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Anyone ever regretted their decision to get a formal asd dx for their dc?

(58 Posts)
mysonben Wed 29-Jul-09 21:46:21

Asking this , as in just 2 weeks , ds 3.9. (verbal dx mild asd) has his 2nd appointment with the paed.
All the reports are in, and as parents we have been given copies of these reports (senco, salt, nursery teacher) DH and I were devastated with each report we got to read.
The agenda of this next appointment is to review the situation since last april, and decide what to do about getting a formal dx or not.
Looking at the reports sad, we feel that it's almost certain that the paed will want to push for a dx.

DH and i are trying to make a decision of our own, should we allow DS to be formally assessed should the paed recommends it?

Could a label of HFA or Aspergers ever be a hinderance to DS?
So many questions, don't know what to do.
And we know only us as parents can make this decision, we want to make the right one though.

Please tell me of your experiences regarding formal dx for your child.
Any regrets? Any positive outcome?
Thanks .

Yurtgirl Wed 29-Jul-09 22:04:55

Nope not for a second

When the official dx letter arrived
I did a little celebration dance

ASD will always be a part of his life - positive and negative

I cant see how a formal dx will ever be negative thing

daisy5678 Wed 29-Jul-09 22:14:40

I didn't exactly welcome the dx, but only because I didn't want it to be true. But the dx brought much more understanding, support and access to services, for both of us.

PipinJo Wed 29-Jul-09 22:20:17

Message withdrawn at poster's request.

amberflower Wed 29-Jul-09 22:20:44

Hello mysonben

I think it has to boil down to your gut instinct. Do you believe as his mother that he's ASD? If yes, I'd proceed with getting the formal DX, because it can only help him get the support he needs. Refusing it could be what hinders him.

My issues with my own DS's DX are that I genuinely and absolutely don't feel he is ASD. Hand on heart, I'd describe him as an NT child who demonstrates some minor ASD traits at school due to anxiety and lack of confidence. So my reasons for wanting to get a second opinion, and my concerns about whether the DX will hinder my DS in future, are far more down to the fact that I don't believe the 'label' is correct in his case than the 'label' itself.

But do I regret agreeing to an assessment for him which resulted in the ASD DX...(bearing in mind it was school who initiated it, not us)...actually, no, I don't. Even though I never in a million years thought ASD could ever be a possibility (I expected mild dyspraxia if anything). Whilst I don't think he is ASD I do accept that DS has some additional needs that would not have been addressed had the assessment not been carried out, and even in the couple of months since the assessment the interventions put in place for him have been effective. So it was worth doing on that basis alone.

As you say it is a hard decision, and one only you and DH can make...but at the end of the day you have to decide what you feel your DS's key needs are and whether a DX will help you address those needs.

HelensMelons Wed 29-Jul-09 22:20:53

I found the process of getting the reports and the assessment itself not only worrying but extremely stressful - it was awful reading about all the stuff that ds2 couldn't do - nothing really positive whatsoever.

We got a dx in Feb 07 and it was a relief - finally all that is he isn't he was over and we could come to terms with it all.

I have no regrets whatsoever, he is my lovely boy and the formal dx has given us access to all the supports that we need in school etc.

His label is asd, which explains why he does what he does iykwim, an explanation to us, his siblings, family, etc and I really cant stress how important that has become, particularly, with his peers.

Good luck.

mum2fredandpudding Wed 29-Jul-09 22:39:55

in a word: No.

it has opened so many doors to us, and set us on the path to getting him back on track.

My DS got an unexpected dx at 2.5 (i would say pretty HF but that remains to be seen)and as a result we are fighting it and doing therapy which we hoep will see him enter mainstream school as independant as possible.

the dx for us was an eye-opener. My DH still refuses to tell people about it and I respect that but in my heart I have embraced it as somethign not to be afraid of but to use as a catalyst for really pushing DS to develop, to open doors.

the way i see it is that we are all on the ASD spectrum, we all have hte same core functioningings, my DS just happens to be a little to the left (and why shouldn't he? the world ain't exactly hte nicest place at times) nad needs help in undersanding and making connections to the more NT world.

coppertop Wed 29-Jul-09 22:50:07

I've never regretted it. The dx has always been a useful thing to have when things have gone pear-shaped.

The reports can be horrible to read but at the same time they can be a useful starting point for deciding which way to go next. My ds1's first official observation reports were truly awful at the time. Not only did they describe the difficulties that I'd seen for myself, but also a few things that I hadn't even realised were signs of SN. I look back at them now though and see just how far we have all come since then.

lingle Wed 29-Jul-09 22:51:41

I have refused DX, and I never lose a moment's sleep over it.
What will help you, your husband and the other members of his "team" tune in to him and work out the strategies to help him? A dx? Particular "therapies" that require a DX? An "earlybird" course? Hmmm.... these have been critical for some families on this forum. What will keep you united and focussed as a family?

Again, could you read Greenspan before deciding? He writes so well about misdiagnosis. Also, he writes about how an ASD dx can make parents feel less able to engage their child. That is the risk. You are clearly already hard at work as a mum - what would harness your DH most effectively - dx or self-help? Without a dx, might your DH think he'd "just grow out of it?" (which let's face it isn't going to happen without a lot of help)? Or might your DH like the challenge of taking responsibility for refusing to medicalise DS?

must stop and hope I've not caused offence. This is a very hard topic to discuss for me as I have great respect for all of us who have worked to obtain a suitable dx.

busybeingmum Wed 29-Jul-09 22:52:07

Message withdrawn

PipinJo Wed 29-Jul-09 22:52:09

Message withdrawn at poster's request.

lingle Wed 29-Jul-09 22:55:30

Am trying to remmeber previous threads. Was it your DH who drew the line at video?

mysonben Wed 29-Jul-09 23:00:07

Thank you very much for all your replies.

