fluidly in other ways by typing, spelling, or using different devices like the Proloquo2go. Sometimes it leads to more spoken language. Some just speak late. There are many variations in autism, but they share the same core characteristics of difficulty socializing and communicating, sensory differences, and passionate interests, he says.

This is how we understand it from a humanistic perspective, Dr. Naseef continues. From the medical perspective, you have to get a label to get accommodations and require a report about how you meet the medical label, when really, you’re just a differently and uniquely abled individual and human being. This is how our system works, he laments. Everywhere in the world where autism is being diagnosed and studied, the incidence seems to be the same, which is about 3%.

I posed the question to Dr. Naseef that I hear some parents say: You don’t speak for my child. Dr. Naseef understands what some parents are saying and what some kids are saying. Dr. Naseef was a second opinion on a diagnosis of a boy who was autistic in a regular classroom and who was very verbal. The boy said, “But I’m not like those kids in the autistic classroom. I’m not like them.” Dr. Naseef replied, “You actually are, but you have some skills that they don’t have, and you don’t belong in that classroom.” Now, some 7 years later he proudly tells everyone he is autistic. If we had adequate supports, we could make a big dent in education where nobody deserves being in that segregated class.

Adult autistics can shed light on why autistic children behave the way they do. The DSM really describes the stress response of autistics more so than characteristics, I added, and comparing that to a neurotypical norm. Look at the Double Empathy Problem where autistics seem to socialize fine with autistics and neurotypicals fine with neurotypicals but not when they’re mixed. Dr. Naseef says that there is so much we can learn from autistics who can can express and share what it’s like to be autistic. Dr. Naseef learned so much from Dr. Shore when they met about 30 years ago.

Dividing the spectrum dilutes the power that we can have united, advocating for everybody’s needs whether they’re low support or high support. Everybody needs the support they need. Disability is a function of society’s ineptitude of including people in the social fabric.

Psychologist Dr. Robert Naseef

Who says that suffering is a competitive sport? Dr. Naseef says that we all function and roll the way we roll. It’s really important throughout the community at every way of functioning to look at and focus on the strengths because the society that we live in has chosen to focus on the weaknesses. When we focus on our strengths, accepting how we are, that’s how we grow, according to our individual abilities, and getting the supports we need along the way, which is really the DIR way, he adds.

I presented another argument I see around adult late diagnosis: “There are lots of people with problems in the world. You’re just having some other difficulties. Everybody has struggles in life. Aren’t you taking away from others who need the help? Isn’t it a privilege to know yourself better even though you never really had a problem with it?” For other autistic mothers I know, that self knowledge helped tremendously with their support needs and being able to request for the support they need. To diminish another’s reality and refuse to validate someone’s difference that makes living in this world more difficult and more trying seems inhumane to Dr. Naseef. Alcoholism and eating disorders are very common co-occurrences with autism as well, Dr. Naseef adds.

The Medical Model Hasn’t Caught Up

This week I had the privilege of co-presenting the following presentation at ICDL’s 2024 International DIRFloortime Conference: Lived Experience Matters: What We Can Learn from Autistic Floortime Mothers and Daughters. The mother of two autistic daughters shared that she had severe post partum depression (PPD) that she now believes was autistic burnout. The medical model hasn’t yet caught up with the lived experiences of autistics, she stated. The way they treated her PPD was not helpful at all. Cognitive Behaviour Therapy (CBT) to her felt like she was gaslighting herself. The autism diagnosis gave her the self-knowledge that helped her understand her support needs.

To be effective, treatments need to be adapted to the individual, Dr. Naseef explains, and that’s often not what’s happening. We can’t really wait for the medical model, Dr. Naseef says. We have to just go forward as best as we can. I shared that the information on neurodiversity online is exploding and Dr. Naseef agrees, but says that we do have a long, uphill battle with the medical model and he has to have a foot in both worlds to make a difference. Diagnosis is just a label and identity is understanding who you are and how you experience life, and many have intersecting identities including gender, ethnicity, and faith, and differently-wired brains is just one of them.

It’s very common in autism as well to have different gender identities. Dr. Naseef says that gender non-conforming identities occurs at least twice as much in autistics. I acknowledged that as a DIRFloortime person, myself, and Dr. Naseef having a foot in the DIRFloortime world, we may not be as cutting-edge as some autistic self-advocates sites are, but we are allies and we are learning. It was an enjoyable conversation!

Resources

Autism in Girls

Neurodiversity Strengths Checklist

Autistic Women and Nonbinary Adult Packet

Chicklist Checklist

Autism In Adulthood where you can sign up to receive updates and free downloads from the only journal devoted to Autism in adulthood

This week’s PRACTICE TIP:

This week let’s think about people in our life that we grew up with and wonder about neurodivergence.

For example: Can you remember classmates or relatives as a child who exhibited neurodivergent signs? Did you interact with them? Were they discouraged from being who they were or were their differences cherished?

Many thanks to Dr. Naseef for sharing his experience of diagnosing females with us. I hope you found it as helpful as I did and will consider sharing this post on social media.

Until next time, here’s to choosing play and experiencing joy everyday!

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