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Is here any point in seeking a diagnosis?

7 replies

fealta · 14/01/2011 23:13

We manage well with routine, explanations, diet and coaching on nearly every aspect of life from me.
But it is so frustrating and exhausting. I sometimes resent the need when I see her siblings absorb all skills like a sponge with no teaching.
Not her fault I know.
We are unlikely to get much social support as financially ok and I am a sahm so have time and abilty to give help myself.
She is 7 and has started teaching herself what is right and normal and when exceptions are ok. She is very clever.
Always been concerned about DD.
Didn't sleep, still agitated and restless at night but has learnt not to disturb others.
Never still in the day.
Poor feeder but first child so spent hours breast feeding, still underweight. Same as sister who is 3 years younger
Hates high pitch noises but is high pitched herself. Can not shout.
Hates busy or noisy enviroments.
Anxious but not cuddly.
Speech delay sorted with speech therapy.
Did not babble or point until taught to at 2 years.
Reluctant to make eye contact, will if told to.
Finds it hard to listen, hearing fine.
Sill wets occasionally and not dry at night.
She finds it hard to make decisions and takes the lead from her sister or friends but then tries to take over and gets upset when they won't cooperate. Is unable to play on her own.

The Dr sees a well behaved bright child who put on an act for the out side world. I feel like they do not believe me when I explain my concerns. I never mentioned them until I saw the huge difference with my second child.
Have seen a paediatrician but was told she is unlikely to be diagnosed as AS.

OP posts:
tabulahrasa · 14/01/2011 23:41

I know some people decide not to, but, two things I'd be giving thought to would be...

What's going to happen if she's an undiagnosed adult - after she leaves school if she's still having the same issues she is now, is she going to cope or is she going to need support?

Is she going to be aware of her difficulties?

If the answer to those is yes, I'd be looking for a diagnosis.

It's a struggle to get support as they get older anyway, even with a diagnosis - without one, there's no chance.

Being aware that you have difficulties with things that other people take for granted, but not knowing that there is a reason for it, that there are other people in a similar situation and that you are (much as I hate the word normal) normal for you is much harder to deal with - at least that's my experience with my son who was undiagnosed till he was 13.

Al1son · 15/01/2011 00:00

My DD1 was diagnosed last year aged 12. It has had two significant benefits. First she has a place in a mainstream autism base and can therefore access her education at the high school she found totally overwhelming and unmanageable when she started. She missed almost all of last year's schooling.

Secondly she understands why she has always felt different and like she was missing something. She now feels socially included in the base and has her first real friendships. That has given her self-esteem the biggest boost ever.

She spent years feeling anxious in school, not fitting in and not understanding why. If I turn back time and get her an earlier dx I would. In fact I am fighting for a dx for her younger sister who has much the same difficulties but is coping reasonably well at school for now.

IndigoBell · 15/01/2011 09:27

Go to a diff paed and get a dx.

A dx will help. It will help you, her and school. And it's not fair on anyone to not get her diagnosed.

HelensMelons · 15/01/2011 09:57

I echo what all the other posters have said Fealta and, if possible, go to a different paed - perhaps one who is more in tune with the difficulties that children on the spectrum (?)/special needs can experience.

It's all too easy to dismiss "a well behaved child" as not needing extra supports but it is a rather superficial and short sighted assessment (from your paed) and unfortunately you are not on your own when you mention that you felt that you weren't believed.

However, your dd is only 7 and as she grows up, moves up the school system etc, the demands and expectations placed upon her will be greater; a dx will assist you/your family/others in managing changes/transitions and help you and her maintain her self esteem and confidence.

beautifulgirls · 15/01/2011 10:09

Agree, worth getting this looked at so you know what the answer is for sure and then what help is likely to be needed and give her a better understanding of why she is different to her peers. Don't let people fob you off because she is well behaved. I have a DD (6yrs) going through the diagnosis at present suspected AS, but if I had listened to any of the people who told me "but she is so good" then I would not be doing right by her. So far since pushing to see the right people everyone is finding problems even I wasn't aware of. Despite all of this DD is good as gold - but of course that can be a feature of Aspergers and following the rules/routine. Take a read of the Tony Attwood book "The complete guide to Aspergers" and you will find a lot of information that may well make some sense to you of her situation.

fealta · 15/01/2011 13:25

Thank you for your advice.
Have a CAHMS appointment in Feb for anxiety and intermittent self harming. Will ask for an assesment then.

OP posts:
Thecarrotcake · 15/01/2011 14:56

These are just my thoughts on going for a diagnosis.

If the problems/issues or differences are or may impede( sp) on general life or education.. If it's actually causing or is likey to cause and issue then a diagnosis may help open doors and sign post needs and strengths.. It is then worth it.

For ds it was hampering him socially, emotionally , educationally and lots of little things in general life. he wanted to know why he was different, because he knew he was.. Other dc's at school aren't shy in letting him know.
A name and a reason helped him.. He was not an alien freakoid! Or any of the other awful names they called him.
We made a big list of all his strengths.. Because they were highlighted as well :)

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