Living with a Partner with ASD and child with ASD

I do understand...my mum is 71 and we have many conversations..some she understands others are beyond her reasoning. She did grasp today that the boys would not enjoy a big birthday party..it saddened her that she couldn't throw a big bash and invite all her neighbours round to admire my her gorgeous grandchildren>..BUT she did realise it would be an awful strain on the whole family and I was grateful for that.

O used to look forward to her coming when he was little but ignore her when she arrived, not looking round and just saying a curt 'hi nanny'. We had done things in little drips and he can now run and cuddle her briefly and I even think he gets some pleasure from it now, despite it being brief. My mum says it means more to her when he does this cause she realises it doesn't come naturally to him and makes it special.

It's a bit different with O as he actually wants to hug and cuddle quite often but he just can't get it right..he either headbutts or knocks people flying (quite unintentional he just can't get the tone of his greeting right). I think he's working on the therory..the harder he does it the more he's showing affection. Makes him unpopualr at school.

My Mum has also started to see that my partner doesn't dislike her because he flinches when she touches him..he actually really likes both my parents but like O it's all a bit off hilter.

Having said that my parents make a load of gaffs and blunders..being demonstrative and talkative by nature it's hard for them not to inadvertently cause stress and nervousness in ASD prone people. 

I don't know about you but I feel I am always refereeing some misunderstanding or another between the NT and ASD member of my family. It's hard work and very tiring at times..who am I kidding all the time..it's like the UN here most days.

Keep yer chin up you are doing a great job

xxxx

OK- It's working.

When F saw my mum he barely acknowledged her (She has been an integral part of his life from the moment he was born) He was aggravated by the crowds and in no way interested in the bands and atmosphere she had hoped would excite him. He took a biscuit he had made for her and gave it to her with no eye contact , or pride or 'I've made this for you Nanny' if you know what I mean, and I could feel the sadness ooze out of her.

F's focus became a small chrystal we had seen in a shop earlier. This has happened often before - Intense focus placed on an object which may become obsolete in a second. He wanted to stay in the shade and basically pass time until it was time to get the bus home. When it was time to go he didn't sy goodbye (Until I made him) and I really noticed how very distant and nonchalent he was about her.

I find it so hard to explain to her, especially as I am only at the beginning of my own understanding. She is 70 and my boys are her only grandchildren. Her natural yearning for  warmth and 'normal' contact is huge and really problematic.

How I wish there was someone to help us process these difficult feelings

Hope you are ok

Jx

Hi there,

For some reason my posts haven't been sending. I'll try again - It would help me to describe an odd day I had last weekend. I am constantly being tripped up by the various threads of confusing behaviour and responses which come from all angles.

One of the areas which has been badly affected by all that has gone on is my parents' relationship with our boys. They really struggle to understand the emotional responses (Or lack of them) and can't hide their sadness and frustration which of course transfers to the boys and fuels the whole sense of despondency.

Last Saturday my mum had called to say she ould like to take F (The eldest, and most challenging) to an event in the city. There would be bands playing,big crowds and she offered to take him for a pizza. I imagine this would be an exciting prospect for a neurotypical child, but of course for F it was definitely not.

I decided I would go too, to help make it happen a little easier. I didn't give him an option and prepared him well, clearly describing what would happen in fine detail. What bus we would get, what time we would get it /come back etc etc. I didn't get my own hopes up, and felt quite proud of myself for actually being able to anticipate all the difficulties. Not long ago I was the one who would be feeling frustrated and despondant.

I'll send this bit now, just in case it won't go...

@ Jengar..yes I am a very open and honest person too by nature but I am learning to temper my words more with certain 'profesionals'. Especially one who suggested there was mental cruelty towards me...for heavens sake ..if you met me that is such a blooming joke.

Your lives sound so interesting, traveling etc...but I relate to the loneliness of 2 small children and you..I also have the dilema with other kids coming round and how much my son and partner can cope with.

B amazes me in how he manages to just accept things and be comfortable in his own skin. He read about it..light bulb moment..then wanted to tell everyone..he did so..including his boss..which scared the beejeebers outa me..but B is such a good worker and no one really knew what he was on about at work so they have just put it down to 'one of B's 'strange ways/jokes'. Bless him, he's like a child one minute and a very mature adult with huge insight the next..depending on the subject matter.

