is there a point to an adult diagnosis?

For me, getting diagnosed as an adult was more about closure

tl;dr: My formalized autism diagnosis has been very valuable to me because it has guided me to an autism-specialized psychotherapist, who has then provided me with a wealth of understanding and therapeutic techniques that center around autistic behavioral traits.

I’m a 54yo male who was diagnosed with autism (mild) last year. I (and many people I know) have suspected that for a while, but I wanted to find out exactly where I stand on the spectrum. For my interests and needs, the diagnosis was very much worth it. I have gotten a lot of value out of it.

I went to a psychologist who specializes in autism testing for all age groups. Autism testing is all that she does, so she doesn’t do ongoing therapy with any clients. The diagnosis process involved a 4-hour session with an interview portion, and then a number of different computer-based tests (I believe there were 5). After reviewing all of that, the psychologist wrote up a 13-page document that had the details of my test results, a section on the types of behavior traits that I have which are likely due to my autism, guidelines for continued autism-centric psychotherapy, and even guidelines for non-autistic people on how to communicate with someone with autism. It is a very thorough writeup.

As someone else mentioned in this thread, I also wanted to do this for closure. I wanted to know for sure where I stand on the spectrum, and I got a lot of information about that. By learning the language that is used to describe autistic behavior traits, I have found that it is now a lot easier for me to communicate with others about how autism affects me.

The biggest benefit from being diagnosed with autism is that I was able to find a psychotherapist who specializes in doing cognitive behavior therapy with autistic people. Working with her has been very eye-opening. I have worked with about half a dozen therapists over the past 25 years, but I never felt like any of them ‘got me,’ and I never felt like I benefitted much from their therapy sessions.

With my new autism-centric therapist, I finally feel like I can talk to a professional who really understands what it’s like to be me, which is quite refreshing. This is important because I have learned that people with autism will often respond better to certain types of cognitive therapy, and worse with other types. Having a good diagnosis can help a therapist hone in on appropriate types of therapy that are more effective with autistic people.

She has helped me immensely with understanding things like how I respond to trauma situations (which can be amplified in an autistic person). She helps to bring clarity to my internal thought processes when I deal with stressful problems in my personal life. She regularly talks about scientific studies that show correlations between autism and other health-related issues, like nutrition and medication sensitivities. Apparently, due to the genetic makeup of many autistic people, there are certain medications that will perform differently in an autistic person than someone who is neurotypical. This is especially true with medications that affect neurotransmitters, like antidepressants or anti-anxiety meds.

Everyone is different, and any individual would have to weigh the pros and cons of getting a formalized autism diagnosis. I just wanted to offer up what I believe has been a very positive experience with getting diagnosed as an adult.

I was diagnosed at 40. It was life changing. No more guessing what was going on, and no more gaslighting from people telling me how to think or feel. I can't count how many times a doctor or mental health provider would tell me that I wasn't experiencing what I was experiencing. I've even had doctors imply that I was substance-seeking or creating drama for sympathy because I shouldn't be seeking medical care for what I was reporting, so they would purposefully deny medical treatment to prove a point. I have gone to the doctor with friends so they can see what it's like and talk to the doctors so that they wouldn't treat me like shit. I'm not kidding. The last time I went to the ER, I had my friend that's an ER doctor take me. Surprisingly, once I got the autism diagnosis in my charts, the doctors started treating me with compassion. It was truly surprising.

After diagnosis and learning about autism, my entire life started to make sense. I finally had a term for my difficulties that people couldn't seem to figure out. All those ER visits for ridiculous injuries and ailments made sense! I have gotten more out of YouTube channels ran by autistics than I have in 10 years of mental health services treating me as allistic. More importantly, I could develop a plan on how to adjust. No more tolerating over-stimulation because I'm supposed to. No more pushing myself beyond my physical limits because that's what's expected of me. No more having to mask all the time!! My life could be divided into before and after diagnosis.

I haven't used it for anything like disability or work accommodations. I have yet to come out at work, though I'm almost certain they at least have their suspicions. However, I've used it to learn about myself and what would be helpful. I also learned that the people I've been looking for weren't associated with a specific nationality, ethnicity, hobby, occupation, or movement. My people were those that had a similar nervous system. It's as if allistics and autistics are two different species with the same appearance, the world is tailored for the allistics, and we don't know who is who until we develop this insight. Interestingly, once I found out I was autistic, I realized that the vast majority of my long-term friends were autistic as well. I remember calling friends to tell them I was autistic. Most said they already figured that and told me they were autistic. Until then, I just thought they were cool, calm, smart, and unique people. They still are, but understanding that it is because our nervous systems work differently was insightful.

