Portland Community College | Portland, Oregon

Let’s Talk! Autism, Exploring Distance Between Mental Health Professionals and Neurodivergent Community, Pt. 1

Hosted by Amanda Antell, Produced by the Let's Talk! Podcast Collective. Audio editing and transcription by Carrie Cantrell, Karen Green, & Chrispy Jones. Web Copy by Nic Meza Honea. Webhosting by Eugene Holden. Visual editing by Ryan Vail and Erik Wideman.

Bridging a Gap in Understanding

Story by Nic Meza Honea, Edited by Carrie Cantrell 

Within the neurodivergent community, a divide exists between many individuals seeking healthcare and their providers. Yet why is that? In this episode of Let’s Talk: Autism, host Amanda Antell talks with Madeline Long about this issue and the community itself and attempts to understand all sides. Madeline Long is a licensed clinical worker focusing on teenagers and adults who identify as LGBTQA+. Their conversation in this episode focuses on how the healthcare industry misunderstands the Neurodivergent community and how to bridge the gap with better training and more acceptance.

One article by Alisa Opar, an author for the autism-related online publication Spectrum, was released in 2018 and describes the failure of many healthcare institutions in their treatment of adult neurodivergent individuals. Today, in 2024, Amanda Antell reveals that at the age of 31, she has received a diagnosis and relates several obstacles she faces as an adult autistic woman. One issue is that most doctors focus their diagnostic criteria on children, and even in these instances, the training and criteria used to measure a child’s experiences is outdated and as Madeline Long said, “steeped in harmful stereotypes.” Advocates like Amanda Antell and Madeline Long believe that it is important for medical students to start training in autism awareness, amongst other changes needed to the American healthcare system that create obstacles for the neurodivergent community. A 2023 article published by the Windsor University School of Medicine discusses how addressing these changes would result in earlier and easier diagnosis processes for many autistic individuals, improved life quality and experiences in social settings like work, and a better working relationship between autistic patients and their doctors.

Madeline Long expresses the importance of a patient’s comfort, stating:

“It’s their right that if anything makes them feel uncomfortable, if anything that, especially mental health professionals says that doesn’t feel like it’s their lived experience, that it’s your right to kind of respond to that and to hopefully have a collaborative, very open discussion about what your individual experience is.”

Long’s statement carries weight according to Oregon Health Authority’s public policy number 333-505-0033, aka “Patient Rights”, which specifically names autism as one aspect which entitles an individual to extra support in hospital settings.

This episode reveals that there are people in the world, like Amanda Antell and Madeline Long, who recognize the struggles of the neurodivergent community and seek to help them through advocacy. While progress has been made, more action is necessary to repair relationships with those who feel unheard and discriminated against in the medical field and the organizations that provide them treatment.

Let’s Talk: Autism

“Exploring Distance Between Mental Health Professionals and Neurodivergent Community”

Host Amanda Antell interviews LCSW Madeline Long to discuss the relationship between the neurodivergent community and mental health practitioners providing them care.

Hosted by: Amanda Antell

Guest Speakers: Madeline Long

Produced By: Let’s Talk! Podcast Collective

Released on: 01/22/2024

Transcript

Exploring Distance Between Mental Health Professionals and Neurodivergent Community

Transcript edited by Carrie Cantrell, Karen Green, Chrispy Jones

Radio Disclaimer

Karen Green: You’re listening to Let’s Talk. Let’s Talk is a digital space for students at PCC experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers, and do not necessarily reflect the opinions or positions of Portland Community College, PCC Foundation, or XRAY.FM

We broadcast biweekly on our home website, pcc.edu/dca, on Spotify, and on XRAY 91.1 FM and 107.1 FM

Introduction

Amanda Antell: Hello and welcome to today’s Let’s Talk Autism podcast episode. Today we are analyzing the therapist’s perspective on the topic of distance and distrust between neurodivergent communities and mental health professionals. I was joined by Madeline who works as a social worker who gave interesting insight from the industry point of view.

Madeline and I discussed the stigma surrounding autism, ADHD, and other neurodivergent communities, as well as the practices associated with them. A common approach among providers is using a top down medical model approach in which treatment is based on old established studies rather than taking in the lived experiences of their clients.

This often results in unset assumptions and ineffective treatment or advice provided, causing patients to feel dismissed or even exploited in some cases. Overall, Madeline and I agree that there are many oversights in the medical community that have yet to be addressed, and that the distressed neurodivergent individual’s experience stems from a valid place.

Madeline Long Introduction

Amanda Antell: [to Madeline Long] So to start off with, I just want to say thank you again so much for joining me today, Madeline. I’m really excited for this discussion because it’s kind of been a well known issue in the neurodivergent community that there’s a lot of distrust and distance between mental health professionals and, well, autistic and ADHD patients.

So I’m hoping this conversation can help gain perspective to both sides.

Madeline Long: Yeah. Thank you for having me. I’m excited to be here. My name is Madeline Long. My pronouns are she, they. I work as a licensed clinical social worker. I have a private practice here in Portland, Oregon. And then I also see clients in Alaska, Washington, and Utah as well, where I’m licensed.

I work primarily with a variety of clients, but focus on teens and adults who identify as LGBTQIA plus. And that is where a lot of the crossover came, as I found that many people who identify as queer in some sense also tend to have autism or ADHD. Currently, I don’t specialize in the assessment or diagnosis of autism or ADHD, but I am always working towards finding new trainings or, uh, just ways I can learn more and serve my clients better.

Amanda Antell Introduction

Amanda Antell: And my name is Amanda Antell. I am the host facilitator and producer of this podcast series. And I am currently earning an animal science degree with a pre vet option at Oregon state. And I will be applying to vet school next year. And I was diagnosed with autism at the age of 31, so fairly recently, and it’s been a very interesting experience, and it’s also been very rewarding because it’s very sad and amazing at once just how many people have the same story as me.

So how long have you been a social worker and what first got you interested in the autism, ADHD, and neurodivergent communities?

Madeline’s Professional History

Madeline Long: Yeah, I opened my private practice here in 2018, but I’ve worked in the field in general since 2012 when I graduated from my undergrad. I received my graduate degree in 2014. in Utah, where I’m from.

