Oh boy, reading through this comment section is a hard pill to swallow.

I have always had memory problems and I can recall hardly anything that happened a year ago.

When meeting up with friends I will prepare stories to tell but after I've burned my fuel I become super passive, and I've always wondered how other people can talk so much more than I do, I guess I just always assumed they have more stories on standby. Now I realize other people can actually speak about whatever, on the fly.

Whenever I have to improvise, I either have to form a sentence in my head before I say it, or if I try to actively engage in conversation and have to respond quickly, dumb half-sentences will come out. Which is a shame because I have a lot to say about certain topics but I physically can't in the moment, and I always beat myself up about it later.

Programming for 10 hours is not a problem but I'm fried after a 2-hour meeting.

I drink a lot because it helps me loosen up. My dad passed in 2016 and I don't remember much about him but he was a heavy drinker aswell.

Today I learned I have autism. I should seek a therapist.

Just felt like typing this out.

In similar ways, I can definitely relate. I deliberately studied and practiced sarcasm and storytelling for several years before I got comfortable with it and it landed half-decently. And I still get locked up around certain kinds of people.

Therapy is definitely a good consideration. As is general research to help understand what it might mean in general. If you're able to in your area, definitely try and find a therapist who understands autism. Otherwise, from experience, it can be a real impediment.

It's a lot to handle and I hope you're doing well with it. Feel free to ask any questions you might have. I'd be glad to help however I can.

Congratulations on learning something about yourself and taking steps towards managing your condition.

> And some even responded in ways that don't make much sense at all. (One of my best, long-term friends responded with "well, you've always been a great friend to me!" when I texted him the diagnosis).

I think what they meant must have been something like

> I would not have guessed that someone who has always seemed as attentive to my feelings and comfort as you do is someone who has difficulty reading social cues or exercising cognitive empathy

it requires a few leaps in interpretation, but I think they must have meant to be saying something positive about some specific social skills of yours that they expect to be difficult for autistic people.

It kinda makes a little sense. But only a little. It's almost like saying

> it's okay!

as if you'd just apologized for something, which is definitely baffling (and a bit disappointing).

Yeah, it's a good enough friend that I deliberately tried to not interpret what was intended. In part because, as you say, it's a bit of a leap.

Instead, I chose to interpret that the news was surprising and perhaps a bit uncomfortable. And I know that when people are surprised with things like that, they can say things that don't quite make sense or reflect how they feel. So I just kind of left it at that.

But the noticing of it was more the impact that, on this end, it's another data point of not feeling understood. Especially when it isn't brought up again.

Misunderstanding social messaging is a symptom of ASD, so it's important to not assume insult when someone says something you don't understand.

Hi Ben,

I hope you don't find this inappropriate (apologies in advance if you do).

My son was diagnosed with ASD a couple of years back. More recently, it was suggested that he likely has ADHD too. Essentially, the school he'll be starting at next year wanted him to have a cognitive assessment and it came back with a gulf between the things he's good at (reason, logic etc - top 2%) and the things he's not so good at (working memory etc, bottom 7%). Nothing in between.

I had always suspected that I had ADHD, but it was dismissed by therapists who wanted to focus on SAD (very limited success). It felt a little self-involved, but like a lot of newish parents, this was the push I needed to ask for an assessment for myself. The specialist said it was clear as day and at 36yo Vyvanse was immediately (and remains) life changing :)

I'm getting to the question (sorry) - my GP, wife and my a few others suspect that I'm autistic too. Having done a few quick quizzes, it seems that they might be correct (explains a lot, TBH). I was told that there's limited benefit in being diagnosed as an adult though, so I've left it alone. I'm left wondering if that gels with yourself or anyone else that was diagnosed in adulthood? Have you found diagnosis to be beneficial? If it wasn't so expensive, I'd probably do it for curiosity's sake...

Thanks!!

There are two types of diagnoses: the kind where your psychologist tells you you have it and puts it on your chart, and the kind where you take the national test (at least in the US), which has a year-long wait list.

I think what most people mean when they say it's not worth getting diagnosed as an adult is the second type, because the only thing it really does is force schools to provide adequate care for students.

I recommend seeking the first type though; I was diagnosed at 30 and it was worth it just to know. I only slightly suspected it though, and the diagnosis is what put me on the path to finding the communities, research, etc., which is ultimately what I got out of it -- so YMMV.

EDIT: Oh and meds! There aren't autism meds, but autism is often linked with anxiety or ADHD, and those can be helped with meds. Diagnosis is a first step to that.

> the national test (at least in the US), which has a year-long wait list.

what is this?

I can find no evidence that this exists.

There is no precise test for autism.

