Possibly autistic & ADHD kids, DH can't cope

[BMIwoes]

Sorry this is long. We've been together 18 years and mostly v happy. Have 2 sons, age 10 and 11. 11 Yr old has had problems with emotional regulation for a long time and it's getting worse. His new secondary school (Yr 7) suspect he may have v high functioning autism and have been masking, but now can't manage it anymore as he gets older and life is more complicated. We're on CAMHS waiting list. DS2 is also on wait list for ADHD assessment.

Me and DH work full time, mostly from home. He earns more than me but we both have good income. DH more than pulls his weight at home, I'd say its truly 50/50. He's supportive of my career (I'm much more senior than him but lower paid industry). We don't have money worries thankfully.

Prior to Covid we had a lot of support from PIL, who would look after our boys for a few days every 6-8 weeks. Post covid they are of course older, and our eldest is harder to manage, so they can only manage 1 boy at a time and much less often. This is of course fine, but I only now realise how important that regular break was for us and especially DH to decompress from the stress of managing DS1.

The problem is DH struggles so much to cope with the kids and its making all of us miserable. He is constantly irritable, snappy and joyless. He doesn't want to do anything with the kids although happy to take them to and from things. Every day feels like he is just trying to endure it until they go to bed. It leaves me in the position of being the 'nice one' which of course makes things worse and more imbalanced. Holidays are particularly bad as DH gets so overwhelmed after 2-3 days and then sinks into misery. I feel like I'm trying to manage everyone's emotions all the time and it's exhausting. DH hates the fact that DS is so rigid and yet he is also very rigid and so they clash constantly.

I suspect DH may also be neurodivergent, and possibly me as well. Some of the things that we have in common is we both get easily overestimated, need a lot of time alone to decompress and can be very obsessive about our respective interests. I'm a lot more emotionally articulate than DH and will prioritise alone time as I know if I don't I can't function. DH will stay up super late to have time alone but then is exhausted next day and so more irritable. He's no good at identifying and saying what he needs. I feel resentful that he doesn't seem able or willing to make an effort to help himself so he can be less miserable. He resents me because he thinks I'm being selfish. We're both exhausted. It's horrible. I want to help him but he gets defensive and angry if I try tp talk to him abput it. We're all miserable. I don't know what to do.

We see a child psychotherapist to help us deal with DS1, and are registered for a non-violent resistance parenting course soon which I think may help us with the kids. But DH is so down about everything it feels like anything we try is fighting a losing battle.

On the face of it we have a good life - good jobs, nice home etc etc. But it feels like cracks are appearing and I'm powerless to stop them

My DH did a course on non violent communication which really helped him cope with our challenging teen boys. It definitely calmed things down at home and as a plus the DC learned how to communicate more effectively.

OP, we’ve just been through a private autism diagnosis for my son aged 8. If you want to message me I can tell you about the process - from first meeting the clinic/practice to diagnosis took about 2.5 months. We’re still in early stages of understanding what the diagnosis means for our son, but for us we had to know one way or the other. He’s the emotionally volatile, regular meltdown type which affects the whole family. I 100% hear what you say about the more easygoing sibling getting a bit neglected.

apologies @alyceflowers , yes I did mean to tag you @MissHavershamReturns . Thank you, I had assumed the meds would help only with concentrating and organisation, so that is really interesting to hear.

Op look up sensory diet and see if some will work with ds. Also I’m in a flat and have a small indoor exercise trampoline for dd, you don’t need a big trampoline it’s more about the motion, we also have a bouncing chair that she required to stim and self regulate on.
One of our cupboards had been turned into a quiet space for her to decompress in.

Forgot to add dd is 15 so not small but her sensory needs appeared to increase going through puberty.

Sutcliffe Park is a good place to climb and they also have skateboarding sessions.

(Sorry I just snorted at "organising his collection"!! I don't think he needs a formal diagnosis)

Hello! So you sounds exactly like me and my family, we are about five years ahead of you in the timeline, and spoiler alert if you don't take action now, you are going to have a breakdown.

You've had loads of great advice here, you need to stop trying to keep up with what's considered "normal". My advice would be to outsource everything you can afford to outsource, OR drop your hours so you can do more and not burn out.

Also you need to give each other lots of alone time, however you can, you both need it. Make a plan together on what that would look like and how you can facilitate it. I have to get my time away from home as otherwise I'm "on call" so I build that in, whether that's long walks, cinema, weekends away alone.

Drop the standards with kids, don't battle over things that don't matter. it doesn't matter if they don't do chores, it doesn't matter how much screen time they have, it doesn't matter if they seem rude and need alone time as well, don't worry if they are age inappropriate and need to stim etc.