And my first real experience working with people who were autistic was in 2012. I worked for a foster care agency in Utah. My kids on my caseload were anywhere from 5 to 21, with developmental difficulties, kind of behavioral issues. So I had like a vague knowledge of what it was before, but unfortunately that was very steeped in harmful stereotypes that I think all of us are aware of, are familiar with, but that was the first time that I really worked closely with people who Were autistic and the past three years, like I said, since I opened my private practice, I’ve just seen a lot of crossover and have found repeatedly that there are not the services and there is not the understanding.

And I’ve felt unprepared in many ways to adequately support my clients. And so that’s where a lot of my own interest in learning more and getting more training or more specialization in this area came from about half of my current clients. Or either diagnosed or we suspect do have some form of neurodivergence.

So it’s prevalent and I just want to be able to be as helpful as possible.

Amanda Antell: The second part of this question was basically asking when you first heard about autism, ADHD what I mean by that is when did you like literally first hear about in your life? And because obviously you heard about it in the academic and your professional setting, but was there a point before that where you had heard of it?

And did you have any kind of. Preconceived notion of what it was based on media or other things you heard.

Madeline’s First Encounters with the Autistic Community

Madeline Long: Yeah, that’s a good question. I think like the very first time I became aware of it was when we moved into a new neighborhood when I was eight, when my parents were married and there was a young kid who lived in our neighborhood who had autism, he was white, he was male, came from an upper middle class family, all of the stereotypical behaviors that are commonly associated with autism. And yeah, that was my first exposure.

Amanda’s Diagnosis Story

Amanda Antell: The reason I ask that is because my own exposure to autism was very weird despite being autistic myself. So my mom did try to get me diagnosed when I was younger because I am very high functioning, but I think when people talk to me, it’s pretty obvious I’ve never been very good at masking and I’ve never really bothered with it.

The first assessment, quote unquote, that was done on me, this was like when I was before kindergarten. So this had to have been when I was four or five or something. And this was some guy who was hired by the Beaverton School District, and I have no idea what this guy’s qualifications were, but he seriously told my mom I would never learn to read.

So, my mom obviously did not trust Beaverton School District with labels and me at all after that, so she did take me to several different actual professionals, but because I was so high functioning and because I’m female, they refused to give my mom a diagnosis and they told her that I would grow out of it.

And we both know that’s just how damaging that actually is. It was this reluctance to give me a label. And I feel like this reluctance with labeling patients sometimes kind of stems from their own prejudices and stigmas. Because the problem is if you don’t give people a label for their conditions, and if you don’t give it a name, we can’t advocate for ourselves and we can’t stand our grounds.

So it really cripples our ability to fight.

Madeline Long: I was gonna say, I can totally understand that, and I’m really sorry that that was your experience, that you were on the receiving end of that.

Amanda Antell: But I didn’t actually hear of autism until I was like in high school. I had to have been 15 or 16. And I heard it from my mother in law, of all people, because autism ran in her family.

So, it wasn’t until I got, until my therapist and my wife told me I really should get diagnosed that I went to a psychologist and literally, it, it took three sessions, but she told me she knew I was autistic off the bat when talking to me, it just, the standard is three sessions for the assessment process.

Again, I don’t think I’ve ever been good at masking. I think I’ve always been very obvious. The fact that I have autism, it’s just no one gave me the proper label. And no one was willing to, maybe not willing isn’t the right word, but it’s like this whole preconceived notion where by not giving me this label that these professionals thought they were doing me a favor, you know?

​

Autism as a Disability

Madeline Long: Just understanding that it is a debilitating disability in some way and this lack of understanding for the nuance and the many different ways that that can manifest and people can work with that. I mean, there’s lots of amazing qualities that autistic people have that are overlooked.

Amanda Antell: The thing about autism being a disability that I kind of have an issue with, I’m not saying it’s not, but obviously it’s like it manifests very differently in patients.

The idea of treating it as a severe disability rather than actually talking to patients and what we need, I think that is kind of dangerous.

Madeline Long: Yeah, I totally agree. I think that’s where a lot of that disconnect comes from. That typically when we are receiving trainings or continuing education credits, those are taught by people who are not neurodivergent.

They’re neurotypical, very academic lots of the time. And we don’t have these one on one kind of conversations with people who are actually living that lived experience and talking about what they need and the gaps. So that can, yeah, just kind of perpetuates the system where the trainings are coming from people who don’t fully understand, and it just keeps carrying that forward.

Defining Autism

Amanda Antell: So in your own words, could you please define autism, ADHD, or neurodivergence? Do you think this definition fits with most neurodivergent people you have interacted with?

Madeline Long: I would say a basic definition would be that they are all neurodevelopmental disorders, meaning that they deal with the development of neurological pathways in your brain or your central nervous system.

All of those systems are responsible for so much of being human movement, language, memory, social skills, focusing skills. So I think. That technically, yeah, that does meet the definition for, um, what they would be, but I do think that when you start breaking things down into diagnostic criteria of placing a diagnosis, that’s where you run into issues because there isn’t actually any criteria for diagnosis in adults.

Amanda Antell: So I’m going to give my definition of autism just because that’s what I have and I, and to me, the way I would define it is, My sensory processing is either less sensitive or more sensitive than a typical neuro processing would be. And because that sensory process is so different, it causes me to just intake my environment in more extreme ways or less extreme ways, depending on what the stimulus is.

So I think that the professional definition does kind of cover that a little bit, but it does not take into account the fact that it’s going to vary between patients very heavily. So a blanket definition isn’t very helpful a lot of times for autism, at least. I don’t know about ADHD or other neurodivergent conditions, but I can say with autism, a blanket definition can be kind of damaging.

Madeline Long: Yeah, I can’t agree with you more. I think that’s been a major thing in my career that I’ve come up against is how do I reconcile the fact that I totally agree with you that these are very reductive descriptions of what we view as Yeah. Something diverging from normal humans are all like, we are all so complex.

And especially if you were talking about something as complex as the nervous system in humans, of course, that’s going to have so many different presentations dependent entirely on that unique individual. And so I can totally understand what you’re saying, where if you kind of look at these basic definitions, these DSM, whatever we are using to define what autism or neurodivergence or ADHD is. It falls short every time in trying to encompass so much under such a broad umbrella.

