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Diagnosis = help v not labelling HFA

(185 Posts)
Confusingsituation Wed 22-May-13 09:52:53

I'm having a bit of worry about this
DS has been diagnosed as having HFA but he is young and having been able to track down some experts, I have been told the outlook is good.
They sat on the fence for ages but I think they have finally come off the fence because it means help can be put in place.
The flip side is that he has now been labelled. I didn't mind this but some kindly ? relatives have put this worry into my head.
Anyone further down the road than me, can I ask you was it the right thing to do, to have the issue named? Can it ever be harmful??

HotheadPaisan Thu 23-May-13 14:01:08

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HotheadPaisan Thu 23-May-13 14:08:35

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StarlightMcKenzie Thu 23-May-13 14:11:10

What Ellen said. It isn't a label it's a sign.

It is also protection in law against discrimination and gives an entitlement of reasonable adjustments in the community, education and employment.

Without this sign, you may be given a label of naughty, disruptive, rude, which once given and acted upon are likely to lead to further labels of aggressive, emotionally disturbed and vindictive.

HotheadPaisan Thu 23-May-13 14:12:45

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coppertop Thu 23-May-13 14:15:59

Bluedoo - My ds is now in Yr8 at a mainstream secondary school. I have no idea whether his teachers have/had any preconceptions about autism, but I can honestly say that they have never placed limits on ds or his ability. If anything, the opposite is true.

When he reached some of his end-of-Yr9 targets when he was still only in Yr7 or Yr8, they immediately set him higher ones and encouraged him to do even better.

At parents' evening it soon became obvious that they saw ds as an individual rather than just a generic 'boy with autism'.

bluedoo Thu 23-May-13 15:12:06

Thanks coppertop. That is reassuring. We need to keep thinking this through.

mummytime Thu 23-May-13 16:20:46

I have a sad story. A woman I know went through a lot of her adult life feeling different, and unhappy that she felt so different. She was diagnosed with depression, and even had EST.
It was only when her son was investigated for dyslexia and came out with a diagnosis of Autism, that it feel into place what her "problem" had been all along.
I am sure there are many more out there, and really need the correct "diagnosis" so they can be given the correct information to help them deal with life. For example: this woman had an older daughter, who she really struggled to understand as her daughter wasn't as "rule following" as her mother.

zzzzz Thu 23-May-13 16:36:52

I'm interested to hear what is SO negative about dx??

It doesn't get stamped on your forehead or anything. It's odd to complain about polarised views on the board, while not engaging in discussion. hmm

fanjoforthemammaries7850 Thu 23-May-13 16:38:44

"I find it deeply distasteful, that adult (usually) women are ganging up on little (usually) boys and hanging this massive label on them."

That is extremely offensive.

HotheadPaisan Thu 23-May-13 16:44:16

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PolterGoose Thu 23-May-13 16:45:52

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zzzzz Thu 23-May-13 16:46:05

Not only offensive but completely barmy! Who are these rampaging hordes of label stamping future limiting women?

Surely not the angst ridden exhausted posters on this board, many of whom stumble into MNSN with no support, bursting with the desperate need to do something to help their children?

HotheadPaisan Thu 23-May-13 16:48:29

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StarlightMcKenzie Thu 23-May-13 16:52:44

Only 15% of adults who received a dx of autism are in employment. This is the statistic that encompasses the full range of ASDs.

MareeeyaDoloures Thu 23-May-13 16:56:29

Its the patient (initially parent) choice whether to share any diagnosis.

HotheadPaisan Thu 23-May-13 17:01:47

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StarlightMcKenzie Thu 23-May-13 17:05:36

There are some parents on this board who have not gone down the dx route, but imo it is because they haven't needed to as they have understood in detail their child's difficulties and been able to source the appropriate provision.

For the average parent to pretty much way above average, the battle provision is hard enough without having to regularly be denied resources on account of no paperwork.

zzzzz Thu 23-May-13 17:07:49

I think the issue has more in common with hiding your "Jewishness" in WW2 Germany, than any real concern that the dx itself will harm the child. I think it says more about the individuals view of the world and disability than anything else. sad

Poor child to have to deny who he is to fit his own family.

PolterGoose Thu 23-May-13 18:03:02

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zzzzz Thu 23-May-13 18:27:12

I don't think it's laughable, I think it's about fear. Fear of the unknown and the hope that your child will be able to "pass" as normal. Like pale skinned mixed race children in South Africa during apartheid. We tend not to think that sort of thinking goes on in the UK but of course it does. It is chilling.

I personally don't see dx as an "answer" and so perhaps it doesn't represent the same thing to me as some others. I also see no evidence of it opening doors to provision or signposting us in any concrete and useful way. I have the greatest respect for medics, but I don't think they can help me or my ds.

StarlightMcKenzie Thu 23-May-13 18:29:51

I don't see dx as an answer either, sadly. It's a word to give a shared understanding of a starting place and importantly for us, a way to hold people to account for things ds was and should have been entitled to without a dx but wasn't getting.

HotheadPaisan Thu 23-May-13 18:40:50

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PolterGoose Thu 23-May-13 18:41:03

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HotheadPaisan Thu 23-May-13 18:49:53

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zzzzz Thu 23-May-13 18:50:03

For me the absolute bottom line point of the dx is so I can read the relevent research. That said I don't think the research that's been done is that great or relevent.

Without a dx you are flailing about a little trying to make a concidered plan.

Who are your peers?
What therapies are relevent?
What does the future hold?

The positives are that

you don't have to fight the stereotypes.
You must make your own plan so are forced to tailor every program to your child's needs.
You don't need to listen to professionals because you are not their bag. (Ridiculously great!)

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