Published on 12, July, 2020
Hi,
I am 24 and I have been struggling with mental health and eating issues for some years now. Recently someone suggested that I could be on the autism spectrum- when I started reading about it, so much of it resonated with me: All my life I have felt like "an alien", struggled to fit in and found social interactions especially in groups difficult. I have very strong interests and I tend to pursue one of these at a time to the exclusion of almost everything else (usually this is science). I also remember having to work up the energy to put up one of my 'roles' ("social/smiling me") for social situations in the past- in recent years I have removed myself from most social situations that would be more difficult for me to manage.
I am currently struggling a lot with mental health and eating issues- I have always had sensitive digestion and been a bit fussy about food, however a few years ago upon making some changes to my diet, the digestive issues got worse and my relationship with food became very complicated. I end up cutting out foods from my diet for fear of digestive issues and then end up eating very few 'safe foods' in quite rigid routines. When I get very underweight I eventually end up force feeding myself back to a normal weight (suffering digestive distress etc), then once back to a better weight I just want to feel good and the cycle starts over again. Food decisions for me are super complicated- I think about them the same way as I think about a scientific experiment (consider all options, angles, nuances, possible outcomes etc.). I have recently realised that I end up loosing most weight when I become particularly absorbed in my scientific research, as I simply do not want to deal with the food issues/decisions and just end up eating the same foods in the same rigid routine over and over so that I have to think about it less. I have now realised that no matter what weight , I always have quite rigid routines/rules about eating (this could be anything - I even had phases of having to eat 2 pizzas, 2 desserts and only sweets. no fruit or vegetables...). Weight/Shape concerns are not the driver behind these problems.
Has anyone else had similar issues around food?
I am currently completely physically and mentally depleted- I moved, started in a new lab and I worked extremely hard, focusing on the lab/research to the exclusion of all else. I also struggle to say "no" and always want to please so that I end up accepting more and more projects and work and get overwhelmed. When my supervisor or someone asks me if I can/want to work on another project/help out with something, I feel compelled to agree (For me the assumption is that if they ask me this, they in fact want me/expect me to do it- though someone recently explained to me that people can sometimes just ask without actually expecting you to say yes... this has been somewhat of a huge surprise/revelation to me). I also think I may have been exploited at work, which has resulted in additional financial and emotional stress and uncertainty for the future.
I lost so much weight and I am mentally so exhausted that I just feel completely incapacitated. Once I was able to take a short break, I just collapsed and could not do it anymore. I have even lost interest in science and my research at this point as it reminds me of work and I just do not want to engage with real life at this point. I am currently on sick leave. I feel that I simply cannot cope with life. All I want to do is be left alone at home.
The idea that I might be autistic has given me a lot of comfort as I feel like if this is the case, I would not be so alone, finally belong somewhere and also I think it would really help me allow myself to be more myself. Putting on a mask for others and always trying to please is very exhausting.
I saw the mental health team here - they did agree that I could be autistic but said it would take very long to get an assessment. Also they felt that maybe I was "label seeking" and "trying to get certainty" and that in fact it didn't really matter whether I am autistic or not.... - I am always concerned about label seeking (though I do feel like a lot fits), however I do feel like better understanding myself and the root of the problem may help me better deal with it and put in place some safeguards to prevent future burnouts. I am hoping to eventually get assessed.
The mental health team said that they think I will need to attend the day clinic (so this would not be specifically for autistic people, but just the general mental health ward)- the idea stresses me out and I am not sure how helpful it will be and whether having to be around people and in group therapy all day will not just make me more burnt out and exhausted?
Does anyone have any experience with being in a day clinic/ inpatient for mental health issues in a setting that is not specifically designed for autistic people? Did you find it helpful or just more exhausting to have to deal with group therapy, change in routine etc?
I was inpatient before (3 years ago) and I don't think it really was very helpful at the time though I am not sure why... Part of me thinks that just being at home, removed from the stresses of life is the best way to heal, but I am not sure. I do feel a bit more energised after 3 weeks off but still extremely drained and nowhere near in a fit state to go back to work and real life.
Has anyone else had similar experiences with "burn-out"?
I am sorry for the super long post - there are simply so many issues that I am struggling with at this point. Any input would be much appreciated! Thanks!!!
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.