Exceptional Autism, Understanding Differences

Amanda Antell: The whole idea of neurodivergence itself to me, what is normal and what is not normal, because literally everyone is different. There’s no two human beings the same.

So What exactly about autism and ADHD make us more different than let’s say the average person from the academic perspective as well?

Madeline Long: That’s a major problem. If you really look at the historical basis of where we got these ideas, where our first diagnostic criteria came from, the people doing that research and writing these diagnostic criteria, we’re basing that on white, cisgendered, wealthy male presentations, because that was where their test subject pool came from. And so, yeah, where does everybody fall outside of that umbrella? And that’s where you really start to see the cracks in these systems where we use this diagnostic criteria, but we don’t have any of the data to back up exactly how that’s looking in the vast majority of people, that’s why we find such massive discrepancies between different populations. I don’t know if you’ve heard of the book, Unmasking Autism. It’s one of the gold standard Bibles for the work that I do. But in there, the author quotes Judy Singer, who was the first person to really coin the terms neurodivergence or neurotypical.

And I love what she said. She was describing her frustration with Trying to get a diagnosis for her child and said that she kept running up against the inability to come to terms with human variability. And I think that’s how I view so much of this, that it is just this kind of inherent fear that we have when things don’t fit into the boxes that we kind of create in our mind.

And again, that’s where things start to fall between the cracks and we just forget and don’t even acknowledge so much of this lived experience that people have.

Perspectives and Attitudes on Autism

Amanda Antell: One book I’d really recommend, not just to you, but to all mental health professionals, is reading The Autistic Brain by Temple Grandin. She actually is an autistic woman, and I’m not saying the book you recommended is bad, but it’s very different to read a book from the learned experience from the perspective of an autistic person versus an advocate.

Madeline Long: Yeah, Unmasking Autism is by a transgender autistic person.

Amanda Antell: I would still recommend Temple Grandin’s book, The Autistic Brain. I thought the way she put it really does describe it very well. There are a couple of things I disagree with her on, such as how many ways autistic people can learn, because there’s just no way that’s three or four ways.

But other than that, it’s a very good book. Very good read.

Madeline Long: I don’t think I have that one. I have Seeing in Pictures [sic: Thinking in Pictures], I think is the one that I have.

Amanda Antell: I don’t like that one as much because even she admits in the autistic brain that she kind of acknowledges like the whole learning style thing was very limited at the time.

It was from her own perspective, but I don’t learn in pictures. In fact, I can’t really picture things in my brain at all. I’m a pattern learner. It’s like her knowledge at the time was not short-sighted, but just limited to her own perspective. And another thing I wanted to say about the foundational studies with autism, I have some background with how these were established, and correct me if I’m wrong on this, but they were done on very young white boys, like we’re talking for kindergarten, right?

And that kind of goes back to kind of research practices now where not only are we basing this off of an outdated research subject model, but also the follow up study for these–correct me if I’m wrong–is only two or three years or five.

Madeline Long: Yeah, that would be an area that I am not qualified to really speak on.

But my understanding again, is that, yeah, it’s extremely short sighted. And that’s why we don’t have really any concrete information for what that looks like in adults in particular.

Patient Needs and Input

Amanda Antell: Many neurodivergent communities feel as though mental health professionals are out of touch with their needs in social, behavioral, and other contexts.

Do you agree with this opinion? Why or why not?

Madeline Long: I don’t think this is specific or unique to neurodivergent communities either. I think that you see this across the board, that historically, because mental health has been wrapped up in a medical model, you get the same pitfalls that the medical model has had, where a lot of harm has been done.

Because the diagnostic criteria are significantly inadequate or inaccurate for a wide variety of presentations of these diagnoses, I think if, the same with anything else, if mental health professionals are not actively engaged in challenging their own biases, uh, the way that they learned, the information that they have had, updating that with new information, new data, Or the ways in which, I mean, our current health systems operate and fail to encompass that diversity.

It can directly contribute to harmful and even unethical practices that alienate the very people we’re meant to serve. I feel like it is imperative that we are very proactively engaged in deconstructing a lot of these beliefs that we have. And I think, like you said, like it doesn’t seem to be malicious a lot of the time.

It is just ignorance. And I think a lot of the time, at least with colleagues of mine that I’ve talked to about this, that it can be very difficult to be in a position where you feel that people are coming to you for help. They’re coming to you that you Are specialized in this, you’ve got all of the schooling, you’ve got all of this knowledge, and to be placed in a position where you don’t understand, I mean, it’s kind of very human to not feel comfortable with that and to compensate for that in different ways, which I think is kind of what you experienced.

There can just be unintentionally harmful things said or a lack of awareness or just gaps and knowledge. And so again, if you’re not actively engaged in trainings or gaining new information or speaking directly with people, learning kind of anecdotally, what could be helpful. It’s challenging. I can totally understand that frustration.

Power Dynamics and Patient Feedback

Amanda Antell: One thing I’ve noticed about mental health professionals that I’ve talked to is, the impression I get is that they don’t talk to their patients frequently about whether or not their treatment plan is working. I actually find that’s kind of rare. Like, where does that come from? It’s like, is that just not common practice for professionals to check in with their patients to see if what they’re doing is working?

Whether it’s standard talk therapy, whether it’s EMDR, whether it’s something else.

Madeline Long: I wonder the same thing. I have heard that. I mean, and especially if I have new clients who have had some background in therapy of all different sorts and just hearing some stories. And I, I honestly don’t have a good answer for you.

That’s always been something that I have felt. I just kind of like naturally try to incorporate, but again, that does take being comfortable with people being honest or not enjoying. You personally, whether it’s a personality thing, not finding that you’re helpful because you lack certain knowledge or the way that you deliver information.

So I do think you do have to inherently just kind of be comfortable with receiving that feedback. But historically where, if you kind of look at the medical model, there is this hierarchy, there is someone who is in a position of power. Typically they are the one with the education, the doctorate degree, the licensing.

They are the person that you’re seeking support from and in our society. And it’s very natural for that to become very hierarchical. And so I think it may be an extension of that where typically, I mean, Freud was probably not having those conversations with his patients. And I think there is some movement towards that.

