Diagnosis. Autistic burnout? Mental health and eating issues- Therapy -

A couple of thoughts for you.  I am sorry you are finding things difficult and it's really positive that you are researching autism and thinking critically about things.

Firstly - legal protections at work.  Whether you are diagnosed or not is wholly irrelevant from the perspective of the Equality Act 2010.  To be accorded protections from discrimination, harassment and victimisation, or indeed to trigger the requirement to make disability related adjustments, the act does not require you to have a diagnosis.  All that is required is for you to demonstrate an impairment - which in your case you clearly can.  Having a piece of paper saying you are autistic helps, but you don't need it.  It is enough for you to explain (in writing if that is easier) what impairment you are suffering and how that places you at a substantial disadvantage compared to employees without your difficulties to overcome.  That triggers a requirement for them to make adjustments to the physical environment, working practices or other matters in order for them to mitigate as far as is reasonable in all of the circumstances your disadvantage.  As a starter, I would ask for your employer to refer you to their occupational health provider.  I would also suggest referring yourself to Access to work (https://www.gov.uk/access-to-work) as they may be aware of support organisations in your local area able to assist you.  They will also usually draft a report that you can provide to your employer.

As for burn out, I am going through it at the moment and have done before I was diagnosed (I was diagnosed very late in life). A diagnosis will help you - I too have had the nonsensical "what difference will it make getting a label" discussions - it helped a lot thanks very much as it allowed me to make sense of life and stop masking! Part of the reason you are burned out is because it is more likely than not that you are masking all the time and trying to be "normal".  All of that takes energy and eventually the battery will run out.

I too struggle to say no at work, but I have learned to do it.  It's harder when someone you like is asking, but you need to say no.  Plan your day and make sure you account for all your time - that makes it easier because you can show your schedule to your colleagues and say "look, this is what i have on at the moment - I just can't do anything to help".  If you are not using your annual leave, take some.  You don't have to do anything - a day in bed will probably help if you are burned out.

Exercise and special interests help too (though I can't find the energy for either at the moment).  Have a look online for information on energy accounting - that might be a way of helping you to recover and will also help you from the point of view of getting a diagnosis.

If you haven't already, go and see your doctor and ask them to refer you for an autism assessment.  They will probably ask you to complete an AQ10 questionnaire in order to obtain the necessary funding - but the sooner you do it, the sooner you are likely to get assessed.

Finally - it does get easier once you are diagnosed.  Don't carry on struggling - you need to reach out and get support  coping with the world when you are likely to be neurodiverse.  Don't wait for it to get better by itself - it will be a lot easier and less painful with some professional support.

Glad to know everything is aligning in your life, keep it going, strong and steady. All the best!

Hi Noah, Thanks for your advice. A lot has actually happened since this post. I have since found a new job and moved back to the UK (to Cambridge where I used to study and feel at home). I have officially been diagnosed now though sadly this has not really resulted in more support. I wish I could say things were easy right now- they are not but I did change a lot of things. I gained back most of the weight in quite a traumatic way and lost it all again unintentionally with the stress of applying for jobs, moving and then working way too long hours in my new job and just getting stuck in a routine again. It's sad- l've recently started expanding my diet again but digestive issues are making it so hard and it's just frustrating that I cannot just go for convenience options like most people without feeling very ill and will probably have to watch what I eat due to digestion for rest of my life. 

My new job has been crazy busy- I was working most weekends and often only got home at 11 pm or later. I'm exhausted and it is not giving me the intellectual satisfaction or the qualification I want. Instead it is sapping my energy and time and taking time away from applying for PhDs and taking care of myself. But I know that without a job I would struggle too (apart from the financial side). I did send in some last minute PhD applications- I believe this will help me a lot as it's something I have wanted to do for years now. I need a purpose and a goal to focus on. Right now though I'm overwhelmed. 

The idea of a mental health checklist sounds appealing but in practice I have no idea how to put it into place- I just do not have the time - with the work and trying to apply for PhDs too, I barely have time to sleep more than 3-4 hours a night and go buy food. So I don't know- and if I do have some time off I am physically so depleted that I don't think I would even be able to do anything nice. 

But things are at least moving forward. Hopefully not to the next disaster. but I think I need to focus on the PhD applications to sort out the future- though this has added stress, this is what broke me from my recent rigidity with food as I was so desperate to go on a trip for an interview. I never thought I would manage to travel- I have avoided all but essential travel for a while now- but I did it for the interview too - I did many things that I never thought I could do. I think that just shows that if you really want something you are able to do things you never thought you could . The difficult thing is that it is often hard to know what the right thing to do is... if i knew then I would just do it, even if it was hard. but I think therein lies the challenge, it's not black and white or right or wrong. There is a grey zone, there is no one way of doing this- this makes thins difficult (like my issue with food etc).

