Re: Re: Introduction () change of dynamic after diagnosis (long)

[Guest guest]

Great post, Judy. Would you mind elaborating a bit on how your

relationship with Ian fulfills *you* and speaks to your heart? I

don't get a sense of that when I read your posts.

To me, your beautifully expressed details of how you accommodate

Ian's needs throughout the years suggest a whole lot of sacrifice

and coping to me. I would also love to hear about how the

relationship enriches *your* life.

Best,

~CJ

Welcome to

Aspires, .

I am an NT,

partner of Ian, AS. He wasnt diagnosed for a long time, well

into his 40s, at which time he too found the diagnosis a

relief. I was in the position of being a recent partner in

his life, he having had many bruising experiences with

social interactions, a failed marriage and a very chaotic

childhood and lonely young adult years. At the same time of

it being a relief, he was angry and resentful that he wasnt

diagnosed earlier, and that he had to go through 'all that'

to find out 'what was wrong' (in fact, nothing was 'wrong',

AS being a condition and not uncommon, at that).

Thereby came

a process where I, despite thinking of myself as an

enlightened soul, and indeed being the catalyst of the

diagnosis - became the angst ridden partner, suddenly hurt

that hey, you have your diagnosis, where does that leave

'us'. He was happy but also a wee bit smug, saying, this is

how I am, wow, its Ok, and I can now be the person I am and

not worry. It is all you NT's fault, not mine! Ian then went

through that grieving, as did I, he angry that no one had

picked this up before and that his life could have been so

much better. And I, because I realised - this is the crunch

- that this IS how it is, and that things would not be

different - AS being for life, etc etc. I hadn't known much

about Asperger's before this, and thought it was some sort

of autism that made the person struggle in a mentally ill

way. Wrong!

From that

came the realisation that we should work together to make it

meld to our lives and what we wanted for the future. Ian

went off the rails a bit, doing his teenage rampage that he

was denied, got a bit AS-slap happy, saying to others 'I

have Asperger syndrome so I can do what I like, say what I

like, this is me, tough'. That didnt last long, thankfully,

and I went through a hellish time then, thinking I had a

right old narcissist on my hands. However, with hindsight, I

can see he was reacting to the hurts of the past. One of

Ian's traits is to contain and carry with him all past

hurts; just as he had spent all his earlier life trying to

dissect his approach to others, and he so wanted to be like

an NT - being liked, effortless socialising, so he pretended

to be an NT, including the good old script learning for set

phrases, and using mimicry to be one. It didnt work.

I would say

that, for him, the hardest part was being accepted as an AS

- because this brought out the best and worst in people.

Some people were kinder to him. and those who refused to

understand eased themselves out of our lives - this was

actually hard on Ian, he had spent his life trying to win

over people. They saw him as battling, being awkward, and

shouting the odds when he thought he was right to enforce

his views. He also, conversely, found it hard to be in a

labelled box marked AS, when he was the renegade, the Marlon

Brando character and he was suddenly 'the typical AS'. He

has settled into his skin now, almost in a third age,

whereby he is now the Aspie person, who knows what his

traits are, has thought about how to make his life easier,

has seen that the world is full of diverse persons, and that

its not all a conspiracy against him...

What about

me, during all this? I was the same. I found it hard when we

told people about his AS. Far from being the panacea for his

'odd behaviour' (my sister's quote, not mine) they all

recoiled in my family, from this 'autism' thing. Only one

sister and my nieces remain friendly. It is a fear of what

other people think - and that on knowing about the fears and

phobias of AS, you wont be taking them to a wedding party or

to a social occasion very often. And so you have to decide,

if NT partner, whether that curtails you, too. And so you

become the person who goes places alone. Who adapts and

accepts - and grits the teeth when others stupidly make

remarks about you ('I didnt know you were with someone, I

thought you were single, you never bring Ian')

I went from a

relief at knowing that my suspicions about him being on the

spectrum were right; to watching him go off on a spree; to

having him say 'poor me', to adjusting to the AS and then

using it an excuse for his narcissism. Then, finally

(grieving process nearly over) acceptance that, although

things should have been better in the past, he would be

better off using his new knowledge and understanding, to

improve his future. He is proud of being AS, he is often

heard to say he didnt want to be an NT. Not quite so. He

spend that early childhood dying to be part of a clique, and

wishing he was like his peers. He tried to be NT and failed,

and why not - he shouldnt try to fit a box just because its

the so called norm. He has his own 'norm'. He says he used

to see the world through a perspex sheet, he on one side,

the world on the other. He uses me to dispense NT wisdom, to

interpret NT world, and to deal with all things that faze

him. Hence the relief of being diagnosed. He said at the

time - I thought I was mad.

Ian says the

worst thing about being AS, is that we NT's dont appreciate

the higher level of skills that such as he possesses. I say

he doesnt appreciate my skills, such as when he asks me to

fill in a form, do some task that offends his sensory

processing, or go to the post office because its smelly and

crowded and he cant go there. So, not so unworthy, after

all! The irony for me of Ian's AS is that the books state

'disorder', 'disability', 'autistic' and this is scary for

us. But he is in fact a high thinker who cant do up his

shoelaces. An argument we have had is the 'disorder' versus

'gifted'. Who says that AS is different - perhaps the NT's

are the different ones... so dont think of yourself as being

the odd one out. You are a different thinker, maybe you have

OCD, maybe you have Sensory Processing issues. So, know what

those are, and make them known to your partner, who can then

adapt to your needs in terms of those traits. But dont let

it rule your lives.

