Rejection Sensitivity Dysphoria (RSD) and coping skills.

Catherine21

https://forum.scope.org.uk/discussion/comment/922572#Comment_922572

You are strong because we deal with this everyday of the week how dare anyone tell you that your faking anything she obviously gets off on belittling people you don't answer to her walking away from someone like that is the best thing you can do you don't have to offer anyone explanations I'm sorry you been made to feel this way I had a so called friend who used my kind nature or maybe I was a people pleaser big time she drained Me I used to leave her house and stay in bed for a week afterwards having bpd as well is hard your battling some many things pls know this woman's options are just her twisted options I bet she talks about everyone having a good gossip and you probley find disliked by alot of people pls be kind to yourself beating ourselves up makes the journey so much harder hope you still go to your group sounds like your relationship with your daughter is really close like my daughter and me keep your loved ones close and as for miss judgemental keep her well out of your life keep being you and offer no one explanations only yourself x

Catherine21

Ps you are definitely not a spineless idiot that gets things wrong we have to fight harder everyday as our brains not designed for modern day living that makes us warriors and even with everything we go through we still care will still have a heart No those words don't belong to you she was wrong not you hope you have a restful day x

durhamjaide2001

hi I'm an Oliver Mcgowen Expert by experience trainer in autism and this is useful information which I will share in my training thank you @Albus_Scope for sharing

judie

@Albus_Scope , yes this is me too. Seems we are a pretty big gang - it's nice not to feel odd and alone

Andi66

https://forum.scope.org.uk/discussion/comment/922577#Comment_922577

Thank you for your kind words.

Jimm_Scope

https://forum.scope.org.uk/discussion/comment/922572#Comment_922572

Hey @Andi66, I just wanted to talk a bit about the feeling of weakness or a failure. You have had to endure experiences that many have not. And you have still kept going. That isn't weakness, that's a sign of strength. I've struggled with a lot of the same feelings, as I was diagnosed with ADHD late. The world is built by and for neurotypical people, things are slowly changing, but still far from it and that is not your fault. Your autism was only diagnosed recently right? Much like my ADHD was diagnosed late. You haven't had the chance to interact with the world knowing that your brain does work slightly differently to those who do not have a neurodivergence. I think the fact that you are taking steps forward with this, such as the wristband and lanyard, shows the strength you have.

Andi66

https://forum.scope.org.uk/discussion/comment/922696#Comment_922696

Thank you, yes I was 55 , I'm 57 now. I had my first appointment in 2019 then final 2 in 2022. My daughter was 14, she's 25. I also have dyslexia, diagnosed in my 20s. Been through childhood trauma, domestic violence etc. Now also have chronic illness and genetic . I am finding trust now very hard for friends and relationships are even harder to trust. I seem not to see red flags until its too late

Amaya_Ringo

I tend to think the people dishing out the abuse are the real failures.

Andi, you are neither spineless, nor weak. You are a fighter, and nobody has the right to undermine your lived experiences. Especially someone who's never lived them.

chiarieds

I agree wholeheartedly with @Amaya_Ringo - &, if I might be bold enough to say, there are some of us with 'just' physical problems who've been through the wringer too.

I feel wary intruding on the thoughts of those who are on the autistic spectrum, so hope you'll all forgive me.

Albus' initial post about RSD is definitely informative. RSD is different, but, on occasion, those neurotypicals who are 'just' hypersensitive can also suffer overwhelming grief/misunderstanding.

I'll take issue with Jimm saying the world is ''built by and for neurotypical people,'' tho would likely agree that there are more people considered neurotypical than neurodivergent.

There can be light or noise sensitivity in the neurodiverse community; it can also be a feature of 'just' physical disorders. I have hyperacusis & light sensitivity likely due to Chiari 1 Malformation; these can also be a feature of many other physical disorders.

I'd like to suggest that whether neurodiverse or neurotypical there can be similar problems, which should hopefully foster greater understanding between us all.

