Christine: Welcome to Between Us Neurodivergent Conversations, a podcast about autism, ADHD, or DHD, and the female experiences that often go unseen behind the mask. This podcast exists because we couldn't find conversations that reflected our own experiences as lay-diagnosed and discovered neurodivergent women and mothers in our forties. We're parenting neurodivergent children while also learning to better understand ourselves. And create a life that allows our nervous systems to thrive, not just survive.
Mareike: To sharing authentic conversations, lived experiences, and everyday challenges, we hope to create a space where women feel seen, understood, and a little less alone. You might just recognize yourself in our stories and realize you're neurodivergent as well or someone you know. We'd like to gently remind you that everything shared in this podcast is based on our personal experiences, reflections, and research. It is not intended as medical, psychological, or diagnostic advice. Welcome back to Between Us, Neurodivergent Conversations. Today, we are opening a brand new chapter of our podcast. We are officially kicking off our diagnosis journey. In part one, we'll take you along on the journey before the appointment. So over the next three episodes, we'll dive into everything that happens before a diagnosis, the questions, the doubts, the research, the waiting, and all the emotions that come with this part of the journey. Christina has already been through the process, I'm still waiting for that appointment in my own next chapter. throughout the series, you'll hear both hindsight and uncertainty, reflection and anticipation side by side. Hi, Christina. I can't wait to start this diagnosis journey with you.
Christine: Hey Mariah Cat and everyone. Yes, this will be such a special journey for us to share. We've both experienced this process in different ways and I think that's what makes this conversation so important. So after the past eight episodes where we've been learning and exploring ADHD, autism and all the HD women talking about masking, sharing our personal stories and reflecting on what it means to unmask. It felt like the most natural next step for this conversation. for our journey together to explore what comes next. Because for many women, understanding themselves is only the beginning. At some point, another question often follows. Should I seek a diagnosis?
Mareike: Yes, after a year of waiting, my son finally got his autism diagnosis in April this year. And while we are recording, I will have my appointment for both autism and ADHD soon. And yeah, so this is a perfect opportunity to share my feelings while waiting and for Christina to help me through a lot of questions I have. Because getting an adult diagnosis as a woman is not just a medical step. You know, it's an emotional journey that often involves long waiting lists, paperwork and uncertainty.
Christine: Absolutely. And I'm sitting on the other side of that bridge. I've already been through the fire and I have both my official diagnosis on paper and we'll talk about all the feelings before and after. All in all, I've gone through 11 assessment appointments in 16 months. Both my girls ADHD assessments with a clinical psychologist and then again, both with a pediatrician so they could access their ADHD medication. Then my assessment with a clinical psychologist. And six months later, an ADHD assessment with a psychiatrist to access medication for myself. And then finally, my autism assessment.
Mareike: Wow, I honestly couldn't have wished for a better person to have by my side as I prepare for this appointment. So no matter where you are on your own journey, questioning, waiting, preparing or choosing not to your formal diagnosis, we are so glad you're here and we hope these conversations help you navigate this part of the journey with a little more clarity and self-compassion. So the first question that we want to start with is why did we start wondering? So looking back, We can now see that we've spent years looking for answers, but we weren't looking in the right place because ADHD and autism weren't even on our radar. We covered that a bit more in our first episode and also in our personal stories in episodes five and six.
Christine: Exactly. We weren't asking questions about our neurodivergence. The question wasn't could I be autistic or could I have ADHD. It was why does life feel so much harder for me than it seems for everyone else?
Mareike: Yes, we looked everywhere except neurodivergence. We wondered about trauma, hormones, anxiety, stress. I thought there had to be something I could fix. And then my son came along. So it wasn't my own struggles that made me think about ADHD or autism. It was trying to understand him.
Christine: Yeah, and my story is actually very similar. It was also through my girls that I started seeing things very differently.
Mareike: Yeah, I was trying to understand why he experienced the world so differently. I didn't even know that ADHD and autism existed in women at all at that stage. And if someone had suggested it back then, I definitely would have said no. And to be honest, I never thought my son could be autistic. When he was around three, I searched online because a few things caught my attention. But everything I read described children who were nonverbal, didn't respond to people or avoided eye contact. And that simply wasn't my son. Yeah, so I closed the laptop and convinced myself I was worrying for no reason. I thought, you know, let's wait and see. And more than three years later, I searched again. And this time I discovered descriptions of autistic children who looked so much like my son that I remember thinking, my God, that's him. And the more I learned, the more I quietly started recognizing parts of myself and not just me, my mom actually made me aware that she recognized me in a lot
Christine: Mm-hmm.
Mareike: of those behaviors. And from that moment until my son received his diagnosis, almost a year and a half. And during that time, I immersed myself in everything I could learn about autism. And later, ADHD.
Christine: I think that's such a common story for so many women. We start looking for answers and for our children and somehow we end up finding ourselves. And then there was also the time when we started having our conversations about this, know, sharing our struggles really honestly and describing experiences I thought were uniquely mine. And suddenly I thought, wait, you do this too. And
Mareike: Yeah.
Christine: I think it was, that was such a huge benefit that we had asked and our conversations between us.
Mareike: yes, and it also showed how different and unique each experience can be, but still so similar in its course. So the
Christine: Yeah.
Mareike: diagnosis journey didn't begin with me asking should I get assessed, it began with me trying to understand everything about it and that was enough for me at that time.
Christine: Yeah. Recognising yourself and deciding to pursue a diagnosis are actually two very different things.
Mareike: Yeah, I never imagined I would seek a diagnosis for myself, at least not before my son's diagnosis was confirmed. Deep down, I kept thinking, what if I got it all wrong? What if he is an autistic? Then surely I can't be either. It felt as though I hadn't earned the right to even ask the question, let alone ask for help.
Christine: Yeah.
Mareike: That's really weird. I worried that I was making it all up. And so even though deep down I knew, and that led me to the big question, what actually is a diagnosis? because sometimes it can feel as though every saving one suddenly turns you into someone you weren't before.
Christine: Well, a diagnosis doesn't create ADHD or autism. You know, you were already ADHD, autistic, or both before someone wrote an assessment report about it. A diagnosis identifies something that already exists. It gives language and a framework to something that has already been part of your life. And ultimately a diagnosis is one professional's opinion based on the evidence that is available at that point in time. That doesn't mean it's meaningless, but it also doesn't mean one clinician has the power to define your entire experience.
Mareike: Yeah, that's a really good point. And actually, perfect timing to ask you, Christina, how did your diagnosed journey begin and why?
Christine: Yeah, that's a long story. for me,
Mareike: I'm prepared to listen.
Christine: ADHD diagnosis journey actually started with my oldest daughter. At that point, I didn't really know anyone with ADHD and I didn't know much about it beyond the stereotypical image of the hyperactive little boy. I knew my daughter was struggling and around that time I happened to speak with an occupational therapist. she had shared with me that she'd recently been diagnosed with ADHD herself, as well as her children. And I, yeah, it was my first opportunity really to actually quiz someone, you know, about it. And, so ask her a lot of questions and what she shared sounded very much like my daughter. I queried her about what the process looked like of getting a diagnosis, especially since where we lived. I've been hearing in the media that there's incredibly long waiting lists, like two or three years to even get
Mareike: Yeah, that's normal.
Christine: an assessment. So I thought maybe this just wasn't something that really was realistic for us to access anytime soon. She told me who she'd seen for her assessment and absolutely raved about the experience. So asked for the details and I contacted the clinic and incredibly we managed to get an appointment the following week.
Mareike: Wow.
Christine: So it was kind of, yeah, just fell into our lap, I think. and at that stage, I just had this feeling that something wasn't quite right and that it was worth exploring further. I wanted to share, and I wanted to share a little bit more about our very specific situation. we had our assessment with an incredibly proactive and well-trained clinical psychologist who specializes in ADHD, autism and giftedness. I feel so lucky that we found her. so that recommendation really, yeah. was just magical to find her. And
Mareike: Yeah.
Christine: she identified all three, so the ADHD, autism and giftedness in both of my girls. And they're what's called twice exceptional or 2E. And this refers to individuals who have high intellectual potential or gifted abilities alongside a neurodivergent profile or learning difficulties. They show exceptional talent in areas like reasoning, creativity, or specific academics. or simultaneously facing challenges such as ADHD, autism, dyslexia, or other sensory processing issues. And the core characteristics of the two-year profiles are asynchronous development. So skills and mental growth develop unevenly. A child might reason at a high school level by struggling with basic handwriting and organization. And mutual masking, so the high intelligence can actually high to the learning disability or disability can obscure giftedness, leading to an individual appearing average and missing out on proper support. It's very much a spiky cognitive profile where there's really strong capabilities coexisting with significant barriers, which can trigger frustration, anxiety, or misdiagnosis in standard school environment. And my oldest daughter had slipped through those exact previous assessment. So it really takes someone experienced and properly trained to uncover this. The WISC-5 is not used to diagnose ADHD. Instead, it's used as like an intelligence test measuring general cognitive ability. So this is the assessment that my daughter had, but it also highlights specific weaknesses, you know, like in, for example, working memory or processing speed. And that's very commonly the case with ADHD. And this was exactly the case with my daughter's potential. She's got vast potential in verbal comprehension, visual, spatial, and fluid reasoning, well above the average, but her working memory and processing speed lag behind largely. And that's causing huge challenges and frustrations for her. And this discrepancy was then explored further via ADHD parent and teacher questionnaires. So as part of my daughter's assessment, there was also detailed family interview. This was actually how all of this sort of assessment was kicked off. And we talked about her development history, birth history, childhood, family background, all of those kinds of things. And during that assessment, the clinical psychologist already suggested that my other daughter, you know, almost certainly has ADHD as well, as well as myself and that I should get myself assessed. And that was the first time anyone had ever said that to me. And I remember at the time thinking, surely not, this can't be right. I was really surprised and I was in disbelief. But we continued with my oldest daughter's assessment and it was an incredibly positive experience.
Mareike: have to say here, it's so interesting that you sort of stumbled upon the diagnosis by chance
Christine: Mm-hmm.
Mareike: without even thinking about it, you know, even even wanting it or believing it.
Christine: Yeah, yes, I feel it very much was meant to be, you know.
Mareike: Yes.
Christine: What I loved about the WISC-V was that it wasn't simply focused on deficits. yes, I completed the ADHD questionnaires, you know, as her parent, but the assessment was really about understanding how her brain worked. And it looked at our cognitive profile across different areas. highlighting both strengths and challenges. It was very, very strengths-based and the clinical psychologist was absolutely incredible. She was reassuring, validating and really supportive throughout the whole process. And I honestly couldn't have wished for a better experience. My daughter came out of this process, seeing how her brain works in amazing ways and that she should be proud.
Mareike: You know, that's exactly how it should be, you know, reassuring and also your strength, strength based. Absolutely. Yeah.
Christine: Yeah, yes, yes. We felt so positive after the assessment. Like she just experienced what our brain is actually capable of and that the school system, the environment was what was actually making things difficult, not her brain. And while this was great, later on the ADHD assessments with the pediatrician in comparison were very different. You know, they were much more focused on challenges and things the girls struggled with. It was a completely different process. It felt very negative and it offered no strategies at the end of it. But I'm getting ahead of myself. I have to backtrack a little bit. So my oldest daughter has been assessed with a WISC-V and the ADHD questionnaire. And during that process, it was also suggested that my younger daughter should be assessed. And I remember hesitating at the time. I was fairly convinced she didn't have ADHD and the cost of several thousand dollars worried me, you know, what, what if
Mareike: Yeah.
