Potentially autistic and frustrated
A few months ago I went to the psychiatrist and we talked for like an hour. We got onto the topic of autism and I mentioned how I was always curious if I had it. She spent like five or so minutes asking me questions and said she would put me as autism coded in my chart.
I wasn't sure if that meant it was an official diagnosis or not but I didn't think to ask until after the appointment. It seemed really quick for it to be an official diagnosis.
I went back to her last week and brought up that she marked me as "autism coded." I asked "is that a diagnosis or does it just mean it's suspected?" She didn't really give a straightforward answer and just said that I have "really really high functioning autism."
But I don't know if that means I'm officially diagnosed. And if I take her at her words of calling me autistic and then applying that label to myself I feel like a fake because I never had a huge assessment like most people.
Thoughts? Advice? Am I overthinking this?
Honestly, if you think you are autistic having a diagnosis is less important than seeking support though others' experiences like you are here. I had a diagnosis as a child but I started passing as NT as a preteen, so for 20ish years no one has treated me like I am autistic. The diagnosis only holds value because I believe it is true, not because some doctor said it. I figure I could probably "pass" an autism test today and have a doctor classify me as NT, but I've had decades of practice in social situations. The diagnosis in your heart is all that matters.
Same situation here, diagnosed Asperger’s back when that was a thing. Ignored it for most of my life, realized its actually pretty relevant when navigating romantic relationships. Just knowing about that diagnosis helped because I had a specific area that I could study when I needed help. Seems OP has a direction to go in, that might be all the help they need.
You were diagnosed as Autism Coded by your responses to the questionnaire. You asked to be evaluated and you were.
Do you have Autism? Maybe but there are enough comorbities that also align with your response that you might have something else. If you want the hard and fast stamp of the full diagnosis, request a more thorough evaluation.
Also, in a more honest moment of self evaluation, if you come to find out all your tics are related to autism how will that change how you deal with them? What if you find out you don't have autism but still have all the same tendencies as before? What does that mean for you?
You can look up in the DSM the questions if you want. ASD is a disorder - being high functioning means you don't have something as serious as that.
This is both straight-up wrong and really invalidating not just to OP but also to loads of autistic people. ASD as a DSM diagnosis doesn't remotely exclude "high-functioning" people and the entire reason people used labels like "high-functioning" and "low-functioning" for autism (my understanding is that this terminology isn't favored by many these days, with "high/low support needs" becoming more common as a replacement, but the "high/low functioning" terminology is still used in many places) was to distinguish between the different needs of various people who all were undoubtedly autistic. Literally the reason autism is referred to as "autism spectrum disorder" nowadays is to acknowledge that autism underlying encompasses people at a variety of different places on a spectrum when it comes to their symptoms and how well they function.
You absolutely cannot tell whether someone meets the criteria for "something as serious as that" by reading an internet comment they made, and even if it were, your assessment does not remotely coincide with the actual diagnostic criteria for autism or how it's treated by mental health professionals. Saying shit like this to strangers online is spreading misinformation and is downright harmful.
Their healthcare professional made that determination by using the terminology they used.
One of the criteria for a disorder is "The consequences of which are clinically significant distress or disability" so if your (hypothetically you) autism amount doesn't get in the way of you waking up, going to work, not killing yourself, and meeting your needs, it's not a 'disorder', clinically at least. You may have issues that can be worked to overcome through other therapeutic means.
I think this is a good point. This thread exists to counter the only person who evaluated ThatMartinFellow. As such, the only reasonable advice from my original post should be "request a more thorough evaluation." There is a semi-regular support thread for 'low stakes' discussion about this topic but strangers on the Internet should never overrule your healthcare professionals. As I have not interacted professionally with Martin, I'm not giving a diagnosis, and I was not trying to diagnose them. Just clearing up what I saw as the miscommunication between them and their therapist.
This is not what the threshold for "clinically significant distress or disability" is for literally any disorder in the DSM, ASD or otherwise. It is entirely possible (common, even) for something to cause clinically significant distress or disability while the person in question is still capable of waking up, working, providing for themselves, and not killing themselves. This doesn't even pass the sniff test -- do you really think someone doesn't actually have an anxiety disorder unless they're unable to work or support themselves, for instance? You are simply wrong here, and it's to a degree that's insulting.
According to the WHO, “[a] mental disorder is characterized by a clinically significant disturbance in an individual’s cognition, emotional regulation, or behaviour”.
