December 2, 2022 at 9:35 am #411108
I hope this is not too long and I will try to keep it concise.
I got diagnosed with Autism in 2021 at the age of 38. None of my friends understood and I felt I’d been left to deal with it/understand it bh myself.
I got to a point where I was so low, I was seriously making plans to end it all. That’s when I decided to contact my oldest sister who I’d not spoken to for years.
By the end of the year I found out my landlord was committing fraud and I talked to my sister. She came with a van and picked me and my stuff up and moved me in with her, 4 hours away to a place I’d never been to before.
The stress of that was bad enough, a few days later, I lost my WFH job. After that, I found everything incredibly stressful and ended up being quite ill. I got more frequent migraines, stomach pains that kept me up all night, other aches and pains, fatigue, brain fog and memory issues.
I went back and forth to the doctors, I had low vitamin D and B12. The tablets I took didnt seem to make a difference to how I felt.
Then i got covid and again I didn’t feel any better.
Meanwhile, I’d tried very hard to get counselling for my Autism related issues, but just kept being passed around and never got any actual help.
I became withdrawn and overwhelmed with everything. Then I had a massive argument with my sister, she made me feel like I couldn’t talk about my Autism, questioned whether I even wanted to be helped and said a lot of things I didnt believe were true.
Being Autistic I locked myself away. Unable to move forward. Eventually my sister made me get up and move.
I got assessed by the job centre as having limited capability for work. I kept going back to the doctor, pushed for B12 injections.
My sister decided to sell the flat, so I started to look for somewhere to live. She told me I needed to get somewhere of my own.
The living conditions worsened, I didnt feel comfortable spending time in the living room,my sister had made it her bedroom, she had a rabbit in there she didnt clean out and the only chair I could sit in was uncomfortable and made my fatigue worse. So again, I started spending more time in my room. (Also no hot running water, broken sink, her mess everywhere, including dirty pots in the bath, kitchen floor, living room etc)
I decided to move back to where I’m from. But logistically that was hard for me. I had a friend who said she would help me, but I felt like she was just saying that and stopped replying to me.
One day, i decided i would leave the flat to go to the shops, I came home, my sister had locked me out. She then proceeded to shout at me (I’m sensitive to sound). I said I’d call the police. That’s when she let me in.
She told me I had a week to get out, then continued to shout at me. Alot if what she said were mistruths, saying I had never done anything or paid for anything (id started out doing everything and paying for everything except her bills until I couldn’t afford it and the fatigue took over).
She basically told me that she didnt believe I’m fatigued and that my issues arent related to Autism, shed know cos shes a registered nurse and has a degree in psychology.
I know my symptoms are due to Autism as over been learning about my disability.
I now find myself in a situation where I have been unable to do much over the last couple of days, I am unable to pack much as my sister is holding my packing boxes and some of my belongings until I pay her money she never asked for and nowhere to go. I have 4 days left…
I’ve tried to seek help from anywhere and everywhere I can possibly think of or gets recommended to me, but I just keep hitting brick walls..
I dont know what to do anymore. I feel completely misunderstood and not believed and I dont know where to turn..December 2, 2022 at 1:11 pm #411121AnonymousGuest
The idea behind professionals diagnosing their patients with either physical or mental conditions and illnesses is to put together a treatment plan specifically designed for the particular diagnosis. But it seems like after you received a diagnosis (Autism) at the age of 38, no treatment plan followed.
I am sorry that you suffered so much and for so long, physically and emotionally. It looks like your sister tried to help you when she moved you to her flat 4 hours away from where you lived, and that she’s been having a difficult time herself (“no hot running water, broken sink, her mess everywhere, including dirty pots in the bath, kitchen floor, living room etc.“)
Having read your other thread, it looks like you are considering returning to the area where you used to live, 4 hours away. If that’s the only solution to your living situation (having to vacate your sister’s flat in a few days), then you should move back to the area where you lived before.
Again, I am sorry about your distress and hope that by Christmas you will be situated comfortably in a new place!
anitaDecember 3, 2022 at 3:47 am #411131
Thanks for your reply.
I’m a bit confused though. You say my sister is having a tough time then list the things I struggle with in the flat.
My sister chose to not have hot water, she chose that. She chooses not to have the sink fixed. She chooses to leave her mess everywhere and not clean any pots. Probably because she expects me to do it and because I’m not, she wont either. ..
I’m not sure I can move back. I dont have the energy to pack a van, drive 4 hours, unpack and then drive another 4 hours.
Nothing I can do anymore.. keep asking for support. Never get it.. no point to life anymoreDecember 3, 2022 at 7:51 am #411134AnonymousGuest
You are welcome. “You say my sister is having a tough time then list the things I struggle with in the flat“- your sister lives in the same bad conditions as you do, in the same flat: she struggles as well.
“My sister chose to not have hot water, she chose that. She chooses not to have the sink fixed. She chooses to leave her mess everywhere and not clean any pots. Probably because she expects me to do it and because I’m not, she won’t either“- she didn’t arrange for hot water, for the sink to be fixed, and she places dirty pots in the bathtub and in the living room …not because she is mentally healthy, but because she is not mentally healthy. You recently received a mental health diagnosis (autism). Your sister probably fits another mental health diagnosis that explains her living conditions.
