Newly diagnosed and now feel more lost!

Hi, Welcome!! I was diagnosed at 25, just over 3 years ago and I still have moments where I am questioning my diagnosis and I’m still figuring out what it means to be autistic. I think questioning things and feelings of imposter syndrome post diagnosis are very common amongst autistic individuals (maybe you can think of you questioning the diagnosis being a manifestation of one of your autistic traits). It helped me a lot to connect to others on this forum. I also realised that a lot of my friends are neurodivergent- I just hadn’t known previously but they shared this when I told them about being autistic myself. It takes time to figure things out. I am still trying to figure out how to function and be happy in this world without being trapped in an endless cycle of burnout and overwhelm. It’s not always easy. I think that knowing I am autistic will help in the long term though- I hope so at least. I hope this helps! 

Yep. I'm almost a year in and it's still a bit of a mystery. I know I'm the same person that I was, I just have a bit more information. It was a relief initially but then I felt a bit resentful, which is apparently perfectly natural.

If you are like me, nothing will happen afterwards, it's like he's your report and don't let the door hit you on your way out. You have to reach out to your local support group, where I am it's daisy chain project. GPs and the mental health services just deal with the fallout (depression, anxiety etc).

Good luck with your journey and take care.

Getting a diagnosis does not change you as you have been autistic all your life. Just think of it as an explanation for how you do you. I've not been diagnosed long either.

I’m waiting for that day to come still. I’ll get there. I actually have a pending lawsuit over my mental health with my employer and with the government shutdown it’s only escalated the situation within my own mind. We were getting close to being seen by the judge and now everything is on pause and that is extremely stressful and my anxiety has been ridiculous. I do appreciate the sentiment. YOU ARE ENTITLED TO REASONABLE ACCOMODATIONS under RAC, do not let your employer play games with you and document anything they say regarding your disclosure. You have protections. 

That’s the bizarre thing really - nothing ‘happens after’! I still found it useful though as it helped me to better understand myself and to be more forgiving of myself. I would say: give it time - it takes a long time to work through coming to terms with the diagnosis. So don’t rush it - feel what you feel, take your time, take it easy. 

thank you for your comment, in regards to telling people, I feel I already experienced that somewhat with my manager! But hoping she was just busy and in supervision it can be discussed further, as I feel  it is important for her to know as it effects my day to day, mainly at work! 

I am glad you finally got listened to, just a shame it has to take so long and for you to go into crisis before it was picked up, but hope you are feeling somewhat better now and able to make sense of things a little better 

I often use chatGPT, I know I am not to take the information as gospel, but have found it really helpful, trying to understand myself better, way before the diagnosis but it also helped with with the referral process and how to access support through my GP ect as I just get extremely overwhelmed really easily, it is such a great tool! 

I have also found AI to be useful. I use an app called Voiced. It’s $60/year, but it’s like a therapist in your back pocket. 

I feel you. I was just recently at 40 diagnosed. So within the past 3 months, and I’m still struggling to understand everything. I had asked prior providers if there was a possibility of me being ASD, and I was completely dismissed. Fast forward 3 years and I have a nervous breakdown while working as a front line supervisor for the second largest employer in the United States. That was August of 2024. Since then I see 3 mental health professionals a week, and it took me asking one of them for a blanket on a hot day for them to start asking ASD related questions, and it turns out I’m ASD 1 as well. It’s a bittersweet feeling because it makes a lot of my past make sense, however, moving forward has been extremely difficult. Also, I wouldn’t disclose your diagnosis with anyone unless you KNOW you’ll get the feedback you need. I learned this the hard way. They’ll term you that you don’t look autistic, or there’s absolutely no way that’s possible, and this just caused me to isolate myself even further. Unless you need accommodations at work, I wouldn’t say anything either. Good luck! 

It is so hard, All the support groups seem to be for families with nonverbal young children. I’ve found my own way over the years but my child won’t even ask me for help. It hurts so much seeing them shutting down more every year and we can’t do anything to help. 

I know some are not convinced, but I found chatGPT very helpful. I just talked to it like here, just write, rather than transactional question and answer. The longer you write the better. It will help with patterns and interpretation. You can ask what it makes of things as you build up a long thread (up to 500 entries). It has helped me figure myself out. 

You type things like, I think this, I did that, I feel something else. I remember something. It comments.

