Am I going mad?!?!

Thank you - We are working on it - It's still very early days but we do have a great support network - I just hope that my wife can realise this and learn to let go when she needs to.

Thank you for all of this information - I'm putting together a folder with useful information that may help us, so i'll definitely include all of the above. My Son LOVES Youtube so I think it will be a really important resource for him in being able to understand his diagnosis - and for all of us to be able to help him during the more difficult days. Thank you!

Aw thank you :)

Im subscribed to all of those except Autistamatic, autismexplained, PurpleElla

But I must say you have excellent taste in YouTubers  

The many links did in fact fall foul of the arbitrary spam catching bot, but it's back now in case the resources would help.

Yeah burnout is a serious issue for anybody. It's important to have a break once in awhile. I hope you and your wife can work something out together. 

I agree with all of the above - at the moment, when one of us is struggling, the other one steps up and takes control of the situation. Being separate wouldn't help that, but all she sees currently is that she would have 3/4 days rest in between visits. My wife loves my Son to pieces and she's been noted by medical professionals as his rescue / bridge. For example, when he's struggling to put his feelings into words, she helps him. I think that in doing this she lives through our Son's eyes which has just caused her to completely burn out.

I'll speak with her this evening after work and try to formulate a bit of a plan for us all to get the time we need. It's hard at the moment as she's not very communicative.

Thank you again.

Thank you - I definitely need to take a tactical approach to things so far as she is concerned - she's very stubborn and generally wont accept help. If I can't help her then I need to make sure I'm at least helping myself and my Son, so at the moment I'm putting as much effort into him as I can, as the world is confusing enough without him worrying why his Mum and Dad aren't happy.

I definitely think we both need more time away to rest and recover - despite never being diagnosed as Autistic, we both have numerous traits ourselves, and I think we are both at 'burnout' - Our son's diagnosis has given us more questions than answers at the moment, but we need to be patient and measured in our approach to things moving forwards.

I think that if both parents are taking care of him and it's already difficult, I can't imagine what it would be like if a single parent has all the responsibility of taking care of him, and all the difficulty and challenges solely rests on them. That's a lot more to handle. 

I mean your wife might want to separare to get a break, but after that break, she'll have to take care of her son by herself, and bare all the responsibilities, at least while you are getting your break. That's going to be a lot harder than having both parents there.

I think your wife is just exhausted and needs a break. I think that having someone to babysit the child might be a good idea, so that your wife can have a break. The babysitter could be a close family member, or someone you trust, and you might need to really work with them and train them so that they understand your son's needs.

Sorry I had some last moment household bits to take care of so I hope this reply doesn't reach you too late.
(If you spot any typos I apologise now, I also have ADHD and web browser Grammarly just decided to not load tonight for some reason.)

About the tantrums in particular, while it's not like autistic kids can't have tantrums it's important to tell when they are actually meltdowns, because they can look alike but have fundamentally different causes and need to be treated differently. Here's a page from the NAS main site thathelps explainthem in a bit more detail. https://www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns/all-audiences

I would not necessarily worry about "Fixation on certain topics / subjects." that's likely just the monotropic thinking, and/or special interests. I'll also link a video that helps explain monotropism, but for now I'll just give advice if you want to expand his interests the way to do it is by introducing adjacent subjects, see what he latches onto and work your way out from there. From Lego producing franchise sets we expanded our son's interests slowly out to DC and Marvel comics and movies, from Starwars to outerspace and geology, and from Minecraft into other video games. If there are any taboo interests or elements you just have to be firm why they are not appropriate to share with other people, not an issue we had, but I heard it helps from others. Anyway here's that link to the mototropism video.
https://www.youtube.com/watch?v=3mBbOOzhoGQ

There are quite a few Autistic youtubers who evidently survived their childhoods and they can offer insight into other more specific autism related issues.  The ones I think would servee you most immediately are the videos about Autistic inertia, sensory issues, burnout shutdowns and meltdowns, and communication issues, as they tackle the 3 most recognised areas of issues in most autistic people's lives.
https://www.youtube.com/@Autistamatic
https://www.youtube.com/@orionkelly
https://www.youtube.com/@MomontheSpectrum
https://www.youtube.com/@imautisticnowwhat
https://www.youtube.com/@autismexplained
https://www.youtube.com/@TheAspieWorld
https://www.youtube.com/@PurpleElla

I know I am a third party and cannot give solid advice, but what I can advise for your wife is that your words are coming on deaf ears. Not your fault and not hers either. But if it is guilt that is driving her, it might help if you (secretly, maybe) get her friends and family to "suggest" the same thing you do. She might suddenly start to listen if it comes from someone outside the stressful circle, you know? You could even arrange a family meeting that would get her to go away even for a couple of days so she could rest.

I know I said I did not know how to advice about your kid, because you really described ME at that age (lol) creating stories was always a favourite thing I loved to do. When I woke up early, like your kids, I would play with my toys for ours, I played the same way, every day. As I got older it became more surrounding with drawing and words. 

Thank you so much for your reply. My aim is to help improve all of our well being in the coming weeks - a holiday would certainly help her but her emotional state isn't conjusive of rationale at the moment which doesn't help- I feel like she wants to punish herself and won't allow herself the rest - which in turn has a huge domino affect on all of us. I think she blames herself for his prematurity (ridiculous as that sounds) and feels guilty.

My sons main behaviours / concers are:

Anxiety to the MAX - fretting constantly for hours on end despite reassurance. Typical daily tasks aren't easy

Not following basic instruction - a simple task can take an hour!

Hyperactivity

Refusal / inability to settle in bed at a reasonable hour

Waking up extremely early (exacerbating our frustrations and tiredness)

Temper tantrums

Fixation on certain topics / subjects.

He got worse around 2 years ago, but I feel like I notice a deterioration in certain things every day. 

I've got to the point where we have so many appointments each week that I worked rather think how I / we can do our best to help him. My bond with him since his diagnosis is stronger than ever - I understand him now. 

Not going mad, and sorry to hear you are facing challenges that are putting a strain on your marriage, can she not just take a holdiday by herself if she needs a break? It sounds like she is having a very extreme reaction when all she really needs is a rest. Understandably when she had your son she probably didn't envision this is the life she would have, but we have to be prepared to love our kids no matter what. That is the responsibility placed on us by having them. You haven't said what your sons behaviours are, so presumably there was a time you noticed them develop and a time they escalated, the good news is behaviours can change, but accepting your son will always be autistic is the first step to understanding if new ones arise. It's not enough to help your son understand the way he is, although it is gret that you did and didn't hide it from him, can you either get him to see a child therapist who understands autistic children or would you benefit from trying to tailor neurodivergent self help therapies and see what your son could implement on his own level of understanding?

There's a book: https://www.livedexperienceeducator.com/store/p/neurodivergent-friendly-workbook-of-dbt-skills That might provide a foundation for trying to help your son work through his issues, just bear in mind I am pretty sure this book is aimed at adult readers.