The screen name you chose is Misunderstood Autistic. I think that you misunderstood your sister: perhaps she is not the enemy you think she is. After all, when you needed a place to stay last year, she drove 4 hours to get you and your belongings and offered you her place as a refuge. And then, she moved out of her bedroom to the living room so that you could have the only room in the flat, didn’t she?
“(I) … keep asking for support. Never get it“- your sister gave you support, you received it, but grew unhappy with her support and angry at her, not understanding perhaps that people are limited in how much support they are able to give. What kind of support do you need here, on your thread?
anitaDecember 3, 2022 at 11:15 am #411146
Yes, my sister does live in the same situation as I do, however, it’s her flat and she has the means to change it, I dont.
It’s not that she “didnt arrange for hot water” as you put it. She deliberately had it turned off and cut off.
Are you saying laziness is a mental health illness? I have mental health problems, but i still clean up after myself.
Incorrect. It’s a 2 bedroom flat, i have the spare bedroom. She moved into the living room and still has her own bedroom.
My sister gave me somewhere to live. That’s where the support ended. She didnt acknowledge my illness and the fact i became unable to do as much as i had been doing, instead she got angry with me.
Being autistic, i struggle to make decisions, struggle to do things at the last minute, struggle with a lot of things and i asked for support to help me with these things.
I’ve literally just been contemplating to myself if I’m the selfish obe, because, unlike my sister, i am able to think about other peoples positions and points of view and consider my own actions.
Unfortunately, my sister only sees her own point of view. I dont believe j have got the support I have needed and it has gradually made me worse and worse.
Being Autistic, my brain works in a very different way to neuro typical people. I’m even reading that neurodiverse peoples brains are far different from each others than neurotypical peoples brains are from each other.
I think I will leave it at that. You are clearly keen to make assumptions and pass judgement, something I dont find helpful.December 3, 2022 at 11:40 am #411150
Autism is a disability not a mental health diagnosis as you put it..December 3, 2022 at 1:16 pm #411158AnonymousGuest
Yes, I do have the tendency to assume and pass judgment, something that I have been improving about myself quite successfully, but I have more work to do. I am sorry that you feel judged and I admit that it seems to me that you’ve been unfair to your sister. By suggesting it previously, and trying to talk with you about it, my hope was that maybe your relationship with her will improve as a result, and that your life will be easier for it.
Regarding your diagnosis, I am glad that you took advantage of the opportunity to correct my misunderstanding of what it means to be autistic, as well as the opportunity to correct possible misunderstandings of anyone reading your thread.
You wrote: “Autism is a disability not a mental health diagnosis“-
– although Autism spectrum disorder is listed in the current American Diagnostic Statistical and Manual of Mental Disorders (DSM-5), a handbook used by healthcare professionals to diagnose mental health conditions, autism is classified as a neurodevelopmental disorder.
“developmental disorders and mental illnesses are defined, treated, and managed very differently…. According to the National Institute of Mental Health (NIMH), a developmental disability is “a severe, long-term disability that can affect cognitive ability, physical functioning, or both. These disabilities appear before age 22 and are likely to be lifelong. The term ‘developmental disability’ encompasses intellectual disability but also includes physical disabilities.” (very well health. com).
“She deliberately had (hot water) turned off and cut off“- I didn’t understand this earlier. It is cruel to do this, especially during the winter!
“Are you saying that laziness is a mental health illness?“- if one’s laziness is so acute that it leads to a severely dysfunctional life, then I’d say the person suffers from a mental illness of some sort.
“She didn’t acknowledge my illness.. instead she got angry with me“- you shared that you were diagnosed last year at the age of 38, and it seems like much of the reason you had a severe falling out with your sister is that she didn’t acknowledge your autism. How was your relationship with her before your diagnosis?
If you choose to not answer me, that’s fine, I understand, and hope that perhaps another member will communicate with you more successfully.
anitaDecember 5, 2022 at 2:50 am #411329RobertaParticipant
Dear Misunderstood Autistic
My following comments are not meant to defend your sister or her appalling behavior. Just placing another possible facet to the picture.
You said that she worked in the that same area of your disability. She may well now feel totally worthless because she failed see that her own brother had that disability, also working in an area is very different to living 24/7 with the situation ( My job was carer for over 20 years and now sole carer 24/7 for my father has dementia).
When we feel scared & worthless the default mode is often anger all of which means ones judgement is impaired.
Take care of yourself
RobertaDecember 6, 2022 at 8:13 am #411402
Thanks for your message.
Things in the UK, where I am from are a lot different to the US. I don’t think that we treat Autism the same way that you do.
In response to your question, before 2021, I had not spoken to my sister in years. However, the point I was trying to make was that my sister is a nurse, she has a degree in psychology and has worked with Autistic people previously, therefore, I felt that she should have some understanding of how my Autism effects me and be more compassionate and supporting of my needs instead of completely invalidating me.
