To worry our marriage may not survive the stress of autism

[Takiwatanga]

... I feel bad, I truly do. But I cannot see how we will last the next few years with the stress autism brings to our family and our son is still so young....

Family of four here, one parent and three children. All autistic. We’re clinging on, but hell’s bells it’s hard.

I have little advice bar being kind to yourself.

I agree with dads taking longer to
adjust. DH didn't want labels. My DF said 'bloody hell, in my day we just called them little buggars and got on with it.'

It took a while.

I was anxious, and worried for the future.

If it helps, 5 years down the line, as a couple and a family, we have come together more and are feeling more relaxed. DH and I often have a weekly giggle over wine/beer about family events. Sadly DS (9) is going through a period of high anxiety, which impacts on us all A LOT, but we are trying to get through it with a sense of humour and lots of cuddles.

Our Ds is 11 and if anything his asd has worsened with the onset of adolescence. He starts secondary in sept and that will be a new challenge. My dh and I haven’t been out as a couple for years, we argue over our different parent styles and cling on to marriage by the skin of our teeth. The sanctimonious comments fron School and others do not help. He is not like that at school because he is good at hiding his issues but that falls on deaf ears. He is high functioning and does well at school so he has been overlooked for so long. It is so bloody hard.

My son has a problem that has developed over the last year . He is obsessed with ROBLOX and that has helped him a greatly with his temper but he started screaming and roaring at the loaded top of his voice. I try and keep him calm and try and deal with losing ing a quiet way but he gets louder. I am lucky the old lady next door is deaf and the neighbours know that him and my daughter are going to be noisy but husband does not know how to deal with them. He out as soon as they come home from school and collage. I can't get away for 1 minute as I have no one around no husband as he refuses to watch them and no friends left or family total isolation and no help from anyone takes its role on health and marriage as mine is about to end after 29 yrs. life is tough sometimes and you have to get on with life as you are the only glue that hold it together so so hard though but some have it tougher

My son is no verbal by the way.

Thank you @Yokatsu. I feel as if you’ve taken the roof off our home and explained what is going on. I feel as if I am drowning most of the time and the kind sweet man I married has turned into a selfish, self-centred, spiteful person.

We have two non verbal boys with ASD and it has definitely impacted our marriage. We are not the same people we were. We are early in our journey though as they are 4 and 2 so no idea what the future holds. for everyone!

I have a son with ASD. We are hanging onto our marriage by the skin of our teeth. Some days I think we'll be ok, the next it looks likes it all falling down around us. I adore my husband and I adore my son, it's just so bloody difficult being everything to everyone and yet not having the time to be anything. to everyone else too.

Yokatsu you are spot on. Thank you for that insight. You're spot on!

It's the biggest battle of my life. I don't have any words of wisdom sorry.

Nobody truly understands the fight unless they live it themselves.

Hang in there.

I would strongly encourage you both to go to marriage counseling and parenting courses for special needs children.

The reality is that if your marriage doesn't survive, it will result in tremendous upheaval for your DS, which is frankly about the worst thing for children with autism in the first place. They thrive on routine. Chopping and changing and going back and forth is stressful for neurotypical children, let alone for special needs children. It would also mean that, by definition, you would be alone and have NO help on days he is with you.

I would suggest taking a break periodically and making your marriage a priority. That's not being selfish. It's being realistic. If you're in the caregiving situation every day with no break, you will burn out very quickly. You need a break and you need time to focus on your marriage.

Whilst I agree with everything else Agnurse says, I'm not convinced marriage counselling is the best way forward.

Marriage counselling is often considered last chance to save to marriage. Not engaging with marriage counselling good grounds for divorce for many. And if it works that's great

But marriage counselling puts an awful lot of pressure to engage in a high stakes, super intense social interaction. On someone who may be struggling with any kind of social interaction. When their primary, maybe only , social relationship and support hangs entirely in the balance.

Generally if someone is struggling you reduce the demands not increase them.

First thing work out what you want. Can you do it all?Do you want to go it alone? Do you want to stay even taking into account the weaknesses of those around you. Always save yourself first you cannot help others if you are drowning. Individual counselling may be more productive than couples.

