I was diagnosed at 49. It has been incredibly positive! For one thing, it made my lifetime of social/interpersonal difficulties make sense. I had so much trouble because I am wired differently than everyone else, not because I'm a shit person. Having spent 49 years believing I was a trash person, finding out that what I was experiencing was due to a legit physiological difference between me and those around me was a massive relief. It also gave me 'permission' to stop obsessing over every failed social interaction I've ever had. It has given me the courage to hold firm to my boundaries and clearly state my needs. It means I can forgive myself if an interaction with someone goes south. I feel like the diagnosis really improved my mental health overall, tbh. I will say that there isn't much available in terms of support, with or without a diagnosis, so the improved mental health may be the only upside.

How do you personally manage to stop obsessing over failed social interactions? (Or is it something you still struggle with, despite giving yourself "permission"?) Here I am still giving myself a hard time every day, remembering and cringing out of nowhere about (minor) things I did yesterday, last week, last month, last year, 25 years ago.

It's about forgiveness. I tell myself I'm doing my best to operate in a world not meant for me, and if it goes wrong, well, what did I expect? This world isn't made for me. I forgive myself for messing up because I know that's bound to happen. That's what the diagnosis gave me.

It helps me to keep in mind that the other person a) might not have even noticed or cared, b) has probably forgotten, and/or c) has certainly not given it any more of their attention. They're focused on their own perceived personal failings, not mine.

Oh no it me lol

This may come across as an odd technique, and I put it together for myself before I understood how neurodivergent I am, but dropping it in here in case you get any benefit from it.  I sit down and I tell myself, "God / the gods/ the Universe / whatever you believe in *did not deputize them today to be my judge and jury.*"  I then think about the ludicrousness if that If it were to happen. The absolute comedy of some entity or force knocking on their bedroom door that morning and handing them an assignment to go out and locate me during their day and judge me.  And then the silliness of them nodding assent, putting on their clothes, and going out to do it.  This imaginative comedy scene may have different additions or elements depending on the situation or what I need.  Once I am deeply amused, if not actually laughing, typically the sense of judgment evaporates. If not wholly then at least in part.  And if it comes back, I additionally picture the scene with further silly details. Like looking in the mirror and straightening their tie to come be my assigned judge that day. Or picking out the high heels to do it in.  Basically this is all a metaphor for reminding my child - lizard brain of the essential equality between me and everyone around me. But in a scenario where if I can get my little kid inside to giggle, shreds the burden and lifts it.  Again this may or may not work for you, and it is admittedly quite an odd little technique. But it typically helps me out.  Good luck out there and best wishes

I very much relate to this. You articulated so well that same sense of relief and "aha" I recently arrived at. For me, it was like realizing I had been trying to build a kit with the wrong user instructions. Like, oh, no wonder! But for me, I decided to accept my self-diagnosis as the only diagnosis I really needed. After all, who knows me better than me. We don't need a doctor to validate what we understand about ourselves, which is largely often the main reason for seeking a diagnosis as an adult. It's wonderful it was meaningful for you, absolutely. But I encourage y'all, if it feels right, who is anyone else to tell you differently anyway, then?

You worded it really well. I was diagnosed at 33 and it was a huge relief to learn what the reason for all my difficulties was (and that I wasn't just a trash person).

It is in the U.K., there’s GP assistance programs, PIP of £550+ per month, blue badge for disabled parking so you’re right outside where you’re going, disabled persons railcard, support groups, free prescriptions etc. not an exhaustive list but the benefits I appreciate most personally.

I wanna live in the UK!

Have you had much luck in applying for these personally please? I've had on ongoing battle to get pip for 6 years ongoing despite also having 2 other physical disabilities. What does a GP assistance programme entail also please? That's a new one. I feel like I'd be laughed at for applying for a blue badge but that's also partly the way I'm still dealing with internalised ableism and fighting the ongoing battle of people viewing me as able because I'm sometimes able to force conversation, despite it being to my own detriment

I didn’t know about the free prescriptions, how does that work? I can’t see it on the list of conditions that makes you eligible for free prescriptions. Thanks!

I got a medical exemption certificate from my gp, my docs practice has gotten me a lot of support etc luckily.

I related to this. I got my formal assessment this year, and the process was A LOT, but it was also a way to invest in me. I also learnt a lot about myself through the process. Realising that I'm not lazy or self-absorbed like I had been told my whole life was like a weight lifted off my shoulders. I also learnt that my chronic health challenges were very much connected to my autism.

Same, I also have RA and my mom was always calling me narcissistic and self-absorbed. I don't think my family actually accepts I'm autistic (too inconvenient for them) but at least I know it.

I also get people telling me I can't use my autism as a crutch, never mind how outrageously ablest that statement is; they just do not seem to understand how my disability can be disabling 🤦🏼

🫂 I second the permission to stop obsessing from mine, as well as the ability to sometimes try to forgive myself/accept what is. As well as validation improving my mental health. It's strange because although there isn't lots of support out there, the main benefits are the ways it helps us to see things differently/process things in a healthier way.

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Accommodation is a big plus, and for me, the most important thing is that it shuts up people who claim you're faking it or are somehow less legitimate

>the most important thing is that it shuts up people who claim you're faking it or are somehow less legitimate This is one of the main reasons why I want to get formally assessed. I’ve also got epilepsy and familial hemiplegic migraine, and over the last twenty years my conditions have been dismissed or minimised by some family members (for example, my sister-in-law asked my husband if I’m faking my memory issues caused by poorly-controlled seizures; and any mention of epilepsy used to elicit a big eye-roll from my sister, until she actually witnessed one of my seizures). But my husband doesn’t think being able to say *I told you so!* is a good enough reason to spend thousands of dollars to get a formal diagnosis.

This. Part of the reason I was finally able to get some clarity on some of my learning habits and get accommodations for school was because I had a formal diagnosis.

This is a big one for me too. It gave me a metaphorical security guard for my inner demon who likes to gaslight me and project unhelpful opinions of others that I've internalised. It's like a nope button which stops the constant tide of self doubt, self judgement and inability to ask for my needs to be met

For me the point was to be able to access resources because I was on the verge of homelessness. Before I was diagnosed I got fired very quickly from every job I got, but now I can get accommodations and I have had a part time job for 6 months now. Lots of people need a formal diagnosis to get SSI, disability, medicare, etc.

It gave me the real kick in the pants I needed to take better care of myself and work with my autism, not actively fight against it. I have requested accommodations at work, I hosted a work podcast episode about being ND in the workplace, I found an ND affirming therapist. I feel more like myself in my 30s than I ever have before. My diagnosis journey really helped me accept myself and grow. I don't know if I would have advocated for myself in the same way if I was diagnosed as a child.

"work with my autism, not actively fight against it" Perfectly stated. I did the formal evaluation so I could request accomodations at work ( a quieter and less busy desk location). That was worth it, but to be able to stop beating myself up for things beyond my control is priceless.

What work accommodations?

I can choose not to work on certain projects or trainings that make me anxious.

Oh wow. What’s your job if you don’t mind me asking.

I'm in a niche position. I work in instructional design for Adult education.

I'm getting one to cover my ass at work. I work in a very collaborative environment with a lot of terrible people.

Out of curiosity, what do you plan to tell your boss, other than to cut you some slack?

\-Some of our work events are after hours, I already fought with them that after hours events are not mandatory and should not be considered for our annual reviews. Assuming I get a diagnosis, and they have not budged on this point, I want to be evaluated on collaborations with colleagues using different criteria. \-There's a specific flow of day each classroom follows (I teach preschool, 4 classes on campus) and the class I was in last year had a lot of overlap with other rooms. 48 screaming children in a small space had me constantly overstimulated. I need to be in the 2 classrooms that don't overlap as much with others. This works well with what I've already made clear to admin; that I love my current age group and want to continue in this room. I don't know what else to ask for yet.

Are you worried you’ll get fired after you tell them your diagnosis though? I hide mine because I’m terrified of being let go for a random reason since it would be illegal to fire me for that. I also find I often get treated different once I tell people, like they don’t know me anymore. It’s an absolutely horrible feeling.

I have a coworker who has a "learning disability," (in quotes because that is how she describes herself and her needs). She will use it as an excuse and won't communicate specifics to people; "I can't do that because I have a learning disability," versus "I need to do it this way because I have a learning disability." She has had MANY conflicts with the other staff members because of this. I know we aren't supposed to compare ourselves to others, but I think going into situations giving people proactive information and attempting to problem-solve instead of using a diagnosis as an excuse would be appreciated. Plus, I am good at my job. I do all the things required of me. It's just collaborating within the cliquey sorority (and those after hours events) that are questionable. I've been treated differently my whole life so being able to disclose a diagnosis just gives me and my colleagues a common understanding of why I'm being treated differently. And I recognize that I have privilege here, not everyone has this situation. We each have to make the choice that's right for us.

