any parents with ASPERGERS? (also under disabled parents section)

[mamatres]

hi

i have been posting for a while but never got the courage to write about this.

my 2 sons were both diagnosed with AS last year. through reading about it, it became apparent to me and everyone wh oknows me that i clearly have it too. i have ince been to see a psychologist who agreed that i have it but is unsure what use a diagnosis would be or why i would need one at this stage in my life (i am 31).


its been a very bizarre journey because it has turned everything i thought i knew about the world and those around me completely on its head! i always thought it was everyone else who was 'weird', 'rude', difficult to talk to etc. and i thought that everyone else has the same issues with touch, sound, eye contact problems and obsessions as me. and it was me all the time!

i do feel i have some difficulties, some quite complex, some that badly affect relationship with dh and some which badly affect relationship with dc s. i do find parenting really hard, esp when they are at an age when they start having 'a mind of their own'.

when the boys were dx my mum read all about it too and she said to me- ' thats you, i always knew you had this but never knew it had a name'. apparently when i was at primary school teachers and my mum wanted me to see a child psychologist but my dad wouldnt let me go.

the problem i have now is i dont know where to go for help and support, and for my dh to get help too, as i dont have a dx, and also not sure what is available in my are for adults. everything seems set up to support kids but nothing for older people. dh and i went to Relate recently and the counsellor woman just didnt 'get me' and so we ended up not going after a few sessions as i couldnt say what i perhaps needed to say and i just came away from every session sounding like a cold selfish cow!

if anyone has any help or advice or wants to tell me about your story i would be very grateful.

i have also posted this under 'disabled parents' as wasnt sure where to put it!

[coppertop]

I've just posted on your thread in the disabled parents section.

[Fubsy]

Could you try relate again, but explain what youve just posted? It makes perfect sense the way youve written it, so it ought to to any good counsellor.

I think theres probably loads of adults with undiagnosed ASD out there - go to any steam railway and they will be lined up along the platform! But seriously, there is a theory that the reason there seems to be such an increase in autism and Aspergers is that more children are being given the label, rather than more exist. As you say, for most people there would be little point in having a diagnosis if they are functioning well enough in society.

But for some people like yourself, it would help explain things that might have been preying on their minds.

[eclipse]

mamatres,
I don't know where you're based but it is possible to be assessed and diagnosed as an adult. I know they used to see adults at a place called Elliot House in Bromley (020 8466 0098) but I'm not sure if that's still the case. If you want to pursue it, the National Autistic Society should be able to help.

[bullet123]

I was officially diagnosed with Aspergers last year. Ironically I'd read a brief report on it a few years ago and had been struck at how it fitted me, but dismissed it because I thought AS people didn't have an imagination and I do. Then my older son was diagnosed as being ASD last year and I realised that the description of AS (and reading forums for ASD adults) plus the discovery that far from not having an imagination, many people on the spectrum have a very vivid imagination made me realise I am Aspergers.
A lot of people will say at this stage (I am 31 as well) not to bother with a label, but for me the knowledge that a professional agreed with me put a stop to the constant wondering and analysing I was going through.
I was helped as well by the knowledge that my mum told me she and my dad, plus teachers and paediatricians had known I was different, but my mum hadn't pushed things as she didn't want me labelled and in a special school. It meant that I knew it wasn't just me reading too much into things.

[ClutterJunkie]

HI! Whilst i am not diagnosed with AS...2 of my 3 sons are...and my 3rd is being 'considered'....and like you I am sure i have it too.

I am 'lucky' in that cos they diagnosed me with OCD ...i do get good support from the mental health team...mainly 2 hour visits at home by my key worker every friday. So maybe, for me, a diagnosis isn't needed...i'd probably get no more help etc.

however....if anyone (like your psychologist) ever did state i had it...i would want it confirmed in writing so to speak...as to me ...a diagnosis does matter....in that it's not an awful stigma of a label ...rather something to 'signpost' you in the direction of finding understanding and support.


As a teenager i felt so lonely....and spent years hating myself for being so 'weird'...then when ds1 was diagnosed...i started to read up on AS....and suddenly i felt a huge relief.....i could understand why i felt as i did.....and i am definitely happier with myself now. Its as if everytime i do something 'weird'...i have insight as to why...i then can talk it over with my keyworker...she then offers me her insight as to what i can do to make it 'less weird'....i use the term 'weird' to cover all my obsessive routines/hoarding of clutter/paranoid thoughts/need for symetry etc....


I think JENK may see this soon...i'm sure she is a mum with AS.

[mamatres]

thanks all of you. its nice to know i'm not alone. those of you who have been dx or know you have it but un dx like me, do you feel you have difficulties with relationships with partner and children?

i feel it would help my dh understand me more if i could get an official dx and some support as he feels like i am rejecting him, dont love him etc which i do obviously but... its just difficult.

these are things i have issues with-

-feel of someone elses skin (once had to get off bus about 2 miles too early as large lady with bare arms was squashing herself against me- felt like floury turkish delight urrrggh!)- i still remember it vividly so its affected me!!!
-someone getting pysically too close- leads into
-feel of someones germy breath on me- which has now lead onto-
-being kissed (and breathed on at same time!)
-cannot for love of god make eye contact and its as if if i dont look at their mouth when they are talking i cant hear them
-noisy chaattery places without say some music to focus on becomes a deafening roar
-hypersensitivity to loud startling noises eg alarms, sirens (i put hands over ears- friends find this hilarious!)
-social converstaion. i find it boring, i dont know what to say, i'm not interested in other person so why bother? dh says i come across as snobby
-dont really care about other peoples feelings. cant understand them and dont want to
-have no sex drive at all and dont care if never do it again in my life (which is one of reasons we went to relate)
-current obsession- mumsnet
-bore people to death about mumsnet
-interrupt, never know when to say things, go off on a tangent in conversation, forget straight away peoples names etc and always saying something very inappropriate as cant think what t say to break awkward silence
-used to religiously count tiles and areas of tiles when i was in bathroom but have stopped that now. it deove me mad but was compelled to do it!

• sure there are lots more but cant think reight now...

ring a bell with anyone?!

[mamatres]

BTW i live in devon so nowhere near Bromley or Cambridge!