Here some suggested organisations that offer expert advice on SN.

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??

UnChartered Wed 22-May-13 09:55:19

do YOU think this is a 'flip side'?

TBH, if he has HFA, he has it. It's not a label, it's him. The earlier you can put in interventions, the better his prospects. I have never regretted DS2's DX. As Star often says, see it as a signpost rather than a label, directing you to information and support. smile and tell relatives to fuck off grin

rosielou678 Wed 22-May-13 10:12:15

^ I'm with them ^

I battled for a long time with my son's SENCO to get DS tested for dyslexia. Private school, private report, long family history of dyslexia so absolutely no excuses for it not to be done. The SENCO told me not too because 'she didn't want him to have a label, and she could help him'.

What a lot of beep beep beep! She was no help at all because she then retired - leaving my son without support for another year. And when I did get him tested, it turned out he was the most severe case of dyslexia 2 leading dyslexia EPs had ever seen.

As I said, there is a strong history of dyslexia in my family - with both myself and DD having it. I was labelled too - accept my labels were 'thick' 'stupid' 'not bright' 'mentally retarded' - this was in the 70s. My DD (now grown up) was also labelled 'thick' 'stupid' and 'barbie-doll' - this was only 8 years ago. Once we got our proper labels - dyslexia - the world changed for both of us for the better.

Labels are other people's problems, not yours.

coppertop Wed 22-May-13 10:28:58

Ds1 was dx'ed with HFA around 9yrs ago.

At primary school it gave him access to help at school with things like social skills and motor skills. It meant that his teachers knew in advance that he might get upset about things that probably wouldn't have bothered other children.

At secondary school it means that his teachers know that his illegible handwriting isn't due to laziness or a lack of care taken, and that his difficulties with group work or PE aren't because he can't be bothered to try.

He's now almost a teenager, and I haven't yet come across a situation where the dx has been even a disadvantage, never mind harmful.

Ds2 was dx'ed with AS around 8 years ago. At the time it was thought that his issues would be relatively minor.

His dx meant that when things deteriorated fairly rapidly, he was able to access the help he needed rather than facing exclusion.

Again, I haven't yet come across a situation where the dx has been a disadvantage.

Both boys know all about their dx, and both were relieved to find out that there was a reason why they had always felt different to other children. Avoiding the dx wouldn't have done them any good.

Ineedmorepatience Wed 22-May-13 11:01:26

Agree with all the above, Dd3 was dx'ed with Asd when she was 9 after a 3.5 yr battle. Her "label" has done nothing but help her. She was getting labelled as stroppy and spoilt anyway so having the Asd label helps most people to understand that she has diificulties in many areas.

ouryve Wed 22-May-13 11:05:27

If he was diabetic, would those relatives regard him as labelled?

Tell them, very politely, even if it's in your head, to please STFU and let you get on with doing what is needed to help make sure that your son doesn't grow up with other labels, such as "the weird kid" or "the guy who is fun to take the piss out of."

crazeelaydee Wed 22-May-13 11:35:59

Having a name for your Dc's difficulties is not a bad thing. If anything it is easier (or should be!) to get help for a Dc. It makes it a lot easier to explain all those difficulties to others, should you need to, that you couldn't before the Dx. It also gives answers to the Dc with the Dx.

PolterGoose Wed 22-May-13 11:52:31

Grrrrr your ds has not been labelled, he has been given a medical diagnosis. Ignore them.

zzzzz Wed 22-May-13 12:31:22

Like many people I find the term "label" very negative. Groceries are "labelled" not people. People have names and sometimes they also have medical conditions and sometimes those medical conditions can be described in the form of a diagnosis. You would never say someone was labelled as blonde or diabetic or female.

My ds has no dx and is quite severely disabled, he is now 8. At first it wasn't clear whether his issues were language based entirely or whether the huge problems this otherwise healthy and friendly boy was having learning to talk were as a result of ASD. In our area there is no support either way so it makes very little difference.

I can't see why having a dx is negative unless you need visas to work in other first world countries in which case it can be a pain. You are under no obligation to disclose any medical dx to anyone, so can just forget it if it doesn't suit you later on. It's not going to make a blind bit of difference to who he actually is or his development.

I personally think not having a dx has made me a more inventive educator for my ds, but it is a pain in some ways because to some people no dx = mild/not really effected.

I think just tell relatives that that's how it is and move on. They are only working hough their own prejudices and will probably pop out the other end staunch supporters. FWIW if you didn't have a dx people would be asking why not. grin. Just take your own line and go with it. You can't please everyone.

anxiousmotherDOTnet Thu 23-May-13 10:31:52

Mumsnet SN board is very pro labels. Personally I hate the HFA/Aspergers labels. They are all about symptoms and tell you nothing about the underlying problems. (I have no personal experience of more severe autistic behaviours.) If your child has some hard-to-put-a-finger-on problems the paediatric system almost inevitably plonks the child on The Spectrum after faffing about with assessments.

The popular notion is that autism is a lifelong condition; however longitudinal studies are now finding that that ain't necessarily so. With good quality early inputs children who display autistic behaviours can go on to make very good progress. If that is the case, then why are we labelling children at such a young age? I find it deeply distasteful, that adult (usually) women are ganging up on little (usually) boys and hanging this massive label on them.

'Professionals' and 'autism experts' use emotional blackmail on parents by implying that your child will only get help if you agree to the 'experts' label. In my experience you can tell them where to shove their labels and still get whatever additional support is going.

