Not sure how to move forward post diagnosis.

Hi Ellie

My story has several parallels to yours. I was mis diagnosed with bipolar in 1998, the “professionals” failing to note one of the basic features of hypomania and mania as described in both DSM5 and ICD, which was the required episode length. My meltdowns can resemble bad hypomania, but they don’t last longer than several hours after which Im burnt out, hypomania/mania episodes need a duration of weeks (without checking I cant be precise but its many times longer than my worst meltdowns).

Then in 2022 a non clinical member of staff in a psychiatric hospital I was in at time ran a short screening for autism and I scored highly. She persuaded the psychiatrist on the ward to have me referred to the trust’s autism team. Who confirmed the correct diagnosis as Autistic Spectrum Condition.

It then took two years of self advocacy to get it changed, begrudgingly on their part, from bipolar to autism  i was told off the record by one of the psychiatric nurses that they made it so difficult to get my records changed for fear of me suing the hospital trust  Actually beyond correct diagnosis all I wanted was an apology for their twenty years of abuse by psychotropic meds, unsurprisingly I did not get this  

Knowing the correct condition has opened many doors, some however had monsters behind them especially as my memory recovered and subsequently I had C-PTSD added, for which getting appropriate psychological treatment has so proved impossible, both on NHS and privately  

I very much relate to your lack of interest in things but it has definitely improved with time for me and continues to. It would pass the criteria for depression Im pretty sure but as I feel increasingly bright Im going down that clinical path  

best wishes

AnA

Hi 

diagnosed at 41, I’d say the best thing you can do right now

work out your sensory profile and find all the things that regulate your senses 

some of us want to escape to a remote island. That’s not always possible. But can some of that serenity be recreated through eg an audiobook or escaping to a lakeside early morning?

I wish you well with your assessment process. Hopefully you'll get answers soon and is helpful to you. 

Your English is great. 

I relate to a lot of what you described! The family burying the problem instead of helping, the professionals who had no idea how to deal with it. The misdiagnosis, false treatment... I was diagnosed depression,  tourette,  there was suspicion of epilepsy,  all kind of stuff. Age 36 - suspicion of autism. If everything goes well, I should have the final answer till the end of this year. If it's not autism,  then I expect the assessor to tell me, what instead. 

I'm not living in UK not USA, English is not my first language. In western countries the awareness is higher, than in my country.  If I haven't migrated, most probably I would still sit alone and wonder, why I'm inferior to others and can't manage my life.

Your post isn't at all annoying. I thank you for sharing your experience. I'm so grateful for all responses as it's helping me process things and feel less alone as I haven't disclosed my diagnosis to anyone yet so I'm feeling very alone hiding all these thoughts and feelings inside. 

I feel when I repeatedly said I was struggling when I was younger I was dismissed a lot by family so feel I was held back from getting help when I really needed it. I feel that came mainly from my parents just not knowing better/not knowing how to handle it and prefering to bury the problem rather than deal with it because they didn't know how. I have compassion for that aspect.

My anger at not having it recognised sooner lies with medical professionals, so I feel let down by people who should be trained to notice these things in my opinion. I'm glad to hear that your therapist recognises it. I told more than one therapist repeatedly, in recent years, all the traits that I told my assessor and my assessor confirmed a diagnosis before even taking it to panel as she was so convinced I fit all categories. It makes me frustrated at the money and years I wasted trusting professionals and I strongly believe that its concerning that counsellors and therapists don't seem trained in autism from what I can tell. I was told by my therapist that it wasn't a factor in anything and I was made to feel that it was unimportant and was labelled as other things instead. I feel it was very important as an accurate diagnosis of my experience. I feel better training of mental health professionals is required and wish I could do something about that. Anyway, that's my rant over. 

I will find a way through this but I think I just need time. I'm finding everyone's responses really supportive and helpful. so thank you for sharing. 

