Dr. Megan Anna Neff on Diagnoses and Misdiagnoses (It’s Complicated!)

Debbie Reber  00:00

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Megan Anna Neff  00:26

For a kid with sensory sensitivities, if they are dreading going to school, or they’re dreading going to the dentist, it’s because they know what’s going to happen. They know they’re going to go and there’s going to be a sensory, overloaded experience. That’s not anxiety. They might be calling it anxiety, because that’s the only word they know. But that’s actually dread. And anxiety is based on a fear of what might happen with anxiety. Avoidance just fuels the fire, and so you really target avoidance behaviors. Now you want to do the same thing with a sensory dread.

Debbie Reber  01:03

Welcome to Tilt Parenting, a podcast featuring interviews and conversations aimed at inspiring and forming and supporting parents raising differently wired kids. I’m your host, Debbie Reber. I think we can probably all relate to the challenge of getting a diagnosis that feels like it really fits our child perfectly. And that’s in large part because, well, our kids tend to be incredibly complex. Many of us see misdiagnosis among our kids or completely missed diagnoses. So I invited Dr. Megan Ann Neff, a clinical psychologist specializing in the support and empowerment of neuro divergent adults through her expertise in neuro divergent affirming care and assessment onto the show to talk about the complexity of diagnosis and the whys behind misdiagnoses. During this conversation, Megan Anna and I talked about so many different things, including diving deeper into the assessment process and why so many people slip through the cracks when seeking a diagnosis. Why it’s so important to get clarity around a child’s wiring in order to provide them with the support that will be most meaningful and affirming. Why identifying one’s neuro divergence, whether that’s through self identification or a medical diagnosis really matters and the kind of trauma a person can experience when they go through life without that diagnosis. We also discussed how to identify and vet neuropsych evaluators who take a neuro divergent affirming approach to the whole assessment process. As you can hear, we covered a lot of ground and I should share that I first learned about Megan Anna through her wonderful Neurodivergent Insights Instagram page and her popular Misdiagnosis Monday’s a series of visuals. Megan Anna herself is a late in life diagnosed autistic ADHD er, and she brings a unique perspective and a deep, deep passion for enlightening the mental health field about the diverse manifestations of autism and ADHD. Beyond the stereotypes, she translates research into visualizations which she shares on our website, Instagram and through monthly workbooks. And she has co authored two books and has published in several peer reviewed psychological journals. Her forthcoming book, self care for autistic people will be published in early 2024. Before I get to that, I want to be sure you know that Seth Perler. My friend, colleague, executive function coach, who’s been on this show many times, is getting ready for his next executive function online summit. The summit, which is called TEFOS, is going to be held August 11, through the 13th. And I know that Seth is going to as he always does over deliver on this event, he has a great lineup, and it’s all centered around practical yet unconventional strategies to help kids who struggle with any kind of executive function challenges succeed. You can learn more by going to tilt parenting.com/TEFOS, that stands for the executive function online Summit. I always learn so much from this event, and I guarantee this is one summit you don’t want to miss. Again, just go to tiltparenting.com/tefos to learn more and register. Thanks so much. And now here is my conversation with Dr. Megan Anna Neff.

Debbie Reber  04:27

Hey, Megan, welcome to the show.

Megan Anna Neff  04:29

Thanks so much for having me.

Debbie Reber  04:30

Good to be here. Yeah, I’m looking forward to getting into your work. But I would love if you could, as a way to get started. Tell us a little bit about your own story and how you got to be doing the work that you’re doing in the world right now.

