My partner has autism and we are struggling

Hello,

My girlfriend and I have been together for 4.5 years, we are engaged and in December she was diagnosed with autism, high-functioning.  She was 28 at time of diagnosis which hasn’t helped. 

I am a ‘neurotypical’ and I am trying to understand why she does certain things and sometimes I know I don’t react in the best way I possibly could, which is why I am turning to this site, in hope that there may be other partners out there that have coping strategies or can just help me to be better for her because currently it is quite lonely and sad and I feel like I’m suffocating a bit. It’s a heavy weight. 

I am reading ‘An Adult with an Autism Diagnosis’ by Gillian Drew in an attempt to be more understanding. 

I work away quite a bit as a Tour Manager, for musicians, which can make coping more difficult. For both of us. In August, I will be travelling around America for almost 7 weeks. Currently, I have been in Scotland for just ONE week and we have had an ‘autistic incident’. I don’t know how to refer to it, so apologies if I offend anyone. 

Emotions when touring are tenfold. 

Also, sometimes, when I return from a tour; it feels like I’m out of her routine a bit and she needs to readjust to my being there, which can be upsetting. 

If there are any books to be recommended, or other sites, I’d be truly grateful. 

Thank you in advance. 

Carly. 

  • You don't want my advice.

    Perhaps it's the very thing you need to hear but don't want to.

    I have no crystal ball. But neither do you. 

    Just saying.

  • I really appreciate you taking the time to give such great responses. 

    Totally makes sense re cat and dog, that’s a really good to approach it. 

    Side note, I taught my (actual) cat to sit on demand though so... haha. 

  • Thanks for your reply.

    There’s a difference between being fed up and struggling, which is why I have reached out. Please don’t assume you know how I feel. 

    Have a great day. 

  • Ok I respect that. But I've  been on both sides of the normal/not normal situation, and  I can tell you that actually living with things day in day out is not the same as the romantic desire to do the right thing  by the person you hope is your soul mate. It's natural. But you do seem very fed up and you're not even married yet...

    Think.

  • Thank you!

    I've had a lot of help from people on this and other sites and I'm just trying to 'pay it back' if I can.

  • Similarly, I like to wag my tail (stimming) - you think it's weird, but it makes me feel good and doesn't do any harm, so let it go.

    I love your posts OP. You're amazing.

  • "A Field Guide to Earthlings: An autistic/Asperger view of neurotypical behaviour" is good (the first few chapters are a bit hard going and the 'play' that runs though it is, frankly, weird - but it offers good insight.

    My psychologist suggested my wife read "The partner's guide to Asperger syndrome"... I started reading it and have stopped, it's pretty negative and I feel condescending to the ASD partner... it reads like "How to train your Aspie" not good.

    "Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder): How Seeking a Diagnosis in Adulthood Can Change Your Life" was also good (for me, diagnosed at 47) and I think would be more useful for my wife than the other one.

    One thing, I've spent the last couple of months saturated with ASD info - blogs, forums, books, YouTube... to the point I'm sick of it.

    I'd suggest just dip in and out, tackle one thing at a time - start with something like the 'Field guide' as it will probably make you realise how much stuff you take for granted that you do/know but that your partner just doesn't...

    With that fundamental understanding of the difference apply it to specific situations e.g. your being away and returning and how that affects her and her routines.

    I'm going to take a wild guess that when you get back you want smiles and hugs and putting everything 'on hold' while you reconnect... but she may not be that demonstrative and/or says "Welcome home" then goes out to some activity she previously had planned or otherwise doesn't give you the attention that you (as an NT) crave...

    You feel neglected and unloved and isolated and hurt

    "Why isn't she pleased to see me?"

    "Why is she going out to her book club - surely she could miss that for a week?"

    In reality NTs are more like a dog - practically passing out with happiness when their owner returns from being away for maybe all of 5 minutes, while aspies/auties are like a cat - their owner gets back from being stranded on a desert island for 6 months and they'll be "Oh, you're back... don't get sand in my fur. What's for dinner?" and if you hug & stroke them too much they may scratch you in annoyance with it being 'too much'...

    Sorry if this sounds a bit bleak, but it is.

  • That's the perfect foundation to start from. You just need to learn the 'how'. In the short term I recommend signing up to amazon kindle unlimited (it's free for 30 days!) and reading as much as you can. The books you like buy and highlight the parts that concern you the most. Talk through them with your partner and vice versa. 

    P.S if you come across a book titled 'Broken' avoid it. That is exactly the type of negativity I was referring to before. I can't recall the author's name, not that it's important...