My source is my psychologist, so I don't personally know more about it. But here are some resources I found that allude to it (though like most info on ASD, it focuses on children):

> A comprehensive evaluation requires a multidisciplinary team, including a psychologist, neurologist, psychiatrist, speech therapist, and other professionals who diagnose and treat children with ASD. The team members will conduct a thorough neurological assessment and in-depth cognitive and language testing.

National Institutes of Health (https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Educat...)

> ...a formal developmental evaluation may be needed...done by a trained specialist, such as a developmental pediatrician, child psychologist, speech-language pathologist, occupational therapist, or other specialist. The specialist may observe the child, give the child a structured test, ask the parents or caregivers questions, or ask them to fill out questionnaires. The results of this formal evaluation determines whether a child needs special treatments or early intervention services or both.

Centers for Disease Control and Prevention (https://www.cdc.gov/ncbddd/autism/screening.html)

Not at all an inappropriate question. And I'm always glad to talk about any of this stuff and hopefully help in any way that I can.

Side note: Vyvanse has been life-changing for me as well. There's a simultaneous grieving for what could have been all those years, with excitement about what's finally possible.

To your main question, I had the exact same question for years. And I see many people articulating the same sentiment, online and in person. In fact, several years before my diagnosis, I saw a far less-qualified therapist about a diagnosis. I firmly disagreed with her principles in how I should answer questions. In hindsight, my disagreement was correct. (As a basic example, if I was able to learn how to make eye contact - no matter how hard and extreme it was to teach myself, and how much effort it now takes - then that is not an issue/symptom in that therapists mind. I know now that is completely wrong, given how masking works, especially for adults.)

After that initial meeting, I suspected the diagnosis would come up negative (it did). And I was left to consider for several what would be the point in getting a diagnosis from someone far more qualified.

By the time I decided to actually seek out a far more qualified professional to do a far more thorough assessment, I was very clear on why a diagnosis was important: I needed to understand if I had multiple symptoms to address individually (irregular sleep, executive function issues, anxiety, social challenges, etc), or if that collection of symptoms would be better worked on if I understood that it may actually be one thing - autism - and should be approached as such.

So, for me, the utility was because I needed to know what I was working on, in order to work effectively on it. For example, executive function issues stemming from autism would be approached differently than "you just never learned how to prioritize and start things." Or, social/emotional issues stemming from autism are approached very differently (ie: I may start at more basic and fundamental places, and fill in very different knowledge gaps) than if I was neurotypical.

That said, I know of people who don't have official diagnoses, and they're okay with that. Some have fully adopted the diagnosis and researched how to approach it. Some haven't and have chosen to recognize that they're different. And both of these paths seemed to work for these people. For me, I would just much rather know.

Let me know if that helps or if it begets any other questions.

Thank you so much for your response and to the others that responded as well. I'm left thinking that I should take my interest as reason enough to seek a diagnosis.

Another poster commented on it, but I definitely thought of my ADHD diagnosis/treatment as panacea. I believe that's because Vyvanse has (amongst other things) largely put a lid on the anxiety that I've struggled with my whole life. I certainly share your mixed emotions with the late diagnosis and subsequent success with medication there. It's hard not to dwell on the past, but overwhelmingly, I'm enjoying my new life.

The eye contact one is interesting. I recall being yelled at a lot in childhood for not looking at people when I speak to them. As an adult, I find myself forcing it when I remember; it honestly makes me feel ill just typing this and thinking about eye contact though hahaha

Your rationale for working on things from an autism-first perspective makes a lot of sense. In fact, it's precisely the reason we got our son diagnosed at 3 - it changes how his speech therapist, physiotherapist, OT, etc treat his various challenges. Perhaps that's another reason for me to seek a diagnosis - it should be easier to better myself if I have some clarity around what's actually going on...

Thanks!!

The other 2 current replies are great and in-depth. I'd like to add a more shallow, kind if like a TL;DR.

(For reference, I got diagnosed mid 30s, wife idem.)

1) You need to find a proper therapist to assess if you have autism. Ideally someone specialised in such. Because otherwise, chance of misdiagnosis is too high.

2) Co-mobordities are common, ADHD and anxiety were given as examples in other reply. I had the latter diagnosis, and got Ritalin prescribed for symptoms of the former in past (I hated the ups and downs, and I could not afford Concerta back then. FWIW, I currently use Prozac, it works great for me, but does make me more oversharing but less edgy. There's multiple other options, I went to a psychiatrist specialized in autism.) If you already have another diagnosis do not assume it is a panacea. If you have ASD it is the root of your being, and all your other issues (see some examples at #3) more or less stem from it.