Recognise everything you do for everyone. If you are going to be a carer take some pride in what you are doing and what you are achieving.

Change the language. I need you to support me is too vague and liable to produce panic and avoidance behaviour "I need a hug" doable "if I need you're help with DC I will tell you" "can you cook xyz for dinner" make the opportunities for successful interactions within your relationship. Lower other social demands as much as possible.

It is very easy to say 'have a break' 'make time for each other' etc. Sadly the reality is often much harder. We don't have anyone we can leave him with for any significant time, let alone all 3. My mil can provide some childcare but I wouldn't leave him and his younger sister with her unless it was a life or death situation.

We don't even get time in an evening as he is always there, and if he isn't he is being very loud elsewhere.

Not all doom and gloom, we will get time together next week when I take the day off work to attend a CAMHS appt. How romantic are we?

We can't leave ds1 without an adult at home. He's nearly 14. I can't get a job because there's no one to supervise him. He can't be trusted to even cross the road in front of school as he has no idea about how to stay safe. He will open the car door when a car is coming past. I'm making so much effort to try to get him to be safe, not even independent. My dh thinks he's a great help, but when I rang him at work as I needed support with ds1 he interrupted me to tell me that he was too busy and couldn't always answer the phone and I should ask if it's convenient for him first. I'm so alone. I don't know what to do. Anyone want to run away with me?

He stepped out in front of a car with cm to spare last week. Thank god the car was going so slow.

Yes it puts a massive strain on a marriage. We've had 'that' talk a few times about can we survive this.

It's a combination of the meltdowns, tantrums, rigidity, conctant prompting and the flipping schools total lack of knowledge despite the fact they claim they are autism aware and trained.

The joys of autism, eh?

The anxiety, the shouting in the middle of the night, the mimicry of emotions, the shit smearing.

I don’t know. I’m at breaking point myself and have never been married!

Oh and that to see CAMHS you need to have a child that's suicidal or they won't even entertain you. CAMHS here have recently gone to self referral, I'm not holding out any hope whatsoever that they'll see us.

If you ever want a chat, please get in touch.

We have two boys, one is 4 and diagnosed last year and the other is 22 months and on the pathway.

Both are severe, the 4 year old more so. Both completely different to one another and generally better behaved when kept apart.

It's incredibly difficult, you and your husband have to find a way to be a team. I do very little housework because I do absolutely all of the admin side (which there is A LOT) my husband does a lot of the tidying and washing, whilst I sort the shopping. Childcare is obviously evenly split. We have no family to help so I know how isolating it can be 💖

I know of a family that broke up, leaving the mum with her autistic son and three other DCs. He grew quickly and she couldn't physically contain him (climbing fences etc) so she made the heart rending decision to put him into residential care. She and her ex have him at home every other weekend, together, and he is doing well. They are also getting on better, though with new partners now.
I can't imagine what life is like for you OP, except to send you good wishes, and hope everything turns out well.

Yokatsu - your post is exactly right

Sometimes is the mum with the Autistic tendencies. What tends to happen then is that prior to children she has enough masking strategies to cope with life and manage a relationship post children that is most definitely not the case, and it's the relationship that is one social demand too much

Yokatsu thank you so much for your insight. I have two with hf asd, and you have captured exactly how my marriage is right now.

All my life I have felt that I cannot manage to love more than two people at once. With each sibling that arrived, it meant for me that I stopped loving someone else, as I couldn't manage to maintain a relationship with more than two people. Now I have two DC, I don't love DH any more. I just can't manage it, I am spread so thinly. I have NC as I am so ashamed of this. (I am the one with autistic tendencies, my mother and sister have Asperger's diagnoses)

Yokata your post is superb. And it’s exactly what cannot be seen by those who inhabit the parallel world of being neurotypical.

;

My little girl has been diagnosed with autism. My little boy is awaiting a diagnosis.
I also think that I am autistic. I hate it when people try to convince me that I'm not. For me, it's a relief to know and suddenly understand why I've always felt different. I feel so much better about myself now. It really, really pisses me off when people say no, you can't be.
Plus my other half thinks he may be and we suspect his brother is too. My little brother is also having a lightbulb moment. Everything makes compete sense now.
Family life is very hard though!