Support thread for autistic people in relationships with NTs

[IncompleteSenten]

I am autistic. (Diagnosed). I was DX as an adult after both my sons were DX and the professionals involved with them began to raise it with me.

Female autism typically presents very differently in women and is often missed and so we go through years of our lives feeling weird and confused and all sorts and just not knowing why.

My husband is NT. It can be really difficult. Its not his fault, it's just how it is but I thought maybe if there are a few of us we can have our own thread where we get to chat and talk about things we find hard and perhaps give each other advice?

Please can I ask when/how they first thought they might have autism? I think I was 40 or so and a friend had recently been diagnosed with ASD and ADD. She says she saw a lot of traits in my Dd but also in me and I started looking into it. It was like a million lightbulbs going off and suddenly my life and me made sense. My GP told me there wasn't much point seeking diagnosis as I was successful and would have to declare a diagnosis to employers. That put me off and I left it for a couple of years then asked to be referred after another professional recommended it. The more I read from women like those of you on here, the more lightbulbs go off and it's such a comfort.

@AutisticLegoLover I had two daughters with ADHD but was never questioned about myself at the time as it was still thought very rare.

Not long after I was diagnosed with epilepsy - the type of Epilepsy I have, sometimes known as Temporal Lobe Epilepsy, is strongly associated with autism - oh, and migraines (tick) and schizo-affective disorders (sadly my brother got that). I was asked to take part in a research project based at the University of Bath after doing a test which pointed out to the researchers which participants were non-NT.

I because of the epilepsy I was considered non-NT anyway as I have had auditory and visual hallucinations for many years, (auras of epilepsy), but this research work got me thinking. I started to read up about Autism in women and I saw my life suddenly make sense (the million lightbulb moment!).

A friend who has non-NT (one Autism, one ADHD) then suggested I got diagnosed, but I put it off and when I initially approached a GP I was told it was of no value (!!!!!!!!!) I did persevere, however and am now on the road...

Sorry this is a bit rambling, still frazzled from yesterday

aargh, para 4. should read "a friend who has two non_NT children"

Got MOT tomorrow. Massive change of routine. Say. No. More!.

@AutisticLegoLover mine was suggested by my therapist - I was continually having to go back for higher drugs & therapy for a condition that is a co-morbidity for autism. I didn't have a clue that there was a condition that fit everything I was going through, I just assumed that I was clumsy, no good with people and overly-sensitive (and in puberty, a "psycho" according to my mother). It wasn't picked up in my childhood because I was given all of those labels instead by both the GP & family - I was even told I had allergies because I scratched so much at clothes that I damaged my skin.

I get so many people asking me if they should go for diagnosis, and my answer is always the same - is it having a negative effect on your everyday life? What support do you think you will need from it? I hate having this label on my medical records, but it helps to know what can be resolved with therapy and what's fruitless after 20 years of trying.

@BlackeyedSusan

Got MOT tomorrow. Massive change of routine. Say. No. More!.

Good luck, hope it goes OK

Hope your day is going ok @BlackeyedSusan

Hi all, I came on here a good few days ago to say I'd be back and unfortunately I got distracted and it took me too long! Have now read the whole thread and will be making an effort to keep up from now on.

Anyway to introduce myself: I'm in my early 40s, diagnosed autistic in 2020. Mum to DD11 who was diagnosed in summer 2021. Married to a technically-NT DH but he has complex PTSD due to awful and long-term things that happened in his older childhood, teenage years and early adulthood. He has an anxiety disorder as a result. However he is also now a counsellor, having trained a few years ago, so while NT he is very good at fitting into our autistic household and also exceptionally good at having direct, intense discussions about things.

I guess I support him more than he supports me, as I am The Coper in the house. I support DD whose school-based anxiety is sky high at the moment and who has a lot of sensory issues. I support DH when his anxiety is getting the better of him - even mental health professionals sometimes need a few reminders about self-care to keep anxiety in check! And I take most of the responsibility for running the house, including pet care. I also have a full-time job so I wind up close to burnout a lot of the time. But I'm lucky in that I can work fairly flexibly and am currently working mostly from home again in line with the government guidance.

