Saddness after diagnosis

Kate Kestrel said:

I think it also means we find we are part of a ‘tribe’ of autistic people - and many of us have never felt part of a tribe before - we’ve always felt like outsiders.

Hello Kate Kestrel  ! Thanks so much for your comforting letter! I wanna get in my tribe and I signed up for auti group therapy, it starts at the end of January. I don’t really know how to be part of this tribe. Do you have nd friends? I am even wondering how to talk to undiagnosed people after my story of being late-diagnosed. And I wish to get rid of this urge to understand who is neurotypical and who is one like me. The right way might be just to focus on the connection itself.

I found that learning about body language from books helped me to translate the coded messages used in social situations. I have an intellectual grasp of non-verbal communication, it is not perfect, but it is useful.

I'm afraid that, as an autistic person, building a social life, and many autistic people desire friendships and romantic relationships, means sometimes putting yourself into uncomfortable situations. The essential tricks are to pace yourself to avoid exhaustion and to give yourself alone time to recover from social pressures to avoid meltdowns/shutdowns.

Martin said:

not being able to sail through social and sensory situations like others

Hello Martin  ! I am re-reading your letter from time to time and memorizing it. I wish to have a “translator” for social situations and pills for sensory issues. 

Martin said:

to create 'work arounds'

My work arounds would be friendships and community.  But to get there I have to be very creative and sometimes it is not fun to be clever about my social and sensory issues. I got sad cause it is annoying and being alone so much sounds safe but not easy either. 

Martin said:

Since learning that I was autistic, I have been better able to be kinder to myself

I try to be kinder also.  I guess I have to practice this somehow! And thanks so much!!

Thanks so much kiwipip ! Good to hear you like my country!

Though you will always be autistic it is not unrelieved gloom. With a clinical diagnosis you are now aware of why you are the way you are. Before I realised that I was autistic, and was subsequently diagnosed, I thought that most people had similar problems to me, but were just much stronger than me. I now know that most of my problems do not affect neurotypical people at all, and they would hardly be able to imagine their existence. Since learning that I was autistic, I have been better able to be kinder to myself for not being able to sail through social and sensory situations like others and to realise that limiting interactions that cause me distress, or 'bailing out' of situations that have become unbearable, are legitimate things to do. Once you know your limitations are valid, it is easier to create 'work arounds' where once you might have felt that muddling through was the only option.

ohhh ok sorry I misread your message - you are based in hungaria  I don’t know about any services there to help with but welcome here anyway 

ooo ok I well welcome! It’s nice to meet a Hungarian it’s one of my favourite countries and sorry I didn’t mean to pry - I was more wondering where about in the UK you are based as there are a variety of support in different areas and some areas seem to lack the same level of support as other parts. Do you have any friends or family locally? 

Hey Cinnabar_wing ! I feel a bit better today! Still confused and sad but in a calmer way! I’ve rested a lot and I was reading all the supportive letters here. It does make a difference! Such a joyful thing to say that now you can speak to people from other countries! 

Hi Ma.ra. , I hope you are feeling a bit better today. It can be a lonely thing when you are feeling so isolated - I skimmed the posts and saw your are from Hungary and that support is hard to get. I'm glad you found this community, the company I work for is in Sophia, so I'm quite used to speaking to people from around the world, though ashamedly I don't have fluency in other languages. I think it's marvellous that so many people are so good at English like you, as it means I still get to speak to people from other countries!

Phased said:

Sometimes also one realises that some of the problems autistic people encounter are not at present possible to overcome even when we have mastered being our autistic self.

Dear Phased, This is why I got sad. Thanks for your understanding. I will search every unusual place then  Minden jót is such a cute way to wish me luck in Hungarian! Köszönöm = Thank You!

Hello Ma.ra.  It does seem like having to study for a master's degree yes. The sadness perhaps comes with how change happens for different people - yes it can take a long time to understand and accept such a big change in perspective and find happiness. Sometimes also one realises that some of the problems autistic people encounter are not at present possible to overcome even when we have mastered being our autistic self. Happiness is found in unusual places as one finds acceptance for change. :-)

Minden jót!