Christine: we didn't get a diagnosis and Looking back now, that was simply because my understanding of ADHD was still very limited. But then I asked myself a question, how would I feel if we didn't investigate this? And if 20 years later she was diagnosed as an adult and after struggling all the way through school and early adulthood, how would I feel? And I knew I wouldn't be comfortable with that. So if we'd given one daughter the opportunity, then we'd also have to do it. for my other daughter. so we went ahead with her assessment as well. And my younger daughter was diagnosed with ADHD too. And
Mareike: There you go.
Christine: yeah, upon receiving the diagnosis, they prompted me to enroll in a 14 week ADHD course. So I could learn everything so I could understand my girls and I could support them to the best of my abilities. That whole process, although done really nicely and very supportive, it was incredibly overwhelming for me. And it also made me realize that I wanted to understand my own brain. At that stage, I was already in burnout and I had stopped working and my life had essentially fallen apart. I had no idea how to put the pieces back together again. And pursuing an ADHD assessment felt like It was a worthwhile step towards understanding myself better and hopefully finding ways to function better again. That was my hope. So I completed a very thorough ADHD assessment with a clinical psychologist who specialized in adult ADHD. There were several appointments, lengthy questionnaires and very detailed interviews.
Mareike: actually I remember that so well. You were already on
Christine: Yeah.
Mareike: this journey and shared so much of what you were learning with me and at the time I was only looking into autism because of my son and ADHD never even crossed my mind as well. I still had all those stereotypes in my head and honestly thought everyone gets labeled with ADHD these days. I believe that if we simply change the environment, do homeschooling, most of the struggles would disappear. And the funny thing is back then autism wasn't even on your radar at all. Yeah.
Christine: Yeah. Yeah. yes. It's, it's funny really how that all played out. Yeah. And we started from completely different places and falling to very different paths. And somehow we both ended up at the same destination or DHD.
Mareike: Yes.
Christine: And at that stage, I still didn't really understand ADHD. I simply answered the questionnaires as honestly as I could. And I gave lots of examples of my struggles and coping strategies I'd learned over the years. And that's when I received my own. ADHD diagnosis. Looking back, I really only pursued that assessment because the clinical psychologist had encouraged me to. She essentially said, you really need to get yourself assessed. And yeah, and then I spent the rest of 2024 diving into understanding ADHD, learning about medication options, strategies, what are the executive functions, you know, this was all new to me and
Mareike: Hmm.
Christine: how ADHD presents in women. I immediately began implementing many of those strategies into our home education, into daily life. And yeah, as you just mentioned, autism, however, was a very, very different journey. After we'd seen that clinical psychologist for my girls, they diagnosed my girls a few more times, she suggested that autism might also be present for both of my daughters. And she gave me the assessment questionnaires and suggested I'll go through them and complete them. At that point, when she handed me those questionnaires, did have, I had no capacity whatsoever to, deal with that. I'd only just begun processing ADHD and I was completely overwhelmed. So I put the questionnaires away for about four or five months and didn't look at it at all. And eventually as I slowly regained some capacity, I picked them up again. And as I worked through them, I started recognizing. many things. More importantly, was the first time I'd really began to understand what autism actually is, or really how it presents, you know, what an internal experience it can be. Before that, I didn't know anyone that is autistic. And I honestly had very little understanding of autism beyond the common stereotypes.
Mareike: Yeah, and at the same time, so much of what I was learning about autism reminded me of your eldest daughter sometimes. And
Christine: Hmm.
Mareike: when you started looking into autism yourself, I remember thinking, that's strange. know, autism and ADHD had always seemed to look like two completely different things to me. And yet the more we learned, the more they seemed to overlap. And that was the first time I realized how closely connected they can actually be.
Christine: Absolutely. Yeah. And one thing I realized very quickly was that many autistic experiences, particularly sensory experiences, are incredibly internal. They're not necessarily
Mareike: Yes.
Christine: obvious to anyone looking in from the outside. So I sat down individually with each of my daughters and worked through the questionnaires together. Rather than simply answering yes or no, we talked about each question. I'd give examples and we'd explore the experiences together and In doing so, I learned an enormous amount about both my daughters, but I also learned an enormous amount about myself. And that was the point where I realized I'm autistic too. And from there, it's...
Mareike: Yeah, that's such an interesting point when you suddenly like, wow, you recognize everything and everything that's puzzle pieces coming together that one little piece that was missing that you may didn't find in ADHD suddenly is there, you know.
Christine: Exactly. It was just, it was such a revelation. And from there, I immersed myself then in learning everything I could about autism. See, there's bit of a pattern there. I have to understand it. I have to figure it out. it
Mareike: Yeah, it's hard to focus.
Christine: didn't take very long before I realized that autism actually explained me more than ADHD did. Or
Mareike: Yeah.
Christine: maybe my autism had been hiding my ADHD all along, you know, but suddenly everything. made sense and I finally understood why so many strategies I tried throughout my life, things like the cognitive behavioral therapy had never really worked for me. It wasn't because I hadn't tried hard enough. It was because they weren't designed for an autistic brain. And for a while, I didn't actually feel any urgency whatsoever to pursue a formal diagnosis. I was learning so much. I was making changes in our everyday life. I was understanding my sensory needs. I was implementing strategies that were already making a real difference. And that learning itself was incredibly validating. It was as if I had finally been given that instruction manual that I had missed out on when I was born. But eventually though, I realized I wanted a formal diagnosis, not because I doubted myself, but because I wanted external validation. So I booked an appointment. booked an assessment at that point, it was like a four month wait. And during those four months, I constantly changed my mind. So one day I'd think, yes, I absolutely want this assessment. I can't wait for it. And then the next day I'd be like, I don't need this at all. I should just cancel it. And I even remember saying to someone about a week before the appointment, I don't actually know why I'm going ahead with this assessment.
Mareike: I'm actually so glad you say that. I'm so into this right now. Everyday changing my mind.
Christine: Yeah. Yeah. And, know, by then I already knew I am autistic. There was
Mareike: Yeah.
Christine: nothing that that psychiatrist could tell me that would change that. I knew it so deeply. In fact, I remember thinking that if the assessment didn't conclude that I was autistic, then there will be something wrong with the assessment process, not with me. You know, that's how certain, that's
Mareike: You're so short.
Christine: how certain I had become, you know, even so.
Mareike: The specialist.
Christine: Even so, I went ahead with the assessment and once again, it turned out to be a really positive experience. The clinician specialized in assessing adults, understood ADHD and autism and had a really deep understanding of masking and women. And it also included masking questionnaires as part of the process.
Mareike: That's really good.
Christine: But regardless, I was like unbelievably nervous beforehand. I was so, so anxious. I was absolutely beside myself. But the assessment itself was beautiful. It was validating. was, it was really compassionate. And the psychiatrist even apologized to me for the ways that I've been let down by the medical system over so many years. That was, yeah, that meant that, yeah, that meant more than I can explain.
Mareike: That's what you want to hear sometimes after decades. Yeah. Yeah.
Christine: And after that assessment, had tears streaming down my face and I felt this massive weight lifted off my shoulders. You know, finally I had an explanation why life had been so hard for me and why I burnt out and why I couldn't work anymore. And it wasn't my fault. A lot of the shame fell away. I had been blaming myself for decades, my entire life. And now I finally knew why my life had gone the way it had. And when I received the final report, it validated so many of the struggles I'd experienced, the burnout, the exhaustion, the inability to juggle everything, work, family life, all of it. And the shame I'd carried after having to stop working, the feeling that I couldn't admit I simply wasn't coping. So I had to come up with other explanations. Reading that report removed so much of that shame. It was an enormous relief and yeah, but after that relief, there came a lot of grief. You know, I find myself revisiting so many memories through an entirely different lens. There was a lot of sadness for everything that, yeah, that it hadn't been recognized sooner. You know, why could this not have been picked up sooner? But alongside the grief came something that I'd never really given myself before, compassion. compassion for myself, compassion for hard I, how hard I had tried and compassion for how unsupported I'd been. And looking back now, I would say that both diagnosis were incredibly emotional journeys. There was an enormous, like enormous amount of energy. Yeah, yeah.
Mareike: I wanted to say it's up and down. just emotional ups and downs and so many feelings at once, I guess.
Christine: Yeah, yeah. It was just a nerve wracking roller coaster ride that I think only people that have gone through that process will understand. And by choosing clinicians who truly understand ADHD and autism, particularly how they're presenting women and how masking can hide so much, the experiences themselves turn out to be incredibly positive, validating, compassionate, and ultimately they helped me replace decades of self-blame with understanding. So what about you Marike? What changed for you about making that appointment?
Mareike: I I simply reached a point where not knowing became harder than knowing. And also
Christine: Mm-hmm.
Mareike: after hearing your story, it helps me so much to stay with that. I want to stop questioning who I've always been. After decades of sitting in doctor's offices, therapy rooms, trying to every possible explanation without ever feeling that anything truly fit, I realized I wanted one thing more than anything else. Clarity. I long for that one person who also can finally say, you weren't imagining it, you weren't wrong. And for me, it's about finally understanding myself with compassion instead of shame, like you said before, all those feelings. I think I want to stop looking back at my life through the lens of what's wrong with me. And maybe for the first time, that little voice of self doubt, the one that keeps whispering, but what if you're wrong, you know, can finally become quiet.
Christine: Yeah.
Mareike: One important reason for me is also if I get a formal ADHD diagnosis, it would give me access to medication if I ever need it. As I'm approaching menopause, that brings me huge sense of relief. I don't know if I'll need medication or if I'll ever take them, but knowing that I have the option that I can ask for it and at least try it if this time comes feels incredibly reassuring. And because it's deeply personal for me, for decades I thought I could have inherited dementia. as it has affected several women in my family, women who struggled throughout their whole lives without anyone ever understanding why, having the same experiences like me. So looking back now, I wonder whether some of them may have been neurodivergent too, quite likely, and whatever having access to the right support or medication could have made a difference earlier in life. yeah. And finally,
Christine: Yeah.
Mareike: I also hope it will help me explain my experiences to the people around me. Instead of struggling to find the right words or explanations, I'll be able to say, this is how my brain works. Yeah, it will give me the language to explain what I've experienced my whole life instead of hiding everything that felt harder for me. And sometimes I catch myself imagining what life will be like after the assessment. Because while I'm still
Christine: Mm-hmm.
Mareike: waiting, it's easy to imagine that a diagnosis will suddenly change everything. So you've already walked the path. What do you think? or what do you think would change after receiving your diagnosis?
Christine: Yeah, yeah. Looking back, I think my expectations were slightly different for the ADHD diagnosis compared to the autism one. With ADHD, I was deep in burnout and I'd spent years trying to understand what happened, why it burned out and trying to get back to that person that I'd been before. So more than anything, I wanted to understand myself. And I felt that if I could better understand my brain, then maybe I could finally learn how to support it better. And I wasn't expecting the diagnosis to magically fix everything. I was hoping it will give me a roadmap, a way of understanding why I'd struggled with certain things and more importantly, practical strategies that would help me rebuild some capacity. And I could create a life that actually worked for me instead of constantly fighting, you know, against myself really. And,
Mareike: Makes sense, yeah.