Hi I'm not diagnosed. It's being 2 years that I know about autism,  I've been exploring this topic and now it's possible,  that im on my way to be diagnosed.  My therapist told me he has no other idea what else could that be. But the final word has not been said yet. I went through grief of my lost youth, anger, how my life could have been if my mom didn't keep me away from getting help. There were massive problems,  including meltdowns,  I'm sure, any other caring parent would have done something about it. The thing that helped me accept tge situation is the fact, that 

1. Getting diagnosed 20+ years ago didn't mean, I would actually get help. Maybe my mom just saved me from being locked in a mental ward and fed awful meds. I red an article about autistic children (people more or less my age) that were put under cruel "therapies" that caused them life long PTSD. I'm lucky I wasn't there.

2. The awareness about autism back then was much lower. So there is a high possibility, that I would be misdiagnosed (and I was as a young adult)

3. I'm happy and lucky that I know now or have the suspicion.  There are still many people who suffer and have no idea why. 

My life was hard, but I can't change the past. I try to concentrate on working for better future. 

Sorry uf my post is annoying. I know that it's not that easy to get over these feelings. I wish you best and hope you find support here. What makes me angry currently are lies and gaslighting from my mom. But there is nothing I can do about it, just get immune to that.

Thank you.

Hi I was diagnosed with ASD last year age 46. I would say if you need support then ask and apply for it, to your local council or through your doctor. It’s easy to get caught up in the whole diagnosis this as a kind of expectation that things may be different to before. What counts is that people who know you and you can open up to are still there. How you got to where you are now can also answer your question about moving forwards. Because you obviously have coping mechanisms. From my perspective it has been about dropping some things which I have felt I had to do based on others expectations. This pressure builds up particularly when you don’t know you are neurodivergent.

Thank you for sharing. It must have been hard to hear at 16 that others knew for so long before you. Sorry that happened to you. I'm so glad you know now and are able to live your adult life from a place of knowing and understanding yourself. Take care. 

Thank you

Thank you

Here is the website 

https://www.divergentpod.com/

I listened on Spotify, and I think they are on lots of other places you might listen to, and I think they might have stuff on YouTube? 

The presenters are both very real, and share their lives experience. I listened to the ones I needed to most at the time. Later on there is a series on burnout, andb they did while they were both in it, and you can really tell how hard they are finding it. 

I found it calming to hear people talking about all the things that were jumping round my mind. Dr Neff also has books and lots of other stuff on her own website.

neurodivergentinsights.com/

I'll also say, there is another podcast I listen to, it's more a general mental health one, but Kimberley Wilson has a really reassuring voice, I like to listen mainly as it's calming, even if I don't have those problems, it helps to know other people have issues too, even if they aren't the same.

https://www.bbc.co.uk/sounds/brand/p0mcyd0k

Thank you. I really appreciate you taking the time to respond. This is really helping me. 

Thank you. Stupid question but where can i find the 'devergent conversations' podcast you mentioned?

Hi and welcome to the community. Others have already posted some good replies and I don't think I can add anything useful really.

Finding out that you are autistic when you are a person that is holding down a job and doesn't appear autistic is difficult. Just remember that there are lots of others who feel or have felt that way, you are not alone. I hope things improve soon, take care of yourself.

Hey, I'm 18 and only found out about my autism diagnosis at age 16. It having been diagnosed when I was 10, but my parents withheld it from me. I also experienced anger and frustration surrounding what if I had known about my diagnosis too. In my country, education is seen as critical, and having not put in the necessary precautions (for my autism), I was extremely annoyed and felt like I didn't perform to the best of my ability for university entry. I was diagnosed with mental health conditions at the time, too, the assessors not knowing about my autism. With this, my past mental health problems were compounded by the anger from my lack of knowledge of my diagnosis, which led to spiralling.

Firstly, I would say you should not blame anyone for not having realised it earlier because the older you are, the more difficult it is to diagnose autism due to symptoms being less obvious. Furthermore, I think remembering that many other people (like me) have experienced a similar thing as you brings some grounding. Moreover, taking into account numerous people currently and in the past who lived with autism throughout their whole life but never had been diagnosed at all (whilst still suffering improperly addressed difficulties from it), should bring a wave of thankfulness towards your diagnosis at 41.

Furthermore, I think remembering that in reality you do not have a time machine and so you cannot change your current situation is essential. Consequently, the best way to move is forward and to self-research your symptoms, recognise them, and learn ways to adapt to them. I remember as soon as I had cooled down after the period of anger towards my late being told of my diagnosis, I researched and highlighted the symptoms of my diagnosis in me, and looked up methods to help adapt to them.