There were two major benefits specific to the autism assessment itself. One, I didn't wonder if I was autistic anymore. Once I started having my hunches and people telling me that I'm likely autistic, I would still doubt it. It's as if I thought, "Here I go again. Making up another excuse for all of these issues." The actual thorough evaluation put that obsessive thought pattern to rest. I had convincing confirmation that I am autistic. Two, the results of the evaluation were specific to me. Autism isn't one spectrum. It's a bunch of spectra, so every autistic person is autistic differently. Working with an autism therapist and using the results of the evaluation was helpful in tailoring my life to meet my neurological design. For example, I am terrible at identifying malicious intentions in others. It's just really hard for me to be aware that people will pretend to be caring and amazing just to take advantage of people (especially autistic people 😠), and the methods allistics use to identify people that do that don't function for me. So, we're working on a system to help identify that with the capacities of my neurological capacities.

In summary, the benefits have been life changing. The medical system treats me with more compassion. I treat myself with more compassion. I can work on developing social circles that are healthy. And I can make adjustments to my life to be happier. It's like I'm learning to live again, but this time, rather than with misguided and purposeful allistic gaslighting or blind trial-and-error, it's with helpful and healthy guidance, much of which is provided by the autistic community that are pioneering the path and some by helpful allistics that are compassionate.

I'm grateful for my adult diagnosis (at age 35) because all of a sudden things made sense. I wasn't being lazy - people liked to call me that, because on a good day with a topic that interests me I will outperform most people. The logical conclusion was if I can do it once, i can do it all the time, and when my performance is subpar it must be because I'm lazy.

The diagnosis has become my shield and armor. I'm not lazy, my brain just refuses to engage on things that do not interest me. There's no way I'll ever get economics, and it's not because I'm lazy.

It helped me be kind to myself and adjust my plans and choices to my nourology. I may be shitty at economics and in being tactful with people, but I'm a great softwaretester, because I do care about people and want to help avoid making people cranky with dumb mistakes in software. The helpless rage I get from a piece of malfunctioning software is something I want to minimize.

Instead of struggling I enjoy my work now, and having a diagnosis allows me to communicate to people what to expect. I can't read between the lines - if you want me to do A, tell me so. Don't mention to me that B and C need someone that needs doing, because I may or may not get you want me to do that - but I sure as hell won't get that you also want me to do A, even if it is a prerequisite.

I'm able to say that I work better with a dark, quiet place, so please don't seat me next to the person who has meetings all day. I can probably work without these accomodations, but I'll be miserable and my work quality will be poor.

Coming back to your question: you don't need a diagnosis per se. I know people that I suspect are autistic but they would probably feel worse knowing it. But what I think you should do is read up on autism like crazy. For your kid, but also for yourself. Read accounts from autistic people, look for autistic spaces. There's plenty of organizations that care for profit and not for actually helping autistic people.

What you will gain is insight into how autistics manage life, what helps them, and youecaneuse that knowledge to help your kid and maybe even find ways to improve your environment. Even if you feel well-adjusted, maybe understanding why something works for you and how youecan make it better can help.

The benefit in the diagnosis for me was understanding myself and the ability to adjust my environment to my needs. For me, the diagnosis is incredibly helpful, but for you and your unique situation, it may not. I heard from people in other places that an official diagnosis has negative legal effects on them. Go research, take away what you need, and once you digested the idea and feel you understand more about it ask yourself again if a diagnosis could benefit you.

You've lived so long without, a year or two probably won't make a difference. If anything, hopefully more doctors are aware of autism and able to successfully diagnose you.

First let me welcome you to the "hey wait that was autism!?" phase. It's a trip.

As this thread as a whole states, it depends on what value that diagnosis brings to your life. Weight against how much that diagnosis will cost you. Research autism for yourself and your kid, review your own history and talk with people who know you.

In my region of the US there is one licensed human doing adult diagnosis, on an 18 month waiting list for about $2k. He would also require a 4hr interview with at least one parent in addition to the 8hrs with me. At a time when my family was still angrily listing all the reasons my son's diagnosis was wrong. So my son has a diagnosis, i likely will never bother.

When i started asking close friends for thier opinion, most responded with "duh". I was not infact, as good at masking as i'd assumed. Though it's not an uncommon experiance to find a few people extremely attached to their own image of you. Those relationships tend to end poorly when you open up about your actual lived experiance. So be aware of that cost while you're exploring this. You'll likely be better for their absence but the process can still hurt. The end of one of my oldest and closes friendships resulted in me paying $600 for a full genome sequencing, followed by months of learning how to read the raw files from that. So i could understand the one genetic study thats been done on tactile defensiveness. Having the report put me in the 80th perentile for autism was kinda meh at that point, so i don't believe an offical diagnosis would do much for my piece of mind either. Finding the GABRB3 mutations identified in that tactile defensiveness study also in my genome though. Having that specific answer was worth the time and expense.