3) People go for a diagnosis because they are stuck in life for one reason or another (a trigger). Common triggers are work related (issues with coworkers, unemployment), social (divorce, lack of friends, drug abuse), or family diagnosis (children, cousins, etc).

4) Proper diagnosis is painful. Your entire life is basically reviewed with multiple professionals who have specific expertise on the field of autism. It takes a lot of time, energy, and probably money (I live in The Netherlands and it only cost me my 'own risk' of insurance). Try to prepare for it, I say this to warn if you are in a very stresssful situation in life.

5) There's a lot of bullshit about ASD on the internet, and self-diagnosed or misdiagnosed people. Via my diagnosis I met other people who had a proper diagnosis, and I learned so much about autism.

OK it ended up longer than I anticipated, kind of how I am IRL too, masks my shyness too.

Good luck!

Thank you for the explanation of your experiences, I appreciate your input! I definitely understand how your friends and family could have responded. It's good that you tried to inform them of their own misconceptions and opinions.

Of my own friends who are diagnosed, they have time and again pushed for me to also get a diagnosis but I'd heard it can be a quite expensive and drawn-out process (as you've stated). Can you elaborate on about how long or thorough this is? Every article I've seen doesn't really seem to go into any detail on this point.

Did you search out a professional explicitly for the purpose of being diagnosed? I hope I am not being too forward, I also would like to go through this process but I'm not quite sure where to begin. The friends of mine who are on the spectrum have been diagnosed when they were children and I assume or have read a diagnosis as an adult can be more difficult. I'm 32 so not too far off from the age you were diagnosed.

Thanks for any help you can provide and thanks again for participating in the conversation, it was great reading your response.

Why do people with autism inform everyone they know of their diagnosis when they get one? Every time I can remember someone telling me about a new diagnosis, it was for a terminal illness.

I'm going to assume there's no ill will or frustration in your comment.

To answer it directly and plainly, and from my experience only, the social challenges of autism are such a huge part. And so, sharing that with people I was closest to, gave me something to point to when things would get awkward or misunderstood. For example, it wasn't uncommon for people to not understand why I didn't see something the way they did. Under the lens of an autism diagnosis, it helped to explain that difference. And if I share that with you, the tension that arises next time will (hopefully) be lessened and better understood.

There's a great deal of confusion and feeling of being misunderstood that seems to be common with folks on the spectrum, and especially for myself. So to be able to put a name and understanding to that confusion gap is a massive relief. But there's a limit on that relief/understanding if I don't share that with you.

>For example, it wasn't uncommon for people to not understand why I didn't see something the way they did.

I may be extremely cynical in saying this, but I am imagining you disagreeing with someone, and them being upset by that. Then you tell them you have autism, which allows them to resolve the discomfort of being disagreed with... by allowing them to switch into smile-and-patronize mode.

Smiling and patronizing is an emotional state where you're not really listening to someone, while acting positive about the fact that they're talking. It's used on children to the endless frustration of smarter kids.

Also, it seems like you may have a number of notions as to how autistic people interact with others. I'm obviously not sure if you've actually had interactions like this, or if you anticipate for some reason that people would react to you in that way.

But it may be worth considering that the things you've posted here are very likely to be very far off from the norm. And if you've had consistent interactions that have predisposed you to feel the way it seems like you may, it's worth considering that you may just be interacting with someone with other personality traits in there that may not be autism-related.

But if you haven't had these kinds of interactions with people on the spectrum, I'd suggest to you that your preconceptions are very different from my experiences.

I'd agree that's an extremely cynical way of saying it.

I don't disclose it to people I'm not generally close with. And I have never disclosed it at the precise moment of disagreement. It's always been a separate conversation.

I have had plenty of disagreements with people who don't know I'm on the spectrum. And if I wish to not disclose that to them, then it's my responsibility to do my best to make sense of the interaction. I may do that alone, or I may do my best to ask more questions to try and understand what they're saying. Or I may speak to the symptom before asking for clarification; "I sometimes miss people's intent or subtext. Can you be more specific?"

Disclosing it to those that are closer to me provides context for future interactions that I'm not trying to be difficult and that I may genuinely not understand what's being presented. It's their choice how to adjust future interactions with me.

They don't, necessarily. Some people with autism will prefer to be "in the closet" so to speak.

I'm glad you added this. I know lots of people who haven't/won't tell any but the very closest people to them.

Friends/family/coworkers have told me about everything from COVID and malaria, to diagnosed social anxiety and autism, to various cancers, to a broken collarbone and a stuffed Achilles tendon. Social norms must differ.

Neurotypical people talk about their health issues all the time. The older they get, the more they talk about it.

I really appreciated reading this, and found it useful and insightful. Would you be willing to share some of your "autistic" behaviors which you successfully mask?

Thank you - this really helped me.