šDiscovering the Lost Generation: Melindaās AuDHD Diagnosis Story
š Iām back on the mic this week with a solo episode.
š® This week, Iām sharing whatās been showing up for me for the past couple of years as I go deeper into perimenopause, and that crystallized in April with an autism diagnosis.
So, with my previous diagnosis of ADHD, this makes for what we call AuDHD, which is a whole new lens to look at life.
This episode walks you through my story, from the time that I first learned about lesser-known presentations of autism in highly masked adults, especially women and AFAB people.
I share the resources and support throughout my diagnosis process, and where Iām at today, three months later.
Resources & References:Dr. Donna Henderson walks us through the autism diagnostic criteria for women and girls
Drs. Megan Anna Neff and Donna Henderson look at the āAutism Epidemicā and why diagnosis rates might actually be rising
Dr. Megan Anna Neff Website - https://neurodivergentinsights.com/
Divergent Conversations Podcast - https://www.divergentpod.com/
Dr. Devon Price - Unmasking Autism
Diagnostic Criteria Discussion and Infographics - https://neurodivergentinsights.com/dsm-5-criteria-for-autism-explained-in-picture-form/
Embrace Autism Autism Psychometric Tests - https://embrace-autism.com/autism-tests/
Lindsey Mackereth Neurocomplexity Resources - https://lindseymackereth.substack.com/
Amy Knott Parrish - https://www.rebelling.me/podcast
š Download the FREE Regular Eating Guideš® Sign up for the Departure Menopause EMAIL LIST for Future Episode & Updates-
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Melinda Staehling
Welcome to Departure Menopause, a podcast about weight inclusive and neurodivergent affirming care in the menopause transition. I'm your host, Melinda Staehling. On this podcast we discuss making compassionate health and positive body image change through practical steps and gentle care. To stay connected and go deeper, head to the show notes to subscribe and download the regular eating guide.
Welcome or welcome back to Departure Menopause. I'm your host, Melinda Staehling, and it's feeling nice to be back on the mic after a couple of guest interviews. We had Robin Gatter talking about ADHD meal planning and her ADHD perimenopause experience, and then Amy Chadwick's episode on Heart Health and her time with a non-MHT non-hormone therapy perimenopause.
I have learned so much from just doing these few interviews. Massive respect for all the podcast interviewers out there. It is not an easy task, and I'm looking forward to more in the future. This week in this solo episode, we're going to take a different turn. I've shared a little bit about my perimenopause journey and our opening episodes, and today I'm going to take a different path and I'm going to share about my recent autism diagnosis.
Which with a previous ADHD diagnosis is actually what we call an AuDHD diagnosis, a combined type of autism and AuDHD, and what led me to doing that and how I'm sort of processing everything in the months since. The formal diagnosis was in early April, and I cannot believe that it's already been three months.
That's blowing my mind, and I also launched the podcast in April. So much of why I started this podcast is to talk more about this neurodivergent experience in perimenopause and the menopause transition, and so much of that comes from my own realizations. Now looking back of going into this transition and probably what was early perimenopause where we don't have so many overt signs and symptoms, and then something is starting to feel off, and then there really was that cliff.
And I know for me, there were a lot of life transitions within that time. A little more backstory, during the pandemic, I had recently left my full-time job and career in wine sales and prior to that as a sommelier and I'd been in hospitality industry for decades. , I'd gone back to school in the fall of 2019 to get my Master's in nutrition.
So over those years of my master's degree and well into my clinical supervision, I was exposed to a lot more ADHD content. I think that the pandemic time when we were all on our phones a lot had something to do with that. And I saw so much of myself and my experience in that inattentive ADHD type, that type, that's not really been discussed as much until recent years.
I could look back at my early education and see where I had drifted off, even though I kept things together outwardly with good enough grades, and I saw the lifelong executive function challenges and the risky behavior, and so that ADHD diagnosis felt really on point to me. I went to my psych nurse practitioner for an assessment.
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I tried out medications and that seemed to fit really well. Well, some of the meds were a fail, but that's a story for another day. Backing way, way up, I was identified as gifted in early education. I think part of that was through testing, and then I was put in the gifted and talented program.
We can go down a whole rabbit hole about the privilege of that and what that might mean in early elementary, middle school, and high school. . My, my mom worked in city schools and public schools for her entire career, so we had a lot of access to those types of programming.
There was a summer program that was like a dream where you could take photography and study dinosaurs or journalism, and just going through the whole catalog was the best.
