1) you wrote this for me! I am one of those people! I like to think there's a reason I haven't really talked much about this here. I'm afraid y'all will find out and I'm a massive fraud. (for me, it was not "moving in a way they'd expect for an autistic person". I call bullshit on that, too.)
2) The official term for that is bullshit. - that line made me laugh. Thank you.
3) I saw you in her comments and I appreciate you engaging. I left, feeling angry and annoyed and afraid by having clicked on it, more of her garbage would show up in my feed.
4) I love your feistiness (??) / honesty/ directness etc. in calling things bullshit and garbage while also having a nuanced conversation.
5) Not everyone can bring in "I'm a little autistic" in a way that doesn't immediately cause a debate / pushback / withdrawal / eye roll. I love how you bring in nuance in such a real and light but also serious way.
Thank you, Hanna. Deep breath, exhale... this post sprang from some intensely felt emotions which is not safe territory for me! All part of the experiment, I guess? The new authentic me. Knowing that this sat right with you helps me feel good about it, because I very much trust your compass on these topics.
Oh the pressure, ha! It felt right for me; I’m one person; but again (as you know from my experiments here), that data is relevant! Funny, I’m thinking back to my Amazon product manager days: yes we were always looking at data and metrics. And ALSO we looked at customer insights and stories. Like very specific reactions from individual human beings. I think we can do that here too. Or: when data overall fails to give us the full picture, we can supplement with reactions to experiments.
Hanna! No pressure intended! Not everyone will agree with what I write here, I know. (Especially the Autism Purity Army). But there are people whose opinions I value, and yours is one of them. And you know what? I need to value my own opinion, too, even while remaining open to others. (I'm starting to feel like a one-woman *The More You Know* PSA over here.)
100% in regard to number 5 - I think it's important to remember that many of the people who say this are autistic and just don't know it. One of my closer friends now said this to me shortly after we first met, and I cringed internally but later realized that she was definitely also neurodivergent and had a valid reason for believing/saying it.
Great piece! I'm self diagnosed in middle age after both my daughters were diagnosed in childhood. I've been seeing a psychiatrist for depression for nearly 20 years and she knew nothing about autism and couldn't diagnose me. I haven't sought a formal diagnosis although it would possibly be affirming. I figure the fact that I produced two mini me's who have been formally diagnosed serves as enough confirmation for me. I wish my psychiatrist had been more informed though, as having a diagnosis 20 years earlier would have been life changing!
Thanks Camilla! Yeah, in your case, the mini-mes are strong evidence! With young kids myself, I recognize some of my traits in them, especially my daughter. It's something I'm monitoring. I mentioned in the post that I did 5 years of therapy about a decade ago. Although it was very useful for me at that point in time, I do wish that my therapist had recognized the signs of autism -- they were there, loud and clear. And it would have greatly helped my therapy for autism awareness to have been integrated in it. For instance, my meltdowns came up a lot, but of course we didn't use that term and didn't connect it to sensory/emotional overload. We just talked about it from the other angle, managing emotions. Which is helpful to a point, but now that I understand it as overload, I can watch out for my triggers better. And I haven't had a meltdown in months now (which is saying a lot, with 3 young kids and constant noise).
Great article! It’s so strange to read the idea that someone “can’t be autistic” if they have friends or a romantic relationship. I have both, and I was recently diagnosed with ASD. If nothing else, that suggests the criteria aren’t being applied consistently across providers.
But more importantly, I think the whole framework used to define autism as a disorder of “deficits in social communication” and “restricted, repetitive behaviors” is sort of comically inaccurate. It’s like describing the shadow of something and thinking you’re describing the thing. It reduces autism to the traits that can be observed from the outside, while completely ignoring the internal experience of being autistic.
It’s kind of like saying “blood is a red liquid.” That’s what it looks like to the naked eye, but it’s not what blood is. Blood is a suspension of cells in plasma, with complex properties you’d never know just by glancing at a drop. There’s no red liquid in it, it’s a clear/amber liquid with red blood cells suspended in it. That’s what the diagnostic model of autism feels like to me. It describes what’s visible to others with the most cursory observation, but it betrays a fundamental misunderstanding of what’s really going on beneath the surface.
Autism isn’t just about what other people see in us. It’s about how we experience the world. We process information, regulate input, relate to our own thoughts and environment, in ways that are fundamentally different from the non-autistic experience. Defining autism only by how atypical we appear to others flattens it into a list of deficits, instead of recognizing it as a fundamentally different way of existing.
It’s like if you saw someone walking with a limp, and instead of listening when they told you they’re doing this because their foot hurts, you thought they just had never learned to walk properly, or that they were walking that way on purpose just to annoy everyone. So instead of helping them find ways to avoid making the pain worse, you decided to teach them that their movements are wrong, and show them the correct way, so they can look how everyone else looks when they walk.
I really hope the professionals learn to do better with autism.