Christine: yeah, yeah. And I'd, I'd already started to understand that ADHD isn't just one thing. It doesn't affect everyone in the same way. Every person's ADHD profile is different. So I wanted to understand what my ADHD looked like. What were my strengths? What were my challenges and what strategies were lucky to help me? And at the same time, I also wanted to understand my daughter's brains better. And the more I understood my own neurodivergence, the better equipped I felt to support them with theirs. So for me, the ADHD diagnosis was really about understanding, understanding myself, understanding my girls and learning practical ways to support all of us. Autism
Mareike: Yes.
Christine: was a little different. Now, by the time I received my autism diagnosis, I, it had been around six, eight months since both my daughters had been diagnosed. So by the time I actually sat down for my own assessment, I already knew deep down that I was autistic. The diagnosis wasn't really about discovering something new. It was about validation, about being seen. It was about someone else recognizing just how difficult life had been. And honestly, that's exactly what it gave me. It didn't change who I was. It didn't suddenly solve all my challenges, but it removed so much of the shame that I'd been carrying. It replaced years of self-blame with understanding. And for me, That was one of the most healing parts of the entire journey.
Mareike: think that's exactly what I'm hoping for.
Christine: Mm-hmm.
Mareike: Because right now I still find myself asking, you know, was it really that hard? Am I remembering it correctly? Am I making too much
Christine: Yeah.
Mareike: of it? And maybe what I'm hoping a diagnosis will give me is a certainty about who I am, but permission to finally believe my own story. And to add another question, I'm curious, once you finally had your diagnosis, what surprised you the most? Or was there anything about receiving your diagnosis that you hadn't prepared yourself for?
Christine: think what surprised me the most was the sheer spectrum of emotions that followed.
Mareike: Okay, yeah.
Christine: Before my diagnosis, think I expected I'd either feel relieved or validated. I don't think I anticipated just how many different emotions there would be afterwards. There was relief and validation for sure, but there was also grief and everything else in between. For weeks afterwards, I felt... like my emotion changed from one day to the next. One day I'd feel incredibly relieved and the next I'd find myself grieving opportunities I'd missed or rethinking experiences from my past through a completely different lens. And it felt like I was almost reprocessing my entire life.
Mareike: So actually that's what I'm expecting.
Christine: It's okay. Looking back now, I think that's a really normal part of the diagnosis journey. You're not just
Mareike: Yeah.
Christine: receiving new information, you're reinterpreting decades of memories and experiences. And another thing that surprised me was that apart from the validation and finally feeling seen, the diagnosis itself didn't actually change that much. The report didn't suddenly make life easier. It didn't suddenly give me all the answers. What really changed things was learning about my autistic and ADHD traits, you know, and that learning was what really transformed my life. And interestingly,
Mareike: Yes.
Christine: interestingly, I've realized you don't actually need a diagnosis before you can start doing that work. Right. So
Mareike: No.
Christine: looking back, one of the biggest lessons for me is that understanding and learning doesn't have to wait. You don't need permission to start supporting yourself. I also think it's, it's really worth mentioning something practical because it does vary depending on where you live. You know, here in Australia, if you're an adult and you want to explore ADHD medication, it has to be prescribed by a psychiatrist. So I chose to have my initial ADHD assessment with a clinical psychologist because it was significantly more affordable and much more accessible than seeing a psychiatrist. And at that stage. I wasn't actually planning on trying medication. So that made the most sense for me at the time. But six months later though, I decided I did want to explore medication. So then I went through an assessment with a psychiatrist. If I'm honest, I had incredibly high hopes. think I'd,
Mareike: remember that.
Christine: yeah, I think I'd almost built ADHD medication up in my mind as being the thing that was going to finally fix everything. And I thought it might be the missing pace that would help me get my old life back, but that didn't end up being my experience. I tried different ADHD medications over a six month period, but ultimately they weren't the right fit for me. In fact, I haven't been taking ADHD medication now for almost a year. I'm sure we'll talk more about medication in another episode because that's a whole other conversation in itself.
Mareike: Yes, absolutely.
Christine: but one thing I learned from that experience is that medication is just one tool in the toolkit. You know, for some people it can be life-changing for others, it helps a little. And for some people it isn't the right fit at all, which is maybe not the right timing as well. Yeah. So none, none of those experiences are more or less valid than the others. For me, the biggest transformation didn't come from a diagnosis report or from medication. It came from understanding my brain, understanding my nervous system, and slowly building a life that actually works with me instead of me.
Mareike: interesting because at the beginning of my ADHD journey medication wasn't something I was really open to. I think I was afraid it would change who I was, that it would make me feel numb or somehow less like myself. But the more I learned, the more my perspective changed. I came across the metaphor of medication being like giving reading glasses to someone who can't see properly. That
Christine: Yeah.
Mareike: really stayed with me. I started thinking maybe it's not about changing who you are, maybe it's about giving your brain the support it needs. And hearing you talk about your own experience and has helped me look at medication from even another different perspective. So it's definitely something I'll keep an open mind about if and when I reach that stage of my own journey. And yes, as we mentioned, that topic deserves a whole episode of its own. So we'll definitely be talking much more about that in the future when I can share more about maybe my experience. So what was your learning from all this? Can you share that, Christine?
Christine: Yeah. So following my diagnosis, the biggest learning I had to do was moving from this, you know, fixing mindset of like trying to fix myself, fix my life to acceptance and understanding and building a life that aligns with my needs. Those needs have always been there, but they had never previously been on it. And, yeah, for a long time, I had been so set on fixing myself. when I set out on my healing journey. And I still remember feeling really shaken after the autism diagnosis and what this would mean and how I would cope. And when my husband reminded me that I had always been autistic and that now I simply understood and had words to express my needs. Yes, that's right. I struggled on my own without knowing for such a long time. But now I could find community, could learn all about it and support myself like I'd never been able to do before. And this changed everything, you know, from trying to fix myself to finally accepting who I was and have always been in honoring those sensory needs. So now I can express where my capacity for noise is nearing. I know that the outbursts I have are meltdowns and why they occur. And I know why I feel most alone when I'm around people, why I feel the happiest on my own in nature and why socializing is one of the hardest thing for me to do. I know my life, how it was built before was never meant for me, but now I get to build my life with all the knowledge and the language for my experiences and understanding of myself that I'd simply been missing the past four decades. It was always me. The diagnosis didn't change me. Just in the case of autism, just self-identification allowed me to actually accept and support myself.
Mareike: these words make so much sense and give me a really good feeling facing my appointments.
Christine: Thank
Mareike: know a diagnosis doesn't change who you are. You're the same person before and after the appointment. It doesn't remove your challenges. It doesn't magically fix executive functioning. It doesn't heal burnout overnight and it doesn't guarantee that everybody around you will suddenly understand. A diagnosis gives you a framework. It isn't a cure. But here's one topic that concerns me the most in the moment while waiting is the question, what if I'm wrong? And what if the assessment confirms that I'm wrong, Christine?
Christine: yes, I understand. That's one of the biggest fears women have before an assessment. There can be so much imposter syndrome and self doubt.
Mareike: especially when you've masked heavily or you compare yourself with stereotypes. You know, I'm scared they don't see the masking. What if I'm not autistic or forgetful enough? Because sometimes I can concentrate and I can look someone in the eye. And another huge fear of me is thinking, what if they read my school reports and think I was absolutely fine? You know, preschool reports, they describe me as, you know, friendly, cautious, peaceful little girl who integrated beautifully into the class. was always interested, concentrated, always accurate, eager to give the right answer. mean, reading them today almost sound like the perfect angel-like child,
Christine: Yeah.
Mareike: but that wasn't the whole picture. know, at home I was the little devil. I was completely different. I was emotionally exhausted, overwhelmed, and constantly holding everything together. So looking back now, I actually see those reports very differently. I don't just see a well-behaved little girl. I see a little girl who had already learned very early how to adapt. to meet expectations and how to be exactly what everyone wanted her to be. So for me, that's masking in its earliest form. And I hope they see behind that and don't say, well, that sounds nothing like ADHD, autism, too successful, too perfect, too normal.
Christine: Yeah, yeah. I completely understand that fear. And I remember thinking exactly the same. You know, I thought if they only read my school reports, they'll never believe me. But that's the thing about masking. You sometimes the better you were at hiding your struggles, the more normal your childhood looks on paper. know,
Mareike: Yeah.
Christine: internalized ableism can also play a role. You know, you may have absorbed a very narrow ideas about what ADHD and autism are supposed to look like. was part of my autism questionnaire. I gave you areas where you could give some commentary and they actually said, you know, please provide some context. So that was encouraged and well, I wrote entire A4 pages for my experiences and all the strategies that I developed and how I was obsessing about things to prevent tripping up, you know, and
Mareike: Yeah.
Christine: How I had to be particular with the words I used, it had to be exact. And in hindsight, those comments demonstrated my anxiety to be dismissed. What all the effort cost me could be easily hidden because that's what I have been doing all my life, hiding how hard it all was for me. But in the comments, I laid it all out for the first time. I said it how it was and what it cost me without dressing it up or downplaying it. All the bits. I'd love to not say out loud and never admit I wrote them down. And this is why it costs so much emotionally to go through the assessment process. This is not an ordinary doctor's appointment. You you're laying out your struggles in the open after having hidden them your entire life. And you're doing that to a stranger that takes real courage and it costs a lot emotionally.
Mareike: Yeah, you're so right. And honestly, that's exactly what I've been experiencing over the past few weeks. It's been such an emotional roller coaster. Preparing for this assessment has meant looking back at my entire life. Not the happy memories, but mostly the moments I've carried shame for years. Anxiety, this feeling of always being different, of never quite fitting in, the failures. And it's as if someone has taken all those memories, I'd carefully packed away over decades and placed them right in front of me at once. and I'm
Christine: Yeah.
Mareike: expected to talk about them with someone I've never met before. It feels like you're opening up the most vulnerable parts of your life and hoping someone will understand them and they can decide about it. And yes, I think one of my biggest fears is still the question, how much do I have to prove that I'm struggling before I deserve to be seen and receive help?
Christine: Yeah, yeah, that possibility can feel enormous, especially if you've invested time, money and emotion into the process. But there can be many reasons somebody doesn't receive a diagnosis. It might be that the clinician may not have a strong neurodiversity knowledge. Heavy masking can make trades less obvious during an assessment. And there can be gender bias, you know, particularly when clinicians are still looking for more traditional male presentations, or if they're unfamiliar with masking behavior in females. There may also be cultural differences in communication, behavior, or the way someone describes their experience. For example, growing up in Germany, punctuality is one of those values which are very important. You cannot be late. You know, know, you know this.
Mareike: No, I know, yeah.
Christine: I learned this early on and I make daily accommodations via alarms, allowing extra travel time, Google mapping the location and parking. So I am on time. and mostly I'm way early. Not because this comes easy to me. I know I struggle terribly with time blindness and I will easily get distracted, but I have built support strategies that ensure I am on time. So in the assessment, I could not say yes to the question of like, am I late all the time? But I could share my strategies and how I experience and avoid lateness. Someone that is trained, We'll be able to see this and diagnose. Sometimes there's also limited information available about childhood. know, anxiety may overshadow autism or ADHD and trauma can also make the picture much more complex. Our assessment process hasn't all been smooth sailing. We also had a rejected assessment via pediatrician for my youngest daughter. She was too high masking and I had filled out the parents form before I knew much about autism. And this,
Mareike: There you go.