What really seems to matter is tackling motor planning and non verbal communication skills. IME you'll get little help with either, as the whole autism industry is centred around the speech/language lobby.

I know that this board prides itself on being supportive, but it then runs the risk that there's no debate or alternative viewpoints. If you are relaxed about your child's label then good for you – your relatives will come round to your way of thinking.

zzzzz Thu 23-May-13 10:47:38

anxious can you link to the studies you mention? I think often there is a misconception that children with ASD don't make progress, when of course development is delayed not stopped. I'm not aware of anyone who has proved a "cure" through early intervention. What support have you received without dx and how did you access it? In my area a dx of autism excludes you from SALT input so I can't agree that the "autism industry" is centred around speech/language.

There can only be debate if those with different views post them. I think most of us love discussing sn and all it's ramifications that's why we post.

zzzzz Thu 23-May-13 10:48:41

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

I find this sentence hmm , what on earth do you mean??

PolterGoose Thu 23-May-13 11:24:12

anxious you clearly have absolutely no idea what you are talking about.

Utter nonsense.

ouryve Thu 23-May-13 11:24:31

anxiousmother I find your suggestion that I have ganged up on my boys quite offensive. How dare you angry They are not going to magically grow out of their autism without appropriate intervention and if they did, then great, the interventions worked and the diagnosis can be removed.

I find it ironic that you "label" yourself as anxious hmm or maybe your username is describing an agenda you have? Oh, I've just found you on twitter. Yes you do.

wasuup3000 Thu 23-May-13 12:16:10

What's their agenda ourye apart from being rather rude?

wasuup3000 Thu 23-May-13 12:21:31

http://anxiousmother.net/tag/child-development/

wasuup3000 Thu 23-May-13 12:21:42
ouryve Thu 23-May-13 12:31:51

And the twitter account is a single issue account, devoted to being anti-labelling.

All well and good if you have a child who is on the fringes of the spectrum, as I was as a child, before there was such a diagnosis as aspergers. I grew out of my selective mutism in my own time, without a diagnosis or intervention and I received no intervention for my dyspraxia. I am still dyspraxic and now in constant pain because my HMS wasn't diagnosed. But anxiousmother is right. She knows nothing about those children of ours who are much further along the spectrum and she needs to butt out.

HotheadPaisan Thu 23-May-13 12:44:36

Would love to discuss this but when it's framed in such negative language 'ganging up', it's just not going to work out as a sensible discussion which is a shame.

ouryve Thu 23-May-13 12:44:36

Oh my goodness, maybe I should say I was never "accused" of being hypermobile until 18 months ago.hmm

mummytime Thu 23-May-13 12:47:53

Well flippantly, it could help him get a job one day SAP story.
I think the label can help in predicting future issues, such as the teenage years; and in informing people of ways to talk to him, and things to be aware of; eg. a child being seemingly rude, or needing social stories to explain feelings.

PolterGoose Thu 23-May-13 12:57:07

She knows nothing about those children of ours who are much further along the spectrum and she needs to butt out

I've had a quick look at the blog and found it full of misconceptions and propoganda:

She suggests that autism is described as a static lifelong condition. Where exactly? I've done a lot of reading on ASDs and have only ever seen it described in terms of delays and deficits, and always mention is made that early intervention is key to long term progress.

She states that ADOS is used as a sole diagnostic tool. It is not. Diagnosis in the UK is based on multi-disciplinary assessments, based on findings from Ed Psych's, SALT, OT, Physio, school, nursery and parental observations. Not always all of these but I've never heard of anyone dx on ADOS alone.

She suggests it is more helpful to describe the range of difficulties a child has rather than using a named diagnosis. Hmm. When someone tells me they suffer with migraines I have a reasonable idea what that means, my knowledge and experience tells me they may have a headache, vision problems, dizziness, sickness etc, I know that everyone who suffers with migraine suffers differently, but, for example, it is easier to understand when someone struggling to carry out their job at work tells me they have a migraine than them having to recount their particular and specific set of symptoms. It is analogous to explaining why my child behaves as they do and struggles. I don't want, need or have the time to list out all the 'symptoms' of his autism every time adaptations are needed or we need help. I say he has autism and most people have a broad enough idea of what that means to know they may need to change their expectations or make allowances.

And I've actually found that it empowers ds to know that he isn't just the accumulation of a list of problems, he has a named and known condition which brings problems that we can work on and lots of advantages too. He can identify with other children and adults who have faced a similar range of challenges and draw from their experience to help himself (as we parents draw on existing knowledge to help our children). How is that bad?

bluedoo Thu 23-May-13 13:20:52

I am interested in this question too, because my DD, 6 has recently been assessed by an Ed Psych who has identified some characteristics typical of Aspergers. The school are giving appropriate support anyway and it has been left with us to decide whether to pursue a full assessment.

My initial reaction was to go ahead but after some thought I am worried that, in the future, people may base their expectations of her on a dx rather than seeing her as a unique individual. What about, say, secondary school staff who have some knowledge of autism but maybe do not understand how it can vary from person to person. Could this cause them to place limits on her? I'm not sure what is the best thing to do.

HotheadPaisan Thu 23-May-13 13:54:17

I'd have thought it wouldn't take long for anyone so inclined to expect less based on any criteria - laziness, whatever. Agree it it very difficult to understand the various issues that comprise the overall disorder. DS1's difficulties are so substantial he will soon have a FT statement so it's just not an option to not call it what it is even though he is far from typical, even of AS/HFA. No easy answers.

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