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My partner has autism and we are struggling

Carly

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. 

  • in reply to Carly

    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.

  • in reply to NAS39248

    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. 

  • in reply to Original Prankster

    Brilliant. Thank you so much. 

  • in reply to NAS39248

    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. 

  • in reply to Murmu

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

  • in reply to Original Prankster

    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 

  • I can see why such a dramatic change from being home to away would be tricky to adjust to. And communication may be much harder when you are not together anyway. I have nothing to recommend I'm sorry but perhaps relationship counselling from someone who understands autism might help you both work things through?

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

    Here (bookwise) is a free PDF of one I found really useful after my diagnosis as it involves developmental psychology through to adulthood, and the book title is pretty fair as a descriptive:

    http://www.autismforthvalley.co.uk/files/5314/4595/7798/Attwood-Tony-The-Complete-Guide-to-Aspergers-Syndrome.pdf