Now to the possibly confrontational bit, tho I hope it isn't. My son was referred to see a neuropsychologist due to his memory problems when I was querying that our family did indeed have both Ehlers-Danlos Syndrome (EDS) & Chiari 1 Malformation. We had quite a lengthy time with the neuropsychologist, who tested my son against his peers (at the time he was a 1st year Uni student). All the tests came back that he scored 100% apart from a few; his fine motor skills were poor (something I think other neurodiverse people have mentioned), & he had difficulty in other spheres. Now the exact words of this neuropsychologist were that he wouldn't diagnose him, but that he was 'next door to Asperger's Syndrome.' Due to the fact that this disorder was named after Hans Asperger, who after his death was found to be a Nazi collaborator, I rather now say he was said to be 'next door to the autistic spectrum.' The National Autistic Society has also commented here:

https://www.autism.org.uk/advice-and-guidance/what-is-autism/the-history-of-autism/asperger-syndrome

My son, who had for a few years seen several Drs with myself in trying to find out what we had to help his older sister (the EDS & Chiari bit), said he was the best Dr he had seen as he totally 'got' him. Now is it wrong that I see my son as seeing things differently, is it wrong that through him I have a bit of understanding about being neurodiverse? To my mind there's nothing that separates us other than divisions that are wrongly made. Neurodiversity is not in itself a mental health disorder to my mind (tho there can be comorbidities the same as with 'just' perceived physical disorders), just thank goodness some see things differently….the world is a better place.

There really isn't much difference between us all is what I'm trying to say, so let's not make make one, please everyone…..we're here together.

Amaya_Ringo

I can absolutely understand where chiarieds is coming from - at the same time, I think the reason people sometimes react badly to comments like this is really complicated.

Firstly, the world is designed for and by neurotypicals, because it's always built for the majority/default. That doesn't mean it includes all neurotypicals. Many neurotypical disabled people suffer a good deal at the hands of society. Unfortunately, there are also some neurotypical disabled people who also undermine neurodivergence, though I trust, not on this forum.

Secondly, the experience a parent or carer has of neurodiversity is not the same experience as a person who is actually neurodiverse. It is absolutely as valid, but it is also different.

Thirdly - as abhorrent as I find the historical context of "Asperger's Syndrome", at the same time, words like 'aspie' have come to belong to us and it's mostly been neurotypical people who have decided we should no longer use them. Similarly with autistic vs person with autism and high functioning - these are terms belonging to the autistic community now. If autistic people want to use them, then that should be their decision. There are also autistic people who have suffered discrimination from the loss of these terms, because of mistaken public belief about autism being an intellectual disability.

Finally - many things autistic people experience can be experienced by people not on the spectrum. RSD, hypersensitivity, Alexithymia, even executive function. But this doesn't necessarily mean we are all on the spectrum somewhere. It simply means that not all roads lead to autism as an explanation. Autism has a lot of potential co-occurring conditions, and it's absolutely possible to be 'borderline' something without actually being 'it'. This is one reason autistic people are so diverse in their outlook.

Ultimately, though, autism is an invisible physical disability, as it involves a how your brain is wired - hence neurodevelopmental disorder. This applies to other ND conditions as well. It isn't about 'thinking differently' so much as the brain being set up to send signals in an alternative way to what is considered 'standard'. This is the fundamental difference between ND and NT brains, and why I think it's difficult for those not on the spectrum to full appreciate what it means to be on that spectrum 24/7.

This is why when people try and blur the lines between NT and ND, it is unhelpful. If we want people to understand that our brains work differently, then we need them to also understand that it's a mechanical difference which affects the whole of our outlook on life, and that means in some areas we will be strong and in some we will be weak. It's also probably not possible to 'fix' or 'normalise', although most of the research to date has been around how to socially normalise autistic kids, rather than integrate them or deal with other comorbid health issues.

This is why a NT person's experience of autism in the family won't ever be the same as an ND person's. It's not a lesser experience. It's just different, and as ND people, we need both narratives to be told, not just the parent/carer/representative narrative that tends to dominate current media discussions.

I didn't find your post offensive, chiarieds, but at the same time, there is a lot of sensitivity among ND and especially autistic people because of how often people outside the spectrum have spoken for us, rather than letting us speak for ourselves. This forum is not that kind of a place, though, and I am glad you are advocating for and listening to your son :)

WhatThe

Amaya_Ringo, thank you for speaking for me!

👋