This was a great read, as always Laura, and close to my heart. I've been waiting over a year for my assessment - I do have the backing of a Clinical Psychologist who I spent a lot of time with in counselling regarding my son, and she used to be the lead assesor for the Intergrated Autism Serive here in Wales, so that gives me some assurance, and in a self identified way, I'm 99.9% sure I'm both autistic and have ADHD. But that 0.1% still bothers me. I would be devastated if I had an outcome like the ones you wrote about. M not pursuing an ADHD diagnosis because getting assessed for that is even harder here, and unless I wanted to medicate, I don't feel it would be a beneficial process. I could pay £1500 for a combined private assessment, but that's not a viable option for us.
Thanks for sharing, Alys. From my uninformed US vantage point, I'm surprised that it costs so much/is so hard to get assessed for ADHD in the UK. I guess I thought that a jurisdiction with public access to healthcare would be more... accessible? Sending good thoughts and vibes your way for your assessment. I hope you get an experienced psychologist, which it sounds like you will since there's such a thing as the Integrated Autism Service.
The NHS assessment is free - that's what I'm waiting for - very long waiting lists. If I wanted to speed it up and get the ADHD assessment I'd need to go private, which is where that cost comes from x
I was only able to get a diagnosis as a young girl because my mom was VERY stubborn haha, and I say that with lots of love. I’ve always said how thankful I am to have that diagnosis, that’s validation in who I am, because I don’t know where I would be today without it.
Thanks for commenting! I just subscribed to your Substack, I look forward to following your story. Makes me wonder what it would have been like if I were diagnosed as a kid. On the social side of things, as a kid, did having the diagnosis help with your self-esteem? I see your post talking about people saying you'd "grow out" of autism, a perspective that could easily damage self-esteem. Whatever you're willing to share here, of course. Thanks for reading.
Great question! I wish I could say it did haha, but it was definitely a label I ran away from as a kid, only because I couldn’t say the word “autism” without getting pitiful stares. It was kind of a different struggle, instead of “something is off about me and I don’t know what” it was “I know what’s off about me and I need to spend my life pretending NOTHING is” 😂 Thankfully that’s not how I live anymore!
Yeah, that makes a lot of sense. In my case, I'm not sure whether knowing I had autism as a kid would have helped. I think a lot of things would have needed to be different, not just that. Thanks!
Hi Hanna, you dropped the link to this article in reply to a comment I just made in one of those forums.
As has happened so often in the last 6 months, the words I have just read are words I could have written 90% of.
My diagnosis came in my fifth decade. And on the day of the diagnosis I experienced the most amazing emotional catharsis. I've never experienced anything like it and I'd be surprised to experience it again.
I had pretty much come to accept that I had autistic traits but felt like a fraud to describe myself as such. The switch that was flipped on the day of my diagnosis made me feel so empowered and joyful that I began to cry in emotional overwhelm, then laugh at the absurdity and then cry again. Back and forth with joy and overwhelm and relief, until I couldn't stop my cry-laughing without getting some physical comfort from my partner to ground myself again.
Your article reminded me of that. I think that the medical community's understanding of our nervous systems and neurotypes is going to be revolutionized in the next 50 years. Here's to being part of the voices making that change!!
Thank you for checking out the post and for sharing your story. Your emotional outpouring on getting your diagnosis is so powerful. I felt a similar wash of feelings. And I absolutely agree. Things are going to change a lot from here.
>You are the only expert on what it is to be you.<
This seems crucial. And powerful and empowering. Bravo!
This entire article was something I found invigorating. I was reminded of those odd cases I read about - it's very common, actually - in which someone is sick and they don't know what it is, many tests are done, then finally a diagnosis: it's very bad news. Some sort of cancer or death coming soon: what a relief these patients often feel! To have a NAME, a diagnosis from the experts!
The question seems always: okay, ya got a diagnosis. Now what are you gonna do? It's ALWAYS up to you. (Unless you're incapacitated...)
It's always a refreshing thing to remind myself: once we had no words for this phenomena, but our health and mental states were what they were.
You truly do bring clarity to a very murky subject. No mean feat.
Thank you! On this point: "It's always a refreshing thing to remind myself: once we had no words for this phenomena, but our health and mental states were what they were." It's a good reminder.
I was chatting with someone via Notes, and her comment reminded me that to name something is inherently to otherize it. To call this condition "autism" as we do today has trade-offs, and it's up to each person to decide what labels they're comfortable with.
Of course, in our modern era "autism" replaces other labels that were being applied and also occurs against the backdrop of the 20th century's institutionalization approach to divergence. In earlier periods of history, people who were different weren't as readily banished from their communities, although it has to be acknowledged that there was no golden era for disability and difference. As always, it's a complicated issue.
Einstein, Joyce, Bertrand Russell, and many other geniuses had offspring who were schizophrenic. It's still not clear if the genetic links between genius and madness are as strong as once thought.
I had a brother who was schizophrenic, and so I read 100 books on that. To have a "demon" inside yourself was one thing: what did that local culture/historical period think about demons? Usually: not a happy outcome. Cultural Anthropologists who study shamanism have noted how often the Weird Ones get shunted into the role of local wizard. That's really interesting, no?
Socrates told everyone he had a "demon" and yet he seemed fine, if only a nuisance who kept asking nagging Qs that just pissed us off. Finally, he was scapegoated and decided to cave to the hemlock trip.
