Married to someone with Asperger's/ASC: support thread 6

[Daftasabroom]

New thread, and as previously:

This thread is for partners seeking to understand the dynamics of their relationship with someone with ASD. It is a support thread, and a safe space to have a bit of a rant. Avoid sweeping generalisations if possible, try and keep it specific to you and your partner. (ASD partners welcome to lurk or pop in, but please don't argue with other posters and tell them they are wrong).

@SquirrelSoShiny I'd love to know how many of us married at speed while our partners were still viewing us as a special interest.

DW had separated from her previous husband the week before we met, we spent the night together on our first date and every night after until I had to travel abroad. We moved in together less than 6 months after our first date. We got engaged a year after our first date and were married six months after that. Six months later she gave up her full time career job and didn't work full time again for another twenty years.

I'm husband number three. As far as I know she went straight from home to DH1, to DH2, to me, without ever really having to fend completely for herself.

@Daftasabroom maybe you're not the only one with ADHD lol. I'm only half joking! There's a big overlap between ADHD and ASD, especially if you have the anxious, hypersensitive hyperfocus type (like me). Perimenopause turns it up several notches.

I’ve posted before on this thread, but not since page 2. It’s been difficult for me to think about how I could contribute both coherently and honestly. Once again @SquirrelSoShiny I can identify with so much of what you have shared, and with many others who have posted here too, although there are some differences.

We have had couples counselling, but one of the reasons it wasn’t successful is that it only made us better at communicating in a perfunctory way, not in an emotional way. I have no feelings anymore, or maybe I just have feelings that I can’t face putting words to. Maybe the consequences would’ve been just to great and the fact is that I still don’t believe the right thing to do would be to leave him. There was still so much that I couldn’t say to him and who knows whether he actually wanted to say anything more meaningful to me. And we never really got to the heart of things in the way that I have in one-to-one counselling. Differences were mentioned but more in the way of scientific brain/creative brain but I think that is an oversimplification. The term Neurodiversity or anything relating to it never came up. I was not courageous enough to raise it, although I have with one to one, where my counsellors take on it was that we are all a mix of our biology and all that we encounter along the way.

So I try to look at where we intersect rather than attributing all the difficulties in our relationship to my husband having ASC.

I too probably have ‘mild’ ADHD and autistic traits. My counsellor’s first stance was to attribute this to my very complicated upbringing and it was me that raised the likelihood ND with her. My husband has ASC and is very successful in his work. But he too had an emotionally impoverished upbringing and it is likely that both his mum and his siblings have ASC as well, which all contributes to upbringing & environment. So for both of us our ND difficulties are over determined.

I think I will contribute more in another instalment so as not to create too long a post for people to read. Apologies for stopping so abruptly for now. I will be back!

There is no such thing as “mild” autism.

it is an ableist term.

using phrases like this highlights your ignorance around autism.

Would you prefer that someone described there lives as mildly effected by autism vs severely effected by autism?

I'm an amputee but it really doesn't effect me that much, obviously others can be severely effected by amputation.

To be fair @StopHateAgainstAutisticPeople @QualifiedDys didn't use the term "mild autism". A long post with personal insights and the best you can do is misquote the poster?

A proper diagnosis of autism means you suffer a “clinically significant impairment in every day activities”

so there are going to be very very few people - with a PROPER diagnosis who say autism only affects them mildly. This is a VERY important point for you and several others on this thread to understand.

the term mild is often used by non-autistic people who are unable to put themselves in the shoes of an autistic person and because they can’t see the issues, they refuse believe they are real.

that’s is what makes our lives very hard.

I know with ADHD it tends to be classed as mild, moderate or severe BUT in my experience some psychiatrists tend to avoid labelling it that way because it doesn't really do it justice. Is my hyperactivity less severe because it's mostly internalised? Does my ADHD not define me because I often control impulsivity? To an outsider maybe yes - I'm not jumping off rooftops or in prison for joyriding or bottling someone in a pub. But obviously it still has a cost, mostly in terms of the energy it takes suppressing impulses and hyperactivity. Masking. Blending in. You get the idea.

So while I understand that some people don't like classifying by mild / severe it's a functional shorthand for people describing their own experiences If I had to describe my ADHD I would say it's moderate in general but more severe when I'm premenstrual.

