Unheard & unseen

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.

Parents
  • 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.

Reply
  • 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.

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