I feel that

the key to understanding AS is to read the help books out

there, (such as Tony Attwood) and see how it fits. The

Complete Asperger helped me as much as it did Ian. Its a

great thing, knowing you are not alone. Its not so good to

see that there aint no going back, if one has been hoping

for a change or a cure. However, for the AS partner, there

is that realisation (horrible or not) that this IS how it

is, and there is adaption, understanding, acknowledgement

and acceptance to be had. And, a bit unreasonably, it

appears that its the NT that a head start in that we can be

more adaptable? (Up for debate) and by being so, can help

our AS to adapt by overcoming fears and setting the scene,

or even setting boundaries.

It may mean

that the hopes an NT partner secretly harboured that things

would change, or there would be a miracle cure, or once

diagnosis occurs, then a magical tranformation - AS person

would say 'now I see why you get upset with me!' and then

never do the same again..., well it might not be so... they

may know why you are upset as an NT, but can you prevent it

happening again? Maybe not. But you can justify the

rationale behind the AS thinking and actions?

The way

forward for me and Ian is that I know how to communicate

with him now. The books helped me to see how his brain

worked. That he cant 'do' social. That he will disappear for

hours on end on his hobbies. That he is immersed in thought,

so that if I intrude on those thoughts, he might well drone

an impolite and curt reply that, if it was done by anyone

else, would merit a box round the ears. That he doesnt mean

what I think he means, that he needs my conversations in

short bursts, and when he is ready to hear me. That he

doesnt automatically concentrate on my needs so I have to

ask him to listen to me when I say what I need from him.

He will

forget my birthday, show no emotion at my ills, and think

foremost of himself, survival being a key thing for Ian. He

has got used to being concerned about himself, through years

of neglect and fear. He isnt a cruel person.

I have

adapted to this, but not been consumed by it. What an NT

partner may be feeling after diagnosis is, well it was all

about him/her before, and it still is - now he/her has a

reason to read up on AS, and talk about typical traits. So,

the partner needs to be included. I feel that Ian and I work

as a team and we both 'live with' his AS. I dont let him

wallow too much, because that leads to the lovely OCD that

is prevalent in some AS where he relives negative thoughts

all the time. I ask him, in short bursts, to let me know how

he feels, and what he is thinking. No sulking, no brooding,

or lack of interaction.

Ian wont talk

in long sentences unless its about his hobbies, because he

loses track. He might see our interaction in a different way

to myself. He will say to himself, I have spoken to Judy

today. (ticks box). Now I will play my computer game and

then I will be hungry. (Ask Judy for food; tick). I will see

it as: I got home from work knackered and angry. Needed to

discuss my day. Ian says that he is going to play his game,

see you later. Because he doesnt read faces and because even

with being soaked with rain, missed the bus, and distressed,

he wont know what to do. Now I say, later, I will tell you

about my day. And that bargain is kept.

So, I say

exactly what I mean and how I mean it, and I negotiate. Amy

might not do this yet, and she might have been feeling that

in the past, she was ignored or said the wrong thing? Maybe

that isnt the case. But if she has felt excluded from your

life in some ways, the diagnosis would make this even more

acute - there is also the aspect that some of the books are

quite alarming - the autistic badge, the demonstration of

how the syndrome can be regarded as a problem, a disability

to be overcome. That is frightening at first.

, you

sound as though you are pleased with the diagnosis and are

happy to proceed, perhaps you have the same thoughts as Ian,

that at last there is some sense to the way you think and

feel. Amy may be stunned to find out that this is how you

are, and reading about it, knowing that some of the traits

you may have will need to be accepted rather than dismissed.

I know that I felt subsumed by it, and somewhat diminished

by being the lesser person of the outfit, yet carrying the

burden as I saw it at the time, for the inadequacies (I dont

feel that way now). Appreciating the differences,

understanding them, and knowing that my AS partner cannot be

the social animal, although is charming at times, gauche at

others, and inappropriate most of the time...

I used to use

his AS as an excuse for his behaviour and apologise for him.

Not anymore, that was a cop out on my behalf - out of

weariness and worrying 'what others think'. You sound like

you are already there, in that respect, and if Amy is

concerned that she has to tell others, or that the prospect

of your being AS is too great, its worth remembering that

you both have come this far without that knowledge. Now,

with the knowledge to hand, you can move forward and have a

greater understanding of what makes you think and feel the

way that you do; and with that, comes the acceptance and

also the enlightenment of what you two can do together.

Although I

still resent, and still feel weary, I know Ian a lot better

now, and can anticipate what makes him sad, angry or

fearful. I am proud of the way he manages his day and how

his talents shine through. He isnt disabled or teminally

ill, he isnt a coward, he isnt a bad person. So he will live

with his AS and he carries out lots of AS style complex

tasks despite the sensory, the 'stimmie' triggers and the

fear of people.

If other

people dont like his manner or his stimmies, he can deal

with it, and them, in much more rounded way than before. And

so can I. Amy will no doubt be proud of you and will be

wondering and worrying how this will impact on her and how

she can help? Well, reading the books, knowing about AS, and

knowing it is part of the whole neurodiversity and makes you

one of life's thinkers, will help her to know you are a

brilliant person with a range of what may be called 'quirks'

but as long as you dont stop speaking to her, and keep

communicating - even by email if the words wont come - then

you will be getting somewhere.

So again,

welcome to the AS family. Sorry for the long post. I am an

NT, remember!

Judy B,

Scotland.