The neurobiologist at Stanford, Robert Sapolsky, emphasized that it's 1.) the person, and 2.) their disease. And many cultures around the world see their disease as partly "our" disease. That's always been how I've felt. I know it's not really a significant feature of United States culture in the 20th/21st centuries, but I've privately made that my main model for thinking about all this, over the last 30 years or so.
The deep politics of thinking there's no Us/Them but only Us seems too much to delve into here.
Thank you for writing this Laura -- it's spot on. I too wrote a Substack in response to that psychiatrist: https://selkiesightings.substack.com/p/thats-just-wrong-004-the-not-expert. It's important work, going into the comments and pushing back on the pile-on -- and that's how I found YOU! Looking forward to reading your other stuff.
Fellow late diagnosed autistic here! I read the post you’re referencing and it upset me for days. Talk about lacking empathy. Your comments refuting her claims were really nice to see especially amidst so many people affirming her gross ableist viewpoints.
Thank you for saying that! That was my goal so I'm glad it landed. Yeah I've been thinking about that post and the comments a lot. I've been trying to figure out why people espousing that stuff care so much, and what the best way of pushing back is.
Thanks for writing this. I finally got an official diagnosis after a lot of self research. I’m AuDHD. Weirdly enough, it felt anticlimactic. Maybe because I had already started to make accommodations for myself that greatly reduced sensory overstimulation and overwhelming social demands.
I’m also a therapist who works with neurodivergent (ADHD and autistic) clients and with each training I took to learn more about autism I saw more of the experience in me. I provide neuro-affirming assessments that focus on differences rather than deficits. It infuriates me when a professional denies a diagnosis because of someone having friends, making eye contact, and having empathy when NONE of those are a requirement for meeting diagnostic criteria.
That's such an interesting path... assessing others for autism and then realizing, through that, you're autistic yourself. I'm glad to hear your focus is neuro-affirming. That was my psychologist's approach as well. If enough of us speak out on these issues (denial of diagnosis for having friends, making eye contact, empathy, etc.) maybe we'll contribute to a culture-shift, since it seems these diagnoses are being based more on cultural (mis)understandings than science.
Another great post Laura!sad situation tho..I think I've seen that psychiatrist and seen people share her work to call her out but I thought the same as you, better not to share it. I wished I hadn't seen it tbh as it's bleak AF.
Self diagnosis is valid but hard to take seriously after a life time of rejection and being told your actual perception is wrong or wonky.
I sometimes doubt my diagnosis and it's from a professional! But all the discussion around the so called dilution of autism get into your head don't they...
It is bleak AF but... somehow my primary reaction is anger, instead of internalizing what she says. My justice-seeking autism is triggered and all the righteous indignation comes spilling out. I just need to make sure I don't cross the line into self-righteousness and close my eyes to valid discourse. But in her case, no risk of that happening! No validity to be found.
It does get into your head. How could it not, with all the opposition? Not everyone frames their opposition to low-support needs autism as objectionably as she does, and there are some folks who express valid concerns that low-support needs autism takes attention away from high-support needs. My struggle is how to respect that position while remaining true to my own. I want to do both, to treat both as valid, without in the end watering down my support for either.
This resonates deeply. For me too, the shift from decades of trying to “fix” myself in therapy to finding self-acceptance was almost immediate after my diagnosis in my 40s. It was extremely validating.
You make a great point about how important certainty is for many autistic people. In hindsight, all those years in therapy feel like they were part of a long search for the truth.
I recently looked into a Psychology program and asked whether it included content on ADHD and autism. I was told that would fall more under neuroscience, not psychology. I find it concerning that people training to become therapists still aren’t receiving substantial education on something so central to so many people’s lives.
I mean... that's bonkers. Absolutely concerning, I agree. The diagnostic criteria for autism are specifically calibrated to the difficulties we experience day-to-day, in the world, so how is that only a matter of neuroscience, not psychology?
The DSM criteria omit a great many research-backed aspects of autism, like literal or black-and-white thinking, sensory processing issues, alexithymia. And the justification for that, I've read, is that the autism diagnosis is designed only to focus on autism's clear-cut difficulties, not simply neutral aspects. (Not a convincing justification, by the way). But accepting that explanation, it means the diagnostic criteria are focused on practical difficulties, which intervention-wise are the realm of therapy (a clinical application of psychology), not neuroscience. It's all so illogical.
Thanks for commenting. I think about this disconnect a lot. I wish there were something I could do to fix it, because the gap is so obvious that it nags at me.
This is excellent, thanks for sharing. From the linked article, this was certainly true for me into my 30s:
"Based on behavioral history, women may be more apt to receive diagnoses such as anxiety, mood disorders, learning disorders, and/or eating disorders rather than autism. This phenomenon is called diagnostic overshadowing, which occurs when a person’s symptoms are attributed to a psychiatric problem versus an underlying medical condition or a developmental delay such as autism. This can complicate the diagnostic process, as the focus may be on managing these secondary conditions rather than recognizing the underlying autistic traits."
Thank you for writing this! It's so refreshing to read your articles. You clearly put a lot of thought into writing them. This piece resonates particularly strongly with me, as I am moving from feeling "broken" to just "different". I wish I had found this kind of thing earlier.