Christine: this, yeah, this completely blindsided me after my other daughter's assessment was confirmed without any issues. And yeah, that my autistic
Mareike: Yeah.
Christine: brain didn't take that very well because that I had not at all prepared for that scenario. You know, that was,
Mareike: Wow.
Christine: and yeah, and I ended up providing a document outlining. all of the accommodations and supports that I had been given to my daughter. And then the pediatrician agreed that she was high masking and ended up diagnosing her. So it really, it has been a roller coaster of emotions and so much learning has occurred. It's critically important to do your research. get recommendations and to ask questions upfront to ensure you will be assessed by a practitioner who is experienced in diagnosing women in midlife and experience with masking. Because it goes hand in hand, know, with being diagnosed at midlife without masking, we would have been diagnosed in childhood. Yeah.
Mareike: Yes, listening to this, think probably the biggest piece of advice we could give is to choose your clinician carefully. Not all assessments are the same and not all clinicians
Christine: For sure. For sure.
Mareike: have the same experience.
Christine: Yeah. Especially if you're a woman, right? This is so
Mareike: Yes.
Christine: critically important if you're woman, you know, and we know that ADHD and autism can present very differently in women compared to the stereotypes many of us grew up with. You know, we've got an entire episode dedicated to this. So it's, it's really worth asking yourself some questions before you even book, you know, do they assess adults? Do they assess both ADHD and autism? Do they have experience assessing women? Do they understand high masking? And do they understand those more internalized presentations that many women experience?
Mareike: Yeah, and do they understand burnout, neo-divergent burnout? Do they understand giftness and twice exceptionality? Do they understand what neo-divergence can look like in parents? And do they recognize that trauma and neo-divergence can overlap and sometimes look similar? And those things can make a huge difference to whether you feel truly understood.
Christine: Yeah. And don't be afraid to ask the clinic questions as well. You know, how many adult assessments do they complete and what's their experience in assessing women and can they assess both together? You know, that would be really handy to actually get an ADHD and autism assessment combined. What questionnaires do they use? Will you need information from family members to proceed with the assessment? How many appointments are involved in? When can you expect to receive your report?
Mareike: And remember you're not interviewing them because you're trying to catch them out, you're making sure they the right fit for you.
Christine: Yeah. Get, get recommendations from family or friends who've already been along the journey. And if you're the first one, like, like I was, you know, research online, look at reviews, ask, you know, maybe therapists ask other people for recommendations. yeah, I always
Mareike: Yeah.
Christine: felt like a male, like a female assessor would understand me better than, than a male one, you know, just because. Yeah. you know, midlife and all of the challenges. It's just,
Mareike: Yeah, you don't have to explain that to a woman. And well,
Christine: Yeah, yeah.
Mareike: all that information actually gives me a little peace of mind. And also maybe encourages some women who are listening the same for you to think about it again, because sometimes I still catch myself thinking, do I even have the right to be here to talk about autism and ADHD, to say that I recognize myself in these experiences, to share my story before someone has officially confirmed it.
Christine: I think so many women feel exactly the same. You know, we somehow believe we need permission before we allow to understand ourselves. But understanding yourself and receiving a diagnosis aren't the same thing. A diagnosis can validate your experience, but it doesn't create it. know, your experiences existed long before someone put a name on it. And can I tell you something?
Mareike: Mm-hmm.
Christine: If we had never mentioned where each of us are on our diagnosis journey. Do you honestly think anyone listening would know? No, exactly. Because what people are connecting with isn't a piece of paper. They're connecting with your experiences, the stories you tell, the patterns you've recognized, the emotions you've lived through. They're real and important to tell whether a clinician has confirmed them yet or not. I've never once listened to you and thought, her perspective matters less because she's still waiting to be assessed, not for a second.
Mareike: Hmm.
Christine: Your experiences are your experiences. A diagnosis doesn't suddenly make them more true. It just gives them a clinical name.
Mareike: Thank you Christine, that means so much coming from you. I think that's something many women struggle with. know, we feel like we have to earn the right to tell our own story but the truth is, know, our stories existed long before any diagnosis did, you know.
Christine: Yes, yes. And I think this is where the nuance is so important. know, formal diagnosis can only be given by a qualified clinician. That's something we both completely respect. But we
Mareike: Yes.
Christine: also know that many women spend years or even decades waiting for assessments, facing barriers, trying to decide whether diagnosis even right for them. And that doesn't mean they have to put their lives on hold.
Mareike: Absolutely, assessments, you know, they can cost a lot of money. Women living in rural areas may have, you know, very few specialists available and in some countries there are hardly any adult diagnostic services at all. There can be language barriers, cultural barriers. Yeah.
Christine: And gender barriers as well. know, diagnosis simply isn't equally accessible.
Mareike: Yeah, and I think that's something we don't talk about enough. Sometimes people say, well, if you really wanted to diagnose this, you just get one. But for many women, it isn't that simple. Access to an assessment can depend on where you live, your financial situation, your family responsibilities, your health, or simply whether someone with the right expertise is available.
Christine: Exactly. Like some women struggle to get support from their GP for referral. You know, it all depends on where
Mareike: Yes.
Christine: you live and how educated and supportive the medical providers are that you engage with. And that's why we have to acknowledge that for many people, a formal diagnosis is also a privilege. Not because
Mareike: Absolutely.
Christine: it's more valuable, not because everyone has equal access to get. a diagnosis, know, so self understanding and a clinical diagnosis aren't the same thing, but they don't have to be in competition with each other either.
Mareike: Yes, and you can still benefit without a diagnosis. I'm constantly learning and adjusting my expectations of myself. I build routines that suit me rather than trying to force myself into systems that repeatedly fail.
Christine: Absolutely. I began reducing masking and understanding my sensory needs. I can join neurodivergent communities and I can try neurodivergent friendly strategies.
Mareike: Yeah, you don't have to wait for a report before you start caring for yourself. I mean, you and I, we both live in our neurodivergent families where some of us have a diagnosis and others don't. In our home, we've already made so many small adjustments that benefit everyone, not just the person with the diagnosis. Things like
Christine: Yeah.
Mareike: visual schedules, weekly planners, timers, noise cancelling headphones, fidget toys, reducing sensory overload, know, simply creating more predictability. None of those things require permission. diagnosis. If they make everyday life easier they're worth trying and my nervous system never knew how much it needed it and respond in a very positive way. And that's something I realized quite early on you don't have to wait for someone else to tell you that your needs are valid before you start meeting them.
Christine: Exactly. You're allowed to respond to your needs before anybody formally confirms why those needs exist. And if someone is deciding not to pursue a diagnosis, that is also valid. Not everyone sees any practical benefit from having the diagnosis. Or they may not currently have the emotional capacity to go through an assessment. Totally valid.
Mareike: Yeah, for the last one and half years, I felt that I already had enough understanding to make the changes I needed. But fear was also part of my decision not to look into an appointment because of all the things we mentioned before. But also age or life stage may play a role. Somebody may already be retired and feel that workplace documentation isn't relevant to them. Another reason could be that someone maybe does not want to get negatively labeled depending on their life situations. Were you concerned about you or your girls getting a negative and wrong label?
Christine: I wasn't concerned about labeling my daughters. I saw my oldest daughter's struggles and I just needed to find out how to support her. We desperately needed to understand what was going on and that minimized any fear that I held for her being labeled by others. And please also remember that receiving a diagnosis doesn't mean you have to share this with the whole world. Like you get to decide when and what. It took me six to eight months to process everything before starting to talk to people. as I was more comfortable, as I felt more comfortable. And a diagnosis can sometimes replace shame with understanding. can replace there's something wrong with me, with my brain works differently and there are reasons I experienced the world this way. And the difficulty is that children usually already know they're different. They notice when things seem easier for other children. They notice when they're repeatedly corrected, excluded or misunderstood. And without an explanation, they often invent one. They may decide, I must be lazy, I'm stupid, I'm bad, I can't do anything right. So the absence of a diagnosis doesn't necessarily protect them from labels. Other people may still label them and the child may label themselves. So a diagnosis can give them language instead of self-blame.
Mareike: Yeah, my son experiences the world differently and I want him to grow up understanding why. I don't want him to spend years believing something is wrong with him the way I did. When was about 10, I think another child called me crazy on the playground and that day I promised myself I will never behave like that again. And children do not need to be openly bullied to start hiding who they are and often simply realizing they do not quite fit in as enough. For me, a diagnosis does not create a label. It removes these harsh self-imposed judgments and replaces them with understanding. I want my son to know exactly why he experiences the world the way he does, because a child's own explanations, as you just said, for feeling different, are often much harsher than reality.
Christine: Yeah, yeah. At the same time, you know, I completely understand why some parents hesitate. There are still communities where words like autism or ADHD carry enormous stigma. Some parents are generally afraid that a diagnosis could become another reason for the child to be judged or bullied. And that fear is real and we don't want to dismiss it.
Mareike: Absolutely. I know families in that exact situation where they live in an environment where neurodivergence is misunderstood. You're not just making a decision about a diagnosis, you're trying to protect your child. And I think every parent is simply doing the best they can with the information and circumstances they have.
Christine: Yeah, for us the question eventually became this if our children are already noticing they're different, what story are they telling themselves about the why?
Mareike: Yes, that's a good one. But we also know that every family, every child and every environment is different. There isn't one right answer that fits everyone. And I think that's true for so many parts of this journey. Our perspectives, opinions and feelings evolve over time. It's a process. Just like I was saying about medication, at first I was completely against it because I was scared of what I might mean, what it might mean. And the more I learned, the more my perspective changed. I think it's the same with diagnosis. Sometimes we simply need time. more information and lived experience before we know what feels right for ourselves or for our children.
Christine: And maybe that's exactly why so many of us find ourselves asking these questions decades later. We spend so much of our lives adapting, masking and trying to fit in that we gradually lose sight of who we really are underneath it all. I think that's what this whole conversation has really been about. Not why or whether everyone should pursue a diagnosis, but about giving ourselves permission to ask the question in the first place. And the more I reflect on it, the more I realize there simply isn't one answer that fits everyone. Every journey is different and every decision deserves compassion rather than judgment.
Mareike: If diagnosis is available to you and aligns with your goals, it may open important doors, but it isn't accessible right now or you're still allowed to learn about autism and ADHD in women. You're allowed to explore new divergent friendly supports, change your environment, honor your needs and extend compassion towards yourself.
Christine: And if you've decided that pursuing a diagnosis is the right path for you, we'll continue that journey together next week. We'll be talking about the waiting, the time between booking your assessment and finally walking into that appointment and why it can be one of the most emotional parts of the entire diagnosis journey.
Mareike: So that will be an exciting month for me because if I'm honest, these weeks have brought up every emotion imaginable. So next week, we'll take you into that waiting room with us and talk openly about what it's really like to wait for answers after a lifetime of searching. Thank you for joining us for the first episode of our diagnosis journey.
Christine: Thank you for your time and attention today. One thing we've both learned is that the question do I need a diagnosis doesn't have one universal answer. Wherever you find yourself on that journey, we hope today's conversation reminded you that your experiences matter, your questions are valid, and you deserve compassion, especially from yourself. To help you remember all the important information we shared today, please find our Beyond Between Us conversation notes for this episode in the show notes below. If today's conversation resonated with you, we'd love your support. Following, rating, or sharing between us helps us reach more women who may be searching for understanding, recognition, and connection. One of the best parts of this podcast is hearing your experiences too. If you'd like to connect, we'd love to hear from you. Until next time, remember, there's no right or wrong way to understand yourself. Only the path that feels right for you. Thank you for being part of Between Us.