My gut instinct does tell me DS has asd, but mild asd.
DH thinks DS is borderline on the spectrum, and he might grow out of it. hmm

We both agree that DS is different, and has some struggles with communication and social skills, and a few sensory issues thrown into the pot too.

What worries us the most , is that should he get for example a formal dx of HFA considering his asd is quite mild (in our eyes anyway), could this become a problem with people like a teacher (for instance) who may have some personal ideas about autism (i mean everyone has a personal view,...i myself was badly mistaken about the spectrum before the verbal dx came) and DS could end up been treated differently or inappropriately, maybe not pushed enough, or put aside "oh! he is autistic, let's not bother he won't undestand that!"... just because of the label.
Don't know if that makes sense... a bit hard to explain. wink

I guess the idea of the 'label' scares us.

pickyvic Wed 29-Jul-09 23:00:36

same as yurtgirl. i could have kissed that prof....
best thing we ever did.

busybeingmum Wed 29-Jul-09 23:00:46

Message withdrawn

mysonben Wed 29-Jul-09 23:01:43

Yes DH got grumpy when i wanted to video DS having a meltdown over the new bathroom floor.

busybeingmum Wed 29-Jul-09 23:06:07

Message withdrawn

mysonben Wed 29-Jul-09 23:14:45

Busybeingmum, can they actually give a formal dx of mild/moderate ASD instead of HFA/AS ?

busybeingmum Wed 29-Jul-09 23:26:00

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busybeingmum Wed 29-Jul-09 23:26:00

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busybeingmum Wed 29-Jul-09 23:28:13

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mysonben Wed 29-Jul-09 23:37:31

Thank you. smile

Niecie Thu 30-Jul-09 00:16:46

I'm afraid I regret getting dx for my DS1. He has got mild AS apparently. I have never felt comfortable with it as I think the dx was plucked from the air. The Clinical psych who assessed him said he had social communciation difficulties but not badly enough for AS but the review team decided he should have the AS label despite the fact none of them had ever met him and despite the OT not being there. I think his dx should be dyspraxia with social communication difficulties.

I am not burying my head in the sand, by the way. I know there he is not NT - I was the one who raised the issue in the first place - but a label has done us no favours. We were packed off with a reading list and the advice of joining the NAS but no practical help with the AS. I read about the children who are trully affected by ASD and they have so little in common with my DS that I haven't felt comfortable with telling DS that he has a dx of AS because I can't say, you are like these other children when he really isn't.

He has had OT therapy since before he had the dx. The school have been very supportive in ensuring his therapy is done. He was on the SN register anyway because it was clear there were things he struggled with. I realise we are lucky with the school though and not all schools will be so helpful without a dx.

I am also afraid there appears to be some evidence of DS not being treated like the other children as you suggested in one of your posts mysonben. He is let off the hook if he doesn't want to do something. His Yr 3 teacher didn't get him at all and he coasted all the way through the year. I think without the dx she might have tried a bit harder but as it was, it was almost as if she was saying she couldn't be expected to understand him as he had AS.

But my DS is mild. If you have a truly autistic child then I can see a dx is useful. I think if you are borderline it is less so particularly if you have other issue like DS and the dyspraxia.

mysonben - can you find out what help will be available for your DS should he get a dx? If, like us there is nothing, then you have to query whether it is worth it. If a dx opens the door to whole range of help then maybe it is worth it. As others have said only you can decide as you know your DS best.

Good luck.smile

lingle Thu 30-Jul-09 09:13:14

"What worries us the most, is that should he get for example a formal dx of HFA considering his asd is quite mild (in our eyes anyway), could this become a problem with people like a teacher (for instance) who may have some personal ideas about autism (i mean everyone has a personal view,...i myself was badly mistaken about the spectrum before the verbal dx came) and DS could end up been treated differently or inappropriately, maybe not pushed enough, or put aside "oh! he is autistic, let's not bother he won't undestand that!"... just because of the label."

I asked this question of my headmistress - "is there a risk that he wouldn't be treated as an individual?" and she nodded and made a face - she is a very experienced head.

jeanjeannie Thu 30-Jul-09 10:13:18

Interesting thread and something we're currently thinking about. Paed is doing first nursery visit tomorrow to see how DD interacts with other children. However after our initial visit and subsequent letter to outline her findings I'm feeling less confident about the formal DX route hmm

Our letter bore NO resemblance to the notes and conversation I had with the paed after our home visit. Now this letter has gone to HV and GP - personally I wish we'd never got it. I am going to challenge it - when I've calmed down. I'm a journalist anD write eveything down and I'm worried that if our first letter outlining the findings so far, differ so wildly from what we were told then I'm unsure that a correct dx would be given anyway.

We've got DD into a FAB - near legendary pre-school with an outstanding ofsted that caters amazingly for all spectrum/disabilities. Lucky I know. The head said that hard-work parenting / school support and a good statement if you need it is far, far more beneficial than a dx - and her results prove it. My DD is so border line - the paed felt that she was operating "in the lower end of normal with a high IQ" I asked the headmistress what this would mean in terms of schooling and she said that she'd probably just 'fall through the gap' sad

DP and myself are now thinking that it may just be us and the school....throw ourselves into it and not worry yet about a dx - resources are so thin anyway - chances are we'll not benefit. I've been working on the Hanen programme myself with the aid of books and it's helping - plus my 14mth old is picking up language through it all too! If we plough all our energies into school, working with the teachers and assume that there will be very little NHS support anyway then we feel will be doing something constructive, regardless of dx.

Lingle thanks for the Greenspan post - am off to order books today smile

Sorry - that ended up in a ramble. So - NO, not sure that a dx will make much difference to us despite being optimistic about it at the start!

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