Feeling completely misunderstood — Scope | Disability forum
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Feeling completely misunderstood

Autism_at_40
Autism_at_40 Community member Posts: 724 Pioneering
Hello,
I'm newly diagnosed only 1 1/2 years, late on in life.

I'm currently living with my sister and it's very difficult.  The situation is so bad I've completely withdrawn and I feel like I'm in Autistic Burnout.

My sister just kicked me out, (long story for elsewhere), but she doesn't believe my issues are Autism related.

She says because she is a nurse and has a degree in psychology and has previously worked with Autistic people that she knows better than me.  Even though I've been reading books and doing research.

She is very unsympathetic and I feel like she is completely dismissing my feelings and how every day things have an affect on me.

I'm starting to feel like it's me and I'm just such a burden :(
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Comments

  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,488 Disability Gamechanger
    Hi @autism_at_40 :) Thank you for sharing your experience with us. It sounds as though your sister is being quite unsympathetic and dismissive at the moment, as as though you're feeling a bit invalidated. Is that right? 

    Firstly, I'd like to reassure you that you're not a burden. Have you spoken to your sister about how her comments have made you feel? 

    Do you have anyone else in your life who's more understanding that you could lean on for support? The community is always here for you too, of course.
    National Campaigns Officer, she/her

    Join our call for an equal future.
  • Autism_at_40
    Autism_at_40 Community member Posts: 724 Pioneering
    Hi @Tori_Scope,

    Thank you for replying.

    Yes, I feel invalidated.

    Unfortunately, all these comments were made when she was shouting at me (she knows I'm sensitive to sound).  I tried to reply to her calmly, but she doesn't listen.  I've not spoken to her since.

    I'm reading Unmasking Autism and I think maybe because I've masked so well, that's why she thinks it's not Autism, I dont know...

    When I first moved in she was more accommodating to my needs, but then started doing things like booking a nights stay somewhere and not talking to me about it at all! Luckily, I'd got an email from the company about it and when I asked her she said "well you were informed then!".

    I've given up trying to talk to her because at this point, I dont believe she will consider anything I say.  She has to be right about everything so even if she did think differently she wouldnt say anything to me..

    I have 1 friend who hasnt ditched me since I found out I'm Autistic.  Unfortunately I've got a lot of issues at the moment and she doesn't seem to want to talk to me...

    One of the main reasons I came on here, because I feel so alone.. 

    I was diagnosed and left to get on with it.. I've had to slowly learn about what it means to be Autistic and what help I can ask for....

    It's very hard.... 
  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,488 Disability Gamechanger
    The book sounds interesting @Autism_at_40 :) Many people with autism, including those diagnosed at a later stage in life, can relate to feelings of masking. 

    The community is a great place to be if you're feeling isolated or lonely, so I hope that you can form some friendly connections here with people who can understand what you're going through.

    I've sent you an email from [email protected] to see if there's anything further we can do to support you, so please do keep an eye out for that if you can.
    National Campaigns Officer, she/her

    Join our call for an equal future.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger

    Thank you for being so open with us @Autism_at_40 and reaching out for support. I appreciate how much courage this can take.

    You deserve to feel validated, rather than invalidated. No one has the right to do or say anything that makes you feel like this.

    You are doing really well doing what you need to do to take care of yourself. Though, I appreciate this is easier said than done.

    You deserve to have a support network that doesn’t ditch you since finding out you’re autistic. You mentioned, however, that you have got a lot of issues at the moment and she doesn’t seem to want to talk to you.

    I am wondering if you would like to tell us more about this – for example, the issues you are experiencing at the moment and other potential reasons she might not be talking to you.

    You don’t have to be alone with us. We are all here for you and listening to you. From one autistic person to another autistic person, I am sending you hugs and a listening ear.

    In an ideal world, what would support look like for you at the moment? Please don’t hesitate to let us know if we can do anything to support you.

    Take care for now and we will look forward to, hopefully, hearing from you again soon  :) 










    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • Autism_at_40
    Autism_at_40 Community member Posts: 724 Pioneering
    @Tori_Scope
    Thanks for your post.
    I've replied to your email.

    I feel overwhelmed masked an awful lot and that's why people dont take my Autism seriously.

    I'm finding it useful posting on here and will continue to do so.
    Thank you.
  • Autism_at_40
    Autism_at_40 Community member Posts: 724 Pioneering
    @L_Volunteer
    Hello and thank you for replying.

    By She, I assume you are referring to my sister.

    The issues I'm facing, are being homeless, not having my belongings cos my sister is holding them, she wants me to pay her my cost of living payments.  Other issues are my Aurism, brain fog, memory issues and fatigue.

    Because I have felt so unheard, I've gradually withdrawn to the point where I stopped talking to my sister and lived in my room.  I believe this is Autism related because of the circumstances around what has happened, thevway she talks to me etc...

    At the moment,the support I need is probably more than I can get from this community.  I feel trapped, overwhelmed, I have 2 days to pack and move out but I dont have the energy and I dont feel comfortable here.  I also dont know if I'll get my other stuff.  I know that if I say anything, my sister will blow up at me.  She can be very vicious.

    I dont have the energy to move my stuff out of a first floor flat on my own either.. man and a van costs too much.. 

    So, I don't know really... 
  • Autism_at_40
    Autism_at_40 Community member Posts: 724 Pioneering
    @Tori_Scope & @L_Volunteer
    My friend came through for me and has taken me and my stuff in :smile:
    I am a lot happier now that I am out of that flat.
    I still have a long way to go, but I feel much better now.
  • Hannah_Scope
    Hannah_Scope Posts: 7,194 Disability Gamechanger
    Hello @Autism_at_40

    I'm so sorry you've gone through all that. I was so happy to read your update. 

    Did you manage to get your other things from your sisters? 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Autism_at_40
    Autism_at_40 Community member Posts: 724 Pioneering
    @Hannah_Scope
    Thanks for your message.
    No, I left on Sunday with the majority of my things, but I am now 4 hours away, which makes it very difficult.
    I have not heard from my sister at all.  When she came in while I was loading the van, she didn't say a word to me.
    I still have her house keys.
    I don't really know what to do about it.
    My priority at the moment is to find somewhere to live here, so that I am not putting on my friend for a long time.
  • Hannah_Scope
    Hannah_Scope Posts: 7,194 Disability Gamechanger
    @Autism_at_40 I'm so sorry you haven't got your things. 

    It sounds like you have the right priority in mind, taking care of yourself first. If and when you do come to giving the keys back, you can always ask a friend or even ask to meet in a public place to give them back.
    Hannah - She / Her

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
    Want to give us feedback? Complete our feedback form now.

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