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?Aspergers. Would specific diagnosis actually help?

22 replies

DisasterArea · 17/03/2009 19:41

I had written a huge long post about DD2. so long and depressing it disappeared into the ether never to be seen aagain.
So in brief. DD is nearly 11 and shows many signs/symptoms of something being not right. i've wondered alot over the years and am becoming more convinced that it could be something like aspergers.
would it make any difference to have something (anything) specific diagnosed? would it make life easier? or more difficult? who to talk to? who to see? can i carry on hoping she'll grow up and past what ever is going on? or do i need to accept? would it make a diference to her?

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Marne · 17/03/2009 19:54

It could help her a lot if she is having any problems at school, she could get extra help with school work etc.

Dd1 was diognosed in October, she's only 5 but i felt we needed a dx so if she did need extra help in the future people would understand that she has AS. At the moment dd1 has no help and is doing well at school.

Has your dd noticed that she is different?

amber32002 · 17/03/2009 19:55

Ah, that's the million dollar question. As you might already know from this board, I'm a mum with Asperger syndrome who's had a formal diagnosis on more than one occasion (well, it keeps the specialists in work! )

All depends how much difficulty we're in. If she's coping well with friendships, school, eating, drinking, sleeping, health, habits, cheerfulness etc, then I'd say there's sometimes not a lot to be gained from a diagnosis. But if she's struggling with any combination of those things, it's worth getting it checked out.

Having been through life with everyone quite convinced I was 'coping just fine' and with me silently screaming with fear through most of it, I know what a relief it was for me to realise that there's a reason for all of the challenges I've had. It's helped me to be kind to myself, to adjust my environment to help me, to be more honest with people about the things I find hard, to know that I can ask for help (and sometimes there's someone to answer that plea)(not often enough for adults though). I don't think we grow out of it. We can get better at disguising the pain, fear, surprise, uncertainty and unpleasantness of living in an unadapted world with no formal help, yes. But that's not really the same thing as getting the right help to make our lives as easy as they are for most other people.

So, it's a personal decision, but my personal view is that it can be very useful indeed.

Have you seen the standard checklists for an ASD? You can google "AQ test" for example or the Cambridge "Autism Research Centre" and look for the tests bit there, which lists ones for children too rather than just for adults. It's not a diagnosis, but it's a clue as to whether a proper diagnosis might be a good plan?

mumslife · 17/03/2009 19:57

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Blossomhill · 17/03/2009 20:15

Hi DA

Can you explain a bit about what the signs symptoms are?

I have a 9 yr old dd with AS but she definitely would not slip through the net as her difficulties are fairly obvious.

DisasterArea · 17/03/2009 20:40

thanks.
will try again and hope the pooter doesn't eat it.
DD has always had huge enormous tantrums.
Diet is shocking. eats only bread, crackers, roast potato, chicken.
hates changes from the norm - even nice ones like sports day or going out somewhere.
is over anxious about things like homework.
academivcally average although could be bright if she ever tried but she won't, whether fear of failure or just not wanting to face challenges.
has had school phobia/refusal. although i can get her there these days it is a huge struggle.
argues about everything.
often misconstrus/misunderstands or simply mishears something and takes it personally and meltsdown.
wears the same clothes on certain days. if the wrong socks can't be found has a big paddy.
can be very funny and witty.
has lots of nice friends who just accept her oddities. she can be foul to them too though.
gets physically violent while having tantrums. on the other hand is often over affectionate. sometimes needs to kiss and hug and say 'i love you' over and over again when i'm off to work.
won't read books.
has no sympathy/empathy for anyone else - for example went off on one today because DD1 had a headache. just can't deal with other people's feelings.
likes everything to be going her way. if anyone else wants something different can't deal with it.
when having a paddy will hit or scratch herself.
although she has always played with dolls i don't think she has much imagination. she can't make up stories.

was going through the NAS website (again) and aso the australian aspergers scale. will look at cambridge one too.
any ideas?

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DisasterArea · 17/03/2009 20:42

also - has had tummy aches/nausea all the time for a couple of years. has had lots of investigations - i thought perhaps coeliac for a while but tests negative. possibly wheat intolerance as have been gluten free for a few months and i was thinking it had made a difference but not wholly convined.

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amber32002 · 17/03/2009 21:30

DisasterArea, in my personal view, I'd say it's worth asking for an assessment, yes.

mumslife · 18/03/2009 09:31

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DisasterArea · 18/03/2009 10:48

thanks. am going to see her teacher later to see what she thinks although when she is at school there don't seem to be too many problems.
is GP also the next stop? we did have an assessment at CAMHS when she was school refusing but because we sorted it out we never followed it through. Should I contact them direct? or start again with GP? or someone/where else?

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bluesky · 18/03/2009 11:02

you could contact Dr Daphne Keen, a consultant in neurodevelopmental paediatrics, she is in London. www.daphnekeen.co.uk.

Search for her name on the mumsnet boards as she has been mentioned alot.

debs40 · 18/03/2009 12:53

Hi

I have been in the same sort of situation as you DisasterArea. My DS (6) shows many similar signs of sensory, diet, clothes, emotional issues.

I wasn't sure whether to go to the GP to get it all checked out. He has been doing ok in schoool (until of late) and I wasn't sure whether I was causing a problem rather than helping.