And there is more understanding than that. Could be very beneficial to view the work that you do with somebody as more collaborative, rather than a top down approach, if that makes sense. But I mean, I could totally understand how that may just be leftover from that idea that was held in This kind of higher position, which again, I completely disagree with, but I could see how that might filter in again, those unconscious biases that we might have.

Amanda Antell: One thing I would say about that too, is the participants I’ve had on this particular topic so far have, again, you’re the only therapist. So the others have been recipients of mental health professional service. And interesting feedback I’ve got was the fact that a lot of distrust comes from the fact that it can be potentially exploitative and the fact that this information can be used against them.

And for me myself, it’s like, before my current therapist, I’ve always been kind of indifferent to therapy because what was used for me as a child just, quite frankly, seemed useless. My therapy experience as a child was basically court, like, I don’t know if you’re aware of the laws in Oregon with divorce, but basically in Oregon, if you get a divorce, I think it’s court mandated therapy for both the couple and any children they have so the therapist I saw during the divorce I just thought was a total idiot because she was a obviously a qualified professional but the problem was I was 12 and she was talking to me like I was 5 Like she was very exaggerated with her movement. She had a very high pitched voice and I was half expecting her to bring out sock puppets – It was that bad.

Like I thought she was a total idiot I think I saw like one or two therapists beyond that because I was getting bullied pretty intensely in middle school my mom was worried about me, but they weren’t bad people, it’s just I thought it was a total waste of time because they would just sit there as I talked, not offering any feedback at all.

I never have understood what the point of that therapy style is. It’s like, I could talk to a wall for free. Like, what is the point of this? I guess the reason I say that is just that whole hierarchy that you brought up, I think that’s where a lot of the distrust does come from because I do feel like a lot of neurodivergent people do feel that.

Like, they’re just not used to being taken seriously. They’re being used to being constantly dismissed or downplayed or just not believed in general. And I think it kind of can be exploitative potentially as well, where it’s like, I think if a therapist knows that if a treatment style isn’t working for a patient, but they’re still continuing to book them. To me, that’s bad.

Madeline Long: There are ethical standards that are supposed to safeguard against that. But again, humans are fallible. And unless you’re really proactive, it can be very easy to fall into those traps. And I think exactly what you said about historically. Yeah, it has been exploitative. And if you kind of look at the overlap between many different identities, whether that’s racial, gender, sexual identity, whatever it is, that’s all kind of swirled together.

And so it’s just layer upon layer upon layer of different stereotypes, different societal standards, all of these different ways that people can be discriminated against. And I think you find that very often. Within the mental health field, the same as anywhere else,

Amanda Antell: Like the diagnostic scope, I know it’s very recent with this, but it just started including people of color and women, even in the 90s, when I was a kid, women were barely even considered people, raised as women as well, obviously. So I think the diagnostic scope is getting better, but I think there’s still a lot of barriers. I think it’s still very limited and that I think there are still professionals out there who believe that autism just does not happen in women.

Period.

Education and Training for Professionals

Madeline Long: No, it’s very, very slow to change. Too slow. But I think it depends entirely on that individual mental health professional, their background, their education. I think we had spoken previously to this about how one of the major frustrations for me and doing this was that. I was not taught anything about diagnostics in my master’s program.

And so for me to get any training or kind of specialization in this, I have to find my own trainings, which are very cost prohibitive. There are so many barriers to access for those. And so I think that that. Further complicates this issue that even if there are individuals out there who do want to be helpful, who do want to ally themselves, to be affirming, to do all of these things, to have training and to be helpful in some capacity, it’s just very difficult to find the information to enable us to do that.

So that was the only other thought that I had that we hadn’t covered, but again, it’s not good enough and it’s not changing quickly enough.

Amanda Antell: Graduate programs I’ve researched as well. It’s like. Again, just one assessment course, and correct me if I’m wrong, it doesn’t even specialize in autism or ADHD anyways.

Madeline Long: In mine, it was just kind of a general introduction to how you would do assessments, how you would do diagnostics. Yeah, so the bulk of that would have to come outside of school.

Amanda Antell: I think OHSU does have like a program where essentially different graduate schools place students with them for specific diagnostic training with autism.

I have no idea what the cost barriers of that would be, but I just know that that exists because I’m doing another autism project at Oregon State right now. Oh, cool. And that’s why I’ve talked to so many different professionals and have just gained a rather depressing insight to this, honestly. So tip for the wise, if you are continuously seeking more training on ADHD and autism, other areas are really fast and loose, like ABA.

I mean, I guess, like, do you know what ABA is, or?

Madeline Long: Yeah, yeah, yeah, I do.

Amanda Antell: So, tip for the wise, if you, if you are continuously seeking more training on ADHD and autism, please do not ever become ABA certified. Most neurodivergent people aren’t ever going to trust you if you do that.

ABA itself is considered very abusive in our community. And even if it’s not abusive, it just completely ignores the needs and the functions of autism and ADHD and how we regulate ourselves. But the reason I bring up ABA in this conversation is because I have no mental health training at all. And I could get certified with ABA in a year because I have the money to essentially pay for a certification course.

Like, I always found that really scary and depressing, just literally anyone can become ABA certified.

Madeline Long: In my experience, at least the people who I have interacted with primarily, that your kind of run of the mill social work programs Professional counselors, mental health counselors, family and marriage counselors in this degree that you pay thousands and thousands of dollars for.

So it becomes your responsibility outside of that if that is something that you want to pursue and you really want to specialize or support those individual communities. And so I think a lot of that gap comes from the lack of access and the barriers to access in gaining that training and that specialization.

We see that, I mean, across the board with any of the kind of specialty theories, EMDR, IFS, all of those things all have major barriers to access for professionals who want to be trained in them. I’m hopeful that those barriers will decrease over time, but again, I think that it’s. Too slow, and how many people are falling between the cracks or kind of actively being harmed by the fact that we can’t meet their needs.

It may be prohibitive for people to find it, but then there’s good reason that there are kind of safeguards. So people are following some ethical standard, or they do have some knowledge, or they are able to kind of assess for different nuances, but Yeah, exactly like the DSM. I can understand there is a need for like a general idea, maybe to understand things through that lens, but then no system is perfect and they all kind of fail when you start applying them very closely to unique individuals.

