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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 worked as a bench scientist for 34 years, I'm a molecular/cell biologist. I think it is just about the ideal job for an autistic person. The ability to hyper focus, an oblique approach to problem solving and an enhanced eye for detail are all positive qualities in science. I would not be too concerned about your boss's reaction, but perhaps giving him some information about autism and how it affects you might be useful, as most people are rather uninformed.

  • in reply to Martin

    I do feel much more at ease in the scientific world than in many other situations in life (I'm a developmental neurobiologist). It is much easier to fit in when you can just talk about science with people. I love it. I also love detail ( a little too much sometimes as I can get fascinated by small random details and end up exploring and reading about those). I really love imaging too- the microscope room is so nice and dark and quiet and I love taking images, especially time-lapse imaging. It's very satisfying and calming. I hope the PI will be understanding- I think he will be- but maybe it is a good idea to give him some more information about autism- I will see how it goes, he seems like a very supportive, kind and intelligent person so hopefully it will be fine. Thanks for your reply. 

  • in reply to Ann :)

    Can you be more specific about your eating/digesting problems? Are they psychological from overthinking, or is it something medical that needs professional support? Is there anything advice on here would help with? 

    If you don't want to share, I understand, but I used to think I was making too much noise when I ate, or people were judging my table manners and it just caused the most horrific stomach cramps and anxiety, which if I let it get the better of me (and I did) would become a full on panic attack. 

Reply
  • in reply to Ann :)

    Can you be more specific about your eating/digesting problems? Are they psychological from overthinking, or is it something medical that needs professional support? Is there anything advice on here would help with? 

    If you don't want to share, I understand, but I used to think I was making too much noise when I ate, or people were judging my table manners and it just caused the most horrific stomach cramps and anxiety, which if I let it get the better of me (and I did) would become a full on panic attack. 

Children
  • in reply to Alan

    Hi, I think it is a mixture of medical/physical issues and psychological (stress/anxiety, love for routine, sensory etc). I have had sensitive digestion my whole life, however it has been even worse the past 7 years and I have daily nausea and bloating, sometimes cramps etc (to the point that it keeps me awake at night). I saw several doctors (GP, gastroenterologist) about the medical side of the issues and apart from unexplained hepatitis initially and occasional mild elevations of liver function enzymes (which could be due to starvation), they have not found a cause so it seems to be IBS. These kinds of digestive issues run in my family (my mum, grandma and cousin have similar problems). I have identified some trigger foods like dairy, garlic and onion etc. (low fodmap diet also helped a little but it got quite restrictive). However at this point I have no idea what I can have anymore. Over the years I ended up eliminating a lot of foods from my diet in the hope that this would improve my digestive issues. It did somewhat but my digestive issues never resolved completely and I just ended up eating a very limited diet. 

    I was also referred to eating disorder services but it made the issue worse. I have never been intentionally loosing weight and I just felt like they were trying to fit my symptoms/issues into the label of a typical eating disorder. I was so desperate for someone to be able to help me with my eating issues that I tried to convince myself that they were right and that it must all be in my head, I must be imagining my digesitve issues and I must somehow subconciously have a fear of gaining weight. This was unfortunately not true and it cause me a lot of damage. I suffered horrible digestive issues as a result and also huge feelings of guilt as I felt like I must be responsible for all these issues and for not getting it right . It was damaging and in part contributed to me starting to have issues with binging (I was so desperate to gain weight). 

    I now realise that my eating issues are probably much more related to being autistic. I have sensitive digestion but I suspect stress/anxiety make it worse. I love routine and I now have a tendency to just eat the same meal/meals in the same order/pattern every day. I used to be more flexible but right now there has been so much change in my life that I feel safer just keeping everything the same. I like to have the same brand of foods. I feel anxious about change which makes it hard to change my diet even though I know I have to because I am loosing weight and feeling tired. I am anxious about food triggering digestive issues (ARFID type issues?). I cannot tell when I am hungry or full, which makes it super hard. I struggle with change but when I try to add extra food/new food I sometimes want to do too well and make it worth the effort so instead of making small sensible changes which my digestion could maybe tolerate I try to do too big changes and then end up with horrible gastrointestinal distress. This then puts me off of wanting to do further change. I have also been quite picky with food for my whole life and now realise that I have some sensory sensitivities (eg. cannot do untoasted bread, sauces are hard, soft/slimy things like tomatoes too). I sometimes also like to stim with food. I have had issues with binging at times in times of stress as I lack sense of fullness and then end up trying to selfsoothe with food (also just from my childhood I seem to think that cake can fix things...). Right now this is less of an issue and I am struggling to eat enough. 

    I have worked with a dietitian and she is the one that ended up realising I am autistic which resulted in me asking for a diagnosis and being diagnosed. She has been helpful but I still struggle and she is also fully booked a lot of the time and it is expensive so it is not easy to afford regular sessions. 

    Sorry I feel like I have written a huge response. Not sure if anyone can relate to this. I am desperate to not loose weight all the time. I have ended up severely underweight a few times (almost ended up in hospital a few times) and I have never managed to gain the weight back in a healthy and reasonable way despite trying- out of desperation I would eventually forcefeed myself back to a more normal weight resorting to a lot of junk food and sweet things which is so traumatic and horrible for my digestion. Then when I am physically in a better state, I try to transition to a more sensible diet that doesn't upset my digestion so much and I end up slowly loosing weight again and then the cycle begins again. I also tend to loose weight extremely easily so I suspect I also have quite fast metabolism. I am so so tired of it.