Mareike: To sharing authentic conversations, lived experiences, and everyday challenges, we hope to create a space where women feel seen, understood, and a little less alone. You might just recognize yourself in our stories and realize you're neurodivergent as well or someone you know. We'd like to gently remind you that everything shared in this podcast is based on our personal experiences, reflections, and research. It is not intended as medical, psychological, or diagnostic advice. Welcome back to Between Us, Neurodivergent Conversations. Today, we are opening a brand new chapter of our podcast. We are officially kicking off our diagnosis journey. In part one, we'll take you along on the journey before the appointment. So over the next three episodes, we'll dive into everything that happens before a diagnosis, the questions, the doubts, the research, the waiting, and all the emotions that come with this part of the journey. Christina has already been through the process, I'm still waiting for that appointment in my own next chapter. throughout the series, you'll hear both hindsight and uncertainty, reflection and anticipation side by side. Hi, Christina. I can't wait to start this diagnosis journey with you.
Christine: Hey Mariah Cat and everyone. Yes, this will be such a special journey for us to share. We've both experienced this process in different ways and I think that's what makes this conversation so important. So after the past eight episodes where we've been learning and exploring ADHD, autism and all the HD women talking about masking, sharing our personal stories and reflecting on what it means to unmask. It felt like the most natural next step for this conversation. for our journey together to explore what comes next. Because for many women, understanding themselves is only the beginning. At some point, another question often follows. Should I seek a diagnosis?
Mareike: Yes, after a year of waiting, my son finally got his autism diagnosis in April this year. And while we are recording, I will have my appointment for both autism and ADHD soon. And yeah, so this is a perfect opportunity to share my feelings while waiting and for Christina to help me through a lot of questions I have. Because getting an adult diagnosis as a woman is not just a medical step. You know, it's an emotional journey that often involves long waiting lists, paperwork and uncertainty.
Christine: Absolutely. And I'm sitting on the other side of that bridge. I've already been through the fire and I have both my official diagnosis on paper and we'll talk about all the feelings before and after. All in all, I've gone through 11 assessment appointments in 16 months. Both my girls ADHD assessments with a clinical psychologist and then again, both with a pediatrician so they could access their ADHD medication. Then my assessment with a clinical psychologist. And six months later, an ADHD assessment with a psychiatrist to access medication for myself. And then finally, my autism assessment.
Mareike: Wow, I honestly couldn't have wished for a better person to have by my side as I prepare for this appointment. So no matter where you are on your own journey, questioning, waiting, preparing or choosing not to your formal diagnosis, we are so glad you're here and we hope these conversations help you navigate this part of the journey with a little more clarity and self-compassion. So the first question that we want to start with is why did we start wondering? So looking back, We can now see that we've spent years looking for answers, but we weren't looking in the right place because ADHD and autism weren't even on our radar. We covered that a bit more in our first episode and also in our personal stories in episodes five and six.
Christine: Exactly. We weren't asking questions about our neurodivergence. The question wasn't could I be autistic or could I have ADHD. It was why does life feel so much harder for me than it seems for everyone else?
Mareike: Yes, we looked everywhere except neurodivergence. We wondered about trauma, hormones, anxiety, stress. I thought there had to be something I could fix. And then my son came along. So it wasn't my own struggles that made me think about ADHD or autism. It was trying to understand him.
Christine: Yeah, and my story is actually very similar. It was also through my girls that I started seeing things very differently.
Mareike: Yeah, I was trying to understand why he experienced the world so differently. I didn't even know that ADHD and autism existed in women at all at that stage. And if someone had suggested it back then, I definitely would have said no. And to be honest, I never thought my son could be autistic. When he was around three, I searched online because a few things caught my attention. But everything I read described children who were nonverbal, didn't respond to people or avoided eye contact. And that simply wasn't my son. Yeah, so I closed the laptop and convinced myself I was worrying for no reason. I thought, you know, let's wait and see. And more than three years later, I searched again. And this time I discovered descriptions of autistic children who looked so much like my son that I remember thinking, my God, that's him. And the more I learned, the more I quietly started recognizing parts of myself and not just me, my mom actually made me aware that she recognized me in a lot
Christine: Mm-hmm.
Mareike: of those behaviors. And from that moment until my son received his diagnosis, almost a year and a half. And during that time, I immersed myself in everything I could learn about autism. And later, ADHD.
Christine: I think that's such a common story for so many women. We start looking for answers and for our children and somehow we end up finding ourselves. And then there was also the time when we started having our conversations about this, know, sharing our struggles really honestly and describing experiences I thought were uniquely mine. And suddenly I thought, wait, you do this too. And
Mareike: Yeah.
Christine: I think it was, that was such a huge benefit that we had asked and our conversations between us.
Mareike: yes, and it also showed how different and unique each experience can be, but still so similar in its course. So the
Christine: Yeah.
Mareike: diagnosis journey didn't begin with me asking should I get assessed, it began with me trying to understand everything about it and that was enough for me at that time.
Christine: Yeah. Recognising yourself and deciding to pursue a diagnosis are actually two very different things.
Mareike: Yeah, I never imagined I would seek a diagnosis for myself, at least not before my son's diagnosis was confirmed. Deep down, I kept thinking, what if I got it all wrong? What if he is an autistic? Then surely I can't be either. It felt as though I hadn't earned the right to even ask the question, let alone ask for help.
Christine: Yeah.
Mareike: That's really weird. I worried that I was making it all up. And so even though deep down I knew, and that led me to the big question, what actually is a diagnosis? because sometimes it can feel as though every saving one suddenly turns you into someone you weren't before.
Christine: Well, a diagnosis doesn't create ADHD or autism. You know, you were already ADHD, autistic, or both before someone wrote an assessment report about it. A diagnosis identifies something that already exists. It gives language and a framework to something that has already been part of your life. And ultimately a diagnosis is one professional's opinion based on the evidence that is available at that point in time. That doesn't mean it's meaningless, but it also doesn't mean one clinician has the power to define your entire experience.
Mareike: Yeah, that's a really good point. And actually, perfect timing to ask you, Christina, how did your diagnosed journey begin and why?
Christine: Yeah, that's a long story. for me,
Mareike: I'm prepared to listen.
Christine: ADHD diagnosis journey actually started with my oldest daughter. At that point, I didn't really know anyone with ADHD and I didn't know much about it beyond the stereotypical image of the hyperactive little boy. I knew my daughter was struggling and around that time I happened to speak with an occupational therapist. she had shared with me that she'd recently been diagnosed with ADHD herself, as well as her children. And I, yeah, it was my first opportunity really to actually quiz someone, you know, about it. And, so ask her a lot of questions and what she shared sounded very much like my daughter. I queried her about what the process looked like of getting a diagnosis, especially since where we lived. I've been hearing in the media that there's incredibly long waiting lists, like two or three years to even get
Mareike: Yeah, that's normal.
Christine: an assessment. So I thought maybe this just wasn't something that really was realistic for us to access anytime soon. She told me who she'd seen for her assessment and absolutely raved about the experience. So asked for the details and I contacted the clinic and incredibly we managed to get an appointment the following week.
Mareike: Wow.
Christine: So it was kind of, yeah, just fell into our lap, I think. and at that stage, I just had this feeling that something wasn't quite right and that it was worth exploring further. I wanted to share, and I wanted to share a little bit more about our very specific situation. we had our assessment with an incredibly proactive and well-trained clinical psychologist who specializes in ADHD, autism and giftedness. I feel so lucky that we found her. so that recommendation really, yeah. was just magical to find her. And
Mareike: Yeah.
Christine: she identified all three, so the ADHD, autism and giftedness in both of my girls. And they're what's called twice exceptional or 2E. And this refers to individuals who have high intellectual potential or gifted abilities alongside a neurodivergent profile or learning difficulties. They show exceptional talent in areas like reasoning, creativity, or specific academics. or simultaneously facing challenges such as ADHD, autism, dyslexia, or other sensory processing issues. And the core characteristics of the two-year profiles are asynchronous development. So skills and mental growth develop unevenly. A child might reason at a high school level by struggling with basic handwriting and organization. And mutual masking, so the high intelligence can actually high to the learning disability or disability can obscure giftedness, leading to an individual appearing average and missing out on proper support. It's very much a spiky cognitive profile where there's really strong capabilities coexisting with significant barriers, which can trigger frustration, anxiety, or misdiagnosis in standard school environment. And my oldest daughter had slipped through those exact previous assessment. So it really takes someone experienced and properly trained to uncover this. The WISC-5 is not used to diagnose ADHD. Instead, it's used as like an intelligence test measuring general cognitive ability. So this is the assessment that my daughter had, but it also highlights specific weaknesses, you know, like in, for example, working memory or processing speed. And that's very commonly the case with ADHD. And this was exactly the case with my daughter's potential. She's got vast potential in verbal comprehension, visual, spatial, and fluid reasoning, well above the average, but her working memory and processing speed lag behind largely. And that's causing huge challenges and frustrations for her. And this discrepancy was then explored further via ADHD parent and teacher questionnaires. So as part of my daughter's assessment, there was also detailed family interview. This was actually how all of this sort of assessment was kicked off. And we talked about her development history, birth history, childhood, family background, all of those kinds of things. And during that assessment, the clinical psychologist already suggested that my other daughter, you know, almost certainly has ADHD as well, as well as myself and that I should get myself assessed. And that was the first time anyone had ever said that to me. And I remember at the time thinking, surely not, this can't be right. I was really surprised and I was in disbelief. But we continued with my oldest daughter's assessment and it was an incredibly positive experience.
Mareike: have to say here, it's so interesting that you sort of stumbled upon the diagnosis by chance
Christine: Mm-hmm.
Mareike: without even thinking about it, you know, even even wanting it or believing it.
Christine: Yeah, yes, I feel it very much was meant to be, you know.
Mareike: Yes.
Christine: What I loved about the WISC-V was that it wasn't simply focused on deficits. yes, I completed the ADHD questionnaires, you know, as her parent, but the assessment was really about understanding how her brain worked. And it looked at our cognitive profile across different areas. highlighting both strengths and challenges. It was very, very strengths-based and the clinical psychologist was absolutely incredible. She was reassuring, validating and really supportive throughout the whole process. And I honestly couldn't have wished for a better experience. My daughter came out of this process, seeing how her brain works in amazing ways and that she should be proud.
Mareike: You know, that's exactly how it should be, you know, reassuring and also your strength, strength based. Absolutely. Yeah.
Christine: Yeah, yes, yes. We felt so positive after the assessment. Like she just experienced what our brain is actually capable of and that the school system, the environment was what was actually making things difficult, not her brain. And while this was great, later on the ADHD assessments with the pediatrician in comparison were very different. You know, they were much more focused on challenges and things the girls struggled with. It was a completely different process. It felt very negative and it offered no strategies at the end of it. But I'm getting ahead of myself. I have to backtrack a little bit. So my oldest daughter has been assessed with a WISC-V and the ADHD questionnaire. And during that process, it was also suggested that my younger daughter should be assessed. And I remember hesitating at the time. I was fairly convinced she didn't have ADHD and the cost of several thousand dollars worried me, you know, what, what if
Mareike: Yeah.