The contradictions are endless. Keep posting as I love to hear about your life. I think I need to work on my social skills now and get out and about more..I now know B won't mind..he just won't want to always come along!

xxx

Dolphin said:

Hi Barry Holland privately diagnosed my son. And Professor Digby Tantum at Sheffield University privately diagnosed my Husband.Regards Dolphin

Hi Dolphin I have emailed Prof Digby's team to ask about how we get an NHS referral etc. We  would really like my partner to go to him too.

I'll let you know what happens. Trying to save up incase we need to go private.

x

Hi again,

I had no idea that my partner had anything going on when I met him but in hindsight - And knowing what I know now- there were many indications.

The real shocker was when he moved in with me. I realise now that I met the person he had created to compensate for his difficulties. He is a man of a million talents and has many, many great assets. Like your partner, he is totally faithful and reliable and incredibly talented at many things. At the time we met he was a travelling street performer, and had taught himself to play the fiddle on a unicycle! After our initial connection, he moved in and the immediate suffocation I felt was unbearable. He barely left the flat and was scared to pop to the local shop to buy a pint of milk. He was disinterested in meeting any of my friends and had few of his own. He seemed nonchalent about the ones he did have and often spoke about them negatively. He was reluctant to go out socially and when we did acted very uncomfortably.

We went travelling together and I never could understand why he wanted to stay away from people, or didn't feel any emotion when we said goodbye to those we did meet and share time with (Always at my instigation) I love people and conversation; spontaneity and intuitive living. I struggled so very much with this new and bazaar way of being. In fact I still do.

All of that was 11 years ago and only now are we beginning to put 2 and 2 together. Through the struggle with the boys and trying to get our heads around understanding exactly what was happening, T started doing a lot of reading and the light went on for him! He felt such relief to read of aspergers syndrome as for the first time he could make sense of his whole life and the day to day experiences he has. I have only very recently come to accept and begin to understand also, and he feels immeasurable relief at that. It has been such a huge, huge fight for him and between us there has been an almighty 'thing' getting in the way of our relationship and affecting every single area of our lives together. Neither of us understood in the way we do now, and that is absolutely about accepting and learning about ASD and the ways in which it can manifest itself.

In the early years of having the boys these feelings for me were so intense it was unbearable. Motherhood is solitary at the best of times, and the support and friendship of other mums is so important but both my boys would hit, bite, growl, kick - you name it. Neither of them played naturally with other kids and I felt so ashamed and fearful that I was the problem. I yearned to share my time with others and for such simple things like seeing my kids play with others. In conjunction with T's resistence to social situations I began to feel more and more suffocated and pined for natural, healthy contact with others.

Another area it has affected is T's education - specifically after school. His higher education track record is poor but not because of his intelligence. Rather because he simply can't bring himself to ask questions , or 'put himself out' to others (This is the same for the boys) He failed another course just two years ago for all the same reasons - £22 000 wasted - and again, knowing what we know now, it is so clear why. His aspitations of himself until we worked it out were really high, but now we understand that a job which is very low stress, and solitary if possible, is the best way forward. So now he works as a gardener, on his own, and has finally begun to realise the limits of what he is able to manage. I am also able to do that and things are so much easier. Accepting ASD is not easy - It feels as though it has been a curse on our lives, really it does. I feel such grief a lot of the time at what could have been and look back on those long, solitary days when the boys were wee, before we 'knew' with such a heavy heart. It was hell on earth.

Speaking of such experiences, I just bought a book called 'Children and teenagers with aspergers' by Anna Van der Post. It is a book of honest accounts of others' experience of parenting aspergers and is helping a lot. Honest is good - Although my honesty got me into such trouble. No - one can imagine the extremes you get taken to.

OK, that's it for now - Speak soon

J

Hi Barry Holland privately diagnosed my son. And Professor Digby Tantum at Sheffield University privately diagnosed my Husband.Regards Dolphin

I am so saddened to hear about the damage that was done, the best we can hope for is that they learned from it and will be less judgemental in their dealings with other families.I  now know it's our right to request assessments..I have made a note of the ISEA's details from their website just incase I get stonewalled.

Although edgy about CAMHS coming I feel more prepared now.