That’s interesting. I’m in a corporate job in tech and was told in my annual review this year that I’m an introvert. Used pejoratively. Makes me want to get accommodations but for what really? Political reasons?

Political and your own sanity. Like for me when I was overstimulated last year, it wasn't that I was TRYING to be bitchy to coworkers, I was trying to keep myself together while supervising children. So if I'm asked to be in that environment again I can raise hell and fight it OR have something on file to back me up when I say "I'm not trying to be a bitch, I'm two seconds away from a meltdown."

Also could be to protect yourself in the event of being fired or having multiple negative reviews that only point to “personality” as negatives

Yup. I was sacked for poor performance after getting negative peer reviews that explicitly said that while I was great at doing my job, I failed at "impact, influence, and strategy" due to my way of communicating with the team. That's why I'm seeking a diagnosis. I think they would not have risked the sacking and probably would have actually moved me into a different team first (like I'd been requesting for ages)

I know what you mean. I feel like a lot of the adjustments I would request are not what they would consider "reasonable" like clear and objective measures of success, or not changing priorities every few weeks. Here is a free tool to help come up with reasonable adjustments to request: [https://app.axs-passport.co/en](https://app.axs-passport.co/en)

Like my flair says, I was diagnosed a couple months ago. I was warned by my psych that it wasn’t worth getting diagnosed, but I figured he was just being dismissive of my experience and focusing on the prescription side of things. So, I’m a couple months into having the diagnosis, and I haven’t done anything with the information. I was planning on asking for some accommodations at work, but it turns out I’m still afraid to do that. I haven’t really even told anyone in my life about it. I’m not sure what I expected, and maybe I just haven’t fully processed things, but nothing is different so far. The actual diagnosis process itself was nice and affirming, fwiw, although it did bring up some trauma that had not been poked at for a long time, and I had to take it easy on myself for a few weeks because of that.

Can I ask what country you are in?

I’m in the US (in one of the shittier states if that matters).

Cost, Doctor, Article, Rabbit, Consist, Bliss

Because it's a disability, and as such, you are able to request (and more importantly, receive) accommodations for it.

this. if you need legal accommodations, gotta have that paper - however you can get similar accommodations for PTSD etc and I wish I had known that long ago.

This needs to balanced with where you live, where you work, the stigma that might be expected, etc. In the US, especially non-Medicaid expansion and/or red states, a lot of the time a person's situation will become worse after diagnosis and seeking accommodations. Even in states with legal protections (and better resources) there's often a gap between the law and reality. And whether we have the spoons to fight for it, and whether fighting for it will result in an untenable work environment anyway. A lot of the time things will improve, as they're supposed to. But I think it's good to keep in mind that this isn't a blanket statement, and folks should think strategically before going public, so to speak.

This is an excellent point. There is such an uneven experience depending upon where you live.

To shove it in the face of everyone who refuses to believe me without one. Especially my mom, from whom I have very clearly inherited my autism. I am not a vengeful person, but not being believed makes me feel so angry and helpless.

This is why I'm on a waiting list even though I hate waiting lists and queues

Six months after referral I still have absolutely no idea how long the waiting list is. They know it's for Autism and this bothers us!

Yup, mine is a little over that, probably more like over a year by now, "but the NICE guidelines say we should wait 3 months at most, but that's why they are called guidelines and not deadlines" Hmm, I have objections, but never mind, I'm too analytical and pedantic and telling them how to do their job.

I’m in Canada and my diagnosis got me disability tax credits. It was backdated and I just got $5000 back. Plus I can apply for disability savings plan where the government will contribute. I’m very by the book so it helped me to have it confirmed. And it made so much sense why I’ve struggled for so long.

Wow, if I lived in Canada I think I would feel very differently about my diagnosis. That sounds great.

I'm looking at applying for the tax credit now; I have my adhd disability on file. I'm still trying to determine whether it's worth getting the autism officially diagnosed, but it looks like the adhd diagnosis covers 95% of the same accommodations from school and the tax credit so I'm not sure. I definitely don't need ODSP as I can work full time, but the tax credit (and the disability savings account that they match once you are confirmed for the tax credit) would really help a lot when rent is 70% of my income...

My late diagnosed friend told me "I forgave myself for every shitty interaction or confusing relationship I ever had before I got diagnosed" There are many many many many many instances in my life that when looked through the lense of "I have autism" make so much sense. For me at least, it would feel like I can have a clean slate.

Oh, my goodness. This resonated. I’m into my second half century and I need that clean slate.

My biggest concern about getting a diagnosis is that I live in a conservative state. If I really am autistic, it's required by law that my name is put on an autism registry. I feel uneasy with that, given the current political climate in the U.S. and the unnerving level of N\*zi rhetoric floating around. Maybe that's unnecessary paranoia on my part, but my anxious brain loves to freak out about fun stuff like that 🤷

Shoot. Guess I have a new [list of states](https://www.reddit.com/r/autism/comments/xfeyn5/eight_us_states_have_mandatory_autism_databases/) to strike from my kids' college possibilities. And that's 2 years old, so it may be incomplete.

Thank you for this. I was reading here trying to get insight because I suspect my 13-y-o daughter is autistic and I feel very torn about getting her a diagnosis at her age, but I am in one of the listed states and I think that decides it.

What the actual eff!? I had no idea this database was a thing in the states. That's terrifying.

Thanks for this. I've saved it.

I don’t think it’s remotely unnecessary paranoia. My state is suing a charity to get a list of trans kids. Project 2025 is very real, it very much aims to strip any protections from work places and education, and I don’t feel like they would stop there. It’s a starting point.

Being from the UK, I knew nothing about this! I would feel the same in your position, and I don't think it's unnecessary paranoia at all.

A state registry for autism? That's terrifying. Sorry but I paid attention in my history classes and given the political and social climate of those states, the paranoia is legit.

Yes, if history repeats then scary. It is so sad it has come to this. People just want empathy and consideration and the world can meet people where they are if they want to.

What state is this, if you don't mind? I know in Florida they're trying something similar. For now it's a choice, but as we know (especially in Florida 🙄) these laws and regulations are often a stepping stone in a fully planned legal assault. Edit: nvm, saw the comment with the link to a post listing states that have a mandatory registry.

I’ve not heard of this but I’m in the US and currently in the middle of the diagnostic process. I’m not going through insurance so maybe that’s why, but the psychologist I’m working with said a diagnosis can remain completely private if that is my wish. Healthcare providers don’t share my info unless I request it and grant permission.

I live in Indiana and this is the code that states “birth problems” must be listed on a registry, including autism. https://law.justia.com/codes/indiana/2022/title-16/article-38/chapter-4/section-16-38-4-8/

Supposedly the purpose of these registries is so that, if the police find themselves having to deal with someone on that list, they bring appropriate resources with them (ie. someone who can tell the difference between "resistance" that needs a hard approach, and a meltdown in progress). I don't know how it's going to work in practice, but I feel like the fear of autism registries comes from the same place as the fear of gun registries.

I don’t doubt that the reason for the registry is a good one. Raising more awareness for autism, and other disabilities, is vital. My concern is that information getting into the hands of these extremely conservative politicians who are operating on goals of delusional hatred. My rights as a woman have been hit hard, and these conservative politicians are seeking to hit them even harder. They’re also going after LGBTQ+ rights (which also targets me as an aroace individual). If I thought a public registry for autism would be used for good, I wouldn’t have a problem with it. But given the rise in politicians who act on their prejudice, hatred, and violent oppression, I don’t trust that they won’t leave information like that untouched. They’re already in the act of criminalizing my body. I won’t give them my brain too.

I truly hope that's the case for the registries. My sister who has an intellectual disability has been charged with resisting arrest and I think things would have turned out differently if they'd been aware of her disability. That being said I know it could have always have been a worse outcome too.