My kid was so freaked by school they didn't go for almost half of their secondary education, initially stressful but you can't live in that state so we just went with it, removed demands and now he is successfully pursuing a career in his special interest subject. ]}

We hardly ever eat together or holiday together, we tried for years but its just didn't work for us. We all live together very happily and have fun together and really like each other, we just had to learn how to do this first.

I find the approach with my partner to be to sit down and do some collaborating problem solving, thinking outside the box and not placing any blame, just thinking, ok this is a problem, what outcome do we want and what's the quickest/easiest way to get there, forgetting the "usual" method and what other people will think. That makes him feel on side and included and more importantly respected and heard.

@bunhead1979 's advice is good. I wish someone had said that to us three years ago. We had a lightbulb moment when we went for some relationship counselling and the counsellor said 'do you realise you've spent every session talking about your daughter? I can't even get you to talk about your relationship?'

We do manage to eat together (goes better in cafes), holiday together (we go to the same place a lot) and school is okay mostly (but before diagnosis things were really bad with homework). We've given up on homework (with the school's support but gosh it was hard for two teachers to let that one go) and monitoring screentime other than working with DD on the social misunderstandings that happen regularly and looking out for inappropriate content. It doesn't seem to make any difference to her sleep how much she's on screens, but we do need to regularly drag her away from them by doing outside/exercise things.

She is a massive sensory seeker so most of those things involve sand, water, mud, going quickly, hanging upside down, bouncing, jumping...

She pretty much refuses to read apart from for functional reasons - it seems that this may be because of eyesight issues following an operation 5 years ago, so we're seeing a specialist for that currently. She can read quite well if made to and has good vocab.

Despite being in an area (and school) where a lot of parents go for competitive entry tests for secondary, we have had to completely forget all that. While that's absolutely the right decision, I am finding it a bit awkward with the other parents and it means that the content at school is becoming quite irrelevant to DD at times (fortunately she likes non verbal reasoning anyway). If our EHCP ever comes through - currently awaiting tribunal response for refusal to assess - I might try to bring up with school how her year 6 can be made more relevant to her.

I could really relate to the poster who said about obsessively watching certain shows. DD has watched every single episode of Tracy Beaker and all the spinoffs, Malory Towers, and Operation Ouch. The first two are really handy for social communication. I ask her e.g. 'why do you think Tracy is crying/shouting?' 'What do you think [character] should do?'. Operation Ouch I have learnt a lot from, although it took me a while to get over being made to watch the episode about necrotic tissue and maggots over lunch...

I sometimes think what she can do when she grows up. At the moment I think sales person, actress or mortuary assistant.

@Phineyj agree about boundaries, you can still have them, you can still "steer" but just don't let them be the be all and end all.

My younger kid (ADHD) does have sleep problems. Advice from CAMHS was give them a milky drink at bed time. 😆IF ONLY I HAD KNOW THAT WAS ALL I HAD TO DO!

I have found the last year or so interesting when ALL of my friends kids have been studying/applying for uni/moving away and there is all this pride (and showing off if I am to be honest, as if "of course this is what was going to happen") and the sheer horror I see on their face when I say my kid dropped out and is doing something off piste. You have to change your mindset, they just get where they are going a different way, I hope we are parenting in a way that shows no judgement or disappointment, I wish I'd had this level of understanding and support as a teen.

@Phineyj all solid career paths 😀. DS1 is particularly into anime and manga so we need to keep an eye as some can be quite inappropriate. What is strange though is he tends to switch his obsessions quite frequently, or will return to a previous obsession months or years later. It's like he is compelled to learn everything he can about something and only then then he can move on.

To be fair, I was similar at this age, I watched the same few videos repeatedly for days/weeks on end and then talked about them until I was told to shut up. He is, like me, a voracious reader and his sleep is appalling (as was mine). For him the biggest problems are with peers. It's like he is standing on the edge of a social bubble, looking on enviously, wanting to join, trying and failing and totally unsure as to why. I was the same but I reacted by becoming introverted. He reacts violently at school and home, which of course makes things much harder.

@bunhead1979 thank you, this is such helpful advice. I think we have spent a very long time feeling like we need to train our kids to behave 'normally', then feeling ashamed when they don't, and wondering what we have done wrong. Then we have tried everything from being super strict to super gentle and none of it works. Perhaps we just need to let go of all that.

Has anyone tried those noise can elling earplugs? Loop/calmer etc. I was thinking yesterday that it could be great for all of us. Ds2 at school to help him focus, the rest of us at home to try and calm the constant overwhelm.

DD has PDA type of ASD so yeah, telling her what to do is not really a thing here (actually I can but our relationship at that point has to be rock solid - if there's any kind of teeny difficulty, stress or even excitement sometimes she can't even do things she wants to do).

I too have had to find my inner Elsa: Let it gooooo...

