How can my parents help me?

I’m 20 year old female with autism. I only found out about it when I was really struggling at university and I went for an adhd assessment. The doctor said I had adhd AND autism which explained a lot!

my parents took it well but it did bring up some issues. I always get the slight sense that they don’t believe me for a start as they make comments like “oh everyone feels like that” or “*** can do it and they’re autistic”. They say they’ve done their research but they seem to know very little about autism and it’s been nearly a year now. They also kind of have the attitude that I’m an adult now- autism is “my thing” and they have nothing to do with it and in their words “shouldn’t have to accommodate it if it’s going to put them out”.

What caused my ginormous burn out/ breakdown (that lead to me getting medical help in the first place) was that as soon as I left for university, they changed my bedroom completely into a spare room and redecorated the house. I know they weren’t doing it maliciously but I wish they had thought of me- it really stressed me out that I was living somewhere new and my home had been turned upside down and a lot of my things in the attic or worse, thrown away. I’m at home for my summer break but home doesn’t feel like home anymore and I’m scared to be in the house alone which I have told them. Last year, before I knew about the autism, it got really bad because the house felt so strange I started getting hallucinations and had one of the worst melt downs of my life because I thought there were people living in the walls trying to kill me. I’m better now but I still find our big empty house very overwhelming (it sounds silly but mostly because I’m paranoid about ghosts and spiders) 

despite this, my parents go away to their boat leave me alone in the house every weekend and I had a meltdown earlier this week because they announced that now (in 1 hours time!) they will be leaving for 10 very daunting days. I have my boyfriend of 3 years to keep me company but him being here makes me more uneasy sometimes because it feels like he’s in the wrong place- I can’t explain it. I asked to go with them but they said my energy was too stressful and even if I’m not melting down or shutting down, they feel like it could happen any moment and this is their chance to get wash from that.

I have had a rocky relationship with my parents my whole life as we aren’t very good at communicating and don’t understand each other. My brother is a lot older and has a different mum and lives in another country so I’ve been raised as an only child. It’s always been two against one and very hard to confront or argue with without having a full tantrum style meltdown (which I know is a problem on my part- I just get frustrated and overwhelmed because I can’t seem to get through to them) I would just call it a day on our relationship but them and my boyfriend are really all I have. I love my boyfriend to pieces but I realise that I can’t be completely socially dependent on him and due to my social phobias I don’t have any friends and wouldn’t know where to start!

my parents said that “if they were such terrible parents you should right a list of how we should support you” but the trouble is, I can’t think of anything! What can I ask of them? I’m embarrassed to talk with them about my autism now because I feel ashamed about it around them, I don’t know why. I just know that I need support, just in general, in life. Honestly I just need parents that are there for me but I can’t seem to communicate that with them. They want this list and I don’t know what to write. 

  • Hey

    It's a bugger when you find out your parents don't really want you, 

    Believe me it could be worse, like physical abuse plus unreasonable demands and expectations about how your life should look like, while giving no advice how to do it or any help. it never stops until you cut contact.

    OK they raised you till you were 18 because the law demanded it and the moment you left for uni they redecorated your room, 

    I have a horrible feeling that they want that list because they won't read it, this way they will avoid hearing it

    You need to start thinking about moving out to live with your boyfriend or alone.

    Hopefully you'll find some friends later on. Non-autistic grow up eventually and some of them realise that we are not weirdos but actually very interesting people.

  • I think it might be a good start to think about your triggers or write a list of your traits and then write in a column next to each thing what support you need. Eg. Prior warning of plans or major changes. Although it might be difficult for them to get their head round autism runs in families so it’s quite likely that one or both of them are also autistic. This is where the “everyone does that” attitudes often arise from. Might be something for you to bear in mind if they do end up dismissing your entire list as they see it as normal. I think you also need to prepare yourself for the fact that they still may not be supportive and maybe your boyfriend can help support you to live more independently of them

  • Hello , thank you for sharing with the online community. You might find that our page on Family life could have some links that are helpful to your parents: https://www.autism.org.uk/advice-and-guidance/topics/family-life-and-relationships/family-life.

    Best wishes,

    Anna Mod

  • First of all, I am so sorry to hear all this. They don't sound supportive. If not just disrespectful, I'm sorry to say. 

    Let's say you wrote a list and started with this: 

    Honestly I just need parents that are there for me but I can’t seem to communicate that

    This is very clear. The problem here isn't just one-sided. The biggest problem is they have a Role and that role has Responsibilities. It sounds to me like they've done the bare minimum, you're still alive. But just. In an ideal world, parents should want to help their children thrive regardless of age. I sounds to me like there's so much they didn't give you and it makes me want to give you a big hug. 

    Autism is a human thing. Your not burdened with it in isolation. Our autistic-wiring can be amazing, but learning to understand what this means, especially when recognising the distinctions between non-autistic and autistic and how to navigate, might require a great deal of research. It will take years, but it is worth the investigations and it sounds like you're already starting to understand quite a bit.

    I might suggest you give a "List" of links to your parents and also say that you don't know if they were actually asking for one (my guess is they weren't), but perhaps that's a good idea anyway and simply state something like this:

    "I feel isolated and unprotected. I do not feel like I have anyone I can relate with. I've found some links that help explain this, so I'd like to share them with you."

    I will give you some links at the bottom and you can share whatever you feel might begin to help. But from what I''m reading, and from experience, they may not be interested. And if not, it's heartbreaking. Can you afford a therapist? I would see one weekly if I could afford to. Even once a month or every other month can help with simply feeling seen. Something I am hearing is that it's possible there is some psychological abuse from them. It may be unintentional and careless. It may be their control issues. And sometimes it's easier to walk away from a situation when another leaves a physical bruise.

    When I was 20 I was withdrawn and felt a bit like a ghost. I also had issues with feeling completely unsafe. I wouldn't even realise I was possibly 'on the spectrum' for 20 more years. Which is a long time to try and work out what was wrong with the world and how I would be able to fit somewhere in it. I can say I read a lot. I worked through fiction: Kafka, Salinger, Joyce, and poetry and philosophy and just excellent classic advice like Orwell and Chesterton. I think this period in time between the late 1800's into the mid 1900's may have seen a lot more Autistic Values as social norms and it seems like literature and columnists reflect that. But that's just my take.

    Battling vivid images and hallucinations is a whole other ordeal. It can be common for many of us to experience this as our brains can just go into this hyper-mode. It's worth keeping a log over though. They could subside as you get older or with psychological grounding though personal growth. But I think it may be important to find a group or church or book or knitting club or something where you might be able to find a mentor and a few friends. I know investing in friendships can be hard, but we are still in need of some kind of community. Have you read The Artists Way? I recommend it to everyone. 

    Also, I don't know if you've found these, but they're good sites to explore

    https://autistic-village.com

    https://www.instagram.com/thearticulateautistic/

    https://thinkingautismguide.com