Thanks for commenting. I agree re fuzzy edges, and the reality is, wherever the line is set, there will be people who fall just short. It makes me grateful that at least self-diagnosed people will find acceptance within the autism community, even if they're not accepted when it comes to things like accommodations. I'm so sorry to hear about your diagnostic experience. I think this post was motivated by a feeling akin to survivor's guilt, for lack of a better analogy. Why should I get the nice internal feelings that have come with my diagnosis, when others haven't? Thanks again for sharing your thoughts.
Thank you so much for sharing this. I don’t hide from disagreement, I think it’s productive and necessary. But here, I’m not sure we disagree all that much. Here’s why: in this post, I’m not talking about whether I wish I had been born differently. I’m saying that autism has made me realize that this is how I was born. So, it’s not that I was given the same tools as everyone else and am failing to make do with them. It’s that I was given different tools. That’s helped me accept myself as I am, rather than continue to feel deep shame about my struggles to form close relationships and be socially at ease.
When you write: “It’s true I don’t know who I would be if I weren’t autistic, but I think I would probably be happier,” you’re talking (I think) about how you were born, not whether you choose to affix the label to yourself or not.
The question at the heart of this post is not: has having the traits that make up autism made my life better, or worse? And honestly, that’s not a question I’m interested in answering, because what’s the point? It happened. Rather, the topic I’m tackling in this post is whether being able to recognize those traits as autistic has made my life better. For me, the answer is unquestionably, yes.
Another way of looking at it is: whether I use the label autism, or not, I’m still the same person. The autism label has explanatory power that I find personally validating and redeeming. That's an intensely personal view, and it's one that can result in a sense of loss or disorientation when a person believes the explanation fits them but is denied an official diagnosis.
Borrowing from autism subreddits, it’s like asking: Would you rather be a bad horse, or a good zebra? That’s what the label does. It lets us see ourselves as good zebras rather than bad horses.
I’m sorry I deleted my comment. I wanted to edit it but I couldn’t figure out how. I appreciate the thoughtful reply.
I guess my point was basically: for some of us, autism is not fundamentally about shame. Our biggest problems aren’t how we see ourselves or self-acceptance—it’s how to get our basic needs met and try to cobble together (with our support teams) a sustainable way to live.
I am not a “good zebra” because that implies I can do all the necessary things an equine could do; I just look different. But in fact, I can’t and I don’t. I am not a “bad horse” but I am a “congenitally disabled horse”. Calling myself a zebra doesn’t take away my disability. So again, it leads me back to the conclusion that people who think and talk that way, their biggest problem is their self-perception and self-worth, and while autistic people absolutely struggle with that (I do too), that’s not the fundamental problem of autism.
No worries, that's happened to me too on here. The comment feature, especially on the mobile app, is so wonky.
Thanks for helping me understand how you feel. I get what you're saying. Whereas I'm pointing out a silver lining in my experience, you're saying -- there's no silver lining for you. And from your perspective, even talking about silver linings undermines the deeper point that this is a disability. I hope I'm not mischaracterizing but it helps me to repeat things back. I appreciate your comments, thank you.
Sort of. I don’t know about a “silver lining”, but I do feel like diagnosis benefitted me in many of the ways you described—e.g., feeling better about myself. But that the benefit is overshadowed by the frustration and pain of still not being able to find adequate support around autistic struggles. For example, I really hoped that being diagnosed would give me access to the interpersonal and executive functioning support I would need to be able to work. What I discovered is that there are vocational programs for autistic people with low IQ, and accommodations (like work from home or wearing headphones) for autistic people who can generally work independently. There just isn’t anything out there for autistic people like me who are “book smart” but really need a lot of other kinds of support.
So I guess a lot of my comment was just bitterness about how I feel autism is being reduced to “profound autism” or “neurodiversity autism” these days. I’m very clearly not profoundly autistic, so I get lumped into with the neurodiverse crowd, but my support needs are higher than most people who are writing about autism from that perspective. Most people when I raise this readily acknowledge that support needs are variable and express sympathy and desire to help increase everyone’s access to adequate supports. But the reality is that acknowledgement is not the same as actually getting support.
I decided to go ahead and write this in the end not to diminish your experience of autism but mostly to try and raise visibility for how many autistic people don’t feel like our lives changed dramatically after getting diagnosed, even if the diagnosis did help with shame and identity, because our support needs are still not getting adequate attention or resources. Thank you for giving me the space.
Don't worry, no diminishment was felt on my end. I'm really glad you've spoken up. My experience is only one in an incredibly numerous, diverse group, and I don't want by any stretch to suggest we're monolithic. Your different views are valued here and very welcome. Your point that narratives coalesce around "profound autism" and "neurodiversity autism" is a good one that I'll continue to think about.
Are you on Reddit at all? I find that the r/AutisminWomen and r/AutisticAdults subreddit communities have really diverse poster/commenter populations that defy categorization. I feel like they help me stay better connected with others' experiences, and you might find kinship in some of the stories there.
1) you wrote this for me! I am one of those people! I like to think there's a reason I haven't really talked much about this here. I'm afraid y'all will find out and I'm a massive fraud. (for me, it was not "moving in a way they'd expect for an autistic person". I call bullshit on that, too.)
2) The official term for that is bullshit. - that line made me laugh. Thank you.
