• Replies 15 replies
  • Subscribers 88 subscribers
  • Views 5462 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Newly diagnosed: Feeling lost and impaired

Ann :)

Hi, I received the offical diagnosis for autism this week at age 25. It wasn't a surprise as I have had a few months to get used to the idea however I still feel unsettled. When I first realised I might be autistic it was confusing but definitely positive as I felt less alone and it helped to understand why I feel so different at times. However now I am struggling with having the official diagnosis. It seems to make my differences more noticable and it makes me feel like I am 'impaired' as I am now more aware that many of the traits that I have viewed as 'normal' are in fact not. I suspect my mum is autistic too and I never had many friends and a most of those are neurodivergent too, so I think my quirks were less noticable because I grew up surrounded by other neurodivergent people. I also feel more anxious about social interactions as I have become more aware that I am missing out on a lot of cues etc. I think I often just assumed that most people were facing challenges that I am facing (like not being able to focus in an office environment etc or social interactions being tiring) but that they were just better at hiding it/coping with it. 

I think part of me hoped that once I had an official diagnosis I would be able to access some more support (I especially need help with issues around food and struggles with change) but so far it looks like there is not really any support available- I really just want to talk about the diagnosis and what it means to someone but it's not so easy to find someone to talk to. Do you know if there is anywhere I can reach out to to get some more support? The most urgent issue for me are my issues with digestion and eating as I have recently unintentionally been loosing a lot of weight again and I am at loss as to how to deal with this. 

I actually am also a bit worried because I told my boss at work about the diagnosis and I am worried that I should not have. I only just started this new job and I love it and I don't think I will need any adjustments at this point (I work as a scientist in a lab so my work is my special interest and there is quite a lot of flexibility in terms of working hours and also where I work from). I wasn't sure if I should say anything at all but the head of the lab kept telling me he wants us to feel like we can tell him about anything that could impact work even from personal life and I just wanted to be honest. I think he was very surprised and I feel like I dropped a bombshell. He is extremely friendly and supportive but I still worry that now he will view me differently and I feel stupid for saying something as at this point I do not want that information to go any further and I am not asking for any adjustments. What have other people's experiences been of disclosing the diagnosis at work? 

I'm sorry for rambling on, it's just been a lot to process and I did not expect to react this way to the diagnosis. Many of my autistic traits make me good at my job and it's who I am. But somehow since getting the offical diagnosis I feel more weird than ever and just keep having this feeling that I am now labelled as 'impaired', even though I would never think of other autistic people in this way and from a rational viewpoint I know that I'm just different- how can I shake this feeling of brokenness? Why does our society have to label being autistic as a 'disorder'? I am finding everything very hard at the moment as I have gone through a lot of change and I am just exhausted (went through tough time at previous work place, then found a new job while still working, moved back to UK from abroad, then started new job with no break at all...). 

I just wanted to share some of my worries that I had since the diagnosis and find out about other people's experiences- ie how did you feel after getting diagnosed and how did you come to terms with it all? 

Thanks so much. 

Ann 

Parents

  • I also struggled more than I expected with my diagnosis (also expected). Eighteen months down the line, I think I still haven't completely come to terms with it. I also feel "impaired" or "disabled" in a way I did not feel before, even when I was struggling with  years of severe treatment-resistant depression (which may have been burnout-related) and I don't know what to do about that. And I don't feel that my autistic traits really help me in my job or elsewhere, quite the reverse, so it's hard to find positives in it for me. What I'm trying to say is give yourself time to process it. One week is really only the start of the journey.

    Unfortunately, there is very little help available for us. If you just want to speak to someone about how you feel, it may be worth seeing a counsellor or therapist. I would suggest being seen privately if you can afford it, as therapy on the NHS is limited, has long-waiting lists, and they will try to guide you to CBT instead of more open approaches.

    I don't have any real advice about work disclosure, but I doubt you handled that worse than I did! I wrote an article for a Jewish website about my experiences being on the spectrum in the Jewish community. It was published under my real name, with photos of me. Naively, it didn't even occur to me that people I knew might find it! A number did, including my boss. There weren't any negative repercussions, thankfully, although I'm not sure if it's helped him understand my struggles in the workplace.

  • in reply to Luftmentsch

    Thanks- your reply made me feel better- I had to laugh (in a kind way) when I read about how you disclosed about your autism to your boss- I could see myself doing something like that too :). I am glad that it worked out ok at work. 

    I talked to a GP this week and she said she would send me a link to self-refer for CBT. The link hasn't arrived yet and in the past the counselling I had was not of much use (and sometimes even seemed to make things worse), though it might be different now that I know about being autistic- I will see how it goes. Like you say, it would probably be better to see an autistic counsellor/ someone experienced with autism but I need to see if I can afford that. 

Reply
  • in reply to Luftmentsch

    Thanks- your reply made me feel better- I had to laugh (in a kind way) when I read about how you disclosed about your autism to your boss- I could see myself doing something like that too :). I am glad that it worked out ok at work. 

    I talked to a GP this week and she said she would send me a link to self-refer for CBT. The link hasn't arrived yet and in the past the counselling I had was not of much use (and sometimes even seemed to make things worse), though it might be different now that I know about being autistic- I will see how it goes. Like you say, it would probably be better to see an autistic counsellor/ someone experienced with autism but I need to see if I can afford that. 

Children