Megan Anna Neff  04:44

Yeah, absolutely. Like a lot of autistic women and parents. My story starts with the identification of one of my children. And I’m seeing that so much. There’s this term. I really really liked the last generation of autistic women. And we could also talk Throughout the lost generation of ADHD women, and also gender queer and trans people and bipoc people, but the term that really resonates with me is this last generation of autistic women. And my journey was interesting because I was getting a doctorate in psychology. And so I, supposedly this is, you know, one of the highest degrees possible in the mental health world. I should know better, right? And it was interesting, with my oldest child, again, classic girl story. She had been diagnosed with ADHD at a young age, but every couple, like maybe every six months, I feel like it just doesn’t quite feel right. And I would look into autism. But then I’d go back to those stereotypes of like, no, but she enjoys people, and she can do conversations. And so then, you know, my spouse, and I would talk about and be like, No, can’t be. But it was about a month before I graduated, and kind of a very specific situation happened that led to a pretty significant meltdown. It was due to her taken him very, very literally, that was just obviously not literal. Me being autistic. I’m pretty direct. I was like, what if what if this is autism? What if this is something else? You know, she looked at me and she’s like, well, I’d be the same person, I would just understand myself better. So that started, like a research dive into autism and girls. And like, within two days of her and I learned about this together, we were like, Yeah, this makes sense. And that was later confirmed with a medical diagnosis. That led me down a rabbit trail around autism and women and realizing I was autistic, again, later confirmed with a medical diagnosis. It was shocking to me here. I am a relational psychotherapist, I love emotionally intense conversations. I’m pretty empathic and relational. And, you know, three weeks later, I graduated with a doctorate in psychology. So that was where I was just like something is really wrong with the field. I’ve struggled, I nearly missed my daughter, I miss myself for 37 years. And that’s, that’s where misdiagnosis Monday came from. That’s where my advocacy came from was just this realization of the mental health world, let alone the public. There’s so much misinformation out there and so much, we have to unlearn and relearn around specifically autism, but also ADHD and other forms of neurodivergence.

Debbie Reber  07:24

Yeah, your story as you’re sharing it, I’m thinking of Dr. Devin Price’s story is similar in some ways. We had Dr. Price on the show as well about his book, unmasking autism, which is fantastic. Such a good book. Yeah, game changer. I just find this so fascinating. And I hear this from so many people in my community through their children’s identification. They’re discovering this about themselves. I’d even like to go into that a little bit. I know there’s a lot of women now. Well, a lot of autistic adults in general, or ADHD adults are self identifying. And then you use this term medical diagnosis is medical considered when you actually go through a battery of tests or what is that?

Megan Anna Neff  08:07

Yeah, so medical diagnosis is when you know, a medical provider nights you with the official diagnosis. So self identification, I think actually got that term from Devin price. I really like that term. Because again, it’s moving away from diagnosis and pathology into like, this is an identity. Self diagnosis is also a term and I self diagnosed before as medically diagnosed. Now, that’s complicated. Because I had access to all the assessment tools, I had my IQ test, I was able to look at the data with a little bit higher, I guess, skill set just because I’m trained in it. I’m a big fan of self diagnosis, because there are so many barriers to diagnosis. And there’s frankly, a lot of mental health professionals and assessors who still don’t understand non stereotypical presentations of autism and ADHD. So just for accessibility reasons, and because of all the barriers people experience, yeah, I’m not against self diagnosis, a proponent of it, I do think there is so much information happening with neuro divergence now that I think it would be easy for someone to like see one tick tock real and identify with it for other reasons. So I suspect that is happening. But even so, I think the benefits of self diagnosis far outweigh the so-called risks.

Debbie Reber  09:24

Yeah, it’s interesting. I am not on Tik Tok, but I have been hearing about this, especially kind of high profile influencers or celebrities talking about their ADHD and then all of a sudden we have all these people who are now self identifying. I do think it’s a really interesting time. Actually, I’d love to hear your thoughts on that. It’s the way in which the COVID pandemic may or may not have contributed to this. I don’t know that explosion is the right word. But there has been a big influx of adults who are discovering more about their neuro divergence.

