Published on 12, July, 2020
Looking for a little advice I think, I don't really know. I also just need to put this out there as I feel I'm gonna burst.
I was diagnosed autistic last year, with suspected ADD and was advised to go get that diagnosis as well (I don't think there's any doubt of that) I strongly supect elements of PDA as well.. The last year has been a tough one, with my wife and I trying to getting a handle on it, much discussion etc,etc. I felt lucky in realising I've never really had to mask at home with my wife, I've always just been able to 'be me' The only time in my life really.
We've 4 wonderful adult children / step children between us, one of who was diagnosed ADD two years ago and has recently been diagnosed autistic (we've all suspected it for years, its great to have it confirmed as they're accessing support now) They're also very gifted, another difficulty they've struggled to overcome in terms of personal connections. ADD meds have enabled them to engage in the world and it's a joy to see them blossom into themselves. They get support and concessions at work, etc.
My wife is very supportive, but it's been a lot for her to get her head around in terms of my diagnosis - I'm not great at getting things done, I suspect an element of PDA but not going to make excuses. We've a 'fixer upper' home, I tend to go through spurts of getting work done, burn out, self loathe until climbing out and repeating the cycle. We can both see that now, we've struggled though, me to find a way to manage and avoid the cycle, my wife to realise that this is maybe as good as it's ever going to be. It's been helpful that we have great communication and have always been able to talk. That's what I'm struggling with at the moment though.
We've all watched a lot of videos, read articles etc, since (lets call him 'Henry') Henry's diagnosis my wife has often remarked that 'Henry must have really struggled' 'It's must have been so hard for him' 'The PDA must be so difficult, and being gifted as well' etc. I totally agree, as I too can see how hard it's been for him. When we all meet up now, we do our best to accomodate Henry's needs - for example, all hungry and looking for a restaurant, we walked around 4 or 5 before finding one he was comfortable in. I struggled in it though as it was very noisy but knew that my wife couldn't walk around anymore, so in trying to accomodate her needs too, I said nothing. When Henry went to the bathroom, she expressed how hard it had been walking round - when I agreed but said I was struggling with the restaurant choice she was angry and asked why I had said that - that she had tried to accommodate for us both so much but that, essentially, I was ungrateful of her efforts and I shouldn't have said anything. We were tense for the next couple hours.
We've a family get together soon, I'm excited for it but dreading it too. My brother in law was diagnosed Autistic/ADD two years ago, he's certainly got PDA and is also recognised as gifted. It'll be the first time we've all been together since any of us were diagnosed, and its bound to be discussed. I know already it'll be framed around a 'and being gifted makes it all so much worse' aspect and where other members of my family are loud and talk endlessly, I don't. I'm fairly certain, and dreading this talk as I'm just going to be overlooked entirely. I can already feel the stress and don't want to spoil a special family get together by having a meltdown.
All this has left me just feeling utterly hollowed out. I love my family, I love my wife, I love our kids, but any discussion of autism / ADD now is framed around their autism, their giftedness, their PDA and how hard it has been for them and how they've struggled. I feel unseen, my struggles when bought up get eclipsed with 'yes, but Henry...' or any information read/watched is applied to them.I feel guilty like I'm not being supportive of my stepson, I've wondered if I'm just jealous of the attention he's receiving, but I don't think either of those emotions is correct, I am supportive and am relieved and so happy Henry is getting support and thriving. I feel like, for the first time ever he can present his real self to the world and it's wonderful. Meanwhile, I'm having to mask with my wife when I never have before. When we discuss anything Autism/ADD/PDA I can never discuss how I struggle because by comparison, I don't have it as bad or something. The focus on giftedness just ties in with a lifetime of being told I'm stupid, lazy, etc. I don't know. I find myself withdrawing and making excuses for not being happy, or just smiling and pretending it's all ok while inside I'm trying not to scream, but crumpling when I'm on my own. I feel I'm losing myself and just getting swept under the carpet. I want to talk it through with my wife but just can't face another round of feeling unheard, unseen, or that I'm just letting her down in not getting it together, while my brother in law and stepson are both in good jobs and doing ok. Maybe I am envious of the support and understanding they receive, that they can get on and overcome or at least somewhat tame the same conditions that just leaves me wrecked.
Hello Oslo, that is quite a lot to work through. I hope we can help with suggestions on some of it at least.
On the couples relationship with your wife there is gap growing it seems. Her understanding or possibly tolerance of your neurodiversity is at risk of changing to contempt if you don't address this I fear.
On this front I would recommend getting a therapist who can help you with your neurodiversity (autism and ADD) and also provice couples counselling - perhaps sell it to your wife as you feel you are afraid that you are drifting apart and want to heal the relationship and want her to be a part of this.
I found doing this had a very positive effect although it did highlight one area of contempt that required a lot more work than I anticipated, but our partners are only human and have their own traumas, flaws and experiences that shape them so will have their own issues to process too.
Oslo said:I feel guilty like I'm not being supportive of my stepson
Just keep looking out for his needs as are reasonable. You need to advocate for both your and your wifes needs too so it will be a balancing game and I suspect strategising more will help you here.
When you have a day out, do some research beforehand to know what is there and how to get to it - this means you can lower your own anxiety as far as is possible, and maybe book one of the better options in advance. Not always possible but at least you know what is looking good and can try them first.
You are always going to be second fiddle to her flesh and blood son - accept this and try to enjoy what you can when you are all 3 in the dynamic because she will always put him first. If you struggle to do this then the therapist can help you.
Oslo said: I want to talk it through with my wife but just can't face another round of feeling unheard, unseen, or that I'm just letting her down
The following book my be worth getting for your wife:
Loving someone with Asperger's syndrome_ understanding & connecting with your partner - Ariel, Cindy N (2012)ISBN 9781608820771
At least those around Henry have an understanding of autism which is more than most families have so you are actually in a better position than most. I would just point out that while Henry is gifted, you are not so your experience is quite different. If they want to know why then explain to them about autism being a spectrum so everyone is unique. If they don't ask then they probably don't care so I wouldn't waste energy on them.
All the above is my opinion only but I think you would get a lot of benefit from a therapist.
Hi Oslo.
Clicking on your profile, I can see that I am a similar age to you.
I'm only recently diagnosed and have no other autistic people in my life.
I do find it hard to accurately process large blocks of text (not a criticism! This is me!) are you saying something like Henry's strengths are being implicitly compared to your weaknesses? (I'm referring to the Spectrum pie charts that I see showing how all autistics are different.)
Anyway, I think it is best to tackle these things not in the moment when under stress and at our least rational, but another day when everyone is more receptive.
If you are like me, you will find it hard to have a conversation like this, because I can make a good starting point, but then I find it harder and harder to keep up with the flow of the conversation. (My wife is such a good conversational chess player, and she can wrap me in knots in minutes - right or wrong) So, I wonder if writing a letter would be a good approach? Maybe use what you have written here, with some of the things that may cause a defensive response removed?
Oslo said:I've wondered if I'm just jealous of the attention he's receiving
Unlikely! Surely it's more a case of your needs not being met, or not being met as well as you'd been used to. I live in a household where I am one of several neurodivergent people. Our needs often conflict. Like you, I often feel that mine are ignored in favour of others. All I can do is make mine known in as gentle a way as possible from time to time. Any accommodations I can get are welcome, but it's not always going to be possible. Sometimes things overwhelm me and I lose my rag completely.What sometimes helps me is to talk about how I feel with the others at a calm time when I'm not needing or expecting any accommodations, just so they know how I feel at times. The situation is just less tense if conversations happen when I'm not already close to breaking point. It's tough.