Clinical significance refers to whether a condition or treatment has a meaningful impact on one’s wellbeing—which is absolutely more broad than pure survival or ability to work.
I’m a layperson but I’ve undergone an evaluation myself and can say that the neuropsychologist indeed focused intently on impact to quality of life and functioning.
May I ask your background? From your language it sounds like you may be a clinician.
I had something similar happen last year. I started with a new therapist and they essentially stopped me mid sentence and diagnosed me with add and autism in our second session. It made me feel uncomfortable and I let them know that they had no right to give such a clear diagnosis as it was just their opinion and we hadn’t even had two sessions. I then cancelled with them and went for an actual medical diagnosis instead. This is still ongoing as there’s a huge waiting list.
Despite them potentially being correct, they crossed a line as far as I was concerned and I could no longer respect their advice or continue the sessions with them.
It doesn't sound like you had an exhaustive assessment that also looked to rule out other confounding issues. Adding that ICD-10 code might just be a way to help with referrals in the future if needed, or ensure your appointments continue to be approved.
It sounds like if you are on the spectrum per the diagnostic criteria, it is far on the high functioning side. That's good, because there are those who are completely dependent on care, or who struggle to such an extent they couldn't have gotten as far as you have without a diagnosis.
It's less important to focus on the diagnosis and more about your work with the psychiatrist and seeing what works and what doesn't with your challenges.
If you're thinking that doesn't seem quite right, it's the same for many physical disorders as well, especially those that are a diagnosis of exclusion like some autoimmune diseases. Focus on the care and treatment, and try new things until you see results.
Edit: also, ICD-10 codes, which are the codes that are put on your chart to help with billing and track the purpose of the visit, have both specific and general codes. Don't run with the "autism coded" descriptor without knowing for sure. Autism spectrum disorder is coded F84.0, but there are codes like F84.9 which indicate the presence of certain criteria without a specific diagnosis of ASD or other specific diagnosis under the category of PDD.
You're overthinking it.
What would it mean to you if your doctor said you were "officially diagnosed with ASD"? What would it mean if they said you don't have autism?
I am all but officially diagnosed with ASD. I'm mostly high-functioning/high-masking, though there are aspects of life that I struggle with. But it doesn't matter if the things I'm struggling with are due to autism or not, the important thing is that I can get help for it. For me, an official diagnosis wouldn't change anything. Of course, if insurance or some program you want to enrol in requires an official diagnosis, that's different, and you should bring that up specifically with your doctor.
If it's important to you to have the "autism" label, then just claim it. No one is going to accuse you of "faking autism", and if they do, they're probably not worth talking to anyway. Like, what's the benefit of faking autism?
And yet there are so many people who think this is just a thing that happens all the time. For attention, I guess? I do find it hilarious that those same people often come out with "everyone has that specific issue! I have that issue too and you don't see me labeling myself about it," when a) no they don't, and b) maybe you don't have to struggle with it either? Let yourself claim the label and thus be more comfortable taking steps to alleviate the discomfort! Or at least stfu and let other people do what they need to do to feel better. Professional diagnosticians make mistakes all the time, and a self dx harms literally no one, even if it ends up being incorrect.
I love hearing stories of when people tell their family, and they’re just “no that’s nonsense, you’re just a chip off the old block” because my reflex is always something like “yes grandad, I agree, it’s highly hereditary so maybe I got it from you?”
From my perspective, your psychiatrist said you have autism. That seems pretty clear-cut to me. Professional diagnosis for autism doesn't really get you access to any treatment options that you couldn't otherwise access, though, so ultimately it doesn't really matter. If you're autistic enough for a psychiatrist to write down that you're "autism coded," you're definitely autistic enough to seek out resources for autistic people and pursue therapy with professionals who are experienced with working with autistic people. There's not much more than that you'd get from a more clear-cut diagnosis anyway.
I do feel like, when it's discovered that the treatment developed for one mental health issue also works for other related mental health issues, there's a tendency to then diagnose that person with the mental health issue that the treatment was developed around. (I think this happens with trauma, for instance). Perhaps the frameworks developed for autism may be helpful for you to some extent, though that doesn't necessarily mean that you need to identify with the label. There's also the whole insurance billing mess that incentivizes certain diagnoses over others, if you're in the US. I think a second opinion would be helpful, especially if there's a way for them to not have your records sent to the second professional to avoid confirmation bias.
One thing I want to say is that, while it's not universal, some people with that diagnosis do not like the term 'high functioning' because for many, it's extremely well masked. That may mean that you hide when you're overwhelmed in such a way that it negatively impacts your health, social life, and more.