Christine: we didn't get a diagnosis and Looking back now, that was simply because my understanding of ADHD was still very limited. But then I asked myself a question, how would I feel if we didn't investigate this? And if 20 years later she was diagnosed as an adult and after struggling all the way through school and early adulthood, how would I feel? And I knew I wouldn't be comfortable with that. So if we'd given one daughter the opportunity, then we'd also have to do it. for my other daughter. so we went ahead with her assessment as well. And my younger daughter was diagnosed with ADHD too. And
Mareike: There you go.
Christine: yeah, upon receiving the diagnosis, they prompted me to enroll in a 14 week ADHD course. So I could learn everything so I could understand my girls and I could support them to the best of my abilities. That whole process, although done really nicely and very supportive, it was incredibly overwhelming for me. And it also made me realize that I wanted to understand my own brain. At that stage, I was already in burnout and I had stopped working and my life had essentially fallen apart. I had no idea how to put the pieces back together again. And pursuing an ADHD assessment felt like It was a worthwhile step towards understanding myself better and hopefully finding ways to function better again. That was my hope. So I completed a very thorough ADHD assessment with a clinical psychologist who specialized in adult ADHD. There were several appointments, lengthy questionnaires and very detailed interviews.
Mareike: actually I remember that so well. You were already on
Christine: Yeah.
Mareike: this journey and shared so much of what you were learning with me and at the time I was only looking into autism because of my son and ADHD never even crossed my mind as well. I still had all those stereotypes in my head and honestly thought everyone gets labeled with ADHD these days. I believe that if we simply change the environment, do homeschooling, most of the struggles would disappear. And the funny thing is back then autism wasn't even on your radar at all. Yeah.
Christine: Yeah. Yeah. yes. It's, it's funny really how that all played out. Yeah. And we started from completely different places and falling to very different paths. And somehow we both ended up at the same destination or DHD.
Mareike: Yes.
Christine: And at that stage, I still didn't really understand ADHD. I simply answered the questionnaires as honestly as I could. And I gave lots of examples of my struggles and coping strategies I'd learned over the years. And that's when I received my own. ADHD diagnosis. Looking back, I really only pursued that assessment because the clinical psychologist had encouraged me to. She essentially said, you really need to get yourself assessed. And yeah, and then I spent the rest of 2024 diving into understanding ADHD, learning about medication options, strategies, what are the executive functions, you know, this was all new to me and
Mareike: Hmm.
Christine: how ADHD presents in women. I immediately began implementing many of those strategies into our home education, into daily life. And yeah, as you just mentioned, autism, however, was a very, very different journey. After we'd seen that clinical psychologist for my girls, they diagnosed my girls a few more times, she suggested that autism might also be present for both of my daughters. And she gave me the assessment questionnaires and suggested I'll go through them and complete them. At that point, when she handed me those questionnaires, did have, I had no capacity whatsoever to, deal with that. I'd only just begun processing ADHD and I was completely overwhelmed. So I put the questionnaires away for about four or five months and didn't look at it at all. And eventually as I slowly regained some capacity, I picked them up again. And as I worked through them, I started recognizing. many things. More importantly, was the first time I'd really began to understand what autism actually is, or really how it presents, you know, what an internal experience it can be. Before that, I didn't know anyone that is autistic. And I honestly had very little understanding of autism beyond the common stereotypes.
Mareike: Yeah, and at the same time, so much of what I was learning about autism reminded me of your eldest daughter sometimes. And
Christine: Hmm.
Mareike: when you started looking into autism yourself, I remember thinking, that's strange. know, autism and ADHD had always seemed to look like two completely different things to me. And yet the more we learned, the more they seemed to overlap. And that was the first time I realized how closely connected they can actually be.
Christine: Absolutely. Yeah. And one thing I realized very quickly was that many autistic experiences, particularly sensory experiences, are incredibly internal. They're not necessarily
Mareike: Yes.
Christine: obvious to anyone looking in from the outside. So I sat down individually with each of my daughters and worked through the questionnaires together. Rather than simply answering yes or no, we talked about each question. I'd give examples and we'd explore the experiences together and In doing so, I learned an enormous amount about both my daughters, but I also learned an enormous amount about myself. And that was the point where I realized I'm autistic too. And from there, it's...
Mareike: Yeah, that's such an interesting point when you suddenly like, wow, you recognize everything and everything that's puzzle pieces coming together that one little piece that was missing that you may didn't find in ADHD suddenly is there, you know.
Christine: Exactly. It was just, it was such a revelation. And from there, I immersed myself then in learning everything I could about autism. See, there's bit of a pattern there. I have to understand it. I have to figure it out. it
Mareike: Yeah, it's hard to focus.
Christine: didn't take very long before I realized that autism actually explained me more than ADHD did. Or
Mareike: Yeah.
Christine: maybe my autism had been hiding my ADHD all along, you know, but suddenly everything. made sense and I finally understood why so many strategies I tried throughout my life, things like the cognitive behavioral therapy had never really worked for me. It wasn't because I hadn't tried hard enough. It was because they weren't designed for an autistic brain. And for a while, I didn't actually feel any urgency whatsoever to pursue a formal diagnosis. I was learning so much. I was making changes in our everyday life. I was understanding my sensory needs. I was implementing strategies that were already making a real difference. And that learning itself was incredibly validating. It was as if I had finally been given that instruction manual that I had missed out on when I was born. But eventually though, I realized I wanted a formal diagnosis, not because I doubted myself, but because I wanted external validation. So I booked an appointment. booked an assessment at that point, it was like a four month wait. And during those four months, I constantly changed my mind. So one day I'd think, yes, I absolutely want this assessment. I can't wait for it. And then the next day I'd be like, I don't need this at all. I should just cancel it. And I even remember saying to someone about a week before the appointment, I don't actually know why I'm going ahead with this assessment.
Mareike: I'm actually so glad you say that. I'm so into this right now. Everyday changing my mind.
Christine: Yeah. Yeah. And, know, by then I already knew I am autistic. There was
Mareike: Yeah.
Christine: nothing that that psychiatrist could tell me that would change that. I knew it so deeply. In fact, I remember thinking that if the assessment didn't conclude that I was autistic, then there will be something wrong with the assessment process, not with me. You know, that's how certain, that's
Mareike: You're so short.
Christine: how certain I had become, you know, even so.
Mareike: The specialist.
Christine: Even so, I went ahead with the assessment and once again, it turned out to be a really positive experience. The clinician specialized in assessing adults, understood ADHD and autism and had a really deep understanding of masking and women. And it also included masking questionnaires as part of the process.
Mareike: That's really good.
Christine: But regardless, I was like unbelievably nervous beforehand. I was so, so anxious. I was absolutely beside myself. But the assessment itself was beautiful. It was validating. was, it was really compassionate. And the psychiatrist even apologized to me for the ways that I've been let down by the medical system over so many years. That was, yeah, that meant that, yeah, that meant more than I can explain.
Mareike: That's what you want to hear sometimes after decades. Yeah. Yeah.
Christine: And after that assessment, had tears streaming down my face and I felt this massive weight lifted off my shoulders. You know, finally I had an explanation why life had been so hard for me and why I burnt out and why I couldn't work anymore. And it wasn't my fault. A lot of the shame fell away. I had been blaming myself for decades, my entire life. And now I finally knew why my life had gone the way it had. And when I received the final report, it validated so many of the struggles I'd experienced, the burnout, the exhaustion, the inability to juggle everything, work, family life, all of it. And the shame I'd carried after having to stop working, the feeling that I couldn't admit I simply wasn't coping. So I had to come up with other explanations. Reading that report removed so much of that shame. It was an enormous relief and yeah, but after that relief, there came a lot of grief. You know, I find myself revisiting so many memories through an entirely different lens. There was a lot of sadness for everything that, yeah, that it hadn't been recognized sooner. You know, why could this not have been picked up sooner? But alongside the grief came something that I'd never really given myself before, compassion. compassion for myself, compassion for hard I, how hard I had tried and compassion for how unsupported I'd been. And looking back now, I would say that both diagnosis were incredibly emotional journeys. There was an enormous, like enormous amount of energy. Yeah, yeah.
Mareike: I wanted to say it's up and down. just emotional ups and downs and so many feelings at once, I guess.
Christine: Yeah, yeah. It was just a nerve wracking roller coaster ride that I think only people that have gone through that process will understand. And by choosing clinicians who truly understand ADHD and autism, particularly how they're presenting women and how masking can hide so much, the experiences themselves turn out to be incredibly positive, validating, compassionate, and ultimately they helped me replace decades of self-blame with understanding. So what about you Marike? What changed for you about making that appointment?
Mareike: I I simply reached a point where not knowing became harder than knowing. And also
Christine: Mm-hmm.
Mareike: after hearing your story, it helps me so much to stay with that. I want to stop questioning who I've always been. After decades of sitting in doctor's offices, therapy rooms, trying to every possible explanation without ever feeling that anything truly fit, I realized I wanted one thing more than anything else. Clarity. I long for that one person who also can finally say, you weren't imagining it, you weren't wrong. And for me, it's about finally understanding myself with compassion instead of shame, like you said before, all those feelings. I think I want to stop looking back at my life through the lens of what's wrong with me. And maybe for the first time, that little voice of self doubt, the one that keeps whispering, but what if you're wrong, you know, can finally become quiet.
Christine: Yeah.
Mareike: One important reason for me is also if I get a formal ADHD diagnosis, it would give me access to medication if I ever need it. As I'm approaching menopause, that brings me huge sense of relief. I don't know if I'll need medication or if I'll ever take them, but knowing that I have the option that I can ask for it and at least try it if this time comes feels incredibly reassuring. And because it's deeply personal for me, for decades I thought I could have inherited dementia. as it has affected several women in my family, women who struggled throughout their whole lives without anyone ever understanding why, having the same experiences like me. So looking back now, I wonder whether some of them may have been neurodivergent too, quite likely, and whatever having access to the right support or medication could have made a difference earlier in life. yeah. And finally,
Christine: Yeah.
Mareike: I also hope it will help me explain my experiences to the people around me. Instead of struggling to find the right words or explanations, I'll be able to say, this is how my brain works. Yeah, it will give me the language to explain what I've experienced my whole life instead of hiding everything that felt harder for me. And sometimes I catch myself imagining what life will be like after the assessment. Because while I'm still
Christine: Mm-hmm.
Mareike: waiting, it's easy to imagine that a diagnosis will suddenly change everything. So you've already walked the path. What do you think? or what do you think would change after receiving your diagnosis?
Christine: Yeah, yeah. Looking back, I think my expectations were slightly different for the ADHD diagnosis compared to the autism one. With ADHD, I was deep in burnout and I'd spent years trying to understand what happened, why it burned out and trying to get back to that person that I'd been before. So more than anything, I wanted to understand myself. And I felt that if I could better understand my brain, then maybe I could finally learn how to support it better. And I wasn't expecting the diagnosis to magically fix everything. I was hoping it will give me a roadmap, a way of understanding why I'd struggled with certain things and more importantly, practical strategies that would help me rebuild some capacity. And I could create a life that actually worked for me instead of constantly fighting, you know, against myself really. And,
Mareike: Makes sense, yeah.