There are several posters on this thread who have autism or are raising children with autism, all of whom have said they find it helpful. I'm not sure why any one person believes they are 'the voice of God on the subject of autism.' There are wide ranging views on this thread. The key difference is that most posters here are posting in good faith to understand and support each other. Most, not all.

I repeat, to get a formal diagnosis of autism, but a properly qualified person, they need to see you are “clinically impaired in every day activities”

it is not appropriate for anyone. Autistic or mot, to describe someone else’s autism as mild.

maybe ADHD can be mild - I don’t know because I do not have any knowledge of it and I would be so fucking rude and ableist to pass opinion on how it affects people.

but it is ableist to refer to “mild autism” and if someone claims they are autistic but only mildly affected then frankly I would suspect they’d self-diagnosed.

@StopHateAgainstAutisticPeople you have quoted my comment that I am at the mild end of the autism spectrum as bullshit. Please can you educate me as to why, as this is exactly as I am diagnosed by my psychiatrist who is a trained medical professional? I assume you are not but correct me if I'm wrong.

I do not live in the UK and have not for a few years so perhaps this is bad use of language but I assure you she did all of the standardized exams used in the country in which I live and formally diagnosed me as being on the autistic spectrum, and she stated it is mild based on my characteristics and behaviours.

It was not just something I made up for fun.. if you can read French I will happily share said diagnosis so you can be reassured it is not just "bullshit"!

I was about to start to explain why she said I am mild and why I was finally diagnosed at almost 40 but actually I do not need to explain myself to someone so rude. Let me know though if you're interested in reading some French and are in the mood for being proven wrong. I'll happily share the autism spectrum diagnosis for all to see!!

It's up to individual posters to share what they're comfortable sharing, isn't it really? They certainly don't owe you or me an explanation.

@MomentOfCalm you do not owe anyone on this thread any explanation for anything. Your personal medical history is your own

@StopHateAgainstAutisticPeople no one is describing someone elses autism as mild. Mild autism or perhaps borderline autistic spectrum disorder is a subject of debate amongst professionals and academics.

@SquirrelSoShiny as I said I will happily share, but it's in French. She actually said it's mild as it doesn't affect me to a degree it stops me having a job, living a "normal" life etc. but I have cognitive deficits related to theory of mind, repetitive thoughts, below average empathy and co-morbid anxiety, largely social.

She mentions it's mild as it went so many years undiagnosed but actually after she diagnosed me it was a relief to finally understand myself and why I have struggled "mildly" as I have for all these years but enough that my mental health has suffered. She pointed me towards Tony Attwood's books and it's been a huge help and has given me many lightbulb moments and a better understanding of not only myself but DH (hence I feel able to comment) and also DC.

So no, I am not just uneducated, undiagnosed idiot talk "bullshit" @StopHateAgainstAutisticPeople - I'm actually super educated on the subject and sympathetic towards my husband.

@StopHateAgainstAutisticPeople , I do appreciate that there is no such thing as ‘mild’ in terms of ND or disablement. In terms of the distress my apparent ADHD & ASD traits have caused both me and also others at times, they are far from mild. But I do function well in a NT world in many contexts. That is why I used the word with quote marks.
You have got this wrong and you need to recognise that. Do you realise that the way in which you are responding comes across as quite ‘hateful’ of anyone on this thread trying to express their reality, however ‘honest’ they try to be? I read no hate here apart from yours, and there is certainly none from me, People on this thread clearly need to explore this issue. You should stop following it if that bothers you that much.

Well from my side I suspect I have largely been educated by a non-English native speaker who expresses things far from eloquently at the best of times, in a far from politically correct country, but who is actually an excellent psychiatrist!

I want to make another point which I think is important.

For anyone over the age of 30, they may well have had to 'self diagnose' because childhood diagnosis wasn't an option. I self diagnosed my ADHD and 'diagnosed' my close friend's autism. Why? Because we only had the option for diagnosis as adults. At this point we were able to start the process of official diagnosis. With better awareness came more information and better odds of self-recognition.

I won't be so rude as to demand any poster outline their diagnostic history or to have a go at them if they too had to 'self diagnose' in order to actually start seeking assessment.