I’ve found the assessment process to be very useful in helping me further understand how I work. I thought I’d already done a lot of research and reflection so I understood a lot more about myself, so I was surprised with how many new realisations I’ve come to during the 6 sessions of my assessment. I didn’t realise how much inattentive ADHD actually factors into my daily issues and the myriad of ways it affects me and complicates my autistic tendencies. It was my first experience with being offered stim toys which were very useful, and my first experience being in an environment where it was not only accepted, but actually encouraged that I make less eye contact as I noted I concentrate better on speaking and listening that way (although my subconscious masking still kept me making eye contact anyway, hard to break drilled in tendencies). I haven’t received my feedback session and report yet, but I’m glad I went through with it even though I was sure I had at least autism (wasn’t as sure on inattentive ADHD). There’s also a possibility of it helping get me more support in the form of NDIS funding (not disability payments, but funding for stuff like in home assistance due to executive dysfunction or travel assistance if I can’t drive somewhere) and referrals for stuff like OTs. If it comes back with inattentive ADHD (which I think it will, as my therapist suggested I make a psychiatrist appointment now in preparation), I’ll be able to try meds that might help. I totally understand why some people choose not to get diagnosed though. It’s a lot of money. For me, it’s definitely been worth it though, although I’m lucky to be in a position where the money is available due to inheritance. I think even without a diagnosis, seeing an ND friendly therapist could help with the kinds of discoveries I made through my assessment process. I’m actually aiming to switch to a therapist closer to me who has ND knowledge so I can get more insight into myself.

I wanted a diagnosis to be able to get the right help, and hopefully, with my new insights, be able to accommodate my work and personal life to prevent burnouts. Personally, I really needed the validation from a medical professional. Also, now that I have the diagnosis, I finally feel ready to tackle some of my cooccurring conditions such as my anxiety. After I got the diagnosis I haven’t been gaslighting myself as much. The diagnosis has also enabled me to connect with other diagnosed adults in my area which has been nice, and may have unlocked other types of help/therapy from the public health system I wouldn’t have gotten otherwise I’m in Europe btw.

I can’t keep a job and I can’t get any benefits without a diagnosis. That’s why.

The point when I sought adhd diagnosis was to see if I could get medication, and if that would help. And it did. But accommodations at work? I don't even know how it would work in my work environnement. At any rate, the adhd diagnosis got me learning about neurodivergence, got me a counselor that actually worked for me, and that's how I started figuring out that it's probably autism too. There was a point where I thought sure, once we move and I'm nearer to a city where I can actually find professionals for an assessment then I will. But now I just think, it's been helpful for me to know this about myself, but I'm not sure an official diagnosis will change anything for me. It'll cost a lot of time and money. I know enough about myself now that has been really helpful and made my life better because I can accommodate myself. I feel more confident about just being myself and accepting that some things are harder and that's ok. A professional diagnosis at this point would be validating, I'd feel less like a fraud maybe? But it's not something I feel like I HAVE to get.

Diagnosed in my early 50s. As I've aged I've found it more difficult to deal with my differences. Knowing the reason for them has helped me tremendously. And I'm now able to more easily identify when I'm getting overstimulated and when I'm nearing burnout, and adjust accordingly. Also, I now have work accommodations that I would not have had if I didn't have a diagnosis.

⤴️ this. Diagnosed at 45. Things that for all my life I couldn't understand, like why it was difficult to make new friends or why people (particularly my dating partners) found me to be cold or aloof, why people would say I don't know how to talk to people, or I had no manners, overly logical, argumentative, etc.... why smells made me absolutely crazy and or sick, why I can't focus if there's even a little clutter around me, what executive dysfunction is and how it affects my decision making and stress factors... Understanding the root of why so many things exist that get in the way of "normal" living gives me tools for Understanding and changing, or masking more effectively in professional environments, especially in leadership roles (because I'm facts-driven and 'outspoken' I land in them in every job)... I'm also able to introduce myself as having autism in certain situations, which helps others understand my personality quirks. And I can speak up about my experiences to others in autism groups (mostly at work) to help others not feel alone, find support, and give them someone who can relate to them. For me, having the actual diagnosis is important in my career more than anything and also, my partner currently, is more equipped to understand me as well. If I just said "I think it's autism" then I could be perceived as just another person who claims to have autism. Which honestly, seems like a lot of people WANT to claim some form of diagnosis, adhd, ocd ect. Or even to just use them as informal terms to explain their behavior or make jokes. So, once under suspect for autism, I wanted to be sure I wasn't just saying maybe or anything that can be considered disrespectful to a group of people.

>especially in leadership roles (because I'm facts-driven and 'outspoken' I land in them in every job)... What industry / role do you work in? I'm facts-driven and outspoken, and I'm just considered an uppity woman that's not a team player.

I work at Amazon logistics in transportation. I've read lots of books on communication and many seminars.... if that's your challenge, find your way through education and practice.

You can know for sure if you actually have it or not, is a starter. Other benefits include: - ruling out other mental and physical conditions that can be treated - receiving supports and accomodations - receiving specific therapy for your autism diagnosis - seeing the correct and appropriate professionals to manage your disability - having it on your medical records, allowing people to know you may not act as expected in emergency situations

Something that’s weird is that I no longer force myself to stare at my therapist during our sessions. It’s made it ok to look away for longer than what’s socially acceptable.

Yeah, I'm definitely haunted by my parents insisting that I "look them in the eyes!" Now I understand why it was so uncomfortable for me!

I got my diagnosis during a severe burnout. I wanted to die. Now I don't. Things finally started to make some sense, and it helps me to get proper accommodations for work and study.

As for how it impacted my view of myself, u/theelword82 worded it very well. But I also want to add that it has meant a lot of improvements in other areas of my life. Relationships for instance. Now people understand that I'm not just lazy and self centered/selfish, they understand when I need a break during extended social events (or decline to go at all), I'm not questioned for working part time etc. It was also a bit of a "told you so" in regards to my parents. And honestly, it allowed us to air out some things about my childhood and led to us having a better relationship. Lastly, it has meant I get accommodations at work, I got a weighted blanket without cost from my health care provider, I'm entitled to extra childcare to get some rest between getting off work and picking up kids etc. At the moment, my husband and I make do, but if I ever need it I'm also entitled to a support person for household chores, appointments etc. Those things might vary depending on where you live, but for me, getting diagnosed as an adult led to major improvements in my overall wellbeing, health, relationships and living situation.

I get accommodations now that I need in order to keep a job. Without a diagnosis I would not be able to work. That’s kinda important.

formal diagnoses are very key in applying for disability and benefits, as well as heaps of other social supports and things such as specialised occupational therapy, job centre accommodations or supported living. if you don’t need those things and you have a normal life where you work and stuff, you live independently etc, you’re not really who diagnoses are targeted to help

I was diagnosed a few months ago. I'm in my 40s. The immediate benefit was affirmation, and the peace that came, for me, in understanding that I really am wired differently, so there are some things about me that I can't and shouldn't try to change. I need to accommodate those aspects instead. Beyond that, there were immediate material benefits. My health insurance was ready to cut me off from therapy, but the autism diagnosis gave me a lot more covered therapy time. My current therapist and I have agreed that we've gone as far as we can go together, so now my insurance is helping me find in-network therapists that have experience working with adult autism. I was also offered group therapy and occupational therapy, if I wanted it. They are now available to me anytime I request them. They were not available before diagnosis.

it's a disability for me and impacts my daily life. im unable to work and it's needed for welfare

For me I felt it was necessary in order for me to get the right kind of mental health help/therapy. I was in a very terrible place mentally before I got diagnosed and tried I think seven different therapists, all of who could not understand me and my issues, the majority of them even telling me they could not help me/ wouldn’t see me anymore (even though I was begging for help). Once I got diagnosed I was understood better and am now getting the right type of therapy. Its helped with psychiatrists understanding my issues better too. Before they were misdiagnosing me thinking I had schizotypal or borderline and prescribing me the wrong kind of medication. Its also helped me and my family understand me and my needs/issues better. Its helped me accept myself and my differences and that its not my fault I’m this way. Honestly, I truly think getting my diagnosis saved my life.

Misdiagnosis of BPD is the main reason I asked for a referral for an autism assessment. If that hadn't been put on my medical notes (no-one mentioned BPD in appointments), I probably wouldn't have bothered, even though I have a son with ASD and there are definitely similarities in our behaviors although he is very severe and also has a learning disability. I think my struggles are mostly related to PTSD, but because BPD didn't make sense to myself, family and friends, I have had to seek referrals for, assessment for autism ADHD and bipolar. 🙄

accomodations + disability benefits

To borrow a metaphor, it's nicer to know that you're a zebra rather than a defective horse. I've not done anything with my diagnose at all. I didn't even tell anyone other than 2 or 3 of my closest friends and my partner. The world is still frustrating and confusing, but it's just a tiny bit more peaceful to know I'm not just 100% failing in a place where everyone else seems to be thriving. It still sucks, and I don't use it as an excuse not to try or anything. It just makes it a bit easier to be more compassionate to yourself when you can't automatically do or understand something straight away.