I no longer need the support I felt that I needed when I first started this thread.December 6, 2022 at 8:15 am #411403
I am confused. My brother doesnt have a disability, I do, and I am female.
I do believe you are incorrect also in your assessment, as she threw the fact that she is a nurse, has the qualifications etc in my face saying that because of these things, she KNOWS that my issues are not Autism related.
She has no sympathy whatsoever for my health issues which I think is disgusting for a health care professional.
Thanks for your input, I no longer require help with this matter.December 6, 2022 at 10:16 am #411414AnonymousGuest
I am glad that you addressed me again, and I read that you no longer require help with this matter. Nonetheless, I want to say a few things before leaving your thread, things that I am sure will not hurt you, and may help you or someone reading your threads, someone who- like you- was diagnosed with Autism Spectrum Disorder (ASD) as an adult (you are a 39 year-old woman who was diagnosed in 2021, at age 38).
“Things in the UK, where I am from are a lot different to the US. I don’t think that we treat Autism the same way that you do“- I just came across a clear, easy to understand (and British) National Health Service website on Autism Spectrum Disorder, it reads:
“Signs of Autism in Adults: As you age and experience different environments, life events, and circumstances, you might notice different signs of autism… Relationships and being social: As an autistic adult, you might: * find socialising hard work… * have had relationships with friends or partners end because you couldn’t understand how each other thought, behaved, and communicated… * enjoy spending time with other people, but find activities that don’t have clear ‘rules’ or a schedule.. difficult because you aren’t sure what to do * prefer meeting up with people to do structured activities, like cooking or taking part in a shared hobby or interest
“Communication and emotions: As an autistic adult, you might: * find other people often misunderstand you, or seem upset by things you say even if you don’t mean to upset them * find it hard to understand why people around you see a situation one way, and not the way you understand it. * find change more difficult than most people do – things that disrupt your daily routine… can make you feel stressed and anxious”.
“Autistic traits and diagnosis: Autistic traits – meaning things that autistic people often do, think, and feel – are often shared by people who don’t have autism too. This doesn’t mean that everyone is ‘a little bit autistic’, or that autistic people don’t need support. To be diagnosed with autism, a person has to have a lot of autistic traits from birth, and those traits need to have a big effect on their life. In order to be diagnosed with autism, those traits must cause what a healthcare professional would call ‘clinically significant difficulties’ in their day-to-day life. This means that they have difficulties with day-to-day life due to their autistic traits and need to use their own ways of overcoming those difficulties, or the people in their life need to help them to overcome them, or both. Being in a supportive environment makes a big difference to an autistic person’s wellbeing and quality of life”.
Back to your recent posts: “The point I was trying to make was that my sister is a nurse, she has a degree in psychology and has worked with Autistic people previously, therefore, I felt that she should have some understanding of how my Autism affects me and be more compassionate and supporting of my needs instead of completely invalidating me… She has no sympathy whatsoever for my health issues“- she did not give you the “supportive environment” (see above quote from the NHS website) that you needed, one that would have made a big difference for you.
From your original post: “I’d tried very hard to get counselling for my Autism related issues, but just kept being passed around and never got any actual help“- you received no medical support in regard to your diagnosed autism, and no emotional-social support from your sister.
“My sister.. didn’t clean… no hot running water, broken sink, her mess everywhere, including dirty pots in the bath, kitchen floor, living room etc… I have mental health problems, but I still clean up after myself“- reads like she has mental health problems too.
“She didn’t acknowledge my illness and the fact I became unable to do as much as I had been doing“- reads like she did not acknowledge her own (mental) illness, and that she too is unable to do as much as she used to do, and that’s why her flat is such a mess.
“Being autistic, I struggle to make decisions, struggle to do things at the last minute, struggle with a lot of things and I asked for support to help me with these things“- reads like you asked for support from a woman who is also struggling and is in need for support herself. I wish that the two of you were able to support each other, and that she never screamed and otherwise mistreated you! I am sorry that she mistreated you!!!
“she threw the fact that she is a nurse, has the qualifications etc. in my face saying that because of these things, she KNOWS that my issues are not Autism related“-
– even a nurse with a degree in psychology can suffer from mental illness. Cambridge. org/ mental health of nurses in the uk: “… Discussion: This brief overview of the literature reveals high levels of reported mental health problems among nurses, and mental health nurses in particular. This should be a reason for concern for both the Government and the nursing profession. A vigorous debate is required to establish underlying causes and possible solutions…”.
It will help every person who is struggling to understand that… everyone struggles in one way or another, and most people struggle significantly. We should all support each other because we are all… struggling. This is not to take away from your Autism Spectrum Disorder (ASD) diagnosis, but to encourage you to have a better experience in your new and current living arrangement with your friend (“My situation has changed anyway, a friend of mine has taken me in“, today, Dec 6, on the other thread).
anitaDecember 6, 2022 at 2:32 pm #411427RobertaParticipant
My apologies I should have written sibling. Glad that you have found somewhere to stay. I hope that things go well for you in all aspects of your life