And with all of this achieving, I also experienced some pretty extreme burnout, which started in middle school. And I think that story probably comes full circle to this ADHD piece in a way that's been really enlightening for me as an adult to sort of reframe that part of my story.
So I think about the same time that I was discovering ADHD, I also did a dive into adult giftedness because that sort of tracked from my early life experience, and I learned more about this idea of gifted intensity or intensities that the gifted profile can be really spiky and have strengths in one area.
And that really resonated with me with not just academics, but the way I experienced the world in school. I was excelling in AP English, and at the same time, it was very challenging for me to even grasp some of the concepts in basic algebra by the time I got to high school.
And there was also that sort of perfectionist and sensitivity parts that up until very recently, I've always only thought of as anxiety. And yet there was still something, there was a part of that story that wasn't being explained. I've been in therapy, I'd say for the past 10 years or so with a number of different therapists and my, my diagnosis has always been around either anxiety or health anxiety.
I've struggled with depression over periods of time. But I also have a very low meaning no ACE score, which is the Adverse Childhood Experiences screener. I didn't experience that type of trauma. I had a very supportive home growing up with a lot of privilege and connection with my parents, and I think that the struggles that I faced have always felt sort of like a mismatch with how much support that I had in the home.
The way that I want to talk about diagnosis today comes from a talk between doctors, Megan Anna Neff, and Donna Henderson. They're both psychologists that work in the autism space and they did this recent chat together. I. It was after RFKs whole shebang about autism and creating an autism registry back in April, . So this was also Autism Awareness Month, and they did this talk about the rise in diagnosis and where that might actually be coming from. And I say might because I think they're really great in the talk about showing that it comes from a number of different places.
Like we combined a few different diagnoses and put them under the autism umbrella. We entirely missed populations for decades and decades. So it's not really a wonder that there's a rise in diagnosis.
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And so that was the subject of the talk, and they illuminate so much about the rise in diagnosis, even thinking about social media and connection and autistic people meeting each other and being able to find each other online and hook up and have sex and have kids, and all of the reasons why we're seeing a rise in diagnosis.
But there was one part of the talk that really hit home for me, and it was when Dr. Henderson was talking about clinicians and their sort of journey through autism and offering diagnosis and how that can be a real arc for a clinician because of so many reasons, like I'm sure that can have a lot of big feelings because it could really change the course of someone's life.
So the diagnosis arc started with awareness and then went into knowledge and then clinician comfort or the idea of being comfortable offering an autism diagnosis to someone and then finally, confidence and feeling really grounded and rooted in the work that you're doing. So that was from a clinician lens, but it's kind of how I'm seeing this arc of my personal diagnosis story right now. I really liked the words, so I thought I would take us through my diagnosis with awareness, knowledge, comfort, and confidence,
I also think that right from the start, and this comes up a lot in the Dr. Neff and Dr. Henderson talk, an autism diagnosis wasn't possible for me when I was a girl.
There was no presentation that fit with what I see as my diagnostic criteria and what I went over with my assessment, and I think it's only in the last, say, five to 10 years. When the DSM five came out in 2013, and then with the implementation of that, that we really started to identify that these presentations of autism um, came out and have been more accepted.
It was also at that time, I believe that ADHD and Autism could both be diagnosed at the same time. So this combo of ADHD and autism that is AuDHD was not a possibility either. Before that you could not have two of those diagnoses. So I think it's really important that I say that there's no, there's no grudge against my family or my education or the system that this was missed.
This was just not a thing when I was growing up. And I also know that the resources that were available at that time probably wouldn't have been all that helpful for me.
So this is the awareness piece, and I wanted to talk about what came to be a few years ago for me when I began to focus my private practice more on an eating disorder population, as well as a constellation of health conditions that I experienced myself.
So as far as the health conditions, I've had migraine for as long as I can remember. I am in the postdrome phase of a migraine attack, uh, today, which is my why. My voice might seem a little flat, I have histamine intolerance and mast cell issues that both come and go with my cycle and with the foods that I eat.
And Different stressors in the environment. And I have dysautonomia. I struggle every single day with sitting and standing and the list goes on. I have an autoimmune gluten condition.
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And so I see a lot of people in my private practice that have a similar, but not the same, but a complex health profile. So we talked about how much higher the rates of eating disorders are in the neurodivergent population. Back in episode two, if you work in the eating disorder space, you're going to work with ADHD and autistic people.