It is huge to be diagnosed! For my experience it is huge! I did not know I was in a different world! I think I will celebrate this. I am still thinking how! I guess some cake will be involved! And since I can’t really share it with anyone I ask all of you to eat something yummy in these days! Also good luck to youJoandCloud !!! I will follow your lead and let myself just be and soon with some cake!️

Hello Kiwipip and all!

We don’t really have online community support here, I’m Hungarian, from Budapest. (so I really hope I can stay here, I’ve read the rules of the community here and it is not written that I have to be from the UK which btw I adore since childhood!) So here there are only two Facebook groups, run by civilians, but I want to stay anonymous, also they are not professonals!

We have 2–3 civil organizations that run some free autistic clubs and events. I will join one next week! I wish someone could come with me! It sounds like a major coming out for me to attend an event organized for auti people. State support is basically off — they don’t have enough staff to run it properly, and they even canceled the waiting lists to get in. What can I say? 

Some new private support is starting to appear. Trained therapists are forming clinics now             (pietro_21 I feel the same neurotypical bias what you mentioned but I wanna understand my brain and wanna have a tribe and friends so I pay ), and there are 3 places offering group therapy. I will join at the end of January. And refer back here how it is going on! 

Resources are very limited, and I was diagnosed at 42 — honestly, just by luck. Here, the focus is mostly on kids and parents. I am in therapy since I was 24 and they somehow missed this part.

I was so happy when I found this online community, because I had nobody to ask for help. My therapist isn’t specialized in autism; he offered temporary support until I can find proper help. The first available one-on-one therapy appointment is in the spring.

But I like us! I know other nd people and I think we are cute! 

Thanks so much Chloe!

Hello Ma.ra. 

Thank you for sharing this with the Community. I am sorry to hear that you're feeling sad following your diagnosis. It's great that you're already receiving support through therapy and have let us know how you're feeling. Our website has a diagnosis hub, this includes information, practical and multimedia resources to support autistic people and their families before during and after diagnosis.

You may want to visit the other resources on our website, we have advice and guidance on a wide range of information about autism, socialising and relationships, communication and education: https://www.autism.org.uk/advice-and-guidance

You can try searching on our Autism Services Directory for diagnostic services in your local area. The Directory also includes listings for support and social groups for autistic people, their families and friends.

I hope this helps,

Chloe Mod

Try not to feel too overwhelmed, think about how you were before your diagnosis, you were the same person then as you are now. You don’t need to explain anything to people irl if you don’t want to. I know exactly what you mean. I have been signposted to some organisations which offer a kind of cpd type networking for autistic people. I’m not really happy to pay hundreds of pounds to do one of these as I only feel this will benefit the company running it. There seems to be a neurotypical bias to the support systems which is equally hilarious and frightening. I’m also hearing a lot of things here which I (recently diagnosed) and feeling myself.

I read here the letters and I feel accomodated. And I can’t rely on my brother and mother cause they are n.divergent also but I really can get calmer if you guys understand me and I don’t feel that lonely.

Bright lights and noise are very very hard, I can’t sit for more than like 15 minutes if I am in an office, I have to get up and move, I get also overstimulated by people, it is very hard that they don’t act and speak how they feel. My head gets dizzy about these unspoken things. A lot of times people use me as an emotional trash can, I’ve read about this and I wanna try to show that it is not fair! After socializing I have to stay at home like 2 days resting. BUT: I love hiking alone, I do it twice a week. I am a volunteer at a coworking office as a community host so when I socialize it has a followable task and structured ways of connecting. I used to work with wood but got a hand injury so I can’t have a handcraft job again which was basically healing for my brain and soul. I don’t know if I will be ever that happy. And I think I am still very angry that I inherited this wiring. 

This sounds like a very new diagnosis that you have received ….it is a lot to take in…you sound overwhelmed and it isnt surprising because it is huge to be diagnosed…you might be able to allow yourself to feel how you are and not expect too much of yourself at this time. It sounds good you have therapy for support…let yourself be how you are if you can…there are many supportive people here and in books …. If it is any comfort i am still waiting to be assessed…good luck

I’ve read these and finally fall asleep for a bit which I can’t do since a long time