Yes I think I am going to be very mindful of 'loaded' questions..harder for my partner as he cannot judge or look out for and 'hidden agenda' type questions. Many times I have been to the GP with him and he's been asked something and said the opposite of what was required because it was either too specific or too vague for him to completely get the gist of.

Makes me look so overbearing sometimes because I jump in and explain 'actually he does have problems with this'..I give my partner an example and he looks surprised..like 'oh that's what they meant'. Poor guy. Plus it makes me appear controlling.

What would be really useful is a way to help my partner understand the different ways of managing the children and that things and change or fluctuate depending on the situation. He can have a one size fits all approach to problems and it's hard for him to understand grey areas. We are working on this but it's a toughie.

My son was happy to go to school today..it's Friday and he has his card..he had his coat and shoes on 30 mins before he needed to he was that eager to go. Bless...funnily enough my other son had tears today..life eh? 

I changed things around yesterday so the boys came home, had tea and some quiet time then went out to play with their friends..worked a lot better as they weren't over stimulated from school by then and had some wind down time first..problems arise when their friends come straight round after school.

Small steps forward. Jengar how does your partner cope generally? Mine has a job which is unchallenging mentally but allows him lots of time alone managing his own work load. They email him his work and he travels around working down the list. He can get locked into tasks once he starts something and it can be hard for him to prioritise or be flexible if he needs to suddenly change tack midway through something. He is a very reliable person and an extremely good provider, I love his stoic manner and down to earth honesty..very refreshing...he is incredibly loyal and caring.

We are trying to work to each others strengths and he says he feels less stressed now I understand better. I still get a bit fraught but I am getting better at seeing through the problems now I have more of an angle on it all...but I find things frustrating too...then I get annoyed with myself for not being able to sort everything out for us all. I guess I am a bit of a control freak!

Did you always know your partner had an ASD or was it something that came up later?

x

Hi there,

I just read the NAS responses, which I understand also. No probs - We can keep writing, I guess I find it quite tricky to find a time and place to get a good 'flow' going if you know what I mean - There is always so much to say. 

Glad you found a something which has helped your son, and more specifically something he recognises as helpful and can relate to. For years we battled to find ways of helping our boy understand what was and was not ok. He couldn't work it out for himself and we couldn't do it for him. It was such a challenging situation.

Now we have a points system which covers every second of his day and accomodates for thoughts, feelings and everything in between. In fact we relate to our children through points and they love it! So simple in some ways - It seems that once you find the things which do work, progress can really happen quickly.

CAMHS told us that the damage done would take many years to correct. Certainly with the advice they gave us it would...

Jenny

No worries Jim 

Hey Oatcakes, absolutely fine to discuss these issues and we perfectly understand. It's a great chance for us to be able to make our position clear and help build some evidence to consider changing things in the future.

So don't worry, wanting to help support each other is exactly why this service is here and we totally understand why people would want to do this on the telephone, in person, away from a public space.

So all's cool and I'm glad you can understand where we are coming from :)

Hi Jim

I understand..as I was writing it I realised why this was probably not available. I completely understand the NAS views and that there are vulnerable people who use the forum that may need protecting etc.

I am sorry if I have caused any concern, done something inappropriate..I tried to delete my last 2 posts but couldn't.

Kindest regards

x

Hiya, 

I'm really sorry but the current risk assessment for the NAS Community does mean it's only available as a public space for people to talk to each other. So people can't share contact details or frankly, ways to get around sharing those details. 

I know that's going to be quite frustrating and it's something we'll be able to review in time but for now I hope you can benefit from communicating online here. 

Once again, it's not because we'd have an issue with you talking to each other off the forum but is there to protect everyone, in every circumstance who uses the forum.

When or if that changes we'll make sure you all know and of course conversations like this help us build evidence for that change. 

I hope you can at least understand our position even though I imagine it's hard to agree with in this circumstance. 

No I can't email you via here..are you on another forum with private messaging? I can give you a link to an unrelated forum but you'd have to join and it's seems a bit convoluted now for you to do that 

Let me know if you have any ideas.

x

Oh I had a bad day yesterday...it was like a farce. anyway yes please I would LOVE to talk.

I am unsure about how we go about arranging this cause obviously neither of us want to put personal details up. How do you suggest we arrange this?

I will look if I can email you via this site but am not sure it's possible..alternatively, I can email you a link to another site where we can PM each other.