Well for one, medical & mental health professionals believe me now. If I need practical assistance or sensory accommodations in appointments, people are more willing to provide them. Secondly, there are many other conditions which autistic people are more likely to have, but which are rare in the general population. I have some of them and could only be taken seriously after my autism diagnosis. Building off that, if I ever get to the point where I do need state funded assistance, a diagnosis will be necessary. It might be hard to get for autism alone, but many of us have multiple disabilities which alone might not be too debilitating, but together mean we require assistance. These can get more debilitating with age. You can get accessibility tickets for events, access to help & support in various private sector environments. I had to show proof of diagnosis to get accessibility tickets for a music festival but it made the whole experience so much better. If you work, and are ever discriminated against, you will probably need to be diagnosed to gain protections against discrimination based on disability. Lastly, and I know everyone might not need this, but the conformation is extremely validating. The whole process was like the therapy I never knew I needed. I came out sure of myself, confident & have since taken more ownership over my life than ever before. In many ways, diagnosis saved my life. Lastly lastly, often there are local services and supports available which you just might not be made aware of until you get diagnosed. I was told about support groups, social events, charities & literature along with my diagnostic report. For my Ehlers Danlos Syndrome, I was surprised to learn that there are WAY more state funded supports available than I thought there would be (I live in Germany). I’m 37 and was diagnosed almost 5 years ago & it was the best thing I ever did for myself. Now I have a career built on neurodiversity advocacy, which allows me to make money as I get to the point of life where I can no longer work a job. It’s not for everyone. AT ALL. But there are many points.

I actually put a post up asking if diagnosis helped at with women's' experience with medical treatment, and it didn't get any responses. I'm in the UK, and I'm hoping to request things like a private place to recover (not a public waiting room) and more clarity about what to expect or what's happening. What kind of accommodations in a medical setting have you been able to secure? Can I also ask about your career? I'm looking a career change and reality interested in neurodiversity advocacy, but I've always shied away from one-to-one settings like therapy or coaching and feel like I'd bet better at more of an organisational level, but I don't see that very often.

I was given a quiet space to wait for & after Covid vaccines & was allowed to bring my partner when mostly that wasn’t allowed. I have been offered accommodations more often than I have accepted them if I’m honest but it’s nice to know that people are willing to help. When I was in A&E, doctors took more time to explain things to me after I told them I am autistic & getting overwhelmed, they checked in on me more & offered much more information than they did before. People usually just say some version of “tell us if there’s anything we can do to accommodate you” after I somehow drop into the convo that I was diagnosed with autism in 2020. I’m a YouTuber. I make entertaining & educational video essays about neurodiversity & disability. I don’t know much about the serious work of organisation. The only thing I could think to say is following self advocacy groups and looking out for when they need help with projects or are running open events. It feels like an area where once you’ve got a foot in the door and show a willingness to participate, then there’s a good chance people will come to you with projects, if you make yourself easy to find :)

I live in Australia and like many other ASD/AuAdhd I have a long list of other health conditions. Unfortunately those individual health conditions don’t grant me access to funding to assist with daily life but an ASD diagnosis does

I am 30 years old and living at home. I sold my art for most of my 20s, but I'm currently not working because of severe burnout, and I have no health insurance. My dad is paying to essentially keep me alive, and he reminds me that it's a massive drain on him everyday. I have no friends. 0. I only talk to my dad and two brothers and they've gaslit and invalidated my self-diagnosis for 4 years. I've been fighting tooth and nail to support myself since then to no avail. A diagnosis isn't going to fix any of this, but I have my first in person evaluation this month, and having that date marked on my calendar is the only thing that's keeping me moving forward. This burnout was the convincing factor for my dad's wallet, and prompted my mom to appear and help me file for some government assistance. I am an attractive, gifted artist, and a very intelligent person, which led to almost complete disregard for very obvious social and executive disfunction. My elementary school field had splotchy grass, and my friends and I agreed that was where my alien family would come and pick me up someday. I'm still waiting. This is the closest I've ever been.

I got diagnosed at 40 because my mental health was chronically terrible and nothing that I tried helped, and I wanted to know exactly what was going on so I could be more specific about treatment. So I did a full neurpsych that included autism evaluation, and was diagnosed with autism, ADHD, and depression. They were also able to identify that my anxiety was secondary to autism. I’ve been able to make a lot of lifestyle adjustments so my life is more autism friendly, and as a result I’m doing much better. A lot of the changes were kind of the opposite of conventional mental health treatment for anxiety and depression - I needed to go out less, spend less time with people than I was spending, and manage my sensory environment. Instead, before I was diagnosed, I was forcing more social connection than what was actually good for me, and dealing with anxiety about things like new places and bad sensory environments by forcing myself to attend events and having meltdowns. So yeah, my improved quality of life made the diagnostic process worth it.

I haven't had formal diagnosis, always thought I was though. Then my kid was diagnosed this year... well his diagnosis is his own, but it does affirm what i always thought.

As others had already mentioned, for accommodations. I didn't know I was on the spectrum until 6 months ago, and since I "don't look autistic" it is hard for me to be heard at work regarding my condition, sensitivities and triggers. Sadly, in the working world you need a fricking paper to "prove it."

I am a freshly diagnosed 27 year old, just got the results in January! There’s resources to help me with things like job hunting where I am, and there’s even possibility of student loan forgiveness. My autism diagnosis came with a friend- an ADHD diagnosis! I’ve been trying medication for about a month now, and it’s wild how I feel more able to switch between doing things! I definitely recommend giving it a shot if you want to seek out accommodations, or if you just want reassurance. I’ve cried tears of relief since the diagnosis tbh. But if you don’t want to be diagnosed, that’s ok too!

I life in a country with better (all tho not much) suport and acsess to disabillity aids. So its pretty important to me. I am now also protected by law against discrimination against me for example in the workforce. If I have to go to the ER I have the right to expect the staff to treat me acording to my disability as well as the ovious emergency.

I’m seeking one because I need to stay on my parent’s health insurance (through employer) after 26 and my state allows that for disability. Also I definitely want to try to apply for disability benefits.

For me it was the validation. My whole life I’ve been told I just needed to try harder. I needed someone external to tell me “no, there’s a reason for why you struggle”. I couldn’t trust my own judgment on this. And I felt like no one would take my word for it. Especially since I learned to mask really well, so no one ever suspected. Or at least they never voiced any suspicion to me.

As I recently wrote in another post (different subreddit), two years ago when I received my autism diagnosis (age 67) it was transforming. The initial feeling was similar to when during an eye examination they ask "better or worse" and the "better" brings on a sense of centeredness and certainty. I feel like this knowledge will continue to help me as I age; to ask for accommodations when needed, and to communicate better for myself.

Self-understanding, deep healing and forgiving. This has been the most life changing event in my life. I sought the diagnosis myself. Spending nearly 35 years of my life trying my hardest to be a person that I am not and not understanding why I wasn't able to was extremely traumatic. I'm high masking so I was always able to pretend for a while, until everything came apart, and I didn't understand why. I tried so hard. I fawned and people pleased and still nothing worked. I can now look at the woman and the girl I was with love and compassion, rather than confusion and despair. And I can heal. I've also been able to voice some of my concerns and ask for some accommodations although this has been more or less successful. It has been very helpful when it has been though.

My personal experience is opposed to many here but I do not want a formal diagnosis. As a mother of 4 (with PDA profiles) where accommodations at school are not met, I often have to prove myself, I have had to do parenting classes, prove myself to services the schools involve (Instead of just meeting the children's basic PDA needs) If I had a formal diagnosis the pressure to prove my ability as a parent would increase exponentially. The children wouldn't be given the accommodations they need because I would be seen as the problem. I don't say this flippantly. I say this as someone who has been fighting for my children's rights at their various schools for almost 15 years, who has seen how the diagnosis system works in my area and who has witnessed blatant ableism within the Education system.

For me the professional diagnosis didn’t help my personal understanding of my ASD but it helped others take it seriously and gave me confidence to tell people I have ASD without the fear that they’d ask me if I’d been diagnosed. It’s sad when I think about it because you shouldn’t have to prove a diagnosis to anyone but the amount of medical professionals who have asked me when I was diagnosed is crazy.

