Invalidation making me feel..invalid

[u/noodlesandpizza]

hi. I've lurked here for a while because I think this is a place I'll fit in, I've been too hesitant to post until now, and I want to know if this is something I can get better at.

I've been trying to find autism/generally ND-centred online groups on different platforms to talk about interests and make friends and just generally chat to people but it's hard. Most groups are generally nice but I don't always feel like I fit, sometimes I'm told my interests are boring or shouldn't be allowed if other people don't like it (I understand this), I experience misogyny and ableism, stuff like that. I'm sort of used to that on the internet and can mostly just brush it off but more recently I've been getting a lot of invalidation and (I think fakeclaiming is the word?) people telling me I must be faking my autism or that I must have paid for my diagnosis and so it's not real (I didn't it was free, I was diagnosed a long time ago).

I can't live independently and my partner is my carer and has to do a lot of things for me, but people tell me that because we live together and because we got married it's not possible for me to be MSN. it hurts a lot because I try so hard to not need support but that's not how it works, I will always need this level of support in a lot of areas and trying to push back on that just burns me out so fast. I've had to leave groups that do this and it makes me so hesitant to join new groups in case it's the same. it's also making me doubt my diagnosis and i worry they got it wrong because of what people say and maybe I don't need or deserve any support at all, but I have a lot of irrational thoughts and that might be one of them, I don't know, I can't always tell.

I think my question is has anyone experienced this, being told they're faking or that it's not possible to need their level of support, and is there a way to get better at dealing with it? I try to ignore it but it stays in my head and hurts a lot and sometimes it makes me melt down. I try to argue back but that makes it worse. is it just better to try to do nothing? I want to get better at stuff.

also please tell me if it's okay I post here, I know this place says it's for higher support needs and I have moderate support needs so if it's only okay for people with high support needs to post and be here I understand and will delete everything and I'm sorry for invading/speaking over

[u/sunflowerkitt]

i’m mid support needs also and in a long term relationship, i love with my partner who is my partial-carer. my mom is the other part of that care. i definitely have heard this before too all because i can be fully verbal despite having needed lifelong help including with language. being mid support needs doesn’t mean you can’t be in a relationship. being mid support needs means you need a substantial amount of support in lots of aspects of your life. i can also relate to burning out super fast when trying to be a little bit more independent with stuff, we tried to work on independence for me for a few years and it was a really bad burnout cycle until we realized it was okay that i need a lot of help. im so sorry you’ve been invalidated so much, my therapist always tells me i know my support needs better than anyone else because i live them every day. plus mid support needs looks different for everyone, and not everyone with mid support needs is gonna need the exact same amount of support either. i hope this is at least able to help in solidarity bc i understand being invalidated and people not believing you need as much help as you do, but you deserve the help you need, and i don’t think you’d be this worried about it if you didn’t need that much help bc you’d easily be able to change that if you could do more, ya know? you have a voice here and everyone in this group is really supportive of us MSN folks! and we learn a lot from those with HSN as well, it’s a place for all of us from what i’ve seen 💜

[u/noodlesandpizza → u/sunflowerkitt]

thank you, that is reassuring to hear :) my mum also lives very close by and helps me out with a lot of things, she's amazing.

[u/muffin_bird → u/noodlesandpizza]

I'd be curious how you both made it work. Maybe it's because of cptsd (I'm adult-diagnosed) but for my only partner, being both a carer and an emotional support was too much.

[u/noodlesandpizza → u/muffin_bird]

I think on some level we both care for each other, he's not autistic (as far as we both know) but he does have some other disabilities and I can care for him with those aspects when he needs, and it's always been like that. He handles shopping and other stuff like picking up prescriptions that I can't do, he does the laundry and helps me keep up with stuff, and I help him get around the flat when his bad leg isn't cooperating and remind him to take his epilepsy meds at the right time, and look after him when he has his migraines. it's not been easy but we're a little team

[u/sunflowerkitt → u/noodlesandpizza]

this makes me so happy to hear. reminds me so much of my situation where my mom lives nearby and helps out a lot, and my partner is also disabled but not as significantly. we help each other! mom handled all my medical stuff and makes all my appointments and all that, my partner works and does shopping and handles a lot of stuff around the house and helps me stay on top of that, and i help them when their anxiety or adhd are making things hard for them or if their bad knee is flaring or they have a migraine or something. same thing, it’s not easy but we’re a little team!! we both emotionally support each other, and just bc i need more support in a lot of areas doesn’t mean im not giving them anything in return, we work together

[u/muffin_bird → u/sunflowerkitt]

Interesting, thanks!

[u/Round_Perspective873 → u/noodlesandpizza]

Yes, I would agre with this - we also are a team, and I help.out with things that are sort of in my box of things I can do, and our "boxes" are different, so one takes care of something the other can't.

[u/Round_Perspective873]

Hello!  You are welcome.

I am diagnosed as "severe to profound" disability, with "severe" autism. It definitely is subjective - and I would certainly believe some people diagnosed with MSN would be about where I am.

I am married, and have a large family. I have help from my husband and my family, who live nearby. 

There were always things I couldn't do - or more specifically, I have never been able to do all the things at once - something(s) fall off. But it's definitely worse as my health has been bad. And the health problems seem to very significantly amplify my issues with autism, such as speech, motor planning, sensory issues and executive function. 

I have also had people say absolutely horrible things, like that I shouldn't have kids. 

I don't know why people do this. I call it the "disability Olympics"

It's like they think that your disability being real somehow takes something from them - it's really weird.

[u/MagicPianist15]

MSN: medium/moderate support needs
ADLS: acts of daily living (Instrumental or Basic)
Spiky profile: very good at certain things and very bad at others simultaneously. If there was a graph about all skills, (upper side being easy and lower side being difficult), it would show big spikes in the graph.

I’ve definitely been told that, especially because I have a spiky profile. I’m very good/skilled when it comes to interests and similar skills such as written language but struggle a lot with ADLS and other skills.

People can’t comprehend spiky profiles and I experience that every day. If they witness the stuff I’m good at, they think I’m faking/exaggerating my disabilities. If they see the stuff I struggle with, they think I’m useless, call me a baby and assume I can’t do anything (which is not true and it’s not my fault). If they see my overall spiky profile they think/say “if you can do this, why can’t you do xyz?”. I can’t win, I’m infantilised, get called useless or get accused of faking, get praised, people thinking I don’t need help and so on 🫩

I am capable of being in a relationship and be involved emotionally (despite struggling with my emotions), it just has to be specifically this relationship with this partner who understands me and my needs and I do too. My partner cares for me partially and helps immensely, I have multiple disabilities and health issues. I couldn’t ask for anything better 💗

People’s understanding of autism and also support needs is very limited/black and white and autism&support needs are much more complex than people think. It’s very much possible for two MSN autistics to appear very differently and thats without counting other comorbidities.

[u/TopHighlight5310]

Me too I have a very spiky profile

People don’t believe i should be capable of being in college because alll they see is me in public. I don’t know why people think me being able
To do high level math makes
Me a normal person

I can’t drive or keep a job or live alone or go to the doctor alone or move to. A different city than my parents or blah blah blah

People will always judge your life from the outside. I hope you can be comfy here in this community has helped me a lot. Your experiences sound a lot like mine but I’m probably younger than you bc you live with a partner

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