Regarding sleep difficulties, we had loads from age 3 up. Following the ADHD diagnosis she was able to describe how her head wasn't shutting off and letting her sleep. There is a useful publication from one of the ADHD charities (ADDISS?) called 'Sleep Seekers' that details how sleep difficulties occur in their sample group at about twice the rate of the non-ADHD population. It's a good one to reference to your "milky drinks" type of muppets.

Slow release melatonin 2mg half an hour before bed has changed our lives. The paed prescribed it at the ADOS and the GP took it on. It hasn't done anything much for early waking like clockwork (although age has helped a bit like that e.g. lying in till the times of say 6am or even...gasp...7am once in a blue moon instead of 5am) but means she can fall asleep in 1-2 hours rather than 3-4. Although one of us still has to sit in her room...

I wish people understood better what 4 hours a night of essentially fighting with someone who can't sleep, does to a family, a relationship and people's careers.

When I occasionally do a bit of hobby stuff I play classical music and I like Honeywell construction earplugs. They have got me through many a noisy opera/music theatre performance and also the hell that is Young Voices at the O2.

It wasn't funny at the time but during one of the 4 hour sleep resisting episodes when she was about 6, DD used a large throw as an Elsa cloak, ran around shrieking let it go, caught her foot in it, fell and bashed her head on the skirting board.

Every night was that like that for several years.

Get straight onto Amazon and buy them now. Anything at all that can help home life should be an absolute priority. Do not hesitate. This has been going on far too long already.

I did kind of "know" but I was also worried I was "that parent" or just a crap parent, so it was very useful and validating to get it in black and white.

The diagnosis also meant school took her difficulties more seriously.

The Owl Centre do private add diagnosis. My dd was diagnosed with high functioning asd aged 11.I paid privately for an educational psychologist assessment and she then sent a letter to the GP requesting an asd assessment. That was during COVID and I had an option if waiting on the NHS or using the Owl Centre. I chose the Owl Centre and they were excellent.

I strongly suspect her dad has asd and ADHD as he has a lot of traits too. Knowing she has asd has been very valuable to my dd going into secondary school.

I third climbing and particularly bouldering as a potential bonding activity or way to destress. It is social but in a way similar to board games (people often work together to solve bouldering problems) and generally a very supportive environment, it’s also as social as you want it to be, so no pressure there. Your DH and son can be ‘together’ at a wall whilst working on their own problems as well.

I think it attracts quite a lot of neurodiverse (as well as nt) people.

Sorry this is a bit garbled but I’m on my phone so can’t edit too much.

We used the Owl Centre to find a play therapist and she was excellent.

@Phineyj that's really useful re: sleep. He's always struggled to go to sleep but when he was smaller he would let us try to help. Isually it would be me sitting in his room.for a couple of hours chatting quietly or listening to the Calm app together. Now he's older he wants to be alone and just sits up reading or doing puzzles until all hours. If we go in and turn the light off/take the puzzles away etc he either has a meltdown or just fets up as soon as we leave. He sleeps late if allowed but of course has to get up for school. Then he's exhausted and less resilient. Melatonin or something to help him drift off would be great.

It's worth a try, isn't it? You can buy it online, but if you think you'll be seeing a paediatrician for an assessment, you can ask them if they'll prescribe. I don't think it works for everyone but it does for us. I wondered if it was partly placebo but when DD doesn't take it there's a very noticeable difference (we take an occasional break but I've also tested it once or twice with a visually identical vitamin D tablet).

The NHS paediatrician we saw recently recommended Omega 3 and 6 - he said there was solid evidence those help with ADHD symptoms. DH managed to find a flax seed based Omega 3 so I now need to find something similar for Omega 6 -- as DD can tell anything fishy smelling several miles off!

Yes although I have noise cancelling headphones (ie they cover my ears) and they're a godsend when the kids are too much - I can put calm music on too which is a nice way to drown them out

I guess for DS2 at school he might be self-conscious about ear defenders, in which case something in-ear would be more subtle and probably more acceptable. I find them a bit uncomfortable though, personally - you might have to experiment to see if there are comfy ones.

I'm going to get some Loop earbuds for me and Calmer kids for DS2, worth a go. DS1 and DH already have noise cancelling headphones that they both just forget to use so will dig them out.

I've been in touch with the Lorna Wong Centre who have sent me a referral form to fill out. Seeing it all on paper makes me wonder why on earth we have buried our heads in the sand for so long 🤦🏻‍♀️

Good for you, OP!

I think ND life sometimes feels like one long series of (normally expensive) problems to solve so I think we've all been there.

I was feeling quite good about our progress after posting on this thread and then last night DD nearly poked me in the eye (accidentally) and then cried for ages because I 'shouted at her' (I didn't!) and today she has done one day of holiday club and announced she won't go back.