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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

DS1 and I are similar, I switched off most subjects at 14 and the teachers just left me to it. I don't think a diagnosis would have helped but it might have helped me understand why I felt and was so different. Don't know, it helps to have read it all for DS1, lots of bells ringing, but he has things far worse than I ever did. But I did ok, and do well now so I have some sympathy with the 'don't diagnose' or 'no need' camp. That doesn't mean it's not lifelong though, you just get better at dealing with things.

Mostly it's an intellectual and political debate though, the reality is you've just got to work your way through what we have. It's not subtle enough, there are many conditions comprising ASD, but it's what we have for now. You would never pick DS1 as autistic at first I don't think. You would think all sorts about him, but not autism, but that is what it is. And we protect others from seeing a lot of it.

The outlook for him would be very poor without understanding the neurocognitive root of his problems. Even understanding it doesn't necessarily achieve much on its own but it helps.

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

On the whole you have to think about what help you think your DC need and how you are going to achieve that whether they have a diagnosis or not. DS1 needed an adult anchor, there is no way he would be in school without one. Our aim is to keep him in education, that is it, just keep him in, anything else will be a bonus.

And if he does have to come out our aim will be to access whatever funding or resources we can in order to help him. I don't think any of this would be possible to do without a diagnosis as things stand but if the needs aren't this great then it's possible to just work with school to provide what's needed.

Either way I'd get Huebner's books and this one for your DC to read as they get older. I'd just say it's about difference, whatever we call it. I manage to read Huebner's 'What to do when your brain gets stuck' without mentioning OCD at all to DS1. Soon he'll be able to read - I'll deal with the medical labels then!

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

Yes, I really, really do not like it being called a label. We should not label people for any reason.

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 Belgium 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

FanjoForTheMammaries 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

I don't really get it, if you're different, and I am, and are fine with that, and I am, the rest mostly boils down to politics and/or medical/social models of disability and difference and so on, and we're just not ready to discard all that as a society. I agree it shouldn't matter, but it does, for now.

It is bad to suggest I'm hanging labels on DS1 for fun. It has been a deeply distressing time for years, the problems are not trivial, whatever you call them.

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

It's odd to complain about polarised views on the board, while not engaging in discussion

Hmm, she probably got a few extra blog hits out of it.

It's actually bloody rude to pounce in with a rant disagreeing with everyone else, offering no support or guidance, not offering any alternatives or engaging in discussion. But then blogging is just modern day soapbox shouting really.

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

Also, fundamentally what needs addressing is prejudice, you're not going to get rid of that by just not calling things what they are.

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

I agree, the discussion has not been set up well, the minute inflammatory language is used I switch off.

Whilst there is something in understanding the specific difficulties, I'm not sure it's enough to just say it doesn't matter about understanding the brain differences as a whole. It does matter, but not as much as having some compassion and humanity.

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

The whole "my child is probably autistic but I don't want to label her/him" is so common and so ridiculously and inherently contradictory it is laughable really. Right? So you have decided that your child shares enough features in common with others who have a diagnosis of an ASD, and it is okay for you to identify them as such? But actually having them assessed to see if they actually do have an ASD? No? Of course not, because then they'd be labelled confused What is it with parents being perfectly happy to describe their children as having a recognised condition, but that somehow a formal and professional diagnosis will ruin their lives.

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.

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

All anything comes down to is what help do you think is needed? If you or school can provide that no matter what, and you don't anticipate any significant problems in the future, fine, don't pursue it. It's not a now or never decision, although most people regret not seeking help earlier. If the time comes it can take a very long time to get help.

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

Same here Star.

The difficulties my ds exhibited were the same before, during and after diagnosis. But what diagnosis changed was how people interpreted and responded to those behaviours. And that is the really important bit.

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

I really did think understanding and using the right strategies and having professional involvement early on would mean things would get easier as DS1 got older. It never occurred to me things could or would get even harder.

I don't know, it was so obvious he wasn't going to manage at school, and it was so difficult to understand what was going on at home. People on here gave me the most understanding though. Some others in DS1's life have been helpful but not all.

It does take some getting used to, and although a neurocognitive difference and associated difficulties aren't the sum of DS1, they are an awfully large part of his life.

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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