Like most people here, i'm a lot kinder to myself now that i have some understanding of how my brain proceses things. I let most of my masking fall away. And was shocked to discover most people don't go through life with every muscle in their body tensed up like they're constantly hearing nails on a chalk board.

I'm 34. I got tested earlier this year so I could better understand myself. Somebody quoted something at me that I'm not remembering properly but it was something like "it's better to be a normal zebra than a strange horse" and I'm happy knowing I'm a zebra.

On a "meta" level, the more adult diagnoses we have in the medical records around the world, the more data health services have to understand that a) diagnostics in children are full of holes, and b) yes hello ASD people don't evaporate at age 18

If you're doing well and don't need therapy or even accommodations at work, then I guess just be happy you're doing well! Diagnosis doesn't mean you automatically should be getting help and change everything around. You can use that information as purely informative, like, "oh, that's why I've been doing that". That's a part of why there is an autism pride movement: for some people, that's not even a handicap, it's a super power.

Now that you know however, maybe it'll be easier for you to relate to some challenges your kid faces and connect the dots and hopefully make it easier for him. I'm sure your kid would be happy to have a parent that can understand.

Diagnosis could be useful in being more confident that your kid has the same thing, but apart from that, yeah you're not missing out on much. I've found it's a touch easier to ask for things like flexible schedule at work with it, but I've earned those privileges at every job I've had well before I got diagnosed 🤷 I'm known to sometimes work to 5am because I'm stubborn on a problem but I deliver 3 days worth and then I'm dead the next day and everyone agrees it's worth it.

Im glad you've asked this, OP. Because I'm in my 40's and I have the same question. I have a beautiful and intelligent child, and my lovely wife keeps seeing her do things that she says are signs of ASD, and I keep having to say "No, that's normal, I do that all the time..."

The partner is thinking about getting evaluated after getting recently recommended. One of the more important factors for them is that they can potentially be prescribed medication that suits their needs better for their anxiety than the one they're already using.

It probably could be extended to other types of medication too.

First of all I'm sorry that you're struggling with this. As a parent, I'm sure it must be difficult to see so many things reflected in your kid, but in an entirely different context of autism.

A couple pointers:

This is rather semantic, but the modern understanding of autism is that it's a spectrum. Asperger's is no longer an official diagnosis, but using the word can clarify what type of autism you're dealing with. Autism comes in a myriad of forms.

I also want to say, I think an adult diagnosis can help in understanding yourself, and understanding your own relation to the world. It can re-contextualize your experiences you've had. And it can help you deal with current and future challenges. You may not need educational help, but many people who are diagnosed with anything like adhd or autism struggle with something in their lives, a struggle that mostly stems from being neuro-atypical. Educational, vocational or professional challenges are not the only things people with autism can struggle with. I struggle with human contact, intimacy, connection and black and white thinking, for example.

Lastly, and I know this may be hard to read. And please don't take this personally. This isn't your Kids fault. I only say this because it is something that happens sometimes. A parent learns about their own struggles, their own challenges, through their kid's diagnosis and care, and sometimes parents can't separate the kid from their own challenges anymore. This isn't necessarily directed at you, OP. But they need you right now, no matter how much you may be hurting yourself. Being diagnosed as a kid can be terrifying. My first question when I was diagnosed at 9 years old was 'Am I gonna die?'

I hope you have people to lean on. Truly do. You need to decide if you need a diagnosis for yourself. If that's gonna help you make life easier, understand yourself and your place in the world better. Maybe talk to people who went through that when they were older. I know some people who had a late diagnosis and even though it messed them up for a few days (I mean, you put your entire life in a different context, it's not nothing) it ultimately helped them.

Hope it helps. Wishing you and the kid the best. Take care.

I've wondered that myself. I don't have kids but after looking at all the symptoms a lot of them fit, and a couple of friends have told me they "just assumed I was on the spectrum" when I brought it up recently. I had no idea, but I don't see much use in getting diagnosed now I just turned 40...

If you are 100% sure, then there probably isn't much benefit. For me, part of the reason for adult diagnosis was to get rid of the imposter syndrome

Apologies for my intrusion. I saw this topic from the ALL listing on Lemmy.

How different would my childhood have been if I had been evaluated when I was younger?

Irrespective of a childhood evaluation or not, we are all the product of thousands of decisions we made and were made for us growing up. Its interesting to think about alternate realities that could have exists had specific events occurred that didn't or not occurred that did. In the end, we are a product of all these decisions and experiences. Were you evaluated when you were a child, you may have grown into an adult that didn't become the amazing person you are today.

However, one benefit of getting diagnosed yourself is that you'll have firsthand confirmation that the experiences your son is going to encounter may match or resemble your own when you were younger. You'll have context in understanding where he is and how he is experiencing the world because you yourself likely were the same. You could also give guidance with your years of experience as an adult which may help explain to him the world and his difficulties in processing it. In short, perhaps don't seek it for yourself and you're clearly managing well as a functional person in society, but perhaps do it for him to know you're offering valid guidance.

