Published on 12, July, 2020
I'm new to the forums and also somewhat newly diagnosed (2019) despite a lifetime of serious struggles. The diagnosis was a bit of a rollercoaster, although it wasn't much of a surprise. I was angry that no one had noticed and helped when I was a child as I had pretty obvious signs (communication difficulties, social isolation, extreme sensory sensitivity, rigid routines) but I think being able to talk/mask and doing well academically (high scores in tests but dreadful executive functioning and severely low attendance) meant they just put my difficulties down to bad behaviour.
I was also hopeful that now I might get some support and understanding. But what I have found is that the diagnosis didn't really matter - people still treat me like I'm behaving badly, still judge me for everything, don't listen or make it difficult to get reasonable adjustments put in place and every single piece of advice out there is aimed at the parents or carers of autistic children. There is no or very limited information for me to help myself. I also keep hearing on repeat that at least I can talk, at least I don't have IQ deficits, that I don't have it as bad as others. All of this has just led me to a really bad place where I feel like no one understands how difficult daily life is for me and there is no help and I will never fit in anywhere. I often wonder what is the point in trying to exist in this world when everyday is a battle?
I'm trying to finish my PhD in cancer research because biological science is my special interest but I am really struggling. I am in my final year and I am behind where I would like to be, my supervisors treat me like an infant that can't do anything right and I am burning out all the time and having meltdowns. I can't take a break - the way my funding works is that I would just lose more time and an extension is not possible. The only thing that is keeping me going right now is that in 6-8 months I could have a job where it all gets easier. But now I worry that I won't be able to cope with that either. My intention is to apply for a position in genomics where I spend most of my time analysing genetic data on a computer (which I really enjoy) but what if it is too much and I keep having meltdowns?
I just wondered if anyone else was in a similar position or had similar struggles, and how they managed to cope. Or even if you aren't coping it would be nice to know it's not just me!
Thanks for reading,
Bean
Not a PhD but a BA. This is why functioning labels are tripe it doesn't mean anything to be accepted into university if you aren't able to complete it. With that said, with higher inteligence comes the advantage of being a problem solver, I have started to write my own adjustments request (only I know what I truly struggle with and why) and will be asking my GP to write a letter to the gist of "what they said" that I will submit not long after the start of year 2 if I feel I need it because the 1st year was a bumpy road of extremely variable excecutive functioning.I also had to learn and relearn effective self care because it felt like the work was non stop, if I didn't just call in sick every other week and have a do-nothing-day to decomress and empty the stress bucket I'd have been constantly spilling over into meltdowns and burnout, and then ground to a halt entirely. And a lot of the time I couldn't get a whole day at a time off so I'd split days, and have like 3 hours on a wednesday and 3 hours on a saturday to just do my own thing. It sounds weird to say it because even though I loved doing the work the workload itself gave me a 10 day long migraine towards the end that I kept "kicking the can down the road" by taking masses of paracetemol, and aspirin (didn't really stop the migraine just squashed it into a pressure headache I could just about keep working with) to keep going towards the end. Then when I eventualy stopped had everything done I was happy and yet still had a blow-up type meltdown. It took me about 3 weeks to really level out after that.
I guess what I'm trying to get at OP is that if you can't take whole days off can you at least steal some hours to yourself on a semi regular basis to keep yourself going but at a pace that is at least less draining/more healthier?