3) I saw you in her comments and I appreciate you engaging. I left, feeling angry and annoyed and afraid by having clicked on it, more of her garbage would show up in my feed.
4) I love your feistiness (??) / honesty/ directness etc. in calling things bullshit and garbage while also having a nuanced conversation.
5) Not everyone can bring in "I'm a little autistic" in a way that doesn't immediately cause a debate / pushback / withdrawal / eye roll. I love how you bring in nuance in such a real and light but also serious way.
Thank you, Hanna. Deep breath, exhale... this post sprang from some intensely felt emotions which is not safe territory for me! All part of the experiment, I guess? The new authentic me. Knowing that this sat right with you helps me feel good about it, because I very much trust your compass on these topics.
Oh the pressure, ha! It felt right for me; I’m one person; but again (as you know from my experiments here), that data is relevant! Funny, I’m thinking back to my Amazon product manager days: yes we were always looking at data and metrics. And ALSO we looked at customer insights and stories. Like very specific reactions from individual human beings. I think we can do that here too. Or: when data overall fails to give us the full picture, we can supplement with reactions to experiments.
Hanna! No pressure intended! Not everyone will agree with what I write here, I know. (Especially the Autism Purity Army). But there are people whose opinions I value, and yours is one of them. And you know what? I need to value my own opinion, too, even while remaining open to others. (I'm starting to feel like a one-woman *The More You Know* PSA over here.)
100% in regard to number 5 - I think it's important to remember that many of the people who say this are autistic and just don't know it. One of my closer friends now said this to me shortly after we first met, and I cringed internally but later realized that she was definitely also neurodivergent and had a valid reason for believing/saying it.
Great piece! I'm self diagnosed in middle age after both my daughters were diagnosed in childhood. I've been seeing a psychiatrist for depression for nearly 20 years and she knew nothing about autism and couldn't diagnose me. I haven't sought a formal diagnosis although it would possibly be affirming. I figure the fact that I produced two mini me's who have been formally diagnosed serves as enough confirmation for me. I wish my psychiatrist had been more informed though, as having a diagnosis 20 years earlier would have been life changing!
Thanks Camilla! Yeah, in your case, the mini-mes are strong evidence! With young kids myself, I recognize some of my traits in them, especially my daughter. It's something I'm monitoring. I mentioned in the post that I did 5 years of therapy about a decade ago. Although it was very useful for me at that point in time, I do wish that my therapist had recognized the signs of autism -- they were there, loud and clear. And it would have greatly helped my therapy for autism awareness to have been integrated in it. For instance, my meltdowns came up a lot, but of course we didn't use that term and didn't connect it to sensory/emotional overload. We just talked about it from the other angle, managing emotions. Which is helpful to a point, but now that I understand it as overload, I can watch out for my triggers better. And I haven't had a meltdown in months now (which is saying a lot, with 3 young kids and constant noise).
Great article! It’s so strange to read the idea that someone “can’t be autistic” if they have friends or a romantic relationship. I have both, and I was recently diagnosed with ASD. If nothing else, that suggests the criteria aren’t being applied consistently across providers.
But more importantly, I think the whole framework used to define autism as a disorder of “deficits in social communication” and “restricted, repetitive behaviors” is sort of comically inaccurate. It’s like describing the shadow of something and thinking you’re describing the thing. It reduces autism to the traits that can be observed from the outside, while completely ignoring the internal experience of being autistic.
It’s kind of like saying “blood is a red liquid.” That’s what it looks like to the naked eye, but it’s not what blood is. Blood is a suspension of cells in plasma, with complex properties you’d never know just by glancing at a drop. There’s no red liquid in it, it’s a clear/amber liquid with red blood cells suspended in it. That’s what the diagnostic model of autism feels like to me. It describes what’s visible to others with the most cursory observation, but it betrays a fundamental misunderstanding of what’s really going on beneath the surface.
Autism isn’t just about what other people see in us. It’s about how we experience the world. We process information, regulate input, relate to our own thoughts and environment, in ways that are fundamentally different from the non-autistic experience. Defining autism only by how atypical we appear to others flattens it into a list of deficits, instead of recognizing it as a fundamentally different way of existing.
It’s like if you saw someone walking with a limp, and instead of listening when they told you they’re doing this because their foot hurts, you thought they just had never learned to walk properly, or that they were walking that way on purpose just to annoy everyone. So instead of helping them find ways to avoid making the pain worse, you decided to teach them that their movements are wrong, and show them the correct way, so they can look how everyone else looks when they walk.
I really hope the professionals learn to do better with autism.
Thanks for this wonderful comment, Shannon! I agree with you and have thought about these things often myself but not through the spot-on metaphors you use. I mentioned your comment in my newsletter today: https://www.strangeclarity.com/p/why-fish-dont-exist-and-schizophrenia
This was a great read, as always Laura, and close to my heart. I've been waiting over a year for my assessment - I do have the backing of a Clinical Psychologist who I spent a lot of time with in counselling regarding my son, and she used to be the lead assesor for the Intergrated Autism Serive here in Wales, so that gives me some assurance, and in a self identified way, I'm 99.9% sure I'm both autistic and have ADHD. But that 0.1% still bothers me. I would be devastated if I had an outcome like the ones you wrote about. M not pursuing an ADHD diagnosis because getting assessed for that is even harder here, and unless I wanted to medicate, I don't feel it would be a beneficial process. I could pay £1500 for a combined private assessment, but that's not a viable option for us.