So working with people week after week and noticing that many, many of them are autistic,
and then working with practitioners in the same circles and also noticing that they're autistic and seeing an entirely different presentation of autism than what was in my head.
So come to find out, there's an entire lost generation of autistic adults where these diagnoses were completely missed. So I start working with autistic women, non-binary folks, different people that I'm in relationship with week after week after week. And I was like, oh my God, I've got this so wrong.
I think that I should also point out, for me personally, I'm an only child and I also don't have children, so I don't think this was reflected back to me either with my siblings or my kids.
And I know that a lot of people that are my age that have come to a later in life diagnosis have either seen autism first in their children or have a sibling that they might relate to, and I don't have that. So I think that's a little bit of what's going on with me as well. So that was the initial awareness piece where I just had a big light bulb moment and that led into knowledge, which is what I'm going to call my knowledge phase, which is still going strong.
So for the next, I'd say year and a half, two years. I became an autism hermit and started privately listening to the Divergent Conversations podcast, which is amazing, which again, is with Dr. Megan Anna Neff and Patrick Casal, and they're both AuDHD therapists. And once I listened to hundreds, I'd say many of these episodes I listened to on repeat with so much head nodding, I.
I think that might also be pretty autistic. Is I started to see more and more of this pattern emerge
[00:16:00]
and I realized how this late in life diagnosis could happen for someone who was previously like me, diagnosed with anxiety and depression, and had this complex physical health profile and still wasn't getting the results, like results in air quotes from therapy
so the knowledge piece really came from listening to audiobooks, listening to divergent conversations, listening to Devon Price, Unmasking Autism, and I'll link to all of these in the show notes. And then I started taking the autism assessments on the website, Embrace Autism.
There are a bunch of validated tools that you can go through when you're doing an autism diagnosis, and it's kind of up to the assessor which tools they're going to use. But if you're interested, embrace Autism has most of the scoring available for you, and you can take these screeners. And you can also read through where from the opinion of the website hosts, where the screeners might be affirming and where the language might be confusing to an autistic person.
And they do a really good job of explaining how the language in these screeners might be different for you if you're a woman or gender non-conforming. But I took these screeners over and over and I would take them with, like, I'd wear, I'd wear different hats. I am like, okay, today I'm gonna be my most autistic self.
I'm extra sensory sensitive. And then I would take it again and I would answer really conservatively, and every single time I scored above threshold, even when I was consciously, like I'm, I'm gonna tone it down and I would still score above threshold. So embrace autism. And then one more resource was Lindsey Mackereth from Method Counseling.
Uh, Lindsay has a substack and puts out all of these different resources that explain things in visual graphics, which is one of my preferred ways of thinking and communicating. Explaining how autism overlaps with ADHD, how giftedness might play into an autistic profile. And she has this phrase called neuro complexity that includes the AuDHD giftedness piece and also the physical health, the body mind piece, and weaves it all together.
And that was super affirming for me. So those Lindsey Mackereth newsletters and resources were a huge part of my learning journey. So that was knowledge, which is still going super strong.
Autism is definitely a top special interest. And at this point I'm going to talk about comfort, which is going to be my actual diagnosis process. Back in February, March, I'd met an AuDHD gifted friend in an online group.
Hi, Amy and Amy will be on the podcast, I'm sure coming up, but having this person to sort of walk me through the diagnosis process, who had been through this before and was more grounded in a late in life autism diagnosis than myself, they offered so many great questions and reflections for me, and that was so helpful and comforting.
And really like a balm with all of my nervous energy going through diagnosis. So I had my autistic buddy that was helping me to walk me through diagnosis. And then as far as the logistics, I had chosen to go through my insurance. And there are so many reasons in this country that you might not want to get a diagnosis.
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And I fully understand and appreciate that in the current culture and. Could I self-diagnose and be held in my own knowledge that this is something to be true for me, or did I want to work with a trained professional? That came up a lot. There's also the finance piece. It can be financially prohibitive to seek a diagnosis, and that's why I wanted to use my insurance.
You can't navigate. Navigate, you can't immigrate to certain countries if you apply for citizenship, from what I understand, if you have an autism diagnosis. So I think that we all, you know, have our both internalized and external social stigma about what autism means. So again, there's so many reasons why you might not want to seek a diagnosis.
And I wanna come out here and say, plant my stake in the ground. That I do believe that self-diagnosis here is totally valid.