Verbiage, the DSM and APA

Amanda Antell: And another thing about the DSM, I find they actually did supposedly take in the personal input of autistic people when coming up with the level 1, level 2, and level 3 thing. And I’m like, well, that’s great, APA, but it does not address the problem. And another issue with that is high functioning and low functioning are so mainstream at this point that even the general public knows them.

So we can come up with all these new labels if you want, but it’s not going to change the fact that people are going to fall through the cracks and it gives industries a way out from personal interaction with us and actually accommodating our personal needs. To me, the APA has always been historically really bad about addressing the fact that our individual needs are not met.

And even when they do talk to us, I feel like the language was the main focal point of the most recent DSM, but not the actual needs. Yeah,

Madeline Long: I think that’s a fair criticism.

Amanda Antell: And I’m not saying that I’m expecting the APA to change overnight, and I’m not saying that language isn’t important, but to me, language, it’s very superficial for me, and it allows, honestly, a lot of people to ignore the core issue, which is the fact that professionals or higher ups are not talking to us.

Madeline Long: Well, and again, that’s, that’s rooted in this kind of historical experience where that has happened. Where words don’t mean, mean much if actions aren’t following, if policies aren’t following. So I can totally understand where you’re coming from, and I, I agree.

Institutional Bias

Amanda Antell: So that’s another issue, though. It’s the fact that there is some follow through with this, like, but I know the universities I’ve attended, PCC is included in this, where they do give me the accommodation I sign up for, that’s true, But, but they don’t follow up with me after that, and with Oregon State, accommodation I had to fight tooth and nail, and I’m not exaggerating when I say I was fighting with Oregon State for a month over this, was flexible attendance.

The flexible attendance essentially just allows me to attend the course if there’s like in person activities required, or if like there’s lab or something. Again, I had to fight tooth and nail to get this because Oregon State just did not want to budge, and even got kind of nasty with DAS because a professor kind of twisted my words in an email and was trying to call me ableist, of all things, when he was the one being ableist.

I’m not letting that go, but anyways, the reason I bring that up is that even when there’s systems in place for disabilities, it feels like it’s an excuse not to talk to us. It’s like, yes, we met our legal requirement. Yes, we do have provisions in place to provide these disabilities. But again, they are not talking to us.

I don’t think it comes from anywhere malicious, but it just comes from that place where, again, it’s rooted in history, and it’s just that general ignorance. If you don’t live through the experience, you’re not going to understand how serious that is. Like, the basis for my flexible attendance, uh, accommodation was the fact that I have delayed sleep syndrome, and I get driving anxiety.

And despite letters from both my psychologist and a neurologist, I was still denied that, and again, a month long battle. I am not effing with you with that. It was so ridiculous. Like they were trying to ignore my needs despite medical documentation to prove it.

Madeline Long: And again, I don’t know where that comes from. Well, I think I can hypothesize where that may come from again, kind of historically how we viewed healthcare settings, medical model, Western medicine. But yeah, I don’t understand where that comes from. And again, I see a lot of this overlap with Many different kinds of marginalized populations that I work with, in particular, kind of chronic illness, chronic pain issues that I cannot get these doctors to understand where I’m coming from.

It’s just kind of a wall and empathy only goes so far. And so I think we kind of see that in a broader sense to culturally where there is this idea that we can’t make these accommodations that will make people softer or it will enable them or their attention seeking or I mean any of these really harmful narratives that we have about accommodations in particular and making life more comfortable for people in whatever way.

I don’t necessarily understand what the resistance to that is, because if you accommodate the person who has the most challenges or is struggling the most, or just has needs in whatever form, that tends to benefit everybody else. And so I don’t understand it. I wish it would change a lot quicker.

Amanda Antell: So to me, a lot of resistance comes from the fact that it’s basically preventing people from gaming the system and making it unfair to like the masses.

I mean, that’s valid, I’ll say, but what’s not valid is the fact that without these accommodations we can’t play on the main playing field anyways. And again, I’m not saying that you shouldn’t be cautious, because there definitely are people out there who do take advantage of the system and kind of leverage it.

You can’t apply that same fear and prejudice onto an entire community when it’s just a few [expletive censored] that do that. And this is kind of my personal theory. I genuinely think people who think like that think they’re doing people like me a favor. Where it’s like, if they force me to interact with, like, the class, or, like, force me to interact and participate in the class, like, as a non disabled person, essentially, then it’s like, they’re doing me a favor by essentially forcing me out of my comfort zone, adapting to a new environment, and essentially getting a new skill.

I think they’ll deny that, but I do think that’s where that comes from a lot, where this whole, I’m doing you a favor mindset comes from. Like, I’m not excluding you kind of thing.

Madeline Long: Well, and there’s a lack of awareness when that is also motivated by my comfort. I’d like you to behave in this certain way or do this certain thing so I can feel more comfortable.

Amanda Antell: I said with my own therapist, it’s like you point out a disability of theirs. It does, like, become more real to them and they realize just how wrong they are. Like, I don’t know what doctors you have, but say one of them had glasses. It’d be like you telling them that I’m going to ask you not to wear your glasses around me because I think I’m doing you a favor by, by, I don’t know, having you become daredevil or something.

I’m making you become like, like me, essentially a superior being. I know that sounds like kind of a ridiculous I’m not sure if that’s a good idea, but

Madeline Long: No, no, that’s a great analogy, yeah.

Amanda Antell: Again, I just, that whole mindset of, they’re doing us a favor kind of thing. And I feel like this is especially prevalent with invisible disabilities like autism and chronic pain.

Madeline Long: Absolutely. Yeah.

Amanda Antell: Like, I can’t, like, I mean, I guess like insurance companies especially are pretty terrible about that, right? Yeah.

Madeline Long: Yeah. Not the best. And again, I mean, if you’re saying that that is motivated by helping somebody or helping them push through it or accessing something that they didn’t know that they could access before, I mean, you’re just leaving millions and millions of people suffering needlessly.

Distance Caused by Lack of Training

Amanda Antell: So for question six, based on your experience in educational training, where do you think the gap between neurodivergent communities and mental health professionals stem from? Do you see it decreasing or increasing over time and why?

Madeline Long: In my experience, at least the people who I have interacted with primarily, that your kind of run of the mill social work programs, professional counselors, mental health counselors, family and marriage counselors.

