Newly diagnosed: Feeling lost and impaired

Hi Ann, I'm sorry you are feeling all this at the moment but I think it's a natural reaction to such a huge change in your life. It's a lot to process. A lot to adjust to. A lot to take in. A big part of ASD is change, we don't like it and struggle to accept it. I felt the same as you after my diagnosis, it felt good to have the answers but it was hard to adjust to and I was in the middle of school at the time which made it harder.

Sadly support is pretty non existent for us and I would suggest you see a counsellor, someone who you can email or speak to when you need to. I think the NHS wait times are extremely long so maybe go private if you can :) 

We are all here for you as well, so if you need to talk or vent then please do and we will listen, support and offer encouragement.

We are all in the same boat and understand each other.

Hope this was of some help Ann

xx

I hope the CBT works, but it tends not to be effective for those of us on the spectrum. Unfortunately, the NHS tends to refer people for CBT in the first instance, which isn't always appropriate.

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. 

I did a lot of microscopy, immunofluorescence and laser scanning confocal, and a tiny bit of electron microscopy. Microscopy suites are very comfortable places to be, apart from the inevitable stiff neck!

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. 

I’m really glad that you’re feeling better about this tonight  - that’s great

I think in the circumstances you’ve coped incredibly well with so much change and extra pressure - there’s bound to be moments when the worry and self doubt etc creep in sometimes - you’re only human! Your workplace sounds excellent too - which is wonderful. It’s going to work out well I’m sure. 

Hope you have a good week next week - sounds like there are so many positives for you to build on :) 

Kate x 

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. 

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. 

Thank you so much for this beautiful reply- there is so much truth in what you are saying. I think you are right, it will take some time to adjust, but hopefully with time the feeling of 'brokenness' will go. 

I can totally relate to saying things and then later thinking "why on Earth did I say that?". I think it will be fine with the head of lab at work. He sseemed startled and probably had not expected it at all but from what I can tell he is an extremely supportive and also very intelligent person so hopefully knowing that I am autistic will not change how he sees me. It was a bit awkward and I am not quite sure how he took it as I am not so good at reading people but he did say that he would try to support me in any way he can and he said some other nice things so hopefully once we are both over the shock of the news and get used it it will be ok. I asked him not to tell anyone else and also explained that I did not want this to change anything and that at this point I don't feel like I need any adjustments. I wouldn't have felt honest not telling him which is one of the reasons I said something but I still worried afterwards whether it was the right choice. I can't change it anymore now anyways though so hopefully it will all work out fine. I really love the environment in my new lab- I had been quite anxious about meeting so many new people but it has gone so smoothly. I feel supported and I am interested in the topic too. 

Thank you so much for the kind words- I really hope that with time I can build up my self-esteem and become more accepting of myself and of my quirks and differences. I do like some of my weirdness :). I am feeling a little better already after having had some more sleep on the weekend. Best xxx Ann 

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.

"I think I often just assumed that most people were facing challenges that I am facing" 

This, absolutely, I thought I was normal too until earlier this month. I've just turned 50 and have had a diagnosis too. I feel everything you have said in your post. It really is a mindf**k; in all of those ways. I can only guess, but I suspect your boss will be cool with it, a bombshell it might have been, but one he will be thinking how best to keep you motivated, engaged and well. 

I used to have an eating problem when I was your age too, especially when eating in public. I fixed mine, mostly through surgery, (I couldn't breathe too well through my nose after getting punched many years earlier, that and the anxiety caused me no end of problems). You should really speak to a doctor, as it's hard to offer advice without knowing more about the digestive problems you're having. Overthinking can cause a lot of problems though, getting older helps and giving less of a *** about what people think of me. (sorry if I got this completely wrong but I'm guessing). 

The rest of the feelings I can't say are normal, but I can say I'm having them too, but I hate how it's called a disorder too, it saddens me that I will live this life not knowing how a neurotypical person thinks or feels during normal conversation, or feeling that bond of friendship that neurotypical people feel too. (Oasis - Columbia & Naked Raygun - Broken things lyrics seem quite apt at the moment). 

Everyone tells me it's not a disability, and that I am still me, but I hate this as I feel completely different and of course, no one else understands what it feels like to be diagnosed so late in life. I have my official report a week Tuesday, I hope there is some support available. 

Hello, I was diagnosed in May this year age 55 and felt very unsettled at first. It took me a while to process it! It’s a big thing so don’t rush and take one day at a time. I now feel good about who I am. I’m proud to be me. I’m lucky as I’ve got a supportive partner and Family.Re job I told my boss about my diagnosis and she was very supportive. She’s also helpful in that she has put me in a less busy area of the office. I’m still working my way through it all but the only way is up. Take care and all the best.

Hi Ann,

I think it would be strange if the diagnosis didn’t trigger some of the feelings and thoughts you’re now experiencing. I think your reaction is entirely normal - you’re bound to feel some measure of discomfort because this is a change: it’s the official confirmation of what you suspected and to be looking at your life with this slightly adjusted perspective is naturally somewhat unsettling.