But I had this question, and I think part of the reason that I really wanted to seek out a formal diagnosis was because my physical health symptoms.
Have so much overlap with what I consider to be my autistic profile, that I wanted to talk to someone and sort of tease that out, like what is migraine sensitivity and what is autism?
What is autism sending me into sensory shutdown potentially, and what is just exhaustion from sitting and standing and moving through the day?
I can look back to so much sensory sensitivity throughout the course of my life, and some of it overlaps with this physical health piece. So is that an autistic thing or is that migraine or some other health condition With like a tab open in the background. So I had a lot of questions there, and that was one of my reasons for seeking out a diagnosis.
And then the other piece, and I think I've sort of alluded to this, aside from Amy and some other practitioners in my life, I don't have a lot of autistic friends. And again, I don't have family or children where this is being reflected back to me. So I wanted to speak with a professional and absolutely a neurodivergent affirming, autistic affirming professional.
And I think that's a big deal too. And I initially set out to use my insurance and when I got to my first sort of intro appointment with a person that I had found, I learned that the wait list was four to six months.
So. When I learned that I wanted to get this thing going, so I went another route and I did do a cash pay assessment with an affirming therapist, and the whole experience was fantastic from start to finish. The logistics of the experience, just getting the information to me and the screeners that I needed to take, everything was super clear.
And they were just clearly the right person from the start and just like a very real person.
We had a two and a half hour initial assessment, and then after a couple weeks later, we went back and had another meeting for the diagnosis. Those two weeks in between, were a very, very long time in the interim, and I spent a ton of time on Reddit reading everybody's interim diagnosis stories and hearing how that felt, because that is such a strange time.
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What if somebody comes back and says, Nope, you're not autistic, and you spent the last, you know, few years of your life thinking that you were doing all of this research. I guess it would be fine either way, but that was a big question for me, and that was the feeling that was going on. And also with comfort explaining to my husband, that was one thing that felt really, really big when it was happening.
It felt a lot like I had initially told him when I wanted to quit drinking, that there was going to be some sort of tectonic shift in our relationship. And getting those words out at the beginning was super hard.
So that was comfort. That was having a friend, an autistic friend, to walk me through that experience and telling some people that were really close to me in my inner circle and having a wonderful, affirming therapist as my assessor.
One thing that they said to me during our sort of diagnosis slash wrap up session was, just because you have lower support needs or this type of presentation of autism doesn't mean that it's no support needs. You know, like this is something that still needs to be cared for and held going forward.
And that is a part that I'm really circling back to now three months after diagnosis. And then the last piece is confidence, and I think that brings us up to present Day three months later after diagnosis, I am sort of emerging from my autism shell where I needed some time to hang out and process. And now I'm looking to be more a part of community and am able to be here with you today and talk about all of this from a much more grounded state.
So that's the arc of my autism diagnosis, which like I said, to me, really feels like a combined type AuDHD diagnosis where there's a lot of push and pull between the two. And the whole point of the podcast is to really talk about what happens during this menopause transition and why things become so different.
Just last week, the British Menopause Society during their annual conference did a whole series of sessions on neurodiversity and menopause. ADHD and autism in separate sessions, and I just think that is so cool that now is the time that we're talking about this. I know there are other people out there that are having this conversation
and it just seems like a real cultural moment that we're realizing how the menopause transition and everything that takes place during that timeline can have such a big effect and impact on a neurodivergent profile.
I think I think that this piece that's been missed for so many decades in this older population, I'm speaking specifically here about the menopause transition and maybe what comes up for that time when we have this hormonal rollercoaster happening.
Until we can support people with their sensory profile and with their social communication profile and probably. The complexity of their physical and mental health together and really support their strengths too. I think we're just gonna continue to miss a lot of the population and people will continue to be either misdiagnosed or provided interventions that just don't really work.
And how great that collectively we're living in this time when not only is autism awareness to the point where we can recognize these different presentations, and we can also look at how that's affecting the menopause transition also.
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So that is what I have for you today around my autism diagnosis. I would love to invite you to my email list and there will be a link in the show notes where I'll have all the resources from today that I used throughout my diagnosis process on the website.
Thanks so much for listening today. Keep departing from the usual in menopause. Our podcast art is by Barb Burwell.
Thanks so much for listening. You can find show notes and links in our episodes and on Departure Menopause Club. If you enjoyed this show, I'd appreciate it if you shared it with a friend. Be sure to subscribe and download the regular eating guide. I'll see you next time on Departure Menopause.