There isn’t an emphasis on it. You don’t get that in this degree that you pay thousands and thousands of dollars for. Um, so it becomes your responsibility outside of that if that is something that you want to pursue and you really want to specialize or support. Those individual communities. And so I think a lot of that gap comes from the lack of access and the barriers to access in gaining that training and that specialization.

We see that, I mean, across the board with any of the kind of specialty theories, EMDR, IFS, all of those things all have major barriers to access for professionals who want to be Trained in them. I’m hopeful that those barriers will decrease over time. But again, I think that it’s too slow and how many people are falling between the cracks or kind of actively being harmed by the fact that we can’t meet their needs.

Medical Gatekeeping Diagnoses

Amanda Antell: I definitely agree with you. I know we touched on this earlier in the conversation, but for me, it really does kind of go back to those first studies that you mentioned and just how I think a lot of attitudes and training are still kind of influencing current practitioners. So my thoughts on this are, professionals are given a medical model based on the earliest studies and there’s just this reluctance to go beyond it, like with my diagnosis situation when I was a kid, I think professionals knew I was autistic, or at the very least they heavily suspected, they just did not want to go against the grain of the diagnostic material at that time, it’s just this willful ignorance actually, the fact that you have presenting patients in front of you who are telling you Point Blank, what they’re experiencing and the fact they think they might be autistic or have ADHD and you just have experts just ignoring them based on their own preconceived notions of what autism and ADHD and or other conditions look like, whether it’s from training, whether it’s from media or whether it’s from sources like Autism Speaks, there’s just this preconceived notion they have and they don’t want to believe the people in front of them.

Madeline Long: Well, and I, I’m sure that that happens sometimes. And I’m, I don’t even know if it’s always a willful ignorance. I think that a lot of that, I mean, that highlights. the downfalls of something as reductive as the DSM kind of criteria for diagnosis. I can’t legally or ethically give you a diagnosis if you don’t meet these very kind of arbitrary things.

And so I think, again, the lived experience of people who are autistic or neurodivergent in whatever way that I know I’m experiencing these things. I know. That I am processing things differently. And many times the professional’s hands are tied to give that specific diagnosis because the DSM and the diagnostic criteria are behind.

They have not caught up to the information that we have or what we are seeing. I’m positive that there are times where it is willful ignorance and people just being very dismissive and not seeing what’s in front of them or not. affirming that, but I also think there is another layer where, again, that just highlights the shortcomings of a diagnostic criteria when you start trying to apply that to the masses.

Amanda Antell: And it’s not just mental health professionals, it’s people who literally gatekeep disabilities. Like, there’s actually a person at Oregon State who actually literally gatekeep people from ADHD diagnoses. They’re not even qualified in assessment in any way, by the way. So at Oregon State, there is a scholarship available where students can apply to get essentially a heavily discounted ADHD diagnosis or a free one, depending on financial income level.

But a stipulation of that is they have to go through this person in DAS who basically typecasts them about whether or not they have ADHD. Again, this person has no assessment training. And when I asked about if they actually had mental health professional training, all they told me was that they had 30 years of experience. Which to me is, by the way, a bad red flag if someone just tells you that repeatedly, like, I have 30 years of experience doing so and so without actually stating their qualifications, just saying.

Healing Patient Relationships

Amanda Antell: So for number seven, a lot of criticism and bad blood from neurodivergent communities stem from the fact that they feel repeatedly dismissed, exploited, and even abused at the hands of these professionals. Where do you think this comes from, and is the professional mental health community aware of these fears?

Madeline Long: I want to make it clear that I can’t speak for the entire mental health profession.

Amanda Antell: Yeah, I know. I’m sorry. Like,

Madeline Long: no, it’s okay.

Amanda Antell: I’m sorry.

Madeline Long: But again, I can imagine a lot of these situations stem from what I stated before about a lack of education, training, and more importantly, an open dialogue with people who are directly affected.

I think we can make our best efforts and we’re probably going to fail. The trainings are typically offered by people who don’t share that lived experience. So again, I think that there’s just the way that things are set up right now in this understanding that we have and kind of holding data driven things and not, not quite understanding how do we integrate all of the anecdotal data that we can gain very quickly through use of the internet.

Um, I think we just haven’t caught up. I’ve heard firsthand some of the statements that other mental health professionals have made that has stuck with my clients in a not so great way. And I’m positive that I’ve said things in the past without knowing that or understanding the harm that they could cause.

But again, I think that to combat that is an open dialogue and an open kind of questioning and discussion about how we can be better and not just accepting what we have done as the golden standard for what should be done. In the future, I mean, when I’m giving any diagnosis, I have a conversation with my clients about the pros and cons of getting an official diagnosis and examining what that label means to them individually.

Some people are very resistant to having the label. Other people are very eager. To have some label, some understanding, some vocabulary, something they can kind of hold to, especially as they try to explain their experience to people in their life. And I think that can go a long ways, again, to really build that spirit of collaboration rather than I’m kind of holding something from you that you want access to or should have access to.

There are lots of pros, there are lots of cons, and I dialogue about that with the person that will be affected.

Risks and Benefits of Diagnosis

Amanda Antell: Yeah, the bad blood thing just kind of comes from bad experiences and like this continuously being dismissed and not believed and in some cases exploited. And another fear that kind of came up with the participants was actually this information used against them in court.

Like, with my therapist, I do know that’s the case if I’m convicted of a crime and they need to come in and testify against me. And apparently, in child custody cases, this can get kind of nasty. Like, I’m assuming there’s subpoenas involved and that these mental health records kind of become subject to the court’s discretion because basically it comes down to whether or not the child is safe.

So there are fears surrounding that as well, although I’m not really sure. Anything can be done to mitigate that particular issue because that’s more of a legal thing than a mental health professional thing.

Madeline Long: Yeah, but again, it’s important to have those conversations to make sure that people have kind of informed consent to when we’re going through any sort of diagnostic criteria that that does, especially if you’re using insurance that does go on your medical record, and it can help you gain access to accommodations or kind of protections legally from disability acts and in the workplace, but it doesn’t protect you from a lot of the stigma and the ways that that can be weaponized still. And so again, just having an honest conversation about what are the pros and cons of seeking an official diagnosis.

