[psnatch]

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!!

[glacials]

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.

[alisonkisk]

> 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.

[glacials]

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)

[benwills]

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.

[psnatch]

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!!

[Fnoord]

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!