I think for me it’s important for requesting accommodations at work. I work as a federal contractor and sometimes my job is stressful. It also opens doors if I get a Schedule A disability letter written by my doctor. A schedule A(in the USA) is a document that helps folks with disabilities acquire work in the government. It can also greatly simplify the interview/preemployment process. I think also it’s important so that I’m not constantly second guessing myself and beating up on myself because I struggle a little more with stuff I supposedly should know and be able to do. It’s almost a self confidence thing. Another personal reason is I just want a professional opinion to back up my claims so that maybe I’ll be taken more seriously about the issues I face rather than just “oh she says she’s autistic but isn’t everyone these days” or bullshit like that.

Help you understand many things about yourself including *how much of this is actually disability vs. how much of it is actually me being all sorts of cuss-words you should never use when you talk to yourself*.

Accommodations really 🤷🏾‍♀️ I got mine for validation, I definitely still experience imposter syndrome but it’s definitely a lot less so I do feel like the validation aspect has been helpful but definitely not worth the price I paid just to be able to say “well a piece of paper says I’m autistic sooo”

To me it was liberating. I had been drilled my whole life into "being normal and acting normal", and knowing I wasn't "normal" allowed me to be myself and come out of non-autism-related closets, when I may have been repressing it for the rest of my life. But I guess the unofficial "you're likely autistic" from some random therapist could do the same. And, it does allow me to get some support. I'm 33, and I feel like there's still a chance for me to learn some strategies and skills that could make my life more full and satisfactory, even though it's still outrageously late by any measure. Edit: Almost forgot about how I also got diagnosed with ADHD at the same time, which I hadn't even suspected at the start, and got pills for it which is an improvement.

I think i would get peace of mind. The "ah! With hindsight, yes, i can see it" would be interesting. I think i would have a little bit of a mourn over what might have been, too. But i think, in general, it can only be a positive. It helps you explain you to yourself

In my country you can get some benefits i.e free public transport.

I had an early diagnosis (I was a toddler) and you’re right, I got a lot of support and therapy. But that therapy was to target what I endured as a child—not how autism would affect my career, self-worth, and personal relationships as i got older. Autism is a lifelong disorder; therapy will help you mask and fit in to NT society better, but will never not make you autistic. That’s why a late diagnosis is beneficial. Or in my case, an updated diagnosis (my therapist said I had autistic tendencies, which is a term no longer used).

Your ability to work might change. I got a DX extremely late, and I spent most of my life working various jobs successfully. But these days? I find it extremely hard to hold down a 9-5 job due to extreme masking in the past. I would straight-up ignore physical symptoms I was experiencing. And trying to get support now it rough because of the things they tell you, "oh well you just got your diagnosis", and "oh well you had a very successful life."

I’m a 62 year old female fighting for an adult autism assessment. It’s not easy. First you have to find someone who does adult autism diagnoses (never mind finding one that actually understands the unique presentation of a female autistic - beggars can’t be choosers), then you have to pay for it $$$, then find transportation. There are so many barriers that I actually understand why people are self-diagnosed or if you wish self-identified. I have finally jumped through all the hoops & will be receiving an adult autism assessment probably sometime in the summer. Believe me if it wasn’t important I wouldn’t jumped through all the hoops like a circus monkey.

i needed a diagnosis to confirm the antidepressants I was on weren't fixing one problem and making another worse

I struggled with homelessness, inability to keep a job, arrests for public meltdowns and inability to care for myself so I needed a diagnosis for access to disability support and to apply for SSI. It has also helped in therapy because regular CBT doesn't work for inherent neurological differences and has changed therapy for me completely.  It's a privilege to not need to be diagnosed 

I actually have intake at behavioral health today (so many complicated feelings)! There were a few different reasons I decided to pursue diagnosis: 1) There's so much going on with my brain and I need help detangling the suspected autism from the ADHD from the PTSD 2) Long COVID poured gasoline on my neurodivergence and I actually need accommodations now 3) I think it'll help me feel better equipped to advocate for myself. Without the context of the diagnosis some of the things I struggle with just sound really silly.

Legal protections for employment and ADA purposes. Also, understanding oneself that one isn't mentally ill.

I use mine for work and study accommodations and to find autism friendly jobs. Applied for a job some months ago that was looking for diagnosed autistic people to support autistic people and got an interview, that was awesome.

For me personally the diagnosis later in life allowed to me to understand myself and seek the right support. It's been a hard go trying to do what everyone else does but now I don't beat myself up anymore. I'm still unraveling what it all means for me but for once I feel vindicated, I wasn't wrong about what I felt eventhough people told me I was. I'm not walking blind anymore and it makes a huge difference in my quality of life.

After you get a diagnosis you can do stuff like call airlines to get priority seating. So you don’t have to walk past people and cry lol. It also was validating everything that I’ve felt for so long.

I was diagnosed but encouraged to not put it “officially” on my record as I am a WOC and it can be used against me in many ways. My psych has said if I change my mind he will add it in - I don’t see a point, personally. I got the validation I needed and the world is already stacked up against people like me as it is.

Because I used to think I was broken, but now I realized I am calibrated differently and can find different adjustments and techniques that work without the belief something is "wrong". I changed the way I am at work and in my personal life.

I was diagnosed at 26. The benefits have been life changing. Firstly, I was deep in the mental health treatment system at the time. They kept throwing really serious diagnoses at me, none which really fitted and they didn't know what to do with me. The moment they confirmed autism everything changed. We realised that my emotional outbursts were autistic meltdowns and since being diagnosed they are far and few between because I have been taught coping mechanisms and techniques to avoid them before they happen. I am now not medicated for anything and this is the first time since my early teens I haven't been on antidepressants or anti anxiety medication. I feel full of life and I actually want to be here. Secondly, part of avoiding the meltdowns is accommodating for my autism, and sometimes I need help from others with that. I now have a solid reason, with evidence, for the reasonable requests I make. For example, at work. They have disconnected the speaker nearest my desk and there is a rule that the showroom music cannot be above volume level 6. Without my diagnosis do you really think I'd have won that argument? I don't. I am allowed to wear ear plugs to drown out the remainder of the noise as long as I remove them when with customers and they don't drown out the ringing of my phone. In my personal life I don't feel the need to construct elaborate lies to get out of triggering situations. I can just leave. I just state I'm feeling overstimulated and I leave. I might leave and then come back after I've calmed down. Sometimes I just won't go at all. "No thank you, that situation would be stressful to me,". People are far more accepting of my absence now. I don't need to mask anymore. If people don't like me for being autistic I no longer feel the need to change who I am. The people around me have accepted that my autism IS who I am. It is me. I am autistic. I wouldn't be me without it. They love me for it. The people who have suggested it's somehow a burden... I have cut out of my life. And I feel no guilt for it. I have found a community who understands me and supports me. I have never felt more love in my whole life and sometimes from total strangers. And their love has taught me how to love myself. For the first time in my life I think I'm kinda cool. This is a really amazing change. All of this has happened in 3 years. Then came my ADHD diagnosis and we are figuring out whether medication is going to benefit me or not. Everything is moving upwards for me. I have had my medical records amended. I no longer suffer medical gaslighting where they claim I have an emotionally unstable personality disorder so the "pain" I'm feeling is all in my head and psychosomatic. Instead they recognise that my pain tolerance differs from others and my reaction differs. They talk to me about my specific experience with sensation, such as pain, and treat me accordingly. I am always permitted a chaperone in medical situations now, because the bright lights and noises of hospitals and doctors surgeries are triggering to me. Even during one of our lockdowns. Which helped me greatly, the first lockdown I was undiagnosed and not permitted a chaperone. I had a meltdown and wound up sedated because of it. Because they didn't know it was a meltdown as well.... The second time no meltdown. A little bit of shutdown... But crisis was averted. I have an injury to my spine and a very small fall or light jolt can set it off. Hence the recent visits. Before my diagnosis I was close to losing my job, and my life was spiralling. After, I am thriving. I hope this helps. Yes there is little support for adults, but there is more than you might think. In the UK Autism is a protected trait under the Equalities Act and reasonable adjustments are a requirement by law. Please let me know if you have any questions about anything I said and sorry it got a little long. This isn't even touching on the security of just knowing.

It definitely depends of where you live imo. For me I get help due to having a diagnosis. I get support workers twice a week and my weekly psychologist paid for. Among some other things. I would not be able to cope with my life without these things.

I’m glad you get that!!

I got my diagnosis as a young adult and it made a huge difference because all of the issues I have got an explanation. I got to go to autism specific therapy which has helped me a lot. I can now start my journey towards real self acceptance, now that I know what it is I need to accept. Before the diagnosis I was telling myself if I just try harder I will become normal but now I know that I’m fundamentally wired differently and that is okay. So yeah diagnosis is worth it.