Megan Anna Neff  09:55

Yeah, I mean, I think it was a really interesting intersection of factors. For one COVID, for a lot, especially those of us with sensory sensitivities, gave us an experience of baseline. So for example, before COVID, for me, I mean, I’ve had chronic fatigue, since my children were born, and I just was coming to terms with this would be my reality, until the world shut down, and I was staying home, I didn’t know what it was like to not be sensory overloaded all the time, I didn’t know that this could be part of my experience. So I think for a lot of people, when things slow down, they’re able to experience a baseline. And then for ADHD years, when they lost structure, a lot of ADHD or is really started to struggle with the loss of structure. And so their executive functioning struggles became more apparent. Those of us who are parents, we are now working and parenting. I love Esther Perel’s idea that we weren’t working from home, we were working with home. So again, more demands in our executive functioning. And then at the same time, we saw this increase in social media education and awareness. And what I’m really excited about, and this is where I think social media has been really helpful, is it’s increased awareness around women, gender, queer people and bipoc people and how non stereotypical presentations. And once that lived experience got out there and we started moving away from things like the DSM or ICD checklists. People were like, oh, okay, this actually explains quite a lot. So we’ve also seen this surge of awareness of non stereotypical presentations while the pandemic was happening. So I think that has led wonderfully to a lot more identification of autistic and ADHD adults who, before were probably diagnosed with depression, anxiety, and many of who are confused of why am I not responding to treatment.

Debbie Reber  11:48

So there’s so many directions that I want to go into, I’m gonna rein myself in a bit. And I would love to talk a little bit more about Misdiagnosis Mondays, and we will do that as soon as we get back from a quick break.

Debbie Reber  12:01

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Debbie Reber  12:52

The way that I first heard of your work was someone in my community turned me on to your misdiagnosis Mondays, and I started diving into your website and the visuals you made. So could you tell us a little bit more about what misdiagnosis Mondays is and what you’re doing through that work and how you’re sharing it with people?

Megan Anna Neff  13:10

Yeah, first of all, it took off in a way that I wasn’t expecting. I started when I probably had like 400 followers on Instagram. So it’s kind of terrifying when these started going viral. But the reason I started it was really because of what I had experienced of realizing all of the diagnosis that I had had leading up to my autism diagnosis. I was thinking through also the like probably 500 Plus clients I’ve had in real estate like yep, I miss that person, I miss that person, I miss that person. And just realizing that autism could present as so many different things, especially borderline personality disorder, I think it’s a really common misdiagnosis for autism. And so I just wanted to create a visualization, I think in visuals, I think in images. So I wanted to create a visualization of why it makes sense that autism has been misdiagnosed. And so that’s why I wanted to create the Venn diagrams to show like, this is the overlap. This is how it could present. But if you dig under the surface, here’s actually the cause of why it presents this way. And then from there, I got interested in ADHD so I did a series on ADHD because that also can lead to a lot of misdiagnosis. I’m a little bit terrified by how viral the diagrams are. Because when I wrote them, I wrote them with a really long blog post article with like 20 research citations for every article. And when it lives outside of that context. I’m a little bit terrified of how many people can use this over simplified the really complex things, but mostly, I’ve heard from people that it’s helpful to have that visual map.

Debbie Reber  14:46

Yeah, that’s fascinating. And you mentioned borderline personality disorder. That is something that I didn’t realize that can commonly be mistaken for autism. Could you talk about that a little bit more? It’s really interesting.

Megan Anna Neff  15:00

Yeah, to clarify, it is possible to have both. Now for it to be both the experiences the traits or symptoms of BPD would have to be above and beyond kind of a traumatized artistic experience. I actually have a an ebook where I break down each of the kind of core criteria BPD and explain why it could look like that for an autistic person. One like sensory overload. And emotional regulation can look a lot like some of the hot emotional moments that we typically see with BPD. The tendency for all or nothing thinking for a person to become a special interest and idealized and then like the moment something turns that person, again, because of that all or nothing thinking that person maybe becomes devalued. That can look like BPD idealization, devaluation. And that’s something a lot of people don’t realize people can become special interests for autistic people. And so that can bring on a lot of like attachment stuff and emotion stuff that again, can look a lot like BPD, there’s a few sense of self, if someone is a high masking autistic person, it means our social self is really diffused, because we’re constantly cueing into the other person to figure out who we are. BPD is characterized by a very kind of diffuse self that changes depending on their environment, who they’re with, or just as a struggle to have a stable sense of self. I could go on, but I’ll stop there. Those are some of the reasons that an undiagnosed autistic person could look like they had BPD.