Whilst autism is not only a sensory matter, but also a mental matter, I found mindfulness essential. Not necessarily meditating like a monk, but rather day to day being more aware of my emotions and regulating myself was essential. People with autism have a higher chance of alexithymia - difficulties recognising emotions, so I made sure from time to time when I could, to realise that maybe I am extra sensitive to this matter due to my autism so I needed to take a step back, orr that I feel a certain way towards a thing and so I need to act accordingly to how I feel for me - not necessarily with the same actions as others would do.

I think also remembering that life is a gift is essential, so regardless of circumstance, one should try to make the most of their living and do the things they most enjoy. Whilst it may be difficult right now, good eventually comes, as it has with struggles experienced by everyone beforehand.

Hey, I'm 41 too and diagnosed end of last year. 

Try write some stuff down, or I doodle, it helps me relax and feel calm. I feel a bit silly saying this, but having a difficult week and one thing that made me feel good was making a spreadsheet of all the episodes of a podcast I was listening to, so I could see easily which I had listened to and which I hadn't -it's Divergent Conversations, and I had jumped around the topics as I needed them. I colour coded sections and everything. When it feels too much, hearing people talking about having the same struggles as you can ground you. 

I've also copied this from a mods post, they are very good at noticing when people need an extra helpline. 

----------

The National Autistic Society does not currently operate a crisis or emergency service. If you feel you are at risk of immediate harm, dial 999 or contact one of the mental health crisis lines listed on our Urgent Help Page: 

https://www.autism.org.uk/what-we-do/help-and-support/urgent-help.

You could call your GP and ask for an urgent appointment – they can help you get the right support.  

If it’s not an emergency but you’re still struggling, speaking to a health professional can help. If your GP is closed, you can call 111 for NHS support. In England, Wales and Scotland, you can now choose option 2 to speak directly with mental health professionals: https://www.nhs.uk/nhs-services/urgent-and-emergency-care-services/when-to-use-111/.  

Samaritans | Every life lost to suicide is a tragedy | Here to listen

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So keep trying, the start is like being spun round an a rollercoaster, but it can settle down again. Take one small step at a time, use the emergency helplines like Samaritans to get you through a dark patch. 

It can feel like being in a dust storm, and you can't see your own hand currently, but wait for it to settle so you can see again. Find little things to keep you busy, even those adult colouring books to keep your brain occupied till your nerves have had a chance to calm again. The spring photos are nice to look at, but find what works for you. 

Take care of yourself.

 I don't think  I can do this

You need to make some space. Anything that doesn't need to be done, put off for a few months or longer. Don't feel guilty. Just leave stuff if it's not essential. Take away as much mental load as possible. If you live on beans on toast for 6 weeks it won't hurt. Make things simple. Leave the garden, you don't need new clothes, housework, etc.

Try to stop taking everything so seriously. This worked for me. If you work, don't lose your job, but don't treat it like life or death and the mist important thing ever. Do your hours but as soon as you leave forget about it.

Try to find at least one thing a day you like, it doesn't have to cost anything. 5 minutes on the garden listening to the birds watching the clouds, or a nice bath, buy a new plant, or some chocolate, or your favourite drink. Whatever makes you smile. Don't feel guilty for treating yourself. Try to bring yourself into the moment when you for it. Just for a few minutes focus just on what you are doing, the rest doesn't matter.

Also try to make a list of the good things. There will be some. They can be a small, I have a comfy chair, I have shoes that don't leak, I have a nice coat, I have food in the fridge, the heating is working, I have clean water and stuff to drink, I am healthy, I can see, hear, I have internet access, etc.

You may find that there are lots of good things to be grateful for and you are zooming in on the bad. There might not be that many bad things. I do this, I tend to fall for all the cognitive distortions, it is a real problem. Sometimes it helps to try to get some perspective. 

Being unhappy feels all consuming, particularly if overloaded, confused, worrying and trying to make sense of things. Burnout and depression loom similar and can overlap. But make some space abd do something nice for yourself.

I understand. Late diagnosis is. Be gentle with yourself and take it a day at a time.