  • I wouldn’t have joined this site, be asking for help and advice, learning more and more about her, if I didn’t want to spend the rest of my life with her. 

  • You overlooked one tiny detail: love. Love is irrational and follows no logic. Love doesn't care how your brain is wired up.

    I'd be devastated to think my partner simply has to put up with me for the rest of her life! There's so much negativity in books and online about NT/AS relationships but it's not all like that. At all. It's down to the person with AS to research and find about the NT's world just as much. I've really enjoyed finding things out about my partner I simply would never have known or understood before. We're stepping into each other's worlds and it's truly fascinating to me! I've learnt so much and I'm not only applying it to our relationship but to the wider world too: my children, work, social gatherings etc etc

  • If you want to spend the rest of your life with her you just have to learn to handle her. If you don't want to it's better to say so now.

  • So, I'm in a similar situation with my wife (she's NT)... she gets upset by things I say / how I act sometimes and feels she has to 'hide her feelings'.

    We're still working it out but I think there are 2 key steps:

    1. She needs to realise I don't say/do things to upset her on purpose and linked to that, if I need something done a certain way it's need not want - which is quite different
    2. She needs to understand that I simply don't think like she does and needs to modify her approach to communication to avoid misunderstandings e.g. If we're out and she doesn't want to drive home because she's tired and it's getting dark (she doesn't like driving in the dark) saying "Would you like to drive home?" will get an honest answer, which may be "Not really"... because what she meant was "Will you drive home please, it's getting dark and I'm tired" to which the answer would be "Of course". It's subtle, but check out this thread: https://community.autism.org.uk/f/miscellaneous-and-chat/15774/the-problem-with-direct-communication - people with ASD are 'words based' communicators and as this is only 10% of what constitutes a message for an NT, you need to take a 'words first' communication approach.

    I know what you're thinking... "What are YOU doing to make things better? It seems a bit one-sided..."

    Well, the answer is, I got diagnosed, I'm trying to understand better what my 'trigger' areas are but honestly? I'm a dog that's been trying to be a cat its whole life and now we know I'm a dog it's time the cats in my life tried to be a bit more dog-like - or at least understood that barking (autistic shutdown/meltdown) is in my nature and it just means I'm excited or nervous or confused, it doesn't mean I'm going to bite you... Similarly, I like to wag my tail (stimming) - you think it's weird, but it makes me feel good and doesn't do any harm, so let it go.

    I keep getting told by 'friends' that I "Need to meet her half way..." - that would be such a relief, as it would mean I could 'back up' from the meeting at 90% position I'm in now... but that's not what they mean, they mean 'stretch another 5%' to meet halfway across the current gap... and that just isn't viable.

  • That was really great, thank you! It’s nice to know I’m not alone and I think that was where I was starting to struggle most. Feeling like no one understands me, and also not trying to make this about myself. 

    Luckily; we have pretty good communication, which we have been working on more since diagnosis. But at the end of the day, I’m a human, a sensitive one at that, so I cannot always hide my feelings when something she has done affects me. 

    Really appreciate your replies. 

  • Brilliant. Thank you so much. 

  • Hello,

    Thank you for your reply, which is really helpful. The ‘I stopped arguing back (most of the time)’ makes me feel better because it shows that sometimes it’s not always going to be easy for me/you to let things go. 

    It is very new to us still and once we had the diagnosis, that was it. No follow up support. Just, here you go, now get on with it. 

    Thanks again and I wish you all the best. 

  • Yes we have thought about that and maybe looking into that further is something we should do. Thank you for you reply. 

  • This one of hers is great, but really recommend watching most of her videos, they really helped me figure out alot

    https://youtu.be/ZeQxSdEpi7Y

  • Check out 'Agony Autie' on YouTube for a 'crash course' on autism...

  • Hi

    I am nt (sort of!) and my partner is undiagnosed asd we have been together for 10 years, it has been bumpy I won't lie! But finding a strategy that works for both of you is key. 

    For us it was understanding that he can't process the chaos of the house with the kids when he gets back from work he needs time to process the stress of dealing with the day! So we set him up a room that is his man cave, he has TV, music and computer as well as his hobbies there which help him calm down. If the door is closed don't bother him if it is open he is ok to talk. 

    Sometimes he needs to unload and he will get very angry we used to argue alot when he got like that but I stopped arguing back (most of the time) and just let him shout as it's not me he is mad at it is just life so he vents and then calms down. 

    You need to figure out what will work for you