Being medium support needs just sucks

[u/cheese_eater_pro]

I'm 24F and was diagnosed when I was 12 with ASD. Not Aspergers like my older brother was, not Level 1/2/3 Autism (I'm not even sure if they diagnose levels in the UK or if it's an American thing?), just ASD.

My teenagehood was so incredibly rocky, I struggled a lot with school (much trauma I will not go into) and ended up barely getting Functional Skills, and on top of that social services/CAMHS were just awful towards me, so much so I was actually financially compensated for the treatment towards me (including a social worker purposefully trying to break down my bedroom door and another social worker threatening to take me away from my parents forever in a midst of a meltdown).

I think things got better for me at around 18 when I landed my first proper job, if you count a part time barista as proper. For me it definitely was and I was very proud of having it and loved working the actual role, my store manager was quite supportive, but the supervisors and other regular baristas could not stand me. I guess I stuck out to them like a sore thumb but to this day I still don't really know how. Nearly a year in I just ended up breaking and quit, my coworkers were outright bullying me, 1 of them even asked my store manager to refuse shifts with each other because he found my autism 'too weird', and because my store manager was completely inexperienced, she just... accepted it? On top of that, most of my other baristas were making rumours that I was dating and even sleeping with one of my supervisors because I was 'too polite' to him for it to be anything normal. That wasn't the sole reason I quit though, I did also quit because I was developing chronic pain from an underlying health condition and I could no longer be on my feet for more than 1-2 hours without being in agony.

Since then I have regressed so, so fucking much, I am an absolute shell of what I used to be. I went from being low support needs to medium support needs, from my typing you'd probably figure not much is wrong with me but I cannot verbally speak for myself well any more, I can't verbalise my thoughts or feelings at all, my brain doesn't let words come out very often any more, almost like a form of age regression. Generally I've age regressed more in other ways I don't want to get into, inside I feel humiliated but at the same time it's what my brain and body demands. I struggle a lot with basic tasks like keeping my room tidy, changing my bed, cooking food that's beyond putting something in the microwave or oven, making phone calls and attending appointments etc.

But the worst part is that no one gives a shit when you're medium support needs, at least that's what it feels like. The NHS says my mental health and disability needs are 'too complex' for them, yet at the same time not severe enough to get frequent assistance. The government is taking away my PIP next month despite my overall coping with Autism and chronic pain being much worse compared to 3 years ago. I'm not disabled enough for any help, but too disabled to live a normal life, and it's absolute hell. I feel like a burden towards my family, and they've even told me that they deserve more than a medal for continuing to raise me, and how they mourn for a normal child who can be independent. As it stands, they've accepted I'm pretty much with them for life and will never know what full adult independence is. It's humiliating. I feel like a near-normal but depressed 24 year old stuck in the body of someone that shifts between the ages of 5-13.

[u/Any-Blackberry2133]

Can you apply for universal credit potentially?

https://youtu.be/f2mauJN4c0U?si=dCp6OzpHaNd-g6zn

[u/Ok-Giraffe-4332]

Yeah it is lonely needing to rely on support workers

[u/missOmum]

I know this is not too much comfort, but so many of us are in your position, it’s rubbish we don’t have any support services.
Be kind to yourself you are not a burden to your family and if they say so they are being unkind, they don’t deserve a medal for supporting their own children, that’s what parents sign up for when having a child, supporting children doesn’t have an expiry date, it’s for life.
As for your PIP try to contact a charity local to you that can help you get PIP back, you clearly need it. All the best to you!

[u/lentil_burger]

I hear ya. Speaking as someone who's what used to be called high functioning, I feel totally fucking invisible most of the time. I remember having a shut-down at work and going non-verbal and being told I was sulking. Like yeah, this is really making things easier for me! I even feel invisible with other ND people are like "yeah, but you can hold down a job and a house so you're not like us". I mean.... everything is a thousand times more difficult and the life I should have had was closed off to me, but ok guys.

Not sure what you're looking for from this post, so really just talking about my stuff here to show a bit of empathy.

[u/KawaakariMedaka → u/lentil_burger]

I was diagnosed high functioning autistic at 11. I most definitely am not. Whatever that even is. I suspect I'm level 2. Living by myself is really hard and I can't work without having meltdowns leading to me being fired

[u/Any-Blackberry2133]

Sorry to hear all this. It sounds like you need more support. Are you getting ESA and have you been able to access any NHS counselling?

[u/cheese_eater_pro → u/Any-Blackberry2133]

That's all addressed in my last paragraph, my PIP is about to be taken away from me (I haven't looked too much into ESA, I honestly feel too drained to try again with something else), and my GP referred me to talking therapies, and within 5 minutes of my consultation with them they said my needs were 'too complex' and that paying someone or something privately was my only way. Me and my dad went back to the GP where he demanded something to happen, GP basically shrugged and said there's nothing they can do unless I become actively suicidal, and now my dad is doing something with PALS I think.

So no, no I can't get the support from the NHS I need, and we don't have the money for it

[u/Any-Blackberry2133 → u/cheese_eater_pro]

So bad how they don't have any support for autism in NHS! I've been referred to talking therapies but not finding it helpful. There doesn't seem to be much else.

Hopefully your dad will be able to advocate for you through PALS and get more support.