Christine: yeah, yeah. And I'd, I'd already started to understand that ADHD isn't just one thing. It doesn't affect everyone in the same way. Every person's ADHD profile is different. So I wanted to understand what my ADHD looked like. What were my strengths? What were my challenges and what strategies were lucky to help me? And at the same time, I also wanted to understand my daughter's brains better. And the more I understood my own neurodivergence, the better equipped I felt to support them with theirs. So for me, the ADHD diagnosis was really about understanding, understanding myself, understanding my girls and learning practical ways to support all of us. Autism
Mareike: Yes.
Christine: was a little different. Now, by the time I received my autism diagnosis, I, it had been around six, eight months since both my daughters had been diagnosed. So by the time I actually sat down for my own assessment, I already knew deep down that I was autistic. The diagnosis wasn't really about discovering something new. It was about validation, about being seen. It was about someone else recognizing just how difficult life had been. And honestly, that's exactly what it gave me. It didn't change who I was. It didn't suddenly solve all my challenges, but it removed so much of the shame that I'd been carrying. It replaced years of self-blame with understanding. And for me, That was one of the most healing parts of the entire journey.
Mareike: think that's exactly what I'm hoping for.
Christine: Mm-hmm.
Mareike: Because right now I still find myself asking, you know, was it really that hard? Am I remembering it correctly? Am I making too much
Christine: Yeah.
Mareike: of it? And maybe what I'm hoping a diagnosis will give me is a certainty about who I am, but permission to finally believe my own story. And to add another question, I'm curious, once you finally had your diagnosis, what surprised you the most? Or was there anything about receiving your diagnosis that you hadn't prepared yourself for?
Christine: think what surprised me the most was the sheer spectrum of emotions that followed.
Mareike: Okay, yeah.
Christine: Before my diagnosis, think I expected I'd either feel relieved or validated. I don't think I anticipated just how many different emotions there would be afterwards. There was relief and validation for sure, but there was also grief and everything else in between. For weeks afterwards, I felt... like my emotion changed from one day to the next. One day I'd feel incredibly relieved and the next I'd find myself grieving opportunities I'd missed or rethinking experiences from my past through a completely different lens. And it felt like I was almost reprocessing my entire life.
Mareike: So actually that's what I'm expecting.
Christine: It's okay. Looking back now, I think that's a really normal part of the diagnosis journey. You're not just
Mareike: Yeah.
Christine: receiving new information, you're reinterpreting decades of memories and experiences. And another thing that surprised me was that apart from the validation and finally feeling seen, the diagnosis itself didn't actually change that much. The report didn't suddenly make life easier. It didn't suddenly give me all the answers. What really changed things was learning about my autistic and ADHD traits, you know, and that learning was what really transformed my life. And interestingly,
Mareike: Yes.
Christine: interestingly, I've realized you don't actually need a diagnosis before you can start doing that work. Right. So
Mareike: No.
Christine: looking back, one of the biggest lessons for me is that understanding and learning doesn't have to wait. You don't need permission to start supporting yourself. I also think it's, it's really worth mentioning something practical because it does vary depending on where you live. You know, here in Australia, if you're an adult and you want to explore ADHD medication, it has to be prescribed by a psychiatrist. So I chose to have my initial ADHD assessment with a clinical psychologist because it was significantly more affordable and much more accessible than seeing a psychiatrist. And at that stage. I wasn't actually planning on trying medication. So that made the most sense for me at the time. But six months later though, I decided I did want to explore medication. So then I went through an assessment with a psychiatrist. If I'm honest, I had incredibly high hopes. think I'd,
Mareike: remember that.
Christine: yeah, I think I'd almost built ADHD medication up in my mind as being the thing that was going to finally fix everything. And I thought it might be the missing pace that would help me get my old life back, but that didn't end up being my experience. I tried different ADHD medications over a six month period, but ultimately they weren't the right fit for me. In fact, I haven't been taking ADHD medication now for almost a year. I'm sure we'll talk more about medication in another episode because that's a whole other conversation in itself.
Mareike: Yes, absolutely.
Christine: but one thing I learned from that experience is that medication is just one tool in the toolkit. You know, for some people it can be life-changing for others, it helps a little. And for some people it isn't the right fit at all, which is maybe not the right timing as well. Yeah. So none, none of those experiences are more or less valid than the others. For me, the biggest transformation didn't come from a diagnosis report or from medication. It came from understanding my brain, understanding my nervous system, and slowly building a life that actually works with me instead of me.
Mareike: interesting because at the beginning of my ADHD journey medication wasn't something I was really open to. I think I was afraid it would change who I was, that it would make me feel numb or somehow less like myself. But the more I learned, the more my perspective changed. I came across the metaphor of medication being like giving reading glasses to someone who can't see properly. That
Christine: Yeah.
Mareike: really stayed with me. I started thinking maybe it's not about changing who you are, maybe it's about giving your brain the support it needs. And hearing you talk about your own experience and has helped me look at medication from even another different perspective. So it's definitely something I'll keep an open mind about if and when I reach that stage of my own journey. And yes, as we mentioned, that topic deserves a whole episode of its own. So we'll definitely be talking much more about that in the future when I can share more about maybe my experience. So what was your learning from all this? Can you share that, Christine?
Christine: Yeah. So following my diagnosis, the biggest learning I had to do was moving from this, you know, fixing mindset of like trying to fix myself, fix my life to acceptance and understanding and building a life that aligns with my needs. Those needs have always been there, but they had never previously been on it. And, yeah, for a long time, I had been so set on fixing myself. when I set out on my healing journey. And I still remember feeling really shaken after the autism diagnosis and what this would mean and how I would cope. And when my husband reminded me that I had always been autistic and that now I simply understood and had words to express my needs. Yes, that's right. I struggled on my own without knowing for such a long time. But now I could find community, could learn all about it and support myself like I'd never been able to do before. And this changed everything, you know, from trying to fix myself to finally accepting who I was and have always been in honoring those sensory needs. So now I can express where my capacity for noise is nearing. I know that the outbursts I have are meltdowns and why they occur. And I know why I feel most alone when I'm around people, why I feel the happiest on my own in nature and why socializing is one of the hardest thing for me to do. I know my life, how it was built before was never meant for me, but now I get to build my life with all the knowledge and the language for my experiences and understanding of myself that I'd simply been missing the past four decades. It was always me. The diagnosis didn't change me. Just in the case of autism, just self-identification allowed me to actually accept and support myself.
Mareike: these words make so much sense and give me a really good feeling facing my appointments.
Christine: Thank
Mareike: know a diagnosis doesn't change who you are. You're the same person before and after the appointment. It doesn't remove your challenges. It doesn't magically fix executive functioning. It doesn't heal burnout overnight and it doesn't guarantee that everybody around you will suddenly understand. A diagnosis gives you a framework. It isn't a cure. But here's one topic that concerns me the most in the moment while waiting is the question, what if I'm wrong? And what if the assessment confirms that I'm wrong, Christine?
Christine: yes, I understand. That's one of the biggest fears women have before an assessment. There can be so much imposter syndrome and self doubt.
Mareike: especially when you've masked heavily or you compare yourself with stereotypes. You know, I'm scared they don't see the masking. What if I'm not autistic or forgetful enough? Because sometimes I can concentrate and I can look someone in the eye. And another huge fear of me is thinking, what if they read my school reports and think I was absolutely fine? You know, preschool reports, they describe me as, you know, friendly, cautious, peaceful little girl who integrated beautifully into the class. was always interested, concentrated, always accurate, eager to give the right answer. mean, reading them today almost sound like the perfect angel-like child,
Christine: Yeah.
Mareike: but that wasn't the whole picture. know, at home I was the little devil. I was completely different. I was emotionally exhausted, overwhelmed, and constantly holding everything together. So looking back now, I actually see those reports very differently. I don't just see a well-behaved little girl. I see a little girl who had already learned very early how to adapt. to meet expectations and how to be exactly what everyone wanted her to be. So for me, that's masking in its earliest form. And I hope they see behind that and don't say, well, that sounds nothing like ADHD, autism, too successful, too perfect, too normal.
Christine: Yeah, yeah. I completely understand that fear. And I remember thinking exactly the same. You know, I thought if they only read my school reports, they'll never believe me. But that's the thing about masking. You sometimes the better you were at hiding your struggles, the more normal your childhood looks on paper. know,
Mareike: Yeah.
Christine: internalized ableism can also play a role. You know, you may have absorbed a very narrow ideas about what ADHD and autism are supposed to look like. was part of my autism questionnaire. I gave you areas where you could give some commentary and they actually said, you know, please provide some context. So that was encouraged and well, I wrote entire A4 pages for my experiences and all the strategies that I developed and how I was obsessing about things to prevent tripping up, you know, and
Mareike: Yeah.
Christine: How I had to be particular with the words I used, it had to be exact. And in hindsight, those comments demonstrated my anxiety to be dismissed. What all the effort cost me could be easily hidden because that's what I have been doing all my life, hiding how hard it all was for me. But in the comments, I laid it all out for the first time. I said it how it was and what it cost me without dressing it up or downplaying it. All the bits. I'd love to not say out loud and never admit I wrote them down. And this is why it costs so much emotionally to go through the assessment process. This is not an ordinary doctor's appointment. You you're laying out your struggles in the open after having hidden them your entire life. And you're doing that to a stranger that takes real courage and it costs a lot emotionally.
Mareike: Yeah, you're so right. And honestly, that's exactly what I've been experiencing over the past few weeks. It's been such an emotional roller coaster. Preparing for this assessment has meant looking back at my entire life. Not the happy memories, but mostly the moments I've carried shame for years. Anxiety, this feeling of always being different, of never quite fitting in, the failures. And it's as if someone has taken all those memories, I'd carefully packed away over decades and placed them right in front of me at once. and I'm
Christine: Yeah.
Mareike: expected to talk about them with someone I've never met before. It feels like you're opening up the most vulnerable parts of your life and hoping someone will understand them and they can decide about it. And yes, I think one of my biggest fears is still the question, how much do I have to prove that I'm struggling before I deserve to be seen and receive help?
Christine: Yeah, yeah, that possibility can feel enormous, especially if you've invested time, money and emotion into the process. But there can be many reasons somebody doesn't receive a diagnosis. It might be that the clinician may not have a strong neurodiversity knowledge. Heavy masking can make trades less obvious during an assessment. And there can be gender bias, you know, particularly when clinicians are still looking for more traditional male presentations, or if they're unfamiliar with masking behavior in females. There may also be cultural differences in communication, behavior, or the way someone describes their experience. For example, growing up in Germany, punctuality is one of those values which are very important. You cannot be late. You know, know, you know this.
Mareike: No, I know, yeah.
Christine: I learned this early on and I make daily accommodations via alarms, allowing extra travel time, Google mapping the location and parking. So I am on time. and mostly I'm way early. Not because this comes easy to me. I know I struggle terribly with time blindness and I will easily get distracted, but I have built support strategies that ensure I am on time. So in the assessment, I could not say yes to the question of like, am I late all the time? But I could share my strategies and how I experience and avoid lateness. Someone that is trained, We'll be able to see this and diagnose. Sometimes there's also limited information available about childhood. know, anxiety may overshadow autism or ADHD and trauma can also make the picture much more complex. Our assessment process hasn't all been smooth sailing. We also had a rejected assessment via pediatrician for my youngest daughter. She was too high masking and I had filled out the parents form before I knew much about autism. And this,
Mareike: There you go.
Christine: this, yeah, this completely blindsided me after my other daughter's assessment was confirmed without any issues. And yeah, that my autistic
Mareike: Yeah.