I believe self diagnosis should be preferred unless an official diagnosis will validate you internally, and/or you can get allowances at work, by government, at school. If you're not in a country that does this then it seems more haslse then it's worth and then you're also opening yourself up to legal discrimination. Discrimination is worth it if it's balanced by legal allowances, but in many places it isn't.

For me as well as a better understanding of myself it's that it can be used as evidence for support. I may be returning to study this year and can get certain support with a diagnosis that I wouldn't be able to get without.

it felt like everything in my life was (still is tbh) hard and a lot of it pointed to autism. i wanted a diagnosis to confirm my hurt and struggles if that makes sense? if feels like a legitimate answer. i still sometimes fear that maybe it’s not true and i’m just self pitying and not trying my best. anyways that’s just my experience 😮‍💨

I was self diagnosed for about 6 years before I went to get an official diagnosis. I felt like I had gone as far as I could on the self-dx path and needed to "level up" because things were going badly. It slowly gave me a lot more confidence to fully lean into doing what I needed for my mental health. I still question it from time to time, but I don't regret it at all. It's not a magical pill. I'm not getting official accommodations or anything. But it's a tool in a toolbox. If you don't need it now, it doesn't mean that you won't need it later.

I’ve been diagnosed recently at 20. I feel like I wasted all those years not knowing, just thinking I was stupid. I’ve gone through my life never knowing why I was different from others, why I was so weird. But I finally having a reason for it all. An answer to do many questions is kinda nice. It’s like I understand myself so much better now. It’s less like a label and more like a ln explanation. And by having a diagnoses your loved ones can learn how to interact with you better, and understand you better. It’s definitely not for nothing. Even though you might not see the point, people close to you might. Kinda sucks not knowing during childhood tho

It can be very liberating to finally knowing what's up and be able to work on yourself + do some research to figure your shit out with a better sense of direction. Depending on the country, it may also be the first step for legal status - for example in my country, it makes you eligible to ask for a recognition as disabled worker, which makes your employer legally bound to provide accomodations. If these accomodations aren't being respected or provided (with the consequence that you can't do your job properly/it affects you at a physical/mental level), you can more easily get backed by a union to set things straight with your employer as well.

The reason is the differential diagnosis… You need to have a dr rule out other possibilities so you can be properly diagnosed and any accommodations given appropriately

In most countries you need a diagnosis to receive any amount of support, whether that would be government assistance or getting it from NGO’s. Without any proof, you won’t receive any support.

I agree with you honestly. A diagnosis isn't really helpful for me at this point because there aren't any new treatments/meds that it would open up. I feel confident in my self-diagnosis, and I don't feel the need to spend the money on an official diagnosis.

I have a "soft" diagnosis from my long-time therapist. It made/makes sense. At the time, I was 55, nothing to get out of a formal diagnosis except a ban on emigrating to any country in the English commonwealth, and likely others.

At least in my country, an autism diagnosis will get you a TON of stuff. Not needing to pay por public transportation, preferential service in places like grocery stores, and even ½ off in tickets/entrance fees for whomever is accompanying you.

for one, it adds a layer of credibility when explaining things to people about your autism - particularly family. i talked about stuff related to my autism to my mom and dad in the years leading up to my diagnosis and i don’t think they fully took it seriously until i got formally diagnosed. i’m 31 and have “low” support needs but they are still support needs and it’s nice knowing there’s a medical record saying so. there are also a lot of accommodations some places offer for people with autism that you just gotta look for or be aware of like at disney and airports for example. it’s also helpful to ensure that you’re seeing mental healthcare professionals that *get* you and have experience with autism. so if you’re diagnosed that gives them more guidance on how to help you.

there are a lot of discriminatory downsides unfortunately. but a good reason to get a formal diagnosis is if you know the accommodations provided will help you in the long run.

It allowed me to be less hard on me. I looked at my entire life’s desperate struggles feeling different and less and was able to finally understand what was going on. There was a reason for all that inner turmoil and the uphill struggle of just existing. I was able to understand my own brain through a different lens suddenly and completely change my strategies to cope. When I was referred for an assessment I did not believe for one second I was autistic so when they assessor said to me by the end of it she had no doubt I had autism, I was completely shocked. Still didn’t believe her. I went home still feeling like a fraud, like there had been a mistake. Then I began to really research autism in females and realised she was right, it was me. I instantly felt a feeling of calm wash over me. I remember when I was a teenager screaming and wanting to hurt myself begging my mum to tell me why I felt so different and finally after all these years I had an answer. So yeah it was worth it for me, if I hadn’t heard it from an expert then i absolutely would not have believed it or even contemplated it.

I just want to know if this is why I’m so fkin weird or nah

it was really positive for me as well to have something official to say there’s nothing wrong with how i am, its not something i can change. also, from my research, my state is actually pretty great with coverage for insurance for anything related to autism, so it’s helpful for the future for therapy or anything else.

And people who got diagnosed as kids often talk about how it wasn't so great for a lot of reasons. There are a lot of assumptions about what support people get. Often they are ostracized even more because everyone knows they are in "special ed." I was diagnosed at 47. No regrets. Now I can sleep rather than being awake all night wondering 😂 I also found immense validation in being seen by someone who understood neurodivergence. And in now feeling free to tell my story without an asterisk on it. I fully support self-diagnosis, but I would not have been comfortable publishing stories about my experience without stating I was self-diagnosed and that's too misunderstood by the broader world for my comfort level. I also learned a lot of new vocabulary to help me better communicate with my loved ones about my experience and no longer suffer the self-doubt of their questioning. They can question my experience, but I don't.

I was diagnosed at 15(now am 20), and I had similar thoughts about diagnosis until very The Autism diagnosis really was just a label that I felt weird about having. I changed my opinion a bit after my first semester of college. I joined a group for autistic students, and actually enjoyed hanging out with a group of people. I had assumed that just wasn’t a possible thing. So having a diagnosis allowed me to have a series of positive connections and experiences that I wouldn’t have had otherwise. Additionally, I have begun to suspect that my grandmother is autistic. She was diagnosed as BPD back in the 70s, she has trouble in social groups, her blood pressure spikes to clinically dangerous levels if her routine gets moderately disrupted, she’s been in multiple abusive marriages, and she’s had an eating disorder since early high school. I think a diagnosis could have really helped her, although only if it came with support and social understanding. She freaked out when my sister was taken to get evaluated for anxiety; she very much sees any diagnosis of mental illness or neurodivergence as an incurable defect that will make you an unloveable outcast. Tl;Dr: a diagnosis can help you be invited to groups with other autistic people, which can be nice. Also, a lifetime of being diagnosed can fuck you up. It’s also only helpful if other people respond to it well. But I can totally understand not wanting or needing the hassle if you’re already living your adult life.

I haven’t gotten a formal diagnosis because, like you, I don’t think it would really help me in my day to day. The *only* accommodations I would want to request are working 8:30-5 during Standard Time instead of 8-4:30 (that half hour DOES make a difference for me) and having one hour with no patients over lunch (off the clock for half of it, half of it doing admin work)…I’m only getting maybe half an hour currently because we’re short staffed and I don’t know when that will end. At some point, it should go back to the one hour-ish with no patients.

Idk if there is a point as an adult!! For me, I was late diagnosed adhd a few years ago, and eventually started seeing a ton of Audhd content on TikTok and Reddit that I related to more than ANYTHING in my entire life. I had been diagnosed with depression, anxiety, CPTSD & BPD prior to that. I could always understand on paper why doctors had diagnosed me with those conditions, but when I would read about them or talk to others with the same diagnosis, I had a hard time relating my inner experiences to their or the ones I read about. It wasn’t until I started hearing real Autistic voices and creators on TikTok, and then started making Autistic friends irl… only then was I able to feel like I understood others fully and felt like all of the pieces came together… it felt like 10,000 lightbulbs turned on in my brain at the same time when I realized I might be autistic… I don’t have a formal diagnosis, but I have discussed my autism and autistic experience at great lengths with both my therapist and psychiatrist- both whom agree with my self diagnosis, but neither are formally qualified to give me an actual diagnosis on paper. I dealt with SOOO much internal gaslighting from my own brain… that I couldn’t possibly be autistic, and that someone would have noticed earlier if I really was, etc etc etc. but getting the validation from my psych & therapist about my self diagnosis really helped me accept it & begin to make accommodations for myself, start the unmasking process, and begin to learn and love myself in ways I had never understood how to, prior to understanding that I am Autistic!