Thanks for sharing, Alys. From my uninformed US vantage point, I'm surprised that it costs so much/is so hard to get assessed for ADHD in the UK. I guess I thought that a jurisdiction with public access to healthcare would be more... accessible? Sending good thoughts and vibes your way for your assessment. I hope you get an experienced psychologist, which it sounds like you will since there's such a thing as the Integrated Autism Service.
The NHS assessment is free - that's what I'm waiting for - very long waiting lists. If I wanted to speed it up and get the ADHD assessment I'd need to go private, which is where that cost comes from x
Ah, got it. Thanks for the insights!
I was only able to get a diagnosis as a young girl because my mom was VERY stubborn haha, and I say that with lots of love. I’ve always said how thankful I am to have that diagnosis, that’s validation in who I am, because I don’t know where I would be today without it.
Thanks for commenting! I just subscribed to your Substack, I look forward to following your story. Makes me wonder what it would have been like if I were diagnosed as a kid. On the social side of things, as a kid, did having the diagnosis help with your self-esteem? I see your post talking about people saying you'd "grow out" of autism, a perspective that could easily damage self-esteem. Whatever you're willing to share here, of course. Thanks for reading.
Great question! I wish I could say it did haha, but it was definitely a label I ran away from as a kid, only because I couldn’t say the word “autism” without getting pitiful stares. It was kind of a different struggle, instead of “something is off about me and I don’t know what” it was “I know what’s off about me and I need to spend my life pretending NOTHING is” 😂 Thankfully that’s not how I live anymore!
Yeah, that makes a lot of sense. In my case, I'm not sure whether knowing I had autism as a kid would have helped. I think a lot of things would have needed to be different, not just that. Thanks!
Hi Hanna, you dropped the link to this article in reply to a comment I just made in one of those forums.
As has happened so often in the last 6 months, the words I have just read are words I could have written 90% of.
My diagnosis came in my fifth decade. And on the day of the diagnosis I experienced the most amazing emotional catharsis. I've never experienced anything like it and I'd be surprised to experience it again.
I had pretty much come to accept that I had autistic traits but felt like a fraud to describe myself as such. The switch that was flipped on the day of my diagnosis made me feel so empowered and joyful that I began to cry in emotional overwhelm, then laugh at the absurdity and then cry again. Back and forth with joy and overwhelm and relief, until I couldn't stop my cry-laughing without getting some physical comfort from my partner to ground myself again.
Your article reminded me of that. I think that the medical community's understanding of our nervous systems and neurotypes is going to be revolutionized in the next 50 years. Here's to being part of the voices making that change!!
Thank you for checking out the post and for sharing your story. Your emotional outpouring on getting your diagnosis is so powerful. I felt a similar wash of feelings. And I absolutely agree. Things are going to change a lot from here.
Laura's line, near the end:
>You are the only expert on what it is to be you.<
This seems crucial. And powerful and empowering. Bravo!
This entire article was something I found invigorating. I was reminded of those odd cases I read about - it's very common, actually - in which someone is sick and they don't know what it is, many tests are done, then finally a diagnosis: it's very bad news. Some sort of cancer or death coming soon: what a relief these patients often feel! To have a NAME, a diagnosis from the experts!
The question seems always: okay, ya got a diagnosis. Now what are you gonna do? It's ALWAYS up to you. (Unless you're incapacitated...)
It's always a refreshing thing to remind myself: once we had no words for this phenomena, but our health and mental states were what they were.
You truly do bring clarity to a very murky subject. No mean feat.
Thank you! On this point: "It's always a refreshing thing to remind myself: once we had no words for this phenomena, but our health and mental states were what they were." It's a good reminder.
I was chatting with someone via Notes, and her comment reminded me that to name something is inherently to otherize it. To call this condition "autism" as we do today has trade-offs, and it's up to each person to decide what labels they're comfortable with.
Of course, in our modern era "autism" replaces other labels that were being applied and also occurs against the backdrop of the 20th century's institutionalization approach to divergence. In earlier periods of history, people who were different weren't as readily banished from their communities, although it has to be acknowledged that there was no golden era for disability and difference. As always, it's a complicated issue.
Einstein, Joyce, Bertrand Russell, and many other geniuses had offspring who were schizophrenic. It's still not clear if the genetic links between genius and madness are as strong as once thought.
I had a brother who was schizophrenic, and so I read 100 books on that. To have a "demon" inside yourself was one thing: what did that local culture/historical period think about demons? Usually: not a happy outcome. Cultural Anthropologists who study shamanism have noted how often the Weird Ones get shunted into the role of local wizard. That's really interesting, no?
Socrates told everyone he had a "demon" and yet he seemed fine, if only a nuisance who kept asking nagging Qs that just pissed us off. Finally, he was scapegoated and decided to cave to the hemlock trip.