Amanda Antell: And it’s kind of interesting you bring that up because one thing that was brought up. Recently in a conversation with another participant was the fact that even if you do get diagnosed, and even if you do submit documentation to like, or whatever, you’re kind of treated as invalid. Or like, or infanticized, I think is the word.

Madeline Long: Infantilized.

Amanda Antell: Yeah, I’m sorry, I did not say that right.

Madeline Long: No, you’re good. I knew what you meant.

Amanda Antell: I’ve never experienced this myself, I think it’s because I’m just so assertive and can get somewhat aggressive, it’s like my nature is to fight and make sure people know exactly where I stand and they’re not crossing over any lines I have.

I can see this happening, though, because I do feel like I think it’s just easier for institutions to do that rather than, again, talking to us, but I was kind of wondering what your thoughts on that were as well.

Madeline Long: Yeah, yeah, no, I have heard that kind of anecdotally just from a few clients that I work with, that there is, again, people who are giving diagnoses, like all mental health professionals, we’re humans, and so we are kind of fallible in that we do have biases. We have our own kind of worldview. So I, I have heard that unfortunately from some people that it can swing the other way. And especially if they don’t, I mean, like you kind of benefit from where, wherever that comes from, that you’re able to advocate effectively for yourself or really push or get aggressive when you need to.

If you don’t do that, then yeah, I think I see that a lot again with different populations that I work with, with the queer community, with Autistic people, people who have chronic illness, and yeah, there, there is just again going back to that hierarchical understanding of the medical model that it can be really intimidating or people don’t know that they have the option or that they have the right to really push back against these ideas and if that doesn’t fit you, that you can say, no, that doesn’t fit my experience and again, not that that will be I think that’s Received on the other end, but I think on both sides, there’s a lack of empowerment for individual clients or individuals in any capacity to really advocate to know themselves better than anybody.

And to know what they would need, and then to be able to effectively communicate that to people. And then from the other side, just if there are unexamined biases that, yeah, that can very easily become harmful. And again, that a lot of those things that I’ve heard from clients from other health professionals, I don’t think they were meant in any malicious way.

I think it is just a lack of awareness of the weight that your words can carry, even if you don’t yourself understand them that way.

Awareness within the Industry

Amanda Antell: So from your experience, I don’t know if this has ever come up with your colleagues, but would you say that they’re aware of the fears the neurodivergent communities have against mental health professionals or would you say there’s any kind of wider awareness of these issues?

Madeline Long: No, I I think that there is a general awareness particularly and again, I can’t speak to other kind of professions or Yeah, like I’m an LCSW, so I can really only speak to social work, and the people that I work with closely are generally social workers as well.

And I think the people that I’ve associated with, we do, we’re aware of historically how social workers have perpetuated harm in many different communities. And I think there are many people who are actively trying to change that, who are trying in their small capacity individually to do whatever they can.

I can’t speak for the whole profession again, but, I do think there is a general awareness that people do not trust therapists as an extension of the medical profession in general too.

How to Repair Trust

Amanda Antell: What efforts in the professional mental health community Have been taken to kind of build trust in neurodivergent communities, or have there been any kind of efforts to kind of remedy this?

Madeline Long: Yeah. Again, I can’t, I can’t speak to maybe like a broader movement. Um, but the, the circles that I’ve been involved in, my supervision, colleagues, people I went to school with, people I’ve worked with in the past, I think there is a deep commitment to understanding and learning how to better support, um, marginalized clients of any background, whatever that looks like.

I think it’s deeply individual how that looks. But I think a lot of that starts with what is in my immediate power to kind of influence. And I see that as my individual relationship with my clients, that’s where I start just having these conversations, making sure that I build kind of a collaborative environment for them to explore different things, to be able to advocate for themselves with me, to give feedback.

And I’ve seen that at least in the circles that I’m involved in, and I hope that that’s The broader profession

Patient Rights and Self-Advocacy

Amanda Antell: since patient advocacy has kind of come up earlier for neurodivergent audience members, what rights do they have in the patient therapist relationship? Like, what are their rights as patients? Like, what advice do you have in terms of advocating for themselves in that hierarchical relationship?

Madeline Long: Oh, that’s a good question.

Amanda Antell: because a lot of participants really don’t know that. And I can just kind of give my thoughts on it. Like, I know that it’s a bad sign if a therapist is pushing for more appointments when you’re trying to distance yourself from them, for example.

Madeline Long: Yeah, I think one of the things that I tell my clients. Whether it’s for me, whether it’s a different health professional that they’re working with it. I mean that person is providing a service to you like you, you are the customer, in essence, and so I want people to know that. It’s their right that if anything makes them feel uncomfortable, if anything that, especially mental health professionals says that doesn’t feel like it’s their lived experience, that it’s your right to kind of respond to that and to hopefully have a collaborative, very open discussion about what your individual experience is.

I think we’re all so starved to be seen, for the individuals that we are. And I think the number one thing that I would say is that you always have the right to walk away if something doesn’t feel comfortable to you. It’s not mandatory that you stick with somebody just because you’ve been with them, even if you’ve been with them for years, that if you feel that it’s no longer serving you or something isn’t helpful, then you almost have the right to bring that up and try to workshop that or just walk away.

And again, that’s, that’s not to say that that will be received well on the other end or that’s an easy thing, much easier said than done, but I think that’s important that people know that, yeah, you’re, you’re your own individual human being and you deserve to be supported in the ways that you need.

Madeline’s Takeaways

Amanda Antell: As a mental health professional, how do you feel about the attitudes and fears mentioned in today’s conversation? Do you feel like you’ve gained any insight that you will take to other mental health professionals?

Madeline Long: Absolutely. Yeah, this whole experience has been very thought provoking. It’s helped me to kind of examine, where do I have my ideas? Uh, how do I relate to this topic in particular? I feel very much out of place. This is not, again, it’s not my specialty. I don’t have any specific credentials to sit on, but I do feel like I have gained some insight, particularly through talking to you and just kind of hearing your stories. It gives me a lot to think about. I think the same as you, it does feel kind of depressing. It does feel kind of hopeless sometimes, but I also maintain a lot of hope that is the same as kind of in broader cultural senses. I think we’re all kind of waking up and hopefully moving towards being more supportive of Each individual person for however their beautiful individuality comes out.