Hoping to connect with other autistic parents of autistic children here, it's something that's rarely mentioned yet given autism is genetic you'd think it likely that most autistic kids have at least one autistic parent!

So that's me, one of the many women diagnosed in middle age having come to the gradual realisation that they are autistic as a result of figuring out why their DC is struggling and working out that the DC is autistic. :-)

I've definitely found The Real Me over the last few years. DH says I seem a lot more autistic than when we first met. When actually it's that I am no longer going to great lengths to hide the autism as far as possible. I've spent my whole life pretending to be normal, a chameleon who would pick a person to emulate and just try to be like them e.g. in the way I dressed. Now I live in colourful dungarees (if they have dinosaurs on them then that makes them even better) and surround myself with things that please me from a sensory point of view. And also cuddly toys, lots of cuddly toys. I'm a middle-aged woman who rejects gender stereotypes, dresses like a toddler and is first in the queue when new Squishmallows get released, so I can try and snag the dinosaur one, and I don't care what anyone thinks of me anymore! It's a kind of freedom I've never had until now.

@blibblabblob hello and thank you for an excellent post! I really enjoyed reading how you are living authentically now, you sound fabulous

Will you have to stop working from home very soon? I read that the rule was stopping shortly.

@ofwarren thanks! I work at a university, so they're very risk averse when it comes to COVID and we've been mostly at home since March 2020. I will probably have to start going in regularly again whenever the advice changes, but thankfully they let me work quite flexibly even then. Unfortunately it took a pandemic for them to realise that lowly admin staff could work effectively from home! (Academic staff have always had the freedom to work flexibly.)

It's a big relief because DD doesn't cope well with childcare and is on the edge of aging out of it anyway (starts high school in September). So even if I go into the office while she's at school, since COVID I've been allowed to come home mid-afternoon and finish my day's work off from here.

I like the sound of dinosaur covered dungarees 😄

[quote EatSleepRantRepeat]@AutisticLegoLover mine was suggested by my therapist - I was continually having to go back for higher drugs & therapy for a condition that is a co-morbidity for autism. I didn't have a clue that there was a condition that fit everything I was going through, I just assumed that I was clumsy, no good with people and overly-sensitive (and in puberty, a "psycho" according to my mother). It wasn't picked up in my childhood because I was given all of those labels instead by both the GP & family - I was even told I had allergies because I scratched so much at clothes that I damaged my skin.

I get so many people asking me if they should go for diagnosis, and my answer is always the same - is it having a negative effect on your everyday life? What support do you think you will need from it? I hate having this label on my medical records, but it helps to know what can be resolved with therapy and what's fruitless after 20 years of trying.[/quote]
Mine was also initially suggested as a comorbidity (like you really want anything more 'wrong'with you?) My initial diagnosis was EDS as well as loads of other things. So you already feel like you are an utter drain on the NHS and often feel like you are collecting medical labels.

Regarding whether it is worth persuing an official diagnosis - here's my thoughts. Do you want that label? Probably not. Are you unable to work because it affects your life so badly? If so, I hope you have help and understanding, but you probably don't. Do you already have such debilitating physical illnesses that you have to apply for PIP in order to financially survive? Are those physical conditions already dismissed even though you have official diagnosis of them? Do you then go on to describe how your Autstic traits severely limit your life, but have them dismissed because you don't have an official diagnosis of ASD? Then yes, you need to peruse an official diagnosis x

May I ask - how do we get our own subforum? Do I report this thread to Mumsnet or something asking for such (not sure I like the sound of that!)
because there is an awful lot covered here so far that now really needs separate posts, and so many more questions to ask.

(For example, on a lighter vein. where is the best place to get size 20-22/xxl or any size dungarees online?!? fairtrade/wage manufacture etc if poss, bored of just leggings and tunic or dungadresses).

New to this thread but honestly I need it so much.

It's so challenging explaining why I am the way I am to my NT wife. It causes arguments and then when she gets annoyed I feel like the worst person in the world, like why can't I just be normal?

It's nice to know im not alone.

@LilyRed

There's a thread running in Site Stuff about us getting our own area, but they haven't got back to anyone about it. I think we're supposed to shut up and go into the Mumsnetters with Special Needs board.