Debbie Reber  16:34

It’s so fascinating. And you said that you could have both someone could have both BPD and be autistic. It reminds me that when my child was very young, and the very first formal assessment, we went through, I think when my child was 513 14 years ago, we were told you can’t be ADHD and autistic, those cancel each other out. giftedness wasn’t even factored into the equation, could you just clarify that it is possible to have multiple things going on? Correct?

Megan Anna Neff  17:06

Yeah, it is, it is. And that’s been a change to the DSM. And that’s partly why it’s so under research. I mean, thankfully, we’re catching up. But the overlap between autism and ADHD is huge. But we’re really kind of just the beginning of that research. Because until the recent version of the DSM, yeah, it was said that you couldn’t have both, you couldn’t be diagnosed with both. That’s not true anymore, which is great. With personality disorders, you want to rule out ADHD or autism or neurodevelopmental conditions before diagnosing the personality disorder. And then you want to make sure that the symptoms you’re seeing are not explained by the neurodevelopmental condition. So for example, for me when I’m assessing or diagnosing, first of all, I want to address the neurodivergent trauma before I even consider a personality disorder. Let’s get that person sensory regulated, let’s address the trauma of, you know, a neurodivergent person that’s undiagnosed for X amount of years, and then maybe it could be beneficial to reassess to see if they meet criteria for a personality disorder. But I think first addressing the traumatic neurodivergent experience is really important.

Debbie Reber  18:19

So that’s the second time you brought up trauma. And so I’d love to unpack that a little bit. Because obviously, we know that environments can be traumatizing school. I hear from so many parents whose kids are traumatized through school experiences. But I’d love to know you said specifically if someone has been undiagnosed and the result of that and going through their life, what kind of trauma would you expect to see? Or are you looking for when you’re factoring that in?

Megan Anna Neff  18:47

Yeah, and I really like Kelly Mahler’s work here, she’s occupational therapist, I mean, we have to really think beyond the big T traumas. So for example, sensory trauma, just like low grade or medium grade, chronic sensory trauma that is really grating on the nervous system, social trauma of being perpetually misunderstood, Miss attune to, but not knowing why. Bullying, a lot of victimization and bullying. So those experiences, they might not sound like the classic traumas. But if experience at a chronic and pervasive tone throughout the lifetime can absolutely lead to a traumatized nervous system, and a traumatized view of self. And then beyond that, there’s also reasons that we are more vulnerable to the big T traumas are more vulnerable to be victimized. There’s a study that came out. Nine out of 10 autistic women talked about being sexually victimized at some point. We are very naive. We’re very gullible. We’re very vulnerable, especially if we’re not identified. We don’t know we’re vulnerable. So we might put ourselves in situations that An allistic person would know like that’s a dangerous situation, don’t do that. Because they’re the context cues that they’re picking up that that we might not. So there’s also loads of big T trauma that happens. It’s kind of a traumatizing world when you’re neurodivergent. And then when you’re under supported, because you’re not identified, it leads to the confusion, which tends to lead to a lot of internalized shame for neurodivergent people.

Debbie Reber  20:27

Yeah, I just need to take a deep breath because it sounds and feels overwhelming. If you think about parenting a child who may have a lot of this little T trauma, but building up and building up and then trying to get our kids to support. We know that so many therapists in kind of a traditional therapeutic model don’t necessarily understand the neuro divergence piece. They are focusing on the symptoms, the anxiety, the depression. And my hunch is that it is really important to address this trauma before any of that other support can happen. How do we even support our kids in getting back to baseline if they do have that built up trauma in their systems?

Megan Anna Neff  21:05

Yeah, when we hop off this call, I’m finishing up a blog post right now on the importance of sensory regulation. And that’s because sensory regulation is the foundation of other regulation systems. So we can’t be regulated in our nervous system, in our emotions, in our actions and our focus and attention when we’re sensory dysregulated. And that’s the piece that’s often missed by mental health providers, when if they don’t have the neuro divergent lens, they’re like working higher up on the hierarchy of regulation. And so if parents can come in and really understand and have a sensory lens and think through, okay, what are the sensory demands of a day of life and the day of my child? And how can we move towards sensory regulation? How can we build in sensory detox time? How can I drop some demands that are very like high sensory demands, parents can come alongside and really help facilitate sensory regulation. So that would be one thing that comes to mind.

