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.