My daughter has aspergers...

[durhamlass]

More questions from me tonight!

 

PLease please forgive me for rambling, being incorrect or having mega typos!!!!!

 

My daughter (5) has aspergers, she was diagnosed in March 08, assessment process began June 07.

 

I know she is different to my other children, always knew it. She went for many behavioral programes as a lot of her frustration leads to her kicking, biting, smacking, screaming etc, and for a long time she was seen as a naughty little girl by school and family etc...

 

Anyhoo, she was diagnosed but does not display all the symptoms for ASD, for example, she doesnt have an obsession about a certain thing, though she would sit infront of the TV/ PC/ DS from dawn till dusk... I KNOW she doesnt have to, but yet I still feel that she is fraudulently diagnosed, I worry that I pushed too hard for an answer to her 'naughty behaviour'.

 

There are days when it is quite clear she is an aspie, then others when I feel guilty I have sought a 'label' for her...

 

She is on the 'high functioning' end of the scale, and can talk, is toilet trained, loves a hug when she wants to, and because of my stereotypical view of autism I feel like a fraud saying she is.

 

Does any of that make sense?????????

[Guest Lya of the Nox]

<'> ><

yes i have a daughter who posts here, who was only diag a few years ago

give yourself time,

you will often wonder if you did the right thing, and then there are days when you KNOW you did the right thing

keep posting it helps, cos we always ahve answers

[Tally]

I think a lot of parents need time to come to terms with the diagnosis. It also takes time to understand that autism isn't necessarily how you thought.

 

It can take years to get a diagnosis. Your daughter was diagnosed in under a year, so there can't have been any doubt. Most parents have to fight hard to get their children's difficulties and behaviours recognised by the professionals. Having to do that does not make you a fraud.

[SoundLad]

Its like me i wasnt diagnosed untill the age of 19 i was previouisly diagnosed with Hyperactivity but recently the doctors have put it down to this cause apparantly it was reconised untill 1994 so ive heard.. My mum was the same as you as much as i might be normal she never understood me cause i was different but know she knows what it is cause shes read about it talked to the doctor etc shes put 2 and 2 together and just let me be..

[shamu]

Oh sweetie <'> <'> <'>

 

I think your feelings aren't that unusual - i know when I was getting James assessed I really drove myself nuts for months wondering whether he was or wasn't autistic. Some days I thought I was seeing things that weren't really there and I was going loopy.

 

Many children don't display all the "characteristics" that you think of when you think of ASD - as you know, James has no obsessions at all, and isn't that bothered by change (well, I think he is more bothered than he lets on, but you know what I mean). Diagnosis helps you to get to grips with all her strengths and difficulties and they are different for every child. It helps you understand her better and thereby make her life (and yours) easier. It will help her to reach her potential and access support. It really helps open doors, not close them.

 

Deep down, you know her best and the fact you sought a diagnosis and got it with reasonable ease shows your gut instinct was right. I know that this isn't the path you were expecting to be walking, and it's a rocky one at times, but your daughter is lucky to have such a caring, thoughtful, aware mummy who has taken the time to get here assessed.

 

Take care sweetie and you know where I am

 

Shamu

[brooke]

i understand exactly what your saying. My son was diagnosed 2yrs ago when he was five and i still sometimes feel a fraud I think for me a lot of it is people saying "oh he is fine" or "you cant tell that there is a problem!" i think they are trying to make me feel better but it doesnt it makes me feel like a fraud. I just want people to understand he isnt just naughty!! I have got to the point now though where it doesnt matter what others think as long as i understand him and his school understand him then its ok. You learn to have thick skin!!!

Welcome to the forum <'> <'>

Edited April 19, 2008 by brooke

[baddad]

Hi durham lass -

I think many of us have the same sorts of doubts in the early days, especially if the child is verbal, social (but socially inept), and otherwise functioning in many ways on a par with their NT peers...

It's usually in the little things that stuff really stands out at that age, and it becomes far more noticable when you're out of the usual environments or mixing outside of the family... If you're just bumbling along doing 'family' stuff - well she is part of the family and the idiosyncracies are just the norm in that context so you don't really notice.

For most, it's those 'whammy' moments when you're in the park or shops or doing something else that's everyday but not part of the usual routines and it suddenly hits home that there's something fundamentally different (not wrong, just different) about the way she's going about things.

My son was dx'd at two and a half, and is coming up for secondary in September, but I still have plenty of those 'whammy' moments and they can hit just as hard now as they did then. Believe me, I wouldn't change him for the world so it's not 'negative' and certainly not something i feel guilt about. It's just a sudden reality check, that 'our' world can be very different to other peoples even if the differences do sometimes seem immaterial or minimal.