I'm in the same boat. When it comes to diagnosis I suppose it depends how secure you are. If you've made your peace with the behaviours, adapted and possess a healthy self awareness then you probably also have the right people around you. A diagnosis is just gonna confirm what you already know and the benefits are limited to advice about accessing educational resources and perhaps a network of fellows. Maybe it's better to focus your time, attention and resources on helping your kid if you're happy in your life. On the other hand, if money were no object I would seek a professional opinion. I don't see any downsides other than the cost.

Personally as someone who snuck through too I don't think I'd ever get a dx. I've had deep moments of closure and certainty and they did not come from medical settings. However these moments require you to be looking for the right things, having the knowledge to know what you're looking for and the perception to judge yourself and your past through a neutral, almost clinical, lens. My not-professional advice to some in your position would be just do a lot of research(you'll probably be doing this anyway), let it sit, and if after a while you don't feel like you have any more certainty, ask yourself again if you want to get a diagnosis. Just as a caveat I wanna write that this advice is not for anyone who is eligible to receive benefits that would improve their quality of life if they got a diagnosis. The field I work in is related enough that I feel compelled to say that.

Sorry if this seems stupid.

It's not stupid. It's where I was for a while (I'm in my 50s now) figuring a d/x would tell me what I probably already knew but would also carry a bit of a stigma with it. Like you, I'd learned to adapt, but the thing I didn't see for myself was how hard I'd been working to hide that there was anything to adapt to.

At my wife's urging, I sought an evaluation and in retrospect I'm very glad I did. The results came back mostly telling me things I already knew (I'm super-smart in specific ways, distinctly average in particular ways) but the thing I didn't see coming was that a d/x would put my marriage in the context of my Autism, and that means my wife gives me grace she didn't before when it comes to my hyperfocus and attention deficits, for when I need to leave social situations because I'm out of my social-energy budget, stuff like that.

Things that used to annoy or embarrass my wife (that when a social situation became too much for me I'd ghost, that I'd struggle in circumstances where unfairness feels intolerable, etc.) now show up to her as me responsibly doing self-care, or as me living my values as my identity- and instead of bending herself to fixing those broken parts of me, she understands that these are just me doing my best job of peopling in the face of how my brain works. Long story short, being understood in this light gets me better understood, I'll never regret it. Not feeling like I'm an imposter with broken parts that must be hidden is sooooo good.

After recognizing the value of this dynamic in my marriage (and in my relationships with my wife's friends) I made it a project to recreate it in my workplace- and it happens that as my co-workers re-contextualized my foibles and eccentricities into that light, it became a lot easier for me to ask the kinds of questions I've long not asked for fear of looking dumb- and they're more than happy to answer and so much has gotten so much easier. Not feeling like I have to mask is a great big relief.

Along the way, freeing myself up in the contexts of my marriage and in my career, I've found ways to be a better parent as well as be a husband and co-worker. It's as if masking doesn't work.

Of course, like any good denizen of the spectrum™, I've made unpacking my own neurodiversity into a special interest. It explains soooo much. (there's too much to pithily explain, I'll spare you the info dumping in this thread)

Perhaps non-intuitively, recognizing all the ways I've been living life the hard way (masking, avoiding social interactions I've been thirsty to participate in for fear of being too weird) brings quite a bit of grief with it- why did I do all that the hard way when it's easier not to? Processing all of that is quite a bit of work, but it's oh so liberating.

I'm perfectly comfortable having self-diagnosed. The diagnosis fits me like a glove, explains so much, and has reframed my entire life in a way that can now be (re)interpreted in a healthy way. My only regret is that I wasn't diagnosed much, much sooner. (I've only known for going on 2 years and I'm in my 50's.) I don't see a particular need, in my personal case, to get professionally diagnosed. However, if you're not comfortable self-diagnosing and you are on the spectrum then getting an official diagnosis really could be a life changing event.

I 100% agree with what @BeautifulMind said and it's what I would have written, except I'm not that skilled of a writer. :)

I got a diagnosis partly because I needed accomodations at work. Light sensitivity and sound sensitivity are a bitch in an auto dealer showroom.

How different would my childhood have been if I had been evaluated when I was younger?

I have the same question, and I'm working through it with my therapist. I'm not sure there will be an answer that makes everything "better", but it does help to realize that I have been this way my whole life, and that I can make my life easier now that I'm an adult in ways I couldn't as a child.

I haven't gotten an adult diagnosis yet, but my therapist and I discussed it because I had wondered what's the point now (I'm 43). The thing she said to me that clicked the most for me was that officially having the diagnosis/"label" would let me join groups that for autistic folks and have some camaraderie.

Only if you need documentation for accommodations or disability.