Debbie Reber  22:03

Yeah, thank you. That’s really helpful. So when we’re thinking about specifically ADHD, and autism, and anxiety, anxiety seems to be something that could be on its own, or it’s something that often co-occurs with anxiety and ADHD. I’d love to know how important it is to kind of understand. I don’t know if it’s a chicken and egg kind of thing like to just understand deeply, what exactly is going on here? And how does that affect the supports we might seek for our kids? Yeah, I

Megan Anna Neff  22:34

Yeah, I think it’s extremely important, because the supports and the treatment are going to differ. Dr. Jonathan Dalton talks about this, I actually just listened to a training he did that was fantastic. That talked about the difference between, for example, anxiety, and dread. And for a kid with sensory sensitivities, if they are dreading going to school, or they’re dreading going to the dentist, it’s because they know what’s going to happen, they know they’re going to go and there’s going to be a sensory overload experience. That’s not anxiety. They might be calling it anxiety, because that’s the only word they know. But that’s actually dread. And anxiety is based on a fear of what might happen with anxiety. Avoidance just fuels the fire. And so you really target avoidance behaviors. Now, you want to do the same thing with a sensory dread. And so the treatment is very, very different. Same thing with ADHD and anxiety, is the child anxious because they can’t trust their mind, because their working memory is struggling, and they can’t hold things in mind. And so they’re anxious because they know as soon as they transition, they’re going to lose that thought we would treat that differently than the pure anxiety.

Debbie Reber  23:47

Yeah, that makes so much sense. And I feel like we could do a whole conversation on that. Very fascinating, because I’m sure you’re reading the same reports I am about this spike in anxiety and depression among young adults and teens, adolescents and tweens. I’m just really interested in how that is being supported. And whether or not the modalities that parents are using or therapists are using are actually effective, you know? Yeah, I would love to just before we wrap up, talk a little bit about the assessment process. And I know that you focus primarily on adults. And I know there are going to be a lot of parents who are listening to this who are wondering how do I go about finding the right person that comes up in listservs? All the time that I’m someone who really understands complicated kids, and I know you talk about neurodiversity affirming assessments. And so I’d love it if you could talk about what that is. And maybe what are some signs that someone might be neurodiversity affirming in the way they approach evaluations?

Megan Anna Neff  24:47

Yeah, so some language signs that might be there would be just even talking about neuro divergence. Now I will say that’s becoming a little bit of a catchphrase which is both good and bad. Good in that I like that people are starting to think differently outside of pathology. But then there’s a lot of people who are putting that, like sprinkling that on their websites. But then if you go deeper, you realize their principles actually aren’t neurodivergent affirming, but looking for language around like neurodivergent, affirming neurodivergent and forms language such as like ASD, Autistic Spectrum Disorder, they’re going to be working from the more traditional paradigm. And so that’s going to be a different experience. As far as assessment tools, I really like the Migdas, it’s better at capturing non stereotypical presentations of autism. Frankly, I think it’s better at capturing girls and genderqueer children and again, non stereotypical presentations. So even if they’re only using the Athos, that’s kind of considered the gold standard. For children, that would be something I’d be paying attention to it aspect, you also use elements of the mythos. And then how they talk about autism, on the again, on their website, you’re gonna get a lot of those language signs of how they’re talking about it, the difference in regards to the assessment and the report, the measurements are pretty much the same other than those of us who are doing affirming assessments tend to like the MC Das, but the language of the report is going to be really different. Traditional reports, it’s so deficit based, this child can’t do this, the child can’t do that. Whereas an affirming report is going to talk about brain style, brain style differences, strengths of the autistic or ADHD brains route, as well as like, these are areas of struggle that there are some support needs, because they’re navigating an allistic world. So the languaging of that report is going to feel really different. And then the messaging to this child as well, you know, whatever message a parent receives around a diagnosis, they’re going to take that in, and that’s going to influence how they talk to their child about the diagnosis. So language of brain style and differences. This is so important, I think, in the assessment process, because that sort of messaging, and it’s going to be so much more empowering for a child than deficit based language.