Anyway, he has an appointment with the developemental paed next week and I'm so glad I got that referral now. He does struggle with so many little things that we have got used to accomodating and they do affect his quality of life which is unfair for him. The stresses and sensory issues have also started to surface at school and because I have raised this issue formally, I think it has made everyone more accomodating to these traits.

Anyway, I think if you feel there is anything to be gained by exploring a diagnosis - i.e. possibly help through OT etc - then it is worth doing. If it improves our children's quality of life in any way, or helps others accomodate their stresses and anxieties, then it is worth it.

The Tony Attwood book has a chapter on this and a checklist about when a diagnosis is woth pursuing. I found it really helpful

jabberwocky · 18/03/2009 18:44

We are in the same situation. Ds1 has many signs and symptoms. For a while I was convinced it would not be worth putting him through an assessment as we already do lots of therapy, etc. based on his diagnosis of Sensory Processing Disorder. But he has had a lot of gut issues over the past two years and I have decided to push for a referral to a pediatric GI doc who works with children on the spectrum. I would hate for him to be having some physical problems that elude the standard pediatrician and from what I have been told this GI dr. can advise us on whether further testing is warranted.

troutpout · 18/03/2009 19:03

ds got dx at 10 nearly 11. Honestly? it has changed our lives. He has access to help that he didn't before and I have access to help too. I no longer feel like i'm desperately keeping the wolves at bay. He has help at school too.
He needed it too...he needed it for questions that he was beginning to form in his own mind about why he felt so different. he was beginning to blame it on something else and turning it inwards on himself.

mumslife · 18/03/2009 19:39

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DisasterArea · 18/03/2009 21:58

all v interesting. thanks.
have spoken to her teacher who is just lovely. v experienced and knowledgable.
DD is absolutely fine at school. no problems. works well. bright. good friends. however..... when i asked her about possibiliy of something 'real' going on to affect her so much at home she said she could see traits inher which go along with what i've been thinking.
saying that she has been fine this evening. no problems at all except for one thing that was headed off before it got into a huge issue.
will make appointment with GP and perhaps phone CAMHS as they saw us a year or so ago and we may be able to avoid the excruciatingly patronising and embarrasing first family assessment.
have also spoken to a mat who has also lived through this who has warned me that it may take 18 months for an assessment by educational psychologist.
may be asking around for a few names for private assessments as can't be dealing with waiting and knowing nothing if (big if) i actually make the decision to do this.
if (again) if i do something i do think it would be to give DD something, some sort of explaination as to why she is like how she is and also for DD1 who is affected.
will stop waffling now.

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milou2 · 18/03/2009 23:07

I saw what you put about stomach aches/nausea. My son had stomach pains/feeling ill/going all sweaty in the evenings. My mother mentioned by chance that she found she was wheat intolerant years ago. It came on all at once and she happened to say it was when she was having a stressful time at work.

Because of that I removed gluten from ds2's diet and he felt much better. When I tried him on wheat again when he was home ed and much calmer it was ok for him. So for him at that time he may have become reactive to gluten due to stress. Any how I thought it might be worth telling our story.

DS2 has HFA by the way.

Diet is shocking here too! I find it much easier to accept now because I have a dx, so I just buy the current favourite foods with a smile if I can.

amber32002 · 19/03/2009 06:55

DisasterArea, try the National Autistic Society. They have a long list of private consultants for diagnosis, so there may be one in your area somewhere?

mumslife · 19/03/2009 15:13

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DisasterArea · 19/03/2009 15:32

have 2 daughters. DD1 is nearly 13 and just fine. DD2 is nearly 11 and the one i'm worried about.
will take a look at NAS lst. and start savng.

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DisasterArea · 19/03/2009 15:32

seem to have lost 'i's in that!

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Inkpen · 20/03/2009 17:41

Hi all - I am new to these boards and haven't been on mumsnet for a long time. I came on tonight looking for threads about ASD and found this and wanted to comment. Hope it's OK to crash in here! (Never sure of netiquette and don't want to offend!)
I wanted to explain what has happened to us as it may be relevant. My DS is 12 and in year 7. In year 4 he was diagnosed with 'borderline atypical AS' but we felt at that stage that a formal diagnosis wouldn't help as he was getting all the help he needed at school. He had good support and made great progress; as a result, he was discharged from the clinic at the end of year 5. The transition to secondary has brought huge problems and we are having great trouble getting the school to accept that he has special needs because there was no formal diagnosis. They seem not to understand that it's a spectrum, with hazy dividing lines, rather that it's like mumps - he's got over it now! I was concerned at the time about labelling him but now, I wish we had done. Even if he had made the same progress and been discharged, to have had that in his record would have strengthened our case now, I think.
DisasterArea,since you say your DD is nearly 11, my experience is that in exploring your options, you'll need to consider how the secondary school will deal with the issues without a diagnosis. Schools are so big, and it seems easy to get lost in the system. Hope all goes well for you.

DisasterArea · 20/03/2009 18:18

hi Inkpen
chash anywhere - feel free
thanks for that - i do think we need to do something before secondary school.
saying that she's been an angel since my original post but that's what she does. fine for a while then evil incarnate.

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