So yeah, lots to think about. And I’m really appreciative for the opportunity to have the conversation.

Neurodivergence and LGBTQIA+

Amanda Antell: And I’m very grateful you chose to have it with me. So the closing thought I had was kind of going back to the crossover with the LGBTQIA plus community. It’s actually not surprising. There’s been, and you probably know this, but there’s been several articles and studies published on this. And to me, the reason why there was such a strong correlation is because Autistic and ADHD individuals, in particular, we essentially have to make up our own rules to survive in society. So, it’s like, it’s not surprising that we reject gender norms or, uh, relationship norms. At least in the society, in the context of the society we’re raised in. So that’s kind of my two cents on why that’s the case. In fact, there’s actually even an increasing number of nonbinary and being autistic and ADHD. Because again, it goes back to the whole we have to survive and make up our own rules. Why would we? It only makes sense that we reject gender norms that don’t work for us, you know?

Madeline Long: No, that’s really interesting. I’m glad you brought that up. I’ve read different things or talked to people about different things along those lines, but I like how you put that, that it is, that you do kind of inherently have to question. a lot more than, um, neurotypical people who benefit from a lot of privilege would have to question. I think, yeah, that’s very insightful.

Amanda Antell: Yeah, I actually did cover this topic like autism and ADHD and binary versus non binary community. I don’t think those talks are published yet because my editors has been swamped. There’s whole discussions on this already with this podcast. It’s reflective of like society growing and evolving in my opinion as well. And just the fact that again, we’re choosing to adapt the way we need to.

Madeline Long: Absolutely. Well, and I think it’s interesting, I just had this conversation last week with a client about when you start really looking at all these things and trying to parse each individual thing into its own box, and this is my neurodivergence, and this is my queer identity, and this is my sexual identity, and all of these different things, they tend to just kind of muddle together.

And I think that’s the beauty that you find, like, when you are able to kind of access that level of awareness, that level of just kind of freedom from societal standards, um, that can be so repressive, that it is just this, like, very beautiful, fluid experience, where you get to see individuals as just the individuals that they are, rather than the sum of all of the boxes that they fit into.

Amanda Antell: I would say, also, that I don’t know, for me, it’s like, it’s actually very easy to kind of separate my neurodivergence from my sexuality and my gender identity. That’s just, that’s just who I am specifically, that obviously, I feel like I’m actually kind of not that common in that regard. I feel like for everyone else, at least most other people I talk to, it’s kind of all muddled together, like you said.

But that’s kind of what you said that makes it kind of beautiful, and that’s just what makes humanity kind of cool, the fact that none of us are the same.

Madeline Long: Absolutely.

Reiteration of Patients’ Rights

Amanda Antell: So, before we go, um, one thing I did want to reiterate to the audience is, as patients, you have the right to walk away if something doesn’t feel right, and you are a customer, and the mental health professional is providing a service, and if you’re not, Satisfied with that service. At any point, you do have the right to walk away. And just because you’re a professional yourself, I just kind of, I thought it would be helpful if the audience heard that from you as well.

Madeline Long: Yeah, absolutely. Yeah, I will reiterate what I said and what you said that absolutely, if something is not serving you, I hope that you can feel empowered and that you have support elsewhere that gives you the resourcing to be able to walk away.

Please, please, please do not stay in situations, particularly with professionals. If. They’re not open to change. They’re not open to feedback or, um, are there to hear what it is that you need. I think that’s so important. And absolutely, you have the right to walk away if something isn’t serving you.

Amanda Antell: And another thing is, I would say also walk away if they become kind of abusive in the sessions, either outside of the sessions or inside the sessions.

Like, again, like they’re insisting that you meet with them, even if you’re trying to kind of distance yourself by not booking appointments with them. I would say that’s actually a pretty big red flag.

Madeline Long: Yeah, I’m glad you brought that up. I mean, that can look so many different ways.

Amanda Antell: And I just, it’s just the overall, you have rights as a patient, you have rights as a, as an individual, outside of the situations we mentioned in this conversation, a therapist does not have the right to share your information with anyone without your express consent. At least in the state of Oregon, I don’t, I can’t speak for any other state.

Madeline Long: Yeah, outside of if you’re a danger to yourself or others, I mean, just kind of mandatory reporting laws outside of that, then absolutely, but again, they should be clear with you when you do an intake and when that would apply and when that would not apply.

Amanda Antell: And don’t hesitate to ask to see your patient client contract. Don’t hesitate to ask for that and reread it over to me if a therapist is not willing to show you that again, that’s also a pretty big red flag.

Madeline Long: Absolutely. Yeah. If you want copies, then please, please ask for those, um, for your records. And oftentimes, I mean, uh, part of my intake paperwork has a specific section for grievance procedures. I mean, if anything unethical or harmful. They should outline who would you talk to if you needed to report to somebody or get support around fixing that or addressing that.

Amanda Antell: Thank you so much for joining us today, Madeline. I hope you join us for another talk.

Madeline Long: Of course. Yeah. Thank you so much, Amanda. My pleasure.

Amanda’s Closing Statements

Amanda Antell: Thank you for listening to the end of today’s episode. I hope you gained further insight into the gap between these communities like I did. The most interesting overlap I found between Madeline and other participants is the agreement that the medical model is highly flawed when treating neurodivergent patients.

As discussed in the podcast, this stems from old studies and outdated assumptions that cause a lot of biases, assumptions, and stigmas that plague neurodivergent communities. The takeaway I want listeners to have is to be aware that the divide is being noticed by mental health professionals and that there is a desire to bridge it.

Mental health professionals need to directly communicate with neurodivergent clients and remind them that they have the right to self advocate. I hope you enjoyed today’s episode and tune in for the next one.

Let’s Talk! Closing Accreditation

Carrie Cantrell: Thank you for listening to Let’s Talk, Portland Community College’s broadcast about disability culture. Find more information and resources concerning this episode and others at pcc.edu/dca. This episode was produced by the Let’s Talk! Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resources Department, and the PCC Multimedia Department. We air new episodes bi-weekly on our home website, our Spotify channel, and on XRAY 91.1 FM and 107.1 FM.