No matter what though, I hope you can explore this topic with your psychiatrist and/or other professionals depending on your wants and needs. Some aspects of that are often underestimated and can seriously harm people. It did for me, at least.
Good luck on your journey, I hope you can find the help you need no matter what.
And you very well may not realize you're hiding anything! People often seem to think masking is a strictly conscious activity, but that's usually not the case. It takes a lot of practice to unmask, and that practice can feel like "faking it" until you realize that the "performative behaviors" are helping you be more comfortable in your own skin. 20+ years of being conditioned to sit still and be quiet is a lot to get past.
It's not. An official diagnosis comes after several (at least 10) sessions filled up with tests, and even after that you need another psychiatry to “validate” the tests' results.
Kind of, an official diagnosis usually takes that but it can just take a doctor/professional writing it down as one.
But I agree this does not sound like the psychiatrist did a full dx and honestly seemed very dismissive of it.
I suspected having both ASD and ADHD and sought diagnosis within my country's public healthcare system, which means they apply strict criteria as misdiagnosis/mistreatment could create unnecessary expenses for the government. So this process is probably at the extreme end of things. It took around one year in total because they needed to rule out anything else that could manifest similarly (personality disorders, bipolar disorder, OCD etc.). Another reason it took so long: these conditions are present in childhood, so an important part of the diagnostic process was getting information about my childhood, for example interviewing my parents and asking me to dig up medical records and school report cards.
I know some people who went via the private route instead and that process was much faster, but still required several appointments. One session and one questionnaire is almost certainly not enough for an official diagnosis, which your psychiatrist seems to be aware of, given the very unprofessional wording "really really high functioning autism". I'm not sure how I feel about her attitude. If she is a mental health professional, she should speak using professional terminology and explain things as unambiguously as possible, which she clearly has not done here.
Back to my diagnosis, especially the part that surprised me: I went in thinking I absolutely have autism and may perhaps have ADHD on top of that. I came out with an ADHD-pi diagnosis (ADHD, primarily inattentive) and the medical team told me they believe the vast majority if not all of my symptoms and behaviours are actually due to ADHD. I ended up not pursuing the ASD diagnosis as it would have been a similarly long process and there are no real advantages to having it (besides knowing you have ASD, which is admittedly a great advantage to some).
I still believe I do have some form of high functioning autism, possibly not to such a degree that warrants a diagnosis, but I've also had many revelations observing my behaviour and understanding how it's related to or even directly caused by the ADHD. These conditions are not really straightforward or easy to understand, even for professionals, so for an undiagnosed individual there's bound to be some confusion and misunderstandings. ADHD manifests very differently depending on your personality and on the other hand, many other (treatable!) conditions may look like ADHD on the surface level.
If it bothers you and you'd like more clarity, I encourage you to seek it, ideally from someone who is actually serious and well informed on neurodiversity.
I think it's a bit difficult to understand what you are asking.
From what I can tell, you would like to know if you have an official autism diagnosis.
As far as I can imagine there are two reasons for that to matter:
Internal/identity: you would like to know for certain and/or you would not like to use an autism identity in your life (whether in meat- or cyberspace) unless it's for real.
External/as-part-of-a-system: for contact with other medical and health services. To gain access to different kinds of accommodations in different places and systems.
If you can figure out the reason for your "want to know", that might help.
Especially if you're looking for help to navigate the mental health system in your country it is essential to know what country that is.
But even if it's more for point 1, it might help, as cultures also differ wildly and you might even consider sharing specific places in cyberspace that you frequent to get help with those.
Its more so number one. I just want to know if I have it or not for personal reasons.
OK, thanks!
I sense that this is important to you so I would advise you to write your question (and your reasoning) down on a piece of paper that you bring with you to your next appointment. I think it is valuable to also bring a pen and some space to write down the answers.
If you manage to take out your paper and read your question to her, with a pen in hand ready to take notes she is more likely to understand the gravity of the situation and not just hand wave it away.
Depending on how long winded you are (I am veeery long winded, as you can see here) maybe cut your reasoning down to a couple of sentences, for example (And apologies if I have misunderstood you, this is only an example):
Based on my experience (as a patient/client) the psychiatrist will be eager to talk about your "need to know", or something else, more than give a clear answer so it can get hard to manage to stand your ground and actually get a good, clear answer. I don't believe this is out of malice but more so a lack of understanding (from their part) how much they assume just because they are so used to talk about this stuff.