Debbie Reber  27:11

Yeah, that’s so helpful. And I think that’s where so many parents at least come here to Tilt, if they’ve just gone through that process. Some of them are traumatized, by the way the report was presented to them the language that was used, the urgency behind the interventions, and all of that stuff. So it is a good reminder to take your time and trying to find and then of course, we know there are a huge waiting list, but to take your time and finding the right person who will really have that strengths based approach,

Megan Anna Neff  27:40

I kind of want a new onset of it. It’s just so hard to get an assessment. And if you’re trying to get your child accommodations, get the assessment where you can like if you can get a lower cost or free assessment through the kind of medical system you’re in, and then learn ways of how you’re going to message it to your child. So yes, when possible finding information assessment, but I fear that that message could also lead to more parent paralysis of like, it’s so hard. And if you need that diagnosis to get access to occupational therapy or accommodations, there are ways that you can be a buffer in how you’re messaging the results to the child.

Debbie Reber  28:19

Yeah, that’s great. I don’t know if you’ve read Megan Ashburn and Jules Edwards book, I Will Die On This Hill, have you heard of that book…

Megan Anna Neff  28:27

I’ve heard of it, but I haven’t read it yet.

Debbie Reber  28:29

It’s really great. I loved it. They’re actually on this season as well talking about it. But one of the things that Jules, who is an autistic adult raising autistic kids talks about is taking an autism moon. So instead of a honeymoon, or baby mood, just taking a year when you have that information to just come to a place of peace about it yourself to really take the time to research, how do I want to support my child and slow things down?

Megan Anna Neff  28:55

Oh, I love that experience as soon as the diagnosis is like, here’s 10 interventions you should do right now. If you put your kid in 10 interventions, you’re gonna burn them out, and you’re gonna burn yourself out. I love that idea of autism Moon, I often say that to parents to have like, pick one, pick one out of the list, pick the one that your child is most interested in. Take your time.

Debbie Reber  29:17

Yeah, that’s great. I’d love to have you back in the future specifically to talk about girls and autism. I’ve heard you talk about that elsewhere. And that is an interesting exploration. And I think we could go deep on that. But before we wrap up, I know you have a book that you’re working on self care for autistic people, but you tell us a little bit about that project.

Megan Anna Neff  29:35

Yeah, I’m really excited about it. It’s with Simon and Schuster. It should be out early January 2024. But it’s really kind of bite size information like, here’s 100 plus tips of self care strategies for autistic people. Probably more geared for adults and teenagers. But I think you know, if parents were to read it, they’d be learning about the inner workings of an autistic mind and body.

Debbie Reber  30:01

That’s exciting. Where are you in the publishing process?

Megan Anna Neff  30:03

I am. I’m in the middle of a sprint. I was contacted about this project recently, and I’m turning the transcript over four months. So you know, you can be sending me positive energy. Last time I wrote a book, it was like a 15 month process, not a four month process. So I’m in the middle of writing that.

Debbie Reber  30:22

All right, well, we will send your energy to get to the finish line. I know what a huge lift it is to do before we say goodbye. Where can listeners connect with you and learn more about your work?

Megan Anna Neff  30:32

Yeah, so I am on Instagram neurodivergent_ insights, the best way to get in contact with me would be my email. And then my website neurodivergent insights.com. I have a membership area where there’s lots of workbooks and resources. And as well as a newsletter, I have a newsletter for families, that newsletter is probably best for your listeners, because that’s where I talk more about parenting and children.

Debbie Reber  30:57

Awesome. Well, listeners, I will have links to all the places that you can connect with Megan on the show notes page. It’ll be pretty extensive. I’ve taken lots of notes during this conversation. So Megan, I want to just thank you so much for everything you shared today. And I just really appreciate you sharing with us today.

Megan Anna Neff  31:15

Absolutely. Thank you so much for having me on. And this is obviously a really near and dear topic to me. So thank you for making the space for this conversation.

Debbie Reber  31:26

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