On a positive note I instigated a red car at school yesterday..my son used it when he felt overloaded and in his words:

'Mum this card is BRILLIANT! I got angry showed my card and they gave me quiet time..I felt so much better and didn't hurt anyone all day'..a small but I feel VERY significant victory.

He's spending time with his new teacher today and is worried she won't let him use his card (which he is clutching like it is his only lifeline now)..so I am hoping she's been briefed on the significance it carries...hmmm..fingers crossed as if not I can see my son 'blowing'. He seemed quite excited by school today..whay hey!

Thanks for sharing your experiences I look forward to being able to chat properly in the near future.

xxx

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

x

I really appreciate you taking the time to reply, especially when it is such a painful subject. I am greatly saddened to hear of your experiences but also not surprised either. My partner was very interested in what you had to say too.

At one point me and my son were questioned and kept in hospital overnight because they believed my partner had harmed him (the actuality was our son was flailing around in a meltdown on the stairs and when my partner tried to put him somewhere safer my son kicked out and broke his toe) . I shouted long and hard that day about how we had been begging for help from every agency and no one was listening, eventually our family doctor 'vouched' for us unequivocally. We still feel the shadow of that day lurking over our shoulders. My poor caring, sensitive partner blames himself because of the way it was handled and what he saw me go through that day.

In our favour we have a parental support worker linked to the school who is backing us and has some clear ideas. She said to the school yesterday..'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'. She will be there when CAMHS come. I know I will be sent on a Positive Parenting course..anyone who knows anything about me is outraged about this..my mum said 'thank god you are his mother, I hate to think how some people would have treated him, you are doing everything within your power to get him through this.'...it meant a lot as yesterday I was at breaking point.

Our boy head butted another child and myself at school yesterday..I felt the eyes of the other parents burning in the back of my head. Also in our favour is I have DS teacher on board..sadly that will change next term...I hope I have a good relationship with his new one. DS says regularly that everyone shouts at him..we don't and school don't but he thinks they do. When he says this out loud you can see the eyebrows raising to the skies.

So when we go to meetings my partner looks agitated and eager to leave..as you can imagine this is misconstrued frequently. We talked last night and decided that if CAMHS do not put wheels in motion for an appropriate assessment for our son then we will try and scape the money together for a private one. I have put some feelers out for this but any pointers on finding the right person would be helpful.

I feel exhausted and sick to my stomach today but thank goodness there are only 5 school days left. I know my boy will be more relaxed during the hols as I can manage his issues much better at home. I have some nice things planned where both boys can relax and have fun too.

I would love to know how you finally found your way out of this maze and have the utmost admiration for you all.

Kindest regards

x

Hi there,

I was interested to read your post and can relate to each and every word. I am in a very similar situation to you, living with a partner and two boys (age 6 and 8) who all have 'social and communication ' difficulties which are only now being acknowledged after an almighty fight.

My story is very long and I won't tell it all just now, but what I wanted to say is that we as parents found ourselves on the receiving end of such extreme finger pointing from CAMHS ('It's your parenting/because you were depressed/didn't give them adequate and consistent parenting/etc etc) that incredible damage was done. Any suggestion from us that we felt there was an underlying genetic factor underpinning the behaviours was dismissed as an indication that we were trying to relinquish responsibility for the damage caused by our inadequacies and for two years I questioned every aspect of my mothering skills and the way I had brought up the boys  - Looking to moments or situations which may have caused the 'attachment disruption' they spoke so regularly of. The process was deeply damaging.

During this time my children were removed from me (That's the long story) and my admission of inadequacy became a prerequisite for my reunion with them. During this time no psychologist or paediatrician was involved, only a community mental health worker and OT, but they did not spend time with the boys themselves - Only focussed on our parenting. All our attempts to talk of their father's experiences in relation to communication (And his father's also) which we could see were being reflected in the boys behaviours were discarded, and any mention of ASD was batted away immediately.

You sound strong in yourself, and sure of the root causes of your family dynamic. It frustrates me that you feel you have to 'clear your name' for these to be heard. It shouldn't be this way. I think there should be so many more opportunities for families like ours to be understood, without the arduous process of 'diagnosis' having to take place

Good luck with it all, and don't ever start believing their theories unless they can back them up with clear evidence

Jenny