Published on 12, July, 2020
Hi
I recently found out my partner has been diagnosed with high functioning autism. I have noticed on and off for years he has faced certain unexplainable struggles which to an outsider would very much appear rude and in ways aggressive but as I knew him so well and also knew his heart I always knew this wasn’t the case. After a lot of research I come across autism and managed to get him to agree to the assessment in which they confirmed he has autism.
initially after he received the diagnosis things seemed to get a little smoother for a while, he said the diagnosis bought him some peace, his words were “I’m relieved to know this is why I'm like this and it’s not because I'm messed up in the head” I was happy he felt relief from the diagnosis but also sad to understand how much he’s struggled himself and that he’s at times felt he was “messed up” However more recently he’s been having more severe “meltdowns” (please forgive me in advance if I use any terminology incorrectly, I am new to all of this and all comes from a place of wanting to understand and help him)
I have tried to follow advice online about staying calm, not reacting, letting him know your there for him and speaking to him when he’s calmer, but I just don’t feel like it’s helping him. Sometimes I feel no matter what I do I make the problem worse, equally I’m not sure if it’s normal to feel that way?
I’ve tried to encourage him to learn about his autism but he seems reluctant to do so. I’ve explained when he’s calm that if he learns about it it may help him manage how he’s feeling a little better, to know when to look out for what triggers him and so on but he just seems to be so overwhelmed a lot of the time and angry. On a good day I can get him to understand what I’m saying but it’s rarely followed by any action, just kind of feels like we go round in the same circle with no progress in terms of working on coping mechanisms, as by the time I’ve kind of got him in a good place shortly after something else triggers him and we end up back at square one again. It’s difficult and sad for us both, it hurts me to know he’s feeling that way and also to be on the receiving end of it and more so I’m aware it must hurt him to go through that too.
I’ve done a lot of research and I feel I’ve kind of understand his autism better than he does and how it affects him. I don’t mean for that to come across as ignorant as at the same time I’m aware somebody could say how do u understand his feelings better than he does which is absolutely right in ways, but equally I feel while he accepted it initially now he’s kind of in denial about it in a way and a bit lost and try’s to ignore it. He doesn’t want to tell anyone about his diagnosis, I’ve explained to him he has nothing to feel embarrassed about but I can’t help but feel he does feel that way regardless of what I say.
i wondered if anybody could kindly offer me any advice of how to deal with this in the best way to make him feel loved and understood particularly with an adult whose recently been diagnosed and although I’m aware he’s had to deal with this his whole life I guess in ways it’s still “new” to him too due to the late diagnosis.
Hollie said:I’ve tried to encourage him to learn about his autism but he seems reluctant to do so. I’ve explained when he’s calm that if he learns about it it may help him manage how he’s feeling a little better, to know when to look out for what triggers him and so on but he just seems to be so overwhelmed a lot of the time and angry.
There is a common saying in the autistic community that “If you've met one person with autism, you've met one person with autism.” Your boyfriend autism is individual to him and while reading about others experience of autism might help further reassure him that he's not alone most of it's probably not going to provide a great insight into his own nature beyond what he could get sitting down and doing a lot of hard introspection.
The way you are putting it could come across as 'read this book so you can learn how to be normal.' The true utility of him learning from other autistic peoples coping strategies is not in learning how to better handle him self it's that, just possibly, some of those autistic people have useful insights on how to handle non autistic people. That's the change in emphasis thats needed. It's not learn about how to control your autism, that's not a realistic objective, it's learn the methods other autistic people have developed for handling these hard things in the world around them.
Hollie said:I feel while he accepted it initially now he’s kind of in denial about it in a way and a bit lost and try’s to ignore it. He doesn’t want to tell anyone about his diagnosis, I’ve explained to him he has nothing to feel embarrassed about but I can’t help but feel he does feel that way regardless of what I say.
I get it. Sadly it's not as if knowing he's autistic changes anything. The fundamental problems he faces in dealing with life are still there. He can't approach every social interaction by first saying 'I have autism' and then trying to educate them about autism so they won't make an issue out of anything about him they find odd or off putting. People pay great lip service in inclusivity and diversity but the reality of it often leads them to back track when autism makes things get messy. That's true of employers, friends, people in general. Wanting to be selective about who he tells might just be good self preservation on his part. Depending on context.
Hi Peter, thank you for taking the time to reply it’s much appreciated. I have tried to explain it to him this way, that it’s almost a 50/50 thing in which non autistic people need to be better understanding of him and his needs and he needs to try and be better understanding of non autistic people. I’ve explained that if we can try and kind of meet in the middle with that then hopefully it will help him better manage his feelings and feel less upset and overwhelmed. I don’t know if that’s the correct way to explain it to him so please correct me if I’m wrong. I do appreciate what you’ve said though in the fact he can’t just say to everyone he meets “hi I have autism” I guess the realisation of that is difficult too because that will always mean he’s going to struggle to ever be “understood” I do think it would be beneficial for him to possibly tell family members and friends though, but equally I don’t want to force him into things at the end of the day it’s his choice and should always be so but I feel he doesn’t say because he feels he will be judged yet in all honesty I don’t think for one second his family and friends would. Would you say it’s helpful for me to encourage him to do so?
Honestly I wonder if encourage is the right word. It might be more helpful to be a sounding board. Or maybe the kind of sounding board that keeps raising the issue. If you present him with the 'right' answer he'll feel pressured and really is there a right answer? It's kind of subjective right? But if you come to him and point out a number of 'options' for dealing with a situation he's facing and start talking him through the pros and cons that might feel more helpful.
Thank you Peter, yeah I will try that and see if it helps. I guess you right it’s so subjective it’s difficult to know what’s the right and wrong things to do and say. Ultimately I’m happy to adapt in anyway I can to help him but I think as sometimes he appears to get very upset at what I say or do I’ve kind of resorted to not giving my opinion anymore, not out of not caring more so worry I’ll make things worse. Thank you for your time and advice it’s much appreciated