Christine: brain didn't take that very well because that I had not at all prepared for that scenario. You know, that was,
Mareike: Wow.
Christine: and yeah, and I ended up providing a document outlining. all of the accommodations and supports that I had been given to my daughter. And then the pediatrician agreed that she was high masking and ended up diagnosing her. So it really, it has been a roller coaster of emotions and so much learning has occurred. It's critically important to do your research. get recommendations and to ask questions upfront to ensure you will be assessed by a practitioner who is experienced in diagnosing women in midlife and experience with masking. Because it goes hand in hand, know, with being diagnosed at midlife without masking, we would have been diagnosed in childhood. Yeah.
Mareike: Yes, listening to this, think probably the biggest piece of advice we could give is to choose your clinician carefully. Not all assessments are the same and not all clinicians
Christine: For sure. For sure.
Mareike: have the same experience.
Christine: Yeah. Especially if you're a woman, right? This is so
Mareike: Yes.
Christine: critically important if you're woman, you know, and we know that ADHD and autism can present very differently in women compared to the stereotypes many of us grew up with. You know, we've got an entire episode dedicated to this. So it's, it's really worth asking yourself some questions before you even book, you know, do they assess adults? Do they assess both ADHD and autism? Do they have experience assessing women? Do they understand high masking? And do they understand those more internalized presentations that many women experience?
Mareike: Yeah, and do they understand burnout, neo-divergent burnout? Do they understand giftness and twice exceptionality? Do they understand what neo-divergence can look like in parents? And do they recognize that trauma and neo-divergence can overlap and sometimes look similar? And those things can make a huge difference to whether you feel truly understood.
Christine: Yeah. And don't be afraid to ask the clinic questions as well. You know, how many adult assessments do they complete and what's their experience in assessing women and can they assess both together? You know, that would be really handy to actually get an ADHD and autism assessment combined. What questionnaires do they use? Will you need information from family members to proceed with the assessment? How many appointments are involved in? When can you expect to receive your report?
Mareike: And remember you're not interviewing them because you're trying to catch them out, you're making sure they the right fit for you.
Christine: Yeah. Get, get recommendations from family or friends who've already been along the journey. And if you're the first one, like, like I was, you know, research online, look at reviews, ask, you know, maybe therapists ask other people for recommendations. yeah, I always
Mareike: Yeah.
Christine: felt like a male, like a female assessor would understand me better than, than a male one, you know, just because. Yeah. you know, midlife and all of the challenges. It's just,
Mareike: Yeah, you don't have to explain that to a woman. And well,
Christine: Yeah, yeah.
Mareike: all that information actually gives me a little peace of mind. And also maybe encourages some women who are listening the same for you to think about it again, because sometimes I still catch myself thinking, do I even have the right to be here to talk about autism and ADHD, to say that I recognize myself in these experiences, to share my story before someone has officially confirmed it.
Christine: I think so many women feel exactly the same. You know, we somehow believe we need permission before we allow to understand ourselves. But understanding yourself and receiving a diagnosis aren't the same thing. A diagnosis can validate your experience, but it doesn't create it. know, your experiences existed long before someone put a name on it. And can I tell you something?
Mareike: Mm-hmm.
Christine: If we had never mentioned where each of us are on our diagnosis journey. Do you honestly think anyone listening would know? No, exactly. Because what people are connecting with isn't a piece of paper. They're connecting with your experiences, the stories you tell, the patterns you've recognized, the emotions you've lived through. They're real and important to tell whether a clinician has confirmed them yet or not. I've never once listened to you and thought, her perspective matters less because she's still waiting to be assessed, not for a second.
Mareike: Hmm.
Christine: Your experiences are your experiences. A diagnosis doesn't suddenly make them more true. It just gives them a clinical name.
Mareike: Thank you Christine, that means so much coming from you. I think that's something many women struggle with. know, we feel like we have to earn the right to tell our own story but the truth is, know, our stories existed long before any diagnosis did, you know.
Christine: Yes, yes. And I think this is where the nuance is so important. know, formal diagnosis can only be given by a qualified clinician. That's something we both completely respect. But we
Mareike: Yes.
Christine: also know that many women spend years or even decades waiting for assessments, facing barriers, trying to decide whether diagnosis even right for them. And that doesn't mean they have to put their lives on hold.
Mareike: Absolutely, assessments, you know, they can cost a lot of money. Women living in rural areas may have, you know, very few specialists available and in some countries there are hardly any adult diagnostic services at all. There can be language barriers, cultural barriers. Yeah.
Christine: And gender barriers as well. know, diagnosis simply isn't equally accessible.
Mareike: Yeah, and I think that's something we don't talk about enough. Sometimes people say, well, if you really wanted to diagnose this, you just get one. But for many women, it isn't that simple. Access to an assessment can depend on where you live, your financial situation, your family responsibilities, your health, or simply whether someone with the right expertise is available.
Christine: Exactly. Like some women struggle to get support from their GP for referral. You know, it all depends on where
Mareike: Yes.
Christine: you live and how educated and supportive the medical providers are that you engage with. And that's why we have to acknowledge that for many people, a formal diagnosis is also a privilege. Not because
Mareike: Absolutely.
Christine: it's more valuable, not because everyone has equal access to get. a diagnosis, know, so self understanding and a clinical diagnosis aren't the same thing, but they don't have to be in competition with each other either.
Mareike: Yes, and you can still benefit without a diagnosis. I'm constantly learning and adjusting my expectations of myself. I build routines that suit me rather than trying to force myself into systems that repeatedly fail.
Christine: Absolutely. I began reducing masking and understanding my sensory needs. I can join neurodivergent communities and I can try neurodivergent friendly strategies.
Mareike: Yeah, you don't have to wait for a report before you start caring for yourself. I mean, you and I, we both live in our neurodivergent families where some of us have a diagnosis and others don't. In our home, we've already made so many small adjustments that benefit everyone, not just the person with the diagnosis. Things like
Christine: Yeah.
Mareike: visual schedules, weekly planners, timers, noise cancelling headphones, fidget toys, reducing sensory overload, know, simply creating more predictability. None of those things require permission. diagnosis. If they make everyday life easier they're worth trying and my nervous system never knew how much it needed it and respond in a very positive way. And that's something I realized quite early on you don't have to wait for someone else to tell you that your needs are valid before you start meeting them.
Christine: Exactly. You're allowed to respond to your needs before anybody formally confirms why those needs exist. And if someone is deciding not to pursue a diagnosis, that is also valid. Not everyone sees any practical benefit from having the diagnosis. Or they may not currently have the emotional capacity to go through an assessment. Totally valid.
Mareike: Yeah, for the last one and half years, I felt that I already had enough understanding to make the changes I needed. But fear was also part of my decision not to look into an appointment because of all the things we mentioned before. But also age or life stage may play a role. Somebody may already be retired and feel that workplace documentation isn't relevant to them. Another reason could be that someone maybe does not want to get negatively labeled depending on their life situations. Were you concerned about you or your girls getting a negative and wrong label?
Christine: I wasn't concerned about labeling my daughters. I saw my oldest daughter's struggles and I just needed to find out how to support her. We desperately needed to understand what was going on and that minimized any fear that I held for her being labeled by others. And please also remember that receiving a diagnosis doesn't mean you have to share this with the whole world. Like you get to decide when and what. It took me six to eight months to process everything before starting to talk to people. as I was more comfortable, as I felt more comfortable. And a diagnosis can sometimes replace shame with understanding. can replace there's something wrong with me, with my brain works differently and there are reasons I experienced the world this way. And the difficulty is that children usually already know they're different. They notice when things seem easier for other children. They notice when they're repeatedly corrected, excluded or misunderstood. And without an explanation, they often invent one. They may decide, I must be lazy, I'm stupid, I'm bad, I can't do anything right. So the absence of a diagnosis doesn't necessarily protect them from labels. Other people may still label them and the child may label themselves. So a diagnosis can give them language instead of self-blame.
Mareike: Yeah, my son experiences the world differently and I want him to grow up understanding why. I don't want him to spend years believing something is wrong with him the way I did. When was about 10, I think another child called me crazy on the playground and that day I promised myself I will never behave like that again. And children do not need to be openly bullied to start hiding who they are and often simply realizing they do not quite fit in as enough. For me, a diagnosis does not create a label. It removes these harsh self-imposed judgments and replaces them with understanding. I want my son to know exactly why he experiences the world the way he does, because a child's own explanations, as you just said, for feeling different, are often much harsher than reality.
Christine: Yeah, yeah. At the same time, you know, I completely understand why some parents hesitate. There are still communities where words like autism or ADHD carry enormous stigma. Some parents are generally afraid that a diagnosis could become another reason for the child to be judged or bullied. And that fear is real and we don't want to dismiss it.
Mareike: Absolutely. I know families in that exact situation where they live in an environment where neurodivergence is misunderstood. You're not just making a decision about a diagnosis, you're trying to protect your child. And I think every parent is simply doing the best they can with the information and circumstances they have.
Christine: Yeah, for us the question eventually became this if our children are already noticing they're different, what story are they telling themselves about the why?
Mareike: Yes, that's a good one. But we also know that every family, every child and every environment is different. There isn't one right answer that fits everyone. And I think that's true for so many parts of this journey. Our perspectives, opinions and feelings evolve over time. It's a process. Just like I was saying about medication, at first I was completely against it because I was scared of what I might mean, what it might mean. And the more I learned, the more my perspective changed. I think it's the same with diagnosis. Sometimes we simply need time. more information and lived experience before we know what feels right for ourselves or for our children.
Christine: And maybe that's exactly why so many of us find ourselves asking these questions decades later. We spend so much of our lives adapting, masking and trying to fit in that we gradually lose sight of who we really are underneath it all. I think that's what this whole conversation has really been about. Not why or whether everyone should pursue a diagnosis, but about giving ourselves permission to ask the question in the first place. And the more I reflect on it, the more I realize there simply isn't one answer that fits everyone. Every journey is different and every decision deserves compassion rather than judgment.
Mareike: If diagnosis is available to you and aligns with your goals, it may open important doors, but it isn't accessible right now or you're still allowed to learn about autism and ADHD in women. You're allowed to explore new divergent friendly supports, change your environment, honor your needs and extend compassion towards yourself.
Christine: And if you've decided that pursuing a diagnosis is the right path for you, we'll continue that journey together next week. We'll be talking about the waiting, the time between booking your assessment and finally walking into that appointment and why it can be one of the most emotional parts of the entire diagnosis journey.
Mareike: So that will be an exciting month for me because if I'm honest, these weeks have brought up every emotion imaginable. So next week, we'll take you into that waiting room with us and talk openly about what it's really like to wait for answers after a lifetime of searching. Thank you for joining us for the first episode of our diagnosis journey.
Christine: Thank you for your time and attention today. One thing we've both learned is that the question do I need a diagnosis doesn't have one universal answer. Wherever you find yourself on that journey, we hope today's conversation reminded you that your experiences matter, your questions are valid, and you deserve compassion, especially from yourself. To help you remember all the important information we shared today, please find our Beyond Between Us conversation notes for this episode in the show notes below. If today's conversation resonated with you, we'd love your support. Following, rating, or sharing between us helps us reach more women who may be searching for understanding, recognition, and connection. One of the best parts of this podcast is hearing your experiences too. If you'd like to connect, we'd love to hear from you. Until next time, remember, there's no right or wrong way to understand yourself. Only the path that feels right for you. Thank you for being part of Between Us.