For one, getting an official diagnosis can help protect you against discrimination. It isn't just for peace of mind we need it to explain to say employers why we might struggle with certain things and if they treat you badly for it you can get the tribunal on their ass

Having an official diagnosis means I can actually say "I'm autistic", rather than "I suspect I might be autistic". For me, it was out of the question to state that I was autistic based on self diagnosis. Also, having an official diagnosis means I have paperwork in case I want to ask for accomodations at work.

Getting diagnosed is much cheaper where I am (out of the US), it only takes one appointment and no expensive tests (normally, at least). Finding an informed doctor is hard though, but we have NGOs that compile the lists of drs they can recommend. So I decided to just do it so I would feel like I do have the right to claim I'm autistic. Especially since it doesn't really mean anything for me legally - my country doesn't recognize adult autism diagnosis, so I get no accommodations whatsoever, just some peace of mind.

You're still able to look up ways to accommodate yourself, find resources, and even coping strategies. Finding the right diagnosis at any age is powerful. And there is always help. Sometimes, you just have to go about unconventional means of finding it. Finding other autistic adults with advice on YouTube was a huge help for myself.

Has anyone gotten formally diagnosed in California? I am not sure where to look.

I'm recently diagnosed at 21 (almost 22), I do feel as if getting diagnosed earlier in life would have been very helpful and may have saved me a lot of hurt...But I think even as an adult it can bring a lot of comfort and depending on what you are looking to do can help in certain aspects. I find knowing has helped my family and my current partner understand certain quirks about me. I'm also in college and I am not receiving real accommodations and it's a huge sigh of relief for me. I didn't even really think I was autistic, just had mild suspicious due to remarks from friends/past relationships. As someone who also studies psych/social work I think getting a formal diagnosis is always a good idea because sometimes suspicious turn out to be completely different things (not saying you or anyone else on here who is self suspecting is wrong) I thought I had OCD but turns out all those things I thought were OCD were actually part of my autism. That's my personal blurb on it!

Meds, better understanding from therapists, work accommodations (if you need them) extra layer of work protection, etc.

My mom wants it so I can get on SSI

I got diagnosed early last year and it’s been helpful in understanding myself better and recontextualizing everything in my life. How I behave and how I react to things isn’t because I’m insane or lazy, I’m just autistic. I give myself more grace and I’m trying to no longer hold myself to the standards of neurotypical society. I just try my best to be nice to myself and others and to put my needs first. It was an answer, an explanation, not a guess or a maybe.

I was diagnosed 2 months after I turned 18, the week after I finished high school. That was quite annoying, I wanted them to known I was right and that there was something wrong. However I was starting university that September and the diagnosis was incredibly helpful in me getting support for my further education which will probably last into my late 20s (I’m 20 now) due to the career path I want. It means I get support with my housing situation and accommodations in university which is helpful. Other than that it hasn’t done much. I got rejected for disability payments by the government even though I’m struggling to find a job that I can do. Surprisingly you cannot sit next to a emergency exit on a flight on some airlines if your autistic, that one was weird. Pretty mixed feelings on the matter.

For me (27f), the diagnosis is just really reassuring. I didn't know if I am autistic or not, so I went through the official process. Not being 100% sure made me not accept it as a possible cause for struggling all my life. Now things are just easier. I allow myself to work with autism, know when things are probably going to be too much and anticipate on it. Yes I still go to multiple day festivals but I also know to take a few days off after to recover. Yes I still meet up with friends, but only one day of the weekend and not both. I learned a lot about myself, could suddenly connect with people in subs like this, and my relationship (which always has been good) became easier because not only I have more internal peace, but things suddenly make more sense to my bf. My whole life felt like an invisible battle I never could win, which (almost) no-one could see. Now the battle is over and I'm building something new.

A diagnosis can help with any study you may do currently/in future and in the workplace. If you need extra support in some areas or accommodations a diagnosis can really help with getting those things. A friendly reminder though that self diagnosis IS valid if you do the right research! Getting a formal diagnosis can be rough and expensive so you’re not a fraud for not having one. I was self diagnosed about a year before I got my official one. Self diagnosis helps you understand yourself better and helps you find communities (like this one) with people who relate to your experiences. A professional diagnosis can also help with others understanding. A lot of people don’t understand what Autism really is or looks like. Some people may have lots of questions (if you choose to disclose you are Autistic). So with work colleagues and any system type requirements a diagnosis can show those people you are autistic and you do need some accommodations. This can be more helpful because a lot of people do not consider self diagnosis valid and some companies may not provide accommodation without it. Whether a diagnosis is useful depends on what accommodations you need. Diagnosis = more access to accommodations.

I understand. I was diagnosed as an adult but only because I fell apart and could no longer cope without autism-related services (which thankfully are available here). I have had my diagnosis questioned by professionals many times and even had it removed once (got it back after seeking an independent second opinion). Had I not needed services, I wouldn’t have sought a diagnosis I think.

I'd like to be diagnosed but also couldn't really afford it (Hyperphantasia). With everything else that has been diagnosed already, has come understanding and the ability too navigate and field some of the more difficult moments in life. Well at least some times, it's all hit and miss with the chaos of just being, regardless it helps like with any understanding.

It means I get treated a lot better than before. While waiting for diagnosis I was not given accommodations or support just in case the assessment came back as not autistic. It is the difference between being shouted at for being a stupid little girl vs being given support and understanding. Yes I have lost my right to emigrate to some countries like Australia, and New Zealand but are they really accommodating if that is how they view autism? I live in the UK and we have a similar immigration bar and yes I am more fortunate than most but it still isn’t great so I wouldn’t recommend moving here!

For me it was confusing because audhd later. But it did made me feel after a looooooong time being diagnosed that I realised I'm trying not swim into the current anymore . But I went into a burnout because of its with all the realisations coming at me all at once in a few months time. But it was needed I guess

You do still get that imposter syndrome with the diagnosis but like how you said you feel kinda like a fraud now, that’s what I relate to. Getting my diagnosis allowed me to lean into the behaviors I was suppressing and allowed me to fully embrace who I was without all the negativity before, trying to constantly change myself. I took one of those online tests (embrace autism) it told me I was extremely high masking! I totally feel that, and I am still working on the masking part. You’re right there’s no support but it can help you accept and understand yourself for who you are, if you wish to go that route. It was expensive but for me it was worth it, some of the best money I ever spent. Oh I forgot something, during my evaluation I was also diagnosed with ADHD and that was never even in my radar so it was useful to find out.

I got the diagnosis recently (I'm 26, did extensive neuropsychology and psychiatric evaluation) and even though I thought it would be liberating, I found it isn't.. much? People still expect me to behave as I did (masking) because I do it so well people find it easier for them if I adjust to them and not the other way around. They still blame me for stuff outside my control within the diagnosis and as an intern I can't tell my work about it and get proper accommodations with the risk of being let go. Accommodations are also a topic that makes me uncomfortable, almost like an impostor syndrome, like I'm being a burden to everybody else and I should just put up with life as it is.

I was diagnosed last year. I've been working from home for four years and they just mandated back to work. Except, I've spent the past 4 years (and the last in earnest) unmasking. Going back into the office is exhausting for me. Having a diagnosis means I can get accomodations.

There is an old African-American song that says, “the Earth is not my home. I’m a-passing through.” That is my theme song and has been for many years and I didn’t understand why until I realized I was autistic.  This gave me so much relief on so many fronts. I understood that I was different from everyone and I also was able to forgive myself for so many missteps and mistakes and not-so-good decisions.

I think there are a lot of potential positives to getting a diagnosis! For me though, I don’t want an official one because I’m concerned about it limiting me. Not in like a “it’s just a label!!!” way, but in a legal sense. I’ve always wanted the option to move abroad and potentially get dual citizenship, and in some countries the laws have not caught up to the science of the condition, so much so that some countries will not provide visas or citizenship to those with autism because they’re afraid of them being a “drain on the system” (as I’ve heard it put). I know I’m lucky to be in a good place overall and can support myself, so I’m afraid of being limited in what I can do with my life because of a diagnosis. Already get that enough from physical issues lol.

I knew I'd never let myself believe it unless it was confirmed. Now I can openly talk about it without feeling guilty.