Sorry for rambling on so much. I really appreciate the support I have received from everyone on this community. I don't think I could have done what I did without all of you. It's been so comforting to know that I am not alone and that there are nice and supportive people in this confusing and sometimes hostile world. 

Hi Ann, I am really sorry for your situation but I can also see you're a fighter and it is important to continuously work the road for improvement on that situation. Some of the people with mental health issues I've see often tell me that they work best following a mental health checklist, it can be hard in the beginning, but after sometime you'll get the hang of it. I really hope you get better and never give up, the road may be long but you're already winning it.

You might want to consider talking to occupational health or HR, rather than your manager initially in that case. See if there is a disability support group in the university or a union that may help you. Being autistic is a legally a 'protected characteristic'  for which 'reasonable adjustments' should be made.

Remember your autism gives you strengths of value to the university. Robert Attwood joking calls universities 'day care' for autistic people, because we can pick our way through detail, think logically, are passionate about our subject and can hyper focus, we are perfect researchers. It's in the university's interest to look after you.

It does sound like you need to say 'no' to a few things though. We get tired, even get strange muscle pain and burn out with too much pressure and sensory bombardment. Try googling 'energy accounting', you might find that useful in avoiding the burn out.

For interest, if you have Amazon Prime you might find the film about Temple Grandin's life inspirational. She didn't speak until she was 4 and they told her mother to stick her in an institution because of her autism....but she's got a PHD now and world renowned for her work in cattle management and as an autism advocate.

Dear Dawn, 

Thank you for your reply! I am looking into fast-tracking a diagnosis. I do work in a research lab (in a university hospital) but at this point I am not quite sure what to tell the head of the lab and my supervisor as I have lost trust and suspect that I have been exploited (I did 6 months unpaid work, lots of delays in getting contract/ paid etc. and I suspect I have been lied to about some things- though I am not sure if I may have misread some of what they said). Thanks again :) 

I'm sorry you are having such a tough time and I hope things turn around for you soon. Don't worry about the length of the post. We are autistic  lol. Many of us write and read the detail :-)

I have to say I strongly disagree with your MH team that it does not matter whether you are autistic or not. It matters a very great deal. I find it a bit odd that they would find anyone's desire for a proper diagnosis of anything to be a 'bad' thing. It's not about a label, it's about knowing what the issue is in order to deal with it properly. Whilst labeling people with anything can put them in boxes which deny individuality, being correctly identified as autistic is life affirming for many and can certainly put them on the path to the right solutions. It did for me, for sure.

Your autism could radically affect the treatments that will and won't help you. Talking therapies are generally not much use to us unless adapted for autism because the thought processes are different and there are meds which are contraindicated for autistic folk, or from which many of us derive no benefit. 

None of us can diagnose, but what you are describing about work, does sound like burn out to me. I have experienced that too. For that you need good old fashioned R&R.

You say you work in research in a lab. In a university or a private company? I ask because I am wondering whether you can get a faster route to assessment via work. I have a friend diagnosed by her university's in-house clinical psychologists when she was a student. Or it may be that your OH department might think it good business sense to pay for a private assessment for you. Are you able to open up to your boss or OH? I know, it depends what they are like. My boss was very supportive throughout the whole process, but then he's had a whole career working with kids on the Spectrum. Not everyone would understand.

As for the food. The answers to that might look different in view of autism too. An occupational therapy approach might help you manage some of the sensitivities around food and a dietitian might help you balance up what you build into your food routine. There's no point trying to ditch the routine, the routine is at least getting something in you. If I didn't have one, I'd just forget to eat as the hunger trigger isn't there much. Eating problems for autistic people is often not the same issue at all as for NTs and has more to do with hunger triggers and food sensitivities I.e. neurological, rather than anything psychological at all. 

I hope you get your answers. They matter.

I've just been diagnosed and I relate strongly to a lot of your work issues - taking on too much, people taking advantage and the feeling of it all being a bit too much. I feel like I've lost a bit of enthusiasm due to all the pressure. I had a short period of time off last year when everything got a bit too much for me to cope with. Since then nothing has really changed and I'm starting to feel a little overwhelmed again. One good thing about having a diagnosis is that work should take things more seriously if I identify and request reasonable adjustments to help.

The way I looked at my situation was that I needed to find where I was on the map before I could plan my route out of the issues that I was having. I think I'm still probably processing now that I have some of the answers, but I'm hoping that I will now be able to start making some changes now that I have a better understanding of myself.

Good luck with your journey.