Published on 12, July, 2020
TL;DR - I was diagnosed early but was never given a full understanding of my autism. Now struggling a lot as an adult trying to live independently and need to understand myself better in order to move on, but don’t know where to start. Help??
————-Hi all, newbie here!
So I was diagnosed with autism as a child - started assessments as a toddler but didn’t receive a final diagnosis until I was 9/10 years old. I only went to mainstream schools, with a statement during primary and secondary that was then dramatically reduced during college (which was a huuuuuge mistake but that’s a discussion for another day).
Because I did receive a lot of support early on and because I’m on the “low support needs” end of the spectrum, I never really thought much about my autism before. I lived my whole life being told the dreaded “you don’t seem autistic” comment, but young naive me saw that as a good thing at the time because that meant people thought I was somewhat “normal” despite having a diagnosis that didn’t really bother me.
Fast forward to being an adult, and things are completely different. I completely crashed and burned during college, jumped between dead-end jobs before landing a kitchen role which I’ve been in for 3 years. I thought being a chef would end up being my career, but slowly realised that the environment is completely wrong (sensory overload, lack of routine).
Combine that with the pandemic and having moved out of my parents home into my partner’s flat last year, I’ve suddenly come to the realisation that my autism really does affect me, I just don’t fully know how because it was masked so heavily during my school years.
I’ve completely burned out, looking after myself and our flat is a struggle, I need to leave my job but am scared of jumping from job to job again, I just…. I feel stuck and I think the only way I’ll be properly able to move on is if I start to get a proper grasp of what autism means for me as an individual.
Has anyone else experienced this? How did you come to understand your diagnosis? Any suggestions on resources/coping mechanisms?
Reading your post has really hit me.
Although I wasn't diagnosed as a child (I'm 46) I'm pretty sure I'm autistic and have been referred for a formal diagnosis. I was ok at primary school (very shy and obedient) but at secondary school I struggled massively which led to school phobia and having to see psychologists but still autism wasn't mentioned and over the years this has meant I have told myself for so long that I'm weird which has led to low self esteem, depression and anxiety.
I'm exactly the same as you as people think of me as not 'looking autistic' because I've masked for so many years but this has led to pretty extreme burnout and I've had a couple of severe breakdowns over the years - I'm just on the start of coming out of one at the minute (I've been off work for six months and am just going back now on reduced hours). I honestly thought that when I realised I was autistic it would be like switching off my depression and anxiety and in some ways it is really helping to understand that others feel the same as me and it isn't my fault that I find things difficult it's just because I'm wired up differently to others but to be honest it's still a real struggle.
I now understand that I don't cope well working full time so I only work mornings (by lunchtime I'm exhausted from all the interactions at work).
I'm also now much more honest with my husband about anything remotely sociable (I hate any kind of social interaction) rather than just shutting down or having a meltdown I will explain to him that I just can't face certain things so I just don't go (this has been a massive help) but I still occasionally hear the negative voice again telling me I'm weird which is so hard and makes me either cry or have an anxiety attack.
I too find it difficult to look after myself and my home, I cope with looking after my children and husband but the rest of the house is an uphill struggle but I've learnt to accept that it's just how it is - I try my best and just think that has to be enough.
My problem really is the negative voice in my head but I'm trying to learn to be kinder to myself and I think it's something that would help us all.
Thankyou for sharing your story with me. I’m sorry to hear that you’ve been struggling recently but glad you hear that things seem to be settling down again. Is the part time contract related to the recent meltdown or was that in place before? Is your employer as understanding as they sound?
I have the negative voice too! It freaking sucks, especially when it appears at such a young age so it feels almost impossible to shift. I also have PTSD, which still left anxiety and depression behind after my first round of therapy, so half the time I’m playing a guessing game of “which condition is messing me up this time?” which really doesn’t help. I’m back in therapy again now so we’ll see how that all pans out.
Another thing that also hasn’t helped is that, because of the heavy masking early on, I never felt the need to disclose my autism at work because “it’s not that bad”… Big mistake. Do not recommend. Definitely needs to be fixed.
We don’t have children yet (I’ll be 24 next month) but definitely want to in the future. I do feel like I’d be okay looking after kids but again, the whole home/job situation has me completely freaked out right now. Thankfully my partner’s very understanding and he’s working on trying to understand my autism as well, so hopefully we can work together to find a life balance that works eventually. That, and he’s just as antisocial than I am, so that’s a bonus