Following with interest. I'm 44 diagnosed age 42 autistic and I also have many ADHD traits. I don't find anything offensive but I would be upset if I thought my husband was posting about me. I take things very personally. But I do know and get it can be extremely hard for the other partner. I do find he has tried his best to understand being Neurodiverse, but, I still don't think he really gets it. we have a 12 year old son diagnosed also who is currently very hormonal things are difficult at the moment with his mental health. Hubby took some time off work recently to be there for us more. Which I'm very grateful for .
I know I get on his nerves a lot of the time. My lack of organisation/executive functioning, struggling with housework ,my habits and social anxieties and special interests. I'm not sure if I can help anyone in here I know it can be frustrating for the other partner. Hugs to all

A hug to you too @Bluebellfae I think the overlap between Autism and ADHD is fascinating. I could honestly have written the whole latter part of your post 😂🤗

I can't speak for every post on here but the vast, vast majority I've seen are from people who are committed to their longterm relationships and trying very hard to sustain and nourish them. Sometimes this thread is a real lifeline because people here just understand.

I hope your son is getting the support he needs. It's a tough age even without neurodiversity to factor in. Bloody hormones. They have a lot to answer for (says me at the other end, struggling with perimenopause 😱)

You cannot self diagnose autism. Amd as for diagnosing a third party - that is laughable. It is complex. What may seem like autistic traits can actually be due to childhood trauma. And I got my NHS diagnosis in my 40s. It’s hard, it’s long but there is no way I could have self diagnosed and been happy about it.

There is also no such thing as mild autism and you do the autistic community - and that includes your children- huge harm by referring to it. My autistic children, and yours, and go to grow up in the world that I have. One which is full of misunderstanding, stigma and prejudice. It has destroyed my mental health. I was bullied at school, university and in several workplaces. I don’t have many friends as I don’t understand how many mon-autistic people operate and any sort of difference is viewed negatively.

so no I don’t feel hate, but I have a lot of anger as I see myself as a fundamentally decent person. I try to help people, I try to show kindness but it is never enough. so think what you like of me (which is not much I know). But the attitude of many posters here is adding to the collective discrimination against autistic people.

I'm not sure who you're addressing. If it's me read what I wrote again:

a) I never used the term 'mild autism'

b) As adults we are forced to self-diagnose first in order to seek diagnosis. You and I chose to seek diagnosis. Others may choose not to.

c) I am aware of the complexity of diagnosis as I've been diagnosed myself, as well as working in related fields. That said, sometimes it's trauma etc but sometimes when it walks like a duck and quacks like a duck, it's a duck. At those moments we might say to loved ones, 'hey, you might find it helpful to go see this duck expert! They might tell you you're a duck.'

d)If a poster chooses to describe their own autism as mild - because it's their experience, because their psychiatrist used that term - they have the right to describe their own experience in that way.

Your pain is very apparent and I am truly sorry for it. Lots of us are neurodivergent ourselves and have had that experience of feeling like outsiders looking in. I suspect lots of us empathise with you.

But - we are not your enemies. We are the people who fell in love with people with autism and are trying to navigate those relationships. They can be complicated. We need this thread, it helps us stay and figure things out.

You are really welcome to PM me, I mean that

@StopHateAgainstAutisticPeople

But people here are not talking about autistic people in the workplace or schools or friendship groups or anywhere else. We are talking about our partners and spouses.

One which is full of misunderstanding, stigma and prejudice. It has destroyed my mental health
Look, my H is only recently diagnosed, but prior to that I have wasted 20 years of my life trying to understand my H, trying to find the way to communicate, to understand, to think if I could only do that I could find a way to make things better. And how much time has he spent trying to understand me? Absolutely none. So don't you dare, don't you dare, throw the accusation of not understanding at me.

And as for mental health, if you read this thread with honesty, you will see that the people here are talking about the appalling effect on their mental health, on their emotional health. It has near destroyed me, I have been on the verge of total breakdown. It now takes all of my effort just to keep myself just above the breakdown line, so that I can be an acceptable parent. But I am not the person I was and I don't even know who I am, and I doubt I ever will again. I am not the parent I wanted to be, because the strain and exhaustion and hopelessness of living with someone who is incapable of ever really seeing me, with their rigid and inflexible thinking, their need to be right, their emotional disregulation is just really, really hard and really relentless.

And you want to take this thread away, these people who are already isolated, already lonely, already struggling because our reality is uncomfortable for you. Well it is a reality. That might be hard for you to accept, but it is. And this is our place to talk about it. If that upsets you then feel free to get off the thread.

@StopHateAgainstAutisticPeople Please can you educate me - how would you refer to somebody who is diagnosed as autistic but not hugely impacted in day to day life and the traits are more subtle. I honestly don't know so would genuinely like to hear.