The neurobiologist at Stanford, Robert Sapolsky, emphasized that it's 1.) the person, and 2.) their disease. And many cultures around the world see their disease as partly "our" disease. That's always been how I've felt. I know it's not really a significant feature of United States culture in the 20th/21st centuries, but I've privately made that my main model for thinking about all this, over the last 30 years or so.
The deep politics of thinking there's no Us/Them but only Us seems too much to delve into here.
Thank you for writing this Laura -- it's spot on. I too wrote a Substack in response to that psychiatrist: https://selkiesightings.substack.com/p/thats-just-wrong-004-the-not-expert. It's important work, going into the comments and pushing back on the pile-on -- and that's how I found YOU! Looking forward to reading your other stuff.
Likewise! I've just subscribed. Thanks for sharing your post, it's excellent.
Thank you so much, I appreciate your feedback.
Fellow late diagnosed autistic here! I read the post you’re referencing and it upset me for days. Talk about lacking empathy. Your comments refuting her claims were really nice to see especially amidst so many people affirming her gross ableist viewpoints.
Thank you for saying that! That was my goal so I'm glad it landed. Yeah I've been thinking about that post and the comments a lot. I've been trying to figure out why people espousing that stuff care so much, and what the best way of pushing back is.
Thanks for writing this. I finally got an official diagnosis after a lot of self research. I’m AuDHD. Weirdly enough, it felt anticlimactic. Maybe because I had already started to make accommodations for myself that greatly reduced sensory overstimulation and overwhelming social demands.
I’m also a therapist who works with neurodivergent (ADHD and autistic) clients and with each training I took to learn more about autism I saw more of the experience in me. I provide neuro-affirming assessments that focus on differences rather than deficits. It infuriates me when a professional denies a diagnosis because of someone having friends, making eye contact, and having empathy when NONE of those are a requirement for meeting diagnostic criteria.
That's such an interesting path... assessing others for autism and then realizing, through that, you're autistic yourself. I'm glad to hear your focus is neuro-affirming. That was my psychologist's approach as well. If enough of us speak out on these issues (denial of diagnosis for having friends, making eye contact, empathy, etc.) maybe we'll contribute to a culture-shift, since it seems these diagnoses are being based more on cultural (mis)understandings than science.
Another great post Laura!sad situation tho..I think I've seen that psychiatrist and seen people share her work to call her out but I thought the same as you, better not to share it. I wished I hadn't seen it tbh as it's bleak AF.
Self diagnosis is valid but hard to take seriously after a life time of rejection and being told your actual perception is wrong or wonky.
I sometimes doubt my diagnosis and it's from a professional! But all the discussion around the so called dilution of autism get into your head don't they...
It is bleak AF but... somehow my primary reaction is anger, instead of internalizing what she says. My justice-seeking autism is triggered and all the righteous indignation comes spilling out. I just need to make sure I don't cross the line into self-righteousness and close my eyes to valid discourse. But in her case, no risk of that happening! No validity to be found.
It does get into your head. How could it not, with all the opposition? Not everyone frames their opposition to low-support needs autism as objectionably as she does, and there are some folks who express valid concerns that low-support needs autism takes attention away from high-support needs. My struggle is how to respect that position while remaining true to my own. I want to do both, to treat both as valid, without in the end watering down my support for either.
This resonates deeply. For me too, the shift from decades of trying to “fix” myself in therapy to finding self-acceptance was almost immediate after my diagnosis in my 40s. It was extremely validating.
You make a great point about how important certainty is for many autistic people. In hindsight, all those years in therapy feel like they were part of a long search for the truth.
I recently looked into a Psychology program and asked whether it included content on ADHD and autism. I was told that would fall more under neuroscience, not psychology. I find it concerning that people training to become therapists still aren’t receiving substantial education on something so central to so many people’s lives.
I mean... that's bonkers. Absolutely concerning, I agree. The diagnostic criteria for autism are specifically calibrated to the difficulties we experience day-to-day, in the world, so how is that only a matter of neuroscience, not psychology?
The DSM criteria omit a great many research-backed aspects of autism, like literal or black-and-white thinking, sensory processing issues, alexithymia. And the justification for that, I've read, is that the autism diagnosis is designed only to focus on autism's clear-cut difficulties, not simply neutral aspects. (Not a convincing justification, by the way). But accepting that explanation, it means the diagnostic criteria are focused on practical difficulties, which intervention-wise are the realm of therapy (a clinical application of psychology), not neuroscience. It's all so illogical.
Thanks for commenting. I think about this disconnect a lot. I wish there were something I could do to fix it, because the gap is so obvious that it nags at me.
Women with autism are under-diagnosed and often mis-diagnosed.
https://www.adult-autism.health.harvard.edu/resources/how-is-autism-different-in-females/
I think that speaks volumes on the patriarchal nature of our society.
This is excellent, thanks for sharing. From the linked article, this was certainly true for me into my 30s:
"Based on behavioral history, women may be more apt to receive diagnoses such as anxiety, mood disorders, learning disorders, and/or eating disorders rather than autism. This phenomenon is called diagnostic overshadowing, which occurs when a person’s symptoms are attributed to a psychiatric problem versus an underlying medical condition or a developmental delay such as autism. This can complicate the diagnostic process, as the focus may be on managing these secondary conditions rather than recognizing the underlying autistic traits."
