Published on 12, July, 2020
At the prompting from another post I wondered if anyone else was interested in a thread about living with a partner on the spectrum and having a child/children on with ASD too.
I had always suspected my partner was on the spectrum even when I first met him..but it wasn't an issue for us until our children arrived. We accepted the differences and his strengths covered my weaknesses and vice versa.
I became very ill through pregnancy and during a traumatic birth our twins arrived and they too had/have many health issues. As mine and the childrens health became a big issue my partner struggled to cope..eventually overloading into depression. He seemed at times to care more about our dogs than the family as a whole..but I understand this better now.
Around this time my children were starting school and one son has had serious issues with behaviour and a year down the line is still struggling to 'fit'. So both my guys are awaiting the lengthy assessment process. I often wonder whether I am 'doing the right thing' pushing for dx but I cannot see any other route to get the school to act in a more appropriate way to help my son realise his potential.
As DS is very bright and achieving academically the feeling is the problems 'must lie at home'. Factor into this my partners social problems and the finger repeatedly 'points his way'..eg..they think he is the issue and I am 'cowed' by him because they do not understand his fixed expression and see it as arrogant or aloofness. This is such a joke.
SO it almost feels like we are 'clearing our name' by trying to prove there is a genetic factor in play here..my partner had the exact same issues with school as DS is having..and seemingly so did his Dad too. It's like a whole can of misunderstandings is surfacing after years in the wilderness.
I in the meantime am treading a line precariously in trying to understand how to help my son and partner cope with the stresses of life and the confusing social aspects they find themselves flung into...I screw up a lot..but I also get it right too sometimes..which always pleasantly surprises us all.
I know there must be others out there who have a partner and children on the spectrum and would love to learn from their experiences.
Kind regards
x
Hi again,
Your situation sounds so familiar! The reason our boys were removed was because I (Stupidly, in retrospect) wrote an account of some of the more extreme (And very rare) incidents in our home, in a last ditched and totally desperate attempt to convey the severity of our situation, in the hope that someone, somewhere would hear my need for support and understanding. One of them involved my partner restraining our son as he kicked and flailed about - I think my words were 'He pinned him to the ground' and this was taken as out and out child abuse.
Nobody knows but those who live 'inside' ASD and that is such a problem. It is so difficult to explain how it feels to live with this condition - Whether it is your own or someone you live with. It is silent; Invisible; and so very easy to misconstrue. In some ways I agree with the support worker when she says ''Look it doesn't matter what this is called or isn't called..this child is having serious problems and we need to find the best way to help him deal with it'. However, if the serious problems lie in the fact that he is perceiving his emotional world in a way which is not typical then I think it is vital to identify this, before looking at ways to help him and you. How can you help a family unless you know where the root of the problems lie?
How did we get out of the maze we found ourselves in? Well...
Our son FD was referred to CAMHS in October 2008 and our contact with them ended in January of this year - Over 2 years later. Like I said, during that entire time all focus was placed on our parenting with barely any time spent with the children. No paediatrician had been involved, or psychology - educational or otherwise. All letters sent by friends and family in our support had been disgarded as 'adult centric' and as parents we were still faced with some fairly significant behavioural challenges. My confidence as a mum was at rock bottom and our relationship was on very shaky ground. The whole CAMHS experience had been a psychological castrophe with very little progress made.
We heard of an organisation called 'ISEA' - Independant Specialist Educational Advice - and they drafted a letter to the local authority, requesting a full assessment of the boys educational needs, to which we have a legal right. Through this the sun came out for us. The most significant aspect of our progress was the fact that the Educational psychologist spotted straight away that there was an intrinsic difference in the way the boys communicated and perceived their emotional world. . Although she didn't feel it commanded a diagnosis, it did lead us to insightful and very fruitful conversation and some gems of advice and understanding which helped to turn our situation around very quickly. I realised I wasn't going completely mad, and my fears and concerns were validated for the first time since FD was born, over eight years ago.
Now we understand where the difficulties lie we can adapt our parenting startegies accordingly and things are so much better. Advice is specific, and according to te boys needs - Rather than general and according to what CAMHS believe to be correct.
I'd be happy to chat on the phone if you would like - It's hard to get it all into an email! Anyway, suffice to say in this one that it is IMPERATIVE that you are able to access someone with expertise in this area. They seem few and far between unfortunately but they do exist! Youtube is helpful - Check out Christopher Gillberg and Lorna Wing, their expertise is ground breaking.
And beware of CAMHS. I have heard some positive stuff about what they do but am acutely aware of the fact that this particular area is fraught with misunderstanding. One meeting with someone who 'gets' where you are at is more benefitial than a million with those who think they know better than you
Don't ever doubt yourself on this one