But in essence nothing has changed. You’re still the same person and you still have the same strengths and challenges. The word ‘disorder’ is awful and you understandably shrink from that word. But remember - Albert Einstein had this ‘disorder’! Anthony Hopkins has this disorder as did Leonardo, Charles Darwin, Henry Cavendish, Sir Isaac Newton, Dr Vernon Smith etc etc etc. The list of gifted scientists, artists, writers goes on and on. If that’s ‘disorder’ I’d say we need lots of disordered people in the world! I don’t buy into the idea of autism and being gifted as being the only way for us to feel good about ourselves - but it is a fact that lots of autistic people make a huge contribution to society and to their communities and families  - in big AND small ways. Being different isn’t being ‘broken’. And frankly all human beings are flawed and struggle in one way or another - not just autistic people.

And as you say - it’s likely that being autistic has played a useful part in your academic success and you’re ability to be good at your job. In very many ways it’s an ASSET to you - even though it also makes aspects of your life more challenging. 
I know of lots of ‘broken’ people who have no autistic traits whatsoever! 
You’re not broken Ann - you face the challenges of your life with courage - and you should give yourself credit for that. Being autistic is not easy but you work at doing your best to live a full life and contribute in your work and friendships. Just from my contact with you on here I can tell that you are an intelligent, kind and compassionate human being. You should feel proud of the person you are. 

I’m sure that you’ll soon overcome these initial feelings of disquiet from your diagnosis. Nothing has changed in terms of who you are. You’re the same person you always were - but in making this discovery you can use it to further understand how you can tackle and understand some of your challenges more positively so that they are more manageable. 

in terms of your work and telling your boss - well - there are plenty of autistic people working in the field of science so I doubt it’s as unusual as you feel it is. He’s an educated person so I doubt he’s ill informed about Autism and the fact that you can be a good scientist and also be autistic. It’s very common. I can see why you might panic that you told him before you were probably wanting to - I do this quite often! I’m a very honest person and often I say things to people and then panic afterwards - thinking ‘why on earth did I say that!’ and then worrying terribly about whether or not I should have said it, and so wishing that I hadn’t! My husband has to give me loads of reassurance when I do this as I can’t stop worrying about it! 
So Ann I want to do the same for you: I’m sure it’s ok! I’m sure your boss is intelligent and educated and that you’re not the first employee/co-worker/friend/family member he has ever met who was autistic. 
His main priority will be: can you do your job. It strikes me that you are more than capable of acquitting yourself well in your role - and that’s what will matter most to him. And it might be very helpful if - when it comes to social events - he knows that you’re autistic - as then he will not misread any possible reticence from you in that regard as being unfriendly etc - but will better understand your preferences in that way. 
It will be ok Ann - and you don’t need to worry. Your openness with your colleague  is a credit to you - and I’m sure he’ll appreciate it. 

Even in the VERY SMALL possibility that your colleague is a jerk and doesn’t understand (which is so unlikely) well - that’s his problem and he should educate himself! And if he DID have any prejudice about the ability of autistic people’s ability in the workplace  then you’re about to prove him wrong! In which case you’d be doing all of us a huge favour :) 

Be proud of who you are Ann. You’ve worked hard to get where you are, you’ve studied hard, challenged yourself and achieved a great deal - and you’re still young and have so much more you can do and contribute. Yes - you have your struggles and being autistic isn’t easy - but you should have no shame about that - it only makes the things you achieve so much more of an achievement. And I’m not just talking about academic achievement or your work - just day to day life is challenging enough - especially for autistic people.

You are not broken - you’re a survivor of myriad challenges that you’ve faced as an autistic person. That’s a beautiful thing and something to be celebrated. 
I’m mentally raising a glass to you Ann - because you should celebrate who you are. 

I agree by the way that there is a woeful lack of support for autistic people - and for so many other issues people face as well. Sadly this means we are often left to try and help ourselves - sometimes with quite significant mental health issues. It really should be better than it is. I think most of us end up spending huge amounts of time, effort, research and often money trying to make up for the lack of services in the U.K. it’s not right. Thankfully autistic people are a resourceful and supportive bunch - as this community demonstrates. You’re not on your own - and I hope that helps a bit. 

I hope you enjoy the rest of the weekend Ann. I’m sure you’ll enjoy it more once you can shake the unhelpful thoughts that your diagnosis has prompted. Let these unhelpful thoughts go - they are both false and damaging. 
Be proud of who you are 

Kate xxxx

Hi Ann,

I think generally initially when someone gets a diagnosis of autism, it is scary and one feels angry.  However, after a few weeks (maybe a few months), one comes to terms with the diagnosis.   For me, it took about a couple of months.  I also misinterpret social cues in social settings and that makes me quite anxious. 

No one with autism is 'impaired'.  Think of autism not as a disability but as a different ability.  I think society views autism as a 'disorder' due to the aggression and meltdowns that autistic people have.

I'm sorry that you had a difficult time at your previous workplace and you've not had a break.  If you have time, once a day, take a walk to clear your head.  Taking a walk helps me.  

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.