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!!!
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.
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 :)