You can also ask it to be brutally honest as well if you think it is being too supportive.

It can help to give different perspectives, and reduce self-blame. Like therapy.

Thank you, I do feel like I have a lot to work through even without the autism diagnosis that's for sure! So I guess now I know, I am in the ahh what do I do about it stage! She said my report will be around 2 weeks so hopefully they will help. I actually read your making thread earlier when I first joined the forum,  it was a good read and I resonated do much with it 

Being at home, I feel ok i can always be the true me, it's outside of that, at work I really struggle and I try to hide my "weirdness" it is me, but my husband instead gets the full hurricane of itwhen I get home lol

It really is exhausting, I often found myself just completely burning out and needing to just isolate and it was effect my mental health, so knowing what the cause is and finding potential ways to help myself is definitely good. She said the report will take a couple of weeks so hopefully there will be some information and resources I can use 

Thank you! I do feel some sort of relief, I think what made it harder was I told my manager as she knew I was having an assessment and the reply was "oh that was quick I may go get one" then walked away when I was mid sentence, so felt very dismissed straight away! But I am going to definetly be using this forum so far everyone seems great! 

This has been similar for my daughter, after years she just got a letter and diagnosis at 16, then discharged with no follow up support or any guidance, and she really struggles to ask for any support other than from me! From what I can tell adults services wrong be much different,  she said she will do my report and then discharge it really is so hard 

After diagnosis you will get a report. It may suggest a few steps to try, but mostly you are on your own. It can't be cured, so it is a case of making changes to make your life easier. As each person is different this varies greatly.

A little depends on what state you are in when you get diagnosed. If you are in burnout your first thing is to get out of it, so changes are non-negotiable. You need to get regulated.

If you're not in burn out, then it is a question of noticing what causes stress and finding strategies to reduce it.

If you have a lot of history, reframing it can be hard if you have trauma. Help may be needed.

So you gave the physical and the mental adjustments. These take time.

As you've noticed, having an answer is not the same as having a solution.

You can have a look at my masking thread, it has some information about what it is and suggestions for how to reduce it. You will need to observe yourself carefully. Keeping a journal or diary will help to notice patterns.

I think you have to conciously choose to look at your life through a lens of autism, things will become clearer, I think its quite common for people to feel as as you do. I think you just have to sit with it for a bit and get used to it, so much of how you previously thought about yourself now seems up in the air, but you're still you, the same person you were before diagnosis.

For myself I just felt relief then enjoyment as I told the few people I'd known for a while and who had remarked on my "weirdness" in a negative way, that I really couldn't help it, SO THERE!

Hello from America!

I’m about the same age as you and I was diagnosed around age 30. My feelings were primarily of relief after I was diagnosed, but i do understand feeling lost or having imposter syndrome. Some things that I think might help to know:

1) As Pootalfun mentioned, it can take some time to process. Be patient with yourself. It is common to feel a whirlwind of emotions post-diagnosis and it will likely change over the next few months.

2) Therapy isn’t for everyone, but it is a good option if you are not sure what to do after getting a diagnosis. One thing that helped me post-diagnosis was getting art therapy with a specialist in Autism.

3) You don’t necessarily need a diagnosis to be a member of the Autistic community, but you have one! There are Autistic groups out there that you can join. There are also organizations that stand for social justice for those with Autism, if that is something that interests you. Knowing you have Autism means that there is a whole new community that you now have similarities with.

4) Work can be very difficult for us with Autism. A good thing about getting a diagnosis is that you can potentially get accommodations in the workplace. Unfortunately, it can be hard to get better arrangements even with a diagnosis, but it’s practically impossible without one. If you cannot get accommodations such as a quiet space to work or clear and concise instructions, knowing that you have Autism can help you to know what you need in order to succeed. For example, for my work I have to talk with people on the phone. I have managed this by planning my conversation ahead of time and writing down important details like my own phone number so that I am ready for anything.

If you’ve got any questions I’m happy to help as best as I can. Best wishes!

It might be different for adults, but after nearly 4 years we got a 1.5 page letter (from a paediatrician we only met 3 times) confirming the ASD diagnosis for my 17 year old and signposting to a book and this website. We are now discharged from the NHS ND pathway; lost is an understatement! My child doesn’t want to ask for help at college so we really don’t know what will happen next