Accurate diagnosis/identification can save lives. It saved mine.
This month, September, is suicide awareness month - this article speaks to that topic, so if it is a sensitive one for you, please exercise discernment and take care of yourself. I won’t be at all offended if you don’t read on.
The topic of suicide is so tender to my heart having experienced years of feeling so lost and alone in this world and the pain and suffering that came along with that. It’s also been close to me, having lost my dad to suicide exactly 10 years ago to the month.
Him… also neurodivergent yet unaware of the impact of this. Men with ADHD in that age group were stereotyped as reckless and a nuisance instead of seen and reflected for the whole of who they were. I watched him struggle to find peace within himself for so long, feeling out of place and defective, while simultaneously crashing from impulsivity, intensity, restlessness, attention that pulled him in a thousand directions… a true jack of all trades yet unaware of how to focus in on them, and so many other things that landed him into addictions instead of care that really saw him and supported him… accurately.
The combo of complex trauma and neurodivergence, unidentified and unsupported, in my opinion, left him feeling without options to continue on in his life. This was heartbreaking. And still is.
What I want to talk about here is something I wish the whole world knew: getting accurately diagnosed/identified can save lives. And by ‘diagnosed/identified’, I’m not just meaning as Autistic or ADHD.
A lot of therapists try to avoid diagnosis because they're uncomfortable with the DSM (the Diagnostic and Statistical Manual of Mental Disorders, which is the standard guidebook used by mental health professionals to diagnose and classify mental health conditions). I am also uncomfortable with it for various reasons, but more and more I am seeing the harm that can be caused when we don't find the appropriate language for what clients are experiencing.
Accurate diagnosis gives us language for these experiences - about trauma, about ADHD, about Autism, about depression, about anxiety, about OCD, about all sorts of things. We can then use diagnosis in an affirming way - we can use it as a starting point to help us understand ourselves better, and to choose the appropriate support and care that doesn't pathologize or see this as something wrong that needs fixing.
Accurate identification helps us understand the particular shape you've taken in the world, and how the world has been shaped around you, and gives us insight into how we might dance within that.
With this understanding, we’re then able to find other people who've had similar experiences, enabling us to find communities, find practitioners, access specialized support - instead of what I did, when I was told over and over again that what I was experiencing was ‘just trauma’ because my therapists were not only not trained in seeing high masking autism, but believed that if they labeled me in any other way besides ‘generalized anxiety disorder’ or ‘this is trauma’, it could be detrimental to me because of the stereotype and stigma attached to other quote unquote ‘labels’.
There's such a gray area between ‘we love labels’ versus ‘we hate labels’, and I think this is because those old narratives of labels being seen as limiting rather than understood as empowering are keeping people from being accurately seen and helped. A lot of this is connected to the DSM, but it is not limited to the DSM. Therapists who believe they're doing a nice job by avoiding diagnosing their clients have actually not been serving people, and yes - I used to think that way and avoid diagnosing clients too.
So, I want to underline that there's nuance here. There is a gray area. None of this is black and white. There's a way to label and identify in an empowered way versus a pathologizing way. To use Autism as an example: you might identify with the criteria in the DSM that describes Autism, but not take on the pathologizing words and descriptions within the DSM (deficit, disorder, etc.). Instead of taking on Autism as a disorder, you may simply see it as a difference in processing, and call yourself ‘Autistic’ or say you have ‘Autism Spectrum Condition’. There’s a lot more that could be said about this - perhaps a topic for another time!
I’m not saying that you personally need to identify as neurodivergent or get an accurate diagnosis of anything, more that no matter how you’re trying to get clear on who you are and how to tap into your wholeness, accuracy is really important. Being reflected back accurately by your practitioners is very important.
Yes, sometimes we miss things. Yes, there's always room to learn more over time, and, just like avoiding a diagnosis for the sake of avoiding stigma and stereotype, taking the blanket approach of ‘we hate labels’ is probably not the most intelligent way to go if we're really trying to help people.
I hear from far too many clients who come to me later in life, still looking for answers, about the dread and weight that comes along with still not feeling seen, validated, affirmed, accommodated, supported and so much more. Accurate diagnosis/identification can help to lift that weight, and, I believe, save lives.
It sure did save mine.
I’m not exaggerating when I say that. I was eleven when I started to realize how different I truly felt inside from how I was told to feel, slogging through life with a constant sense of feeling perpetually heartbroken within myself but couldn’t fully put a finger on why. Dread and shame made up the fabric of my very being over time (though it was a long time before I knew that what I was experiencing was shame).
I didn't want to live, but something in me also couldn’t follow the impulses to no longer live, despite the hopelessness and existential weight I carried in my bones. So I existed in a liminal space that over time drained me to burnout after burnout, wondering what was wrong with me that the treatments, therapy and all of the self-help books in the world I received never worked the way I saw them working for others. They often made sense for a minute and I’d be soaring from hope and then crash down feeling a familiar sense of not fully feeling “gotten”. Something was always missing in the explanations or explorations.
In my late teens, my therapist at the time suggested perhaps it was bipolar 2. In my 20s, I wondered if it was borderline personality disorder because of my frequent meltdowns that felt completely uncontrollable despite hundreds of thousands of hours of meditation, therapy and name just about any other healing modality. I did a lot of trauma healing that never seemed to help in the ways it described it should. All with a heaping load of anxiety disorder, dysthymia, not to mention unidentified PMDD (Premenstrual Dysphoric Disorder) - that one week each month where I felt just pure madness which I called my "I quit week"... I wanted to rip the carpet out from under myself and anything good while simultaneously not having an ounce of energy because I'd be exhausting myself crying in the kitchen, crying on the bathroom floor, crying in the grocery store, crying in the car... SOBBING like my heart had been broken on a deep soul level, once a month. I felt like I started my life over… once a month because each time this happened, I ended up in an experience of burn out that I had to build myself back from… mostly alone.