I've been missing from here for a few days - my psych moved me onto the maximum dosage of my ADHD meds so I've been able to see sounds and hear colours while my brain adjusts

I made the mistake of reading some of the posts on the "other thread" and now I just feel really sad and anxious. Some of the comments about their spouses being "worse" since diagnosis really hurt because, for me, having the validation of an autism diagnosis has been so freeing. I am definitely more outwardly autistic now but I feel like I finally have permission to be me after a lifetime of feeling like a square peg trying to fit in a round hole. I'm unmasking and the pain and exhaustion of pretending to be a round peg is getting better every day.

I hope my DH isn't thinking the same about me

@BlibBlabBlob you literally just described my life and my relationship. Except we don't have kids (yet).

But my partner is NT with PTSD and anxiety, and I often feel the pressure is on me. My partner also recently trained as counsellor. Weird!

I think when we do have our child they will most likely be autistic because very few members of my family aren't! I feel like it might be a good thing to be honest as DP sometimes struggles to see things from my perspective.

@BarrowInFurnessRailwayStation

No, that's not right is it; Come on Mumsnet, Women with SN are one thing; Women with Adult (or other) diagnosis of Autism (and NT partners or not) is another; whilst there may be an intersection for some in both sets, it does not make us the same thing.

Off to check out site stuff

@LilyRed and others, the thread to request an ASD/ADHD/ND board is here: www.mumsnet.com/Talk/site_stuff/4309632-ADHD-ASD-board

[quote BarrowInFurnessRailwayStation]@LilyRed

There's a thread running in Site Stuff about us getting our own area, but they haven't got back to anyone about it. I think we're supposed to shut up and go into the Mumsnetters with Special Needs board.[/quote]
Yup

Well there's a section that we think sort of fits, they can just go there, I don't know what they're moaning about. 🙄

It's not like it takes a lot of effort to stick in an extra section. they aren't short of them. They've got a section for fish for heaven's sake. Last posted on about a year ago.

@amusedbush - don't read any more. I advise everyone here to not read those threads. They are heartbreaking. I'm still asking my husband if he secretly wishes he'd never married me and no matter how many times he assures me he wouldn't have me any other way, even to the point of being hurt that I could ever think like that, there's a part of me that struggles to believe him because I can't get those threads and the hate and resentment spewing out of them out of my head.

My eldest is desperate for a relationship and I am strongly advising him to only consider dating an ND woman. I don't want him accidentally ending up with someone who seems like they loathe him just for being him.

My eldest is desperate for a relationship and I am strongly advising him to only consider dating an ND woman. I don't want him accidentally ending up with someone who seems like they loathe him just for being him.

I worry about this as well for my two sons. Lovely lads, but I know a NT would expect too much from them because expectations are too different.

@IncompleteSenten

I knew it was a bad idea when I opened it so I basically hurt my own feelings

I definitely won't read it again. I already feel so awkward and like I'm constantly misreading everything and doing the wrong thing - I don't need to see confirmation in black and white that NTs really are thinking that of me!

@amusedbush I know exactly what you mean

@LilyRed and @BarrowInFurnessRailwayStation dungarees that are ethical, lovely quality, offer a very inclusive size range and sometimes available in dinosaur print can be found at Run & Fly and also Lucy & Yak.

www.runandfly.co.uk/

lucyandyak.com/

Both have FB 'fan' groups too that are great for getting sizing advice. Both vary a bit between styles, unfortunately, and also both tend to be quite generous which is great if you like REALLY baggy dungarees but most people size down. I find with both brands that the size below the one I actually measure as fits much better than the size I ACTUALLY measure as.

Enjoy!

@Alysskea wow it sounds like our lives are super similar! Long-lost identical twin perhaps? ;-)

Becoming a parent has completely changed my life. Mostly in a good way - I'd probably never have figured out I was autistic, for a start, if I hadn't had DD. But it is utterly exhausting and if, as parents, you're not 100% on the same page with parenting decisions and approach it makes life very difficult. Thankfully DH is generally happy to defer to me on that front!

I feel awful for passing autism on to DD as I see how much anxiety she battles on a daily basis and wonder how much easier her life would have been if she was NT. But then again I have no idea at all how I would have coped parenting an NT child; I don't think I'd have had the faintest understanding of them!