 

So, in a nutshell, yes - it does all make sense

 

[CarolineJ]

We're in the same boat. Our 7 year old son was only diagnosed in March too, so we're probably on the same timescale of emotions as you are.

 

I see you're a Durham lass? Are you still in the Durham area at the moment? The reason I ask is that your area has a wealth of knowledge and research on ASDs, so I would imagine the team who assessed and diagnosed your daughter would probably be well expereinced in the field and as such, your daughter would be unlikely to get a false diagnosis.

 

Baddad had a lot of wise words about situations. I agree with what he is saying.

[oxgirl]

Durhamlass, I felt exactly the same as you when my lad was diagnosed. Like your DD, he was 4 when the investigations started and 5 when he was finally diagnosed. I ended up feeling exactly the same as you say, as if I had somehow persuaded the professionals and that they'd eventually caved in and finally agreed with me just to keep me quiet or something. That was ten years ago and I can tell you, that my lad displays a lot more of the characteristics of AS now than he did then and they have become a lot easier to recognise in him as he's gotten older. I don't mean that negatively, I just mean that at 4/5 it wasn't always easy for me to really see and understand how his mind was working, iyswim, but now he's older and I've learned so much more, it's so much clearer. Having said that, I KNOW he has AS for sure, but I still feel guilty, so I guess that's something that maybe just comes with the territory. <'>

 

~ Mel ~

[andrea]

hi my ds1 17 dx at 5 and i still have times when i feel a fraud. i think sometimes its difficult for even us the parents to see past the bad behaviour and sometimes it is just bad behaviour,and then something comes along and stops you in your tracks and just know its aspergers.my ds2 4y is going through the process at the minute .when were at home hes fine. when someone come to are house or we go out or school thats when we notice thing are not quite right . <'>

[Cariad]

Don't feel guilty, I think we have all been there. We pushed and pushed for a DX as they said he just had Tourettes which was laughable. In the end we shouted so loud we had a Professor DX him as we had been fobbed off for so long.

 

You have to have a *label* or you just don't get the right help and education and she'll be left feeling very frustrated!

[lisa35]

Hi, justwanted to say ditto, we just had diagnosis(2nd assessment) I feel like I "persuaded"them because I provided so much evidence to cahms-I knew what they wanted to hear to make the diagnosi Then again, I made hubby read everything I wrote- and have constantly said he is like that isnt he?? Cos I feel that I see" things because Ive read so much

Thenagain, when cahms said my info helped them so much, my response was after 2 years we wont be sent away again!!! As he s got plder (13 next) the social aspect is so obviuos- its proabaly just we know what underpins his problems now, and didnt really have a good grasp before

Infact, his senco said she could not believe he had been diagnosed the first time- professionals agree ,yet I still feel like Ive made them diagnose him

So, you r e not aloane

We re just fighting for statement-as he is struggling so much with sociial aspect-he doesnt have obsessions as such either

All kids are different, this is why they find them so difficult to support

xxx

Lisa

[durhamlass]

Thank you so much for sharing your experiences. I do know that she ticks differently, I suppose because I pushed and knew for such a long time,I was questioning my judgement as a parent.

 

I have to let myself off the hook, thinking she has to tick every box, or have every poss symptom.

 

Thank you for all your support and kind words.

 

x

[cattubb]

Hi Durhamlass

 

My son is 5 and was dxd AS Nov '08. I feel guillty about everything: did i not play with him enough when he was younger, did i let him watch too much tv, did i not cuddle him enough, did i not send him to enough 'clubs', did i not do enough arts and crafts with him.....for gods sake, the list is endless!!!

 

Someone told me that guilt is a wasted emotion and i couldn't agree more, its just putting that into practice that is difficult.

 

Then I question the diagnosis. Last week i was at home with DS and DD(2) for the whole week as he was off school and its physically impossible for me to take them both out by myself. Obviously DS was in his element - no going out, tv/ps3 for a week solid and was therefore quite relaxed (only 3 meltdowns all week!) so i start questioning things...maybe he hasn't got AS, maybe they got it wrong, maybe I made it all up....

 

aarrrgggggghhhhh!

 

why do we all insist on torturing ourselves???

 

Anyway, rant over....you are not alone!

 

Cat

xxxxx

[harmony]

HI

Just wanted to say I know where you are coming from. I still feel guilty/unsure I have done the right thing getting a dx for my daughter, now she will have to live with her label for ever. On the other hand, it makes sense as she is different to other kids, yes her bluntness and social faux pas can be a nightmare sometimes, but she has no major obsessions, and on occasions she can appear as normal as the next person. Yet she has other AS symptoms, and I know deep down her dx has answerd many questions I have had over the years (DD is 12)

We all feel guilty, it's what mothers do best, at least now you can get the right support if and when you/she need it.

 

love and luck

Harmony