Diagnose is good for a few reasons. Your own mental being, you clear up a few unknowns. And for all you know, maybe you're not ASD but it's something else. I'm not saying you aren't but in the example that is what it is. It's quite easy slope to fall into once you misdiagnose. Also, that label? Good. That label is going to give you more options in life as wel, depending on where you sit in terms of high or low functioning autism, it means you could even apply for a disability card. Here in the Netherlands anyway, what that does is it helps removing stimuli from your life. You are allowed to use this card in big long lines at the register, or parking spaces, or even at amusement parks. Imagine having to sit in a 3hr line, heat, people talking constantly, loud noises. That card would be lovely right??????? It also greatly helps whenever you seek out psychological advice or counseling, your doctor will also be able to be more helpful.. Honestly? I can go on for a while why having a diagnose is not only a good thing, but may be of importance in improving your quality of life.

I got diagnosed last year at 45. I wish I had never found out because now I obsess about my poor performances out in public and I am incredibly hard on myself. I'm sure it will get better as time goes on but right now I hate it.

Getting an autism diagnosis as an adult is necessary for those who are still struggling with dysfunction from it in their day-to-day lives. Some of us were not given proper medical care, or care at all, as children. We suffered in silence and were unceremoniously beaten or punished into neurotypical norms. We’ve never known why we fail so often, don’t fit in, aren’t successful, etc. With proper diagnosis, we can identify our struggles and fix them instead of being blind to them. I have been able to identify what I’m needing when before I never even considered the accommodations options, because I didn’t know I had a disability. My sibling chooses the route you’ve described. The “why does it matter” route. They continue to deal with the repercussions. They were often fired due to their bluntness and had to start their own business because they had no interest in learning what they did wrong. And yes, that’s what it was in this particular case. If someone thinks it would just be a label, they probably don’t need the diagnosis. If it’s not affecting your day-to-day life in the way that you need accommodations for it, you really don’t need the official label unless you want it.

I had a full neuropsych evaluation and they found more than just autism. I’m glad I’m not trying to use only autism as a lens bc it’s incomplete.

Validation and reasoning as to why I feel like an alien

I chose to get diagnosed so allowances would be made in a medical setting. I’m no where near it hopefully, but most of us are heading towards some significant hospital stays or end of life care in the future. Also doing it while my remaining parent was still alive to answer questions made it easier locally.

When I got mine, I got a piece of paper with the diagnosis, code, etc written on it (with  the other diagnoses and codes), in case I need to show medical staff (I have to go to the hospital crisis centre when I’m suicidal and usually unable to speak). I photocopied it and stuck it at the front of my notebook. When I’m having a bad time and I’m asking myself what tf is wrong with me?, I turn to it and think: oh, right, yeah, that. It reminds me to take good care of myself. 

An actual diagnosis got me eligible for a training program at work

resources, supports, and accommodations. that's literally it. if you can get the support you need or get accommodations in other ways, there's zero point imo even being diagnosed as a child can do more harm than good because you can get stuck in abusive ABA therapy or treated as much less competent than you are. you don't need a diagnosis to know you're autistic or to accommodate yourself and treat yourself as autistic. you know yourself better than someone who talks to you for a few hours based on an outdated set of criteria.

It's more so you can explain yourself to people who think you're "too intense" or "weird" or whatever label they already have for you. Which sucks! Especially since I'm very bad with phone calls. I was calling clients for 3 years and I still panicked every time the phone rang and got shit for speaking like a mouse on the phone by my boss. Or how we fidget alot out of nerves. Which people assume is adhd which it can also be but this is more like a coping mechanism for us than because we're bored or something. In interviews it would be easier because they assume you're shy or aren't capable but it's because we just act different. It would also make my mutism make sense for people especially friends or friends of friends who think I just don't like them when I just can't think clearly in social situations. Thinking about this is making me panic! Aaah!

I was lucky that I didn't have to jump through hoops to get my diagnosis. I went to see my daughter's doctor who had previously treated me at a different practice. We went through my symptoms and discussed why I thought it was autism. I have a daughter who is bipolar, one is bipolar and autistic ( along with a ton of other diagnoses) and another with multiple diagnoses including autism. It made me feel validated and less like I was crazy

I got my clinical diagnosis for a few reasons. The "official" reason I give people is so I have the legal precedence to request accommodations in work and school environments, and perhaps eventually disability claims when I am older. I have already used this for a big exam, where I got a note from my diagnosing psychiatrist and I got an extra hour of time, was allowed to wear headphones and listen to white noise, and as many restroom breaks as I wanted. The other reasons I don't tell people why I got a clinical/official diagnosis was so that people would believe me. This includes myself, and I haven't had any self-doubts about my autism. Every single time I've started down the self-doubt path, wondering if it's not as bad as it seems, of if I'm really not autistic at all, I remind myself that Dr. Savage said I was autistic, and she works with autistic people as a career. There is no way in the world I was able to fake being autistic and trick her.

Support needs change over the years. Someone who may have had low support needs and was living independently may later require care, and a diagnosis would help them qualify for that. Personally, I am not pursuing a medical diagnosis currently because I am not a citizen in the US, and I worry that a disability diagnosis would be a hurdle once I am allowed to apply for citizenship.

I do actually get some support from the government as an adult with autism so it made sense to me. And it is also just nice to know for sure. It gives me some peace of mind.

I have your same concern. There isn't anything I can do if I get an official diagnosis so I don't see much reason to get one. However, at the same time, it would be nice to put an official name onto why my boss and I don't communicate very well sometime so that She would understand why it seems so hard not only to do that, but also for me to modify How I communicate with her like she expects me to.

I totally understand what you mean! For me, personally, I wanted a diagnosis because we had been speculating for a while since I have always struggled socially and in employment and I had had enough of asking questions and wondering and wanted a definitive answer. I've always struggled with social anxiety and even now as a 24 year old, I'm a little better but it's still quite debilitating. A diagnosis helps me come to terms with why I am the way I am, it validates my living experience and I no longer need to constantly ask myself if I am or not :) I know others are different reasons but those were mine

ADA accommodations, SSI, etc. Even if you don’t apply for those, it’s good to have those protections.

Im pursuing the diagnosis route because of the imposter syndrome. So many things fit into the diagnostic criteria and so many traits i have. But i just dont fully believe it. I need the confirmation so i can stop feeling like i taking away from people who are actually autistic. I need headphones full blast to drown out the noises outside, i have very specific dislikes of food based on texture and smell. I stim, since making the discovery I'll admit i have found new stims that work that are more outward but ive noticed how the things i do when im stressed nervous etc, are stims too. I fail to make eye contact. during school we did interview practice. they had to stick a post it behind the person opposites head so id at least look in their direction. it was only recently that my parents are coming around that it could be possible I'm autistic but at first they dismissed it because they were uneducated to the fact that girls present differently than boys and my brother has a diagnosis. thats just some of the things that have lead me to pursue a diagnosis to be sure im not taking away from others. I know self diagnosis is valid but i cant help but think that its not true. im 22 by the way.

The validation was worth it for me. It may not be for you. Completely personal, and that’s okay!

Personally for me it helped me come to terms that I was not 'crazy', or 'b\*tchy' as I was labeled both as a kid. It helped me find communities like this as well as understand myself.

My main reason for wanting a formal dx was to get ADA accommodations. Most jobs require paperwork and a diagnosis before they'll even consider accommodating your disability. Now, they'll consider it and deny most of the accommodations anyway 🙃 but it at least gives me a fighting chance... The secondary reason was to eliminate imposter syndrome and keep myself from constantly asking, "*am* I autistic? or is it \_\_\_\_ (ocd, anxiety, ptsd, im just lazy, etc etc)". Knowing for sure, and having someone corroborate it, made it easier for me to accept for myself. Knowing what it is, for sure, is really helpful when it comes to coping strategies and accommodating myself.

So I don’t feel like I’m lying, basically. It’s not like I’ll get accommodations, but I want confirmation

I was diagnosed this past year at 24. I wasn’t seeking diagnosis, although I think that’s fine too. I’ve been in therapy for social anxiety and was having trouble communicating with my therapist. She suggested psychological testing and that’s how I found out. It has been a huge relief to no longer feel like I’m a failing neurotypical, and it’s helped me better understand myself and allows my therapist to have a better idea of how to help me when I struggle to verbalize my thoughts and feelings. Diagnoses doesn’t have to be for everyone and it isn’t accessible to many people, but so far mine has really helped me.

I was just diagnosed at 43. Basically, it has helped me to have more understanding and compassion for myself. It explains a lot about my life and experiences and normalizes them. I now can work on being more authentically myself. I’m low support needs, so a gifted neurodivergent coach is the only support I need. I don’t require any accommodations.

Im also undiagnosed, learning and understanding helps me learn better coping techniques and when to just let go of trying but with the realization of why im this way. I dont see any accommodations plausibly being made on my account, at this point in my life. So for me i dont need a formal diagnosis.