Thank you for writing this! It's so refreshing to read your articles. You clearly put a lot of thought into writing them. This piece resonates particularly strongly with me, as I am moving from feeling "broken" to just "different". I wish I had found this kind of thing earlier.
Thanks for commenting. I agree re fuzzy edges, and the reality is, wherever the line is set, there will be people who fall just short. It makes me grateful that at least self-diagnosed people will find acceptance within the autism community, even if they're not accepted when it comes to things like accommodations. I'm so sorry to hear about your diagnostic experience. I think this post was motivated by a feeling akin to survivor's guilt, for lack of a better analogy. Why should I get the nice internal feelings that have come with my diagnosis, when others haven't? Thanks again for sharing your thoughts.
Thank you so much for sharing this. I don’t hide from disagreement, I think it’s productive and necessary. But here, I’m not sure we disagree all that much. Here’s why: in this post, I’m not talking about whether I wish I had been born differently. I’m saying that autism has made me realize that this is how I was born. So, it’s not that I was given the same tools as everyone else and am failing to make do with them. It’s that I was given different tools. That’s helped me accept myself as I am, rather than continue to feel deep shame about my struggles to form close relationships and be socially at ease.
When you write: “It’s true I don’t know who I would be if I weren’t autistic, but I think I would probably be happier,” you’re talking (I think) about how you were born, not whether you choose to affix the label to yourself or not.
The question at the heart of this post is not: has having the traits that make up autism made my life better, or worse? And honestly, that’s not a question I’m interested in answering, because what’s the point? It happened. Rather, the topic I’m tackling in this post is whether being able to recognize those traits as autistic has made my life better. For me, the answer is unquestionably, yes.
Another way of looking at it is: whether I use the label autism, or not, I’m still the same person. The autism label has explanatory power that I find personally validating and redeeming. That's an intensely personal view, and it's one that can result in a sense of loss or disorientation when a person believes the explanation fits them but is denied an official diagnosis.
Borrowing from autism subreddits, it’s like asking: Would you rather be a bad horse, or a good zebra? That’s what the label does. It lets us see ourselves as good zebras rather than bad horses.
I’m sorry I deleted my comment. I wanted to edit it but I couldn’t figure out how. I appreciate the thoughtful reply.
I guess my point was basically: for some of us, autism is not fundamentally about shame. Our biggest problems aren’t how we see ourselves or self-acceptance—it’s how to get our basic needs met and try to cobble together (with our support teams) a sustainable way to live.
I am not a “good zebra” because that implies I can do all the necessary things an equine could do; I just look different. But in fact, I can’t and I don’t. I am not a “bad horse” but I am a “congenitally disabled horse”. Calling myself a zebra doesn’t take away my disability. So again, it leads me back to the conclusion that people who think and talk that way, their biggest problem is their self-perception and self-worth, and while autistic people absolutely struggle with that (I do too), that’s not the fundamental problem of autism.
No worries, that's happened to me too on here. The comment feature, especially on the mobile app, is so wonky.
Thanks for helping me understand how you feel. I get what you're saying. Whereas I'm pointing out a silver lining in my experience, you're saying -- there's no silver lining for you. And from your perspective, even talking about silver linings undermines the deeper point that this is a disability. I hope I'm not mischaracterizing but it helps me to repeat things back. I appreciate your comments, thank you.
Sort of. I don’t know about a “silver lining”, but I do feel like diagnosis benefitted me in many of the ways you described—e.g., feeling better about myself. But that the benefit is overshadowed by the frustration and pain of still not being able to find adequate support around autistic struggles. For example, I really hoped that being diagnosed would give me access to the interpersonal and executive functioning support I would need to be able to work. What I discovered is that there are vocational programs for autistic people with low IQ, and accommodations (like work from home or wearing headphones) for autistic people who can generally work independently. There just isn’t anything out there for autistic people like me who are “book smart” but really need a lot of other kinds of support.
So I guess a lot of my comment was just bitterness about how I feel autism is being reduced to “profound autism” or “neurodiversity autism” these days. I’m very clearly not profoundly autistic, so I get lumped into with the neurodiverse crowd, but my support needs are higher than most people who are writing about autism from that perspective. Most people when I raise this readily acknowledge that support needs are variable and express sympathy and desire to help increase everyone’s access to adequate supports. But the reality is that acknowledgement is not the same as actually getting support.
I decided to go ahead and write this in the end not to diminish your experience of autism but mostly to try and raise visibility for how many autistic people don’t feel like our lives changed dramatically after getting diagnosed, even if the diagnosis did help with shame and identity, because our support needs are still not getting adequate attention or resources. Thank you for giving me the space.
Don't worry, no diminishment was felt on my end. I'm really glad you've spoken up. My experience is only one in an incredibly numerous, diverse group, and I don't want by any stretch to suggest we're monolithic. Your different views are valued here and very welcome. Your point that narratives coalesce around "profound autism" and "neurodiversity autism" is a good one that I'll continue to think about.
Are you on Reddit at all? I find that the r/AutisminWomen and r/AutisticAdults subreddit communities have really diverse poster/commenter populations that defy categorization. I feel like they help me stay better connected with others' experiences, and you might find kinship in some of the stories there.