I carried around the feeling that I didn't make sense... I was constantly misperceived, feeling the thousand paper cuts of that misperception and instead of my skin getting thicker, it did the opposite. Because I didn't make sense, I needed to work harder, heal harder, work to perfect who I was and what I did, work to perform, work to people please and… unsurprisingly, doing that made everything WORSE.
If I'm honest, I had lost hope. I had lost hope in most therapists, modalities, healers and healing... for me. Not for everyone... but for me. I believed somehow maybe... I was cursed to live so painfully forever, even while helping my clients feel better - which I felt great at and it always felt incredible to be able to help them and deeply see them... I've always loved my job.
And then I received an accurate diagnosis.
I was accurately identified as an AuDHDer (someone who is both Autistic and an ADHDer), alongside being profiled as gifted. And a weight lifted nearly immediately. It made sense. I made sense. I wasn’t too much, or not enough, or broken, or any of the other tangles that unidentified and misidentified people carry with them. When I looked at my strengths and struggles through the lens of neurodivergence and neurocomplexity, it all made sense. I wasn’t irreparably broken, I was just wired differently. There were others like me who lived within these identifications who seemed to also struggle in similar ways… why had I never heard about them?!
Complex PTSD was and is absolutely still accurate - but it wasn’t the full picture. Speaking from my own experience, without these missing pieces there was no way for me to move forward with my healing and wholeness. And while there are many ways to lift the pain of the parts of us that no longer want to live and believe dying by suicide may be an option, for me and for so many others I see, it has been THIS - getting accurately identified - that has lifted something off their shoulders that they'd been carrying for a lifetime that was NEVER actually them.
It truly was the weight of the world/society/mental health stigma/stereotypes/etc. that was sitting on top of them that they could finally see through and finally allow compassion to emerge through this clear seeing. From there... freedom begins.
Had that been identified decades earlier (had my PMDD been identified decades earlier)... oh my GOD who would I be?
Would I have been less chronically ill? I believe so.
Would I have met my person and had a chance to have a family? Honestly couldn't say, but perhaps it would have been more possible.
Would I have had more money in my retirement account and more fun money?! I think so.
Had I been seen for my DIFFERENCES in a loving and affirming way (honestly, I can't even imagine with the family that I had)... I can't help but wonder if the wish to not live may have subsided more quickly.
With an accurate identification, I was able to turn my heart towards all of the pieces that make up my neurocomplexity - with the loving support of my mentor and a couple of close friends, and well... nature, dogs, horses, long drives and music… (as you might know, if you’ve been here any length of time, healing is relational - I couldn’t do it on my own).
Without a framework that fit and neuro affirming, non-pathologizing care, I’d still be in a spell of shame and unworthiness, heartbroken daily as my sweet sensitive soul longed for a home inside myself and inside the world yet it felt just out of reach.
So here's where someone might spiritually bypass or silver lining the heck out of my story: oh, but Shelby.. don't you see the good that has come from your suffering?
I won't swear here, but the immediate impulse would be to scream obscenities and break something.
NO. when people do this kind of thing - they’re trying to alleviate their discomfort with our pain by telling us to be grateful, to see the goodness, and… just no.
It was terrible. I wouldn't wish it upon another sweet, precious soul.
And, I see this pain EVERY DAY in my practice with my clients. I see them at the bottom of their barrel having spent every dollar they've ever had in their hands on trying to FIX themselves because the world has told them they're disordered and not simply DIFFERENT (yes... this difference comes with challenges, but that's for another time).
I see people heartbroken, aching inside from never being fully seen. Some of them do not want to live like this anymore. Many of them do not. But, they don't know what to do because they also can't die or don't want to. So they're in this impossible bind.
There is a way out, however. It’s through tending, lovingly, to that impossible bind. We don't bypass it, we don't slap some toxic positivity on it. We embrace it, we hold it together and we see clearly finding the TRUE puzzle pieces that fit. Whether it's Autism or complex trauma or ADHD or giftedness or none of it or all of it... we sit WITH it together and lovingly see what's been there all along and name it. We name the pain, and the beauty and everything in between.
And more often than not, what happens is that people remember who they are at their deepest core as they welcome themselves home. And weights lift, shame slowly gets replaced with compassion "it makes so much sense I feel this way or have felt this way", being silent and invisible gets replaced with an amazing sense of justice and fierceness with a voice.
So much can happen with the right identification, the right framework for understanding ourselves.
It truly can save lives.
If you are someone considering suicide, please call the suicide hotline: 988
If you’re outside of the US, please search for the number in your country.
And if you are someone stuck in that place between, that impossible bind, please know that you are not alone, you are not invisible, and I and so many others who "get it" are holding you in our hearts.
If you’re curious about what a neuro-affirming Autism and/or ADHD assessment might do for you, I offer those in Oregon, California and Montana (if you live there, or can travel there for your assessment appointment). Click here to find out more and book.
If you’re in another state, you might like to have a look at the Method website, or do a google search for neuro-affirming assessments where you live.
