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??

HotheadPaisan Mon 27-May-13 20:03:06

I think if you don't know a lot about neurological difference/disability it's quite a steep learning curve.

Also, I knew when DS1 was given a diagnosis of AS that it didn't fit but it was all there was so we took it. His other diagnosis of HFA and various other things in a six-page report was much more comprehensive, contextualised and meaningful.

Day to day, it really doesn't matter. Anxiety and misunderstanding/ misinterpreting and not understanding affect everything we do or don't do.

I don't think anxious meant to be mean. I think she is just struggling to rationalise the shock and desperate worry for our kids we all share. She's come down in a different place from some of us presumably based on the context within which she lives either in her head or in her immediate environment.

Well said, Mareeeya.

MareeeyaDoloures Mon 27-May-13 18:23:32

I can take someone being a bit unpleasant when it's obvious they also have significant struggles trying to raise their dc. A 'one of us' sibling quarrel can be difficult, but it's unlikely that anxiousmum would begrudge any of our dc extra help in school, sympathetic treatment from a cafe owner, or jumping the Asda queue mid-meltdown.

It's the smug perfects, obsessed with competition and 'fairness', busy looking down on strugglers, with their 'will we try for the 11+ or the music scholarships' who get to me.

Hmm, I've been reading this thread as it comes up in my Threads I'm On, but have avoided posting as I was a bit gobsmacked at the way it went.

I guess thinking that our DC are 'less than perfect' takes parents in different ways. This grief process goes through denial and anger before acceptance. (trying to be diplomatic)

My DS2 isn't 'less than' anything, BTW. I feel he's more bouncy, more egocentric, more precious and more gloriously off the wall than most. But that's because I accept his quirks and value the insight his DX has given me into how his mind works.

I know I'm lucky that he's happy more often than not and doesn't suffer from anxiety, so my view of his disability is strongly affected by this, and this can be very different if your DC's SN affects them much more negatively.

zzzzz Mon 27-May-13 17:41:09

EllenJane behave yourself. grin

I'm not sure I think it's a heated debate. More someone being unpleasant to a group of already stretched Mums, perhaps under the impression we are "fish in a barrel". Most of us deal with far worse in real life, but it has been less than life enhancing, to say the least.

Ooh, Polter, is it really wrong of me that I wish I'd seen your post before you deleted it? wink grin

rosielou678 Mon 27-May-13 14:56:57

Well it's certainly raised a heated debate and, I for one (with my label of being dyslexic - a label I've had for over 30 years), have been given plenty of food for thought

MareeeyaDoloures - thanks for the link to D Bishop's blog. I found it a very interesting and a thought-provoking article.

flowwithit Mon 27-May-13 14:08:40

Actually, I just remembered the best way to deal with attention seekers is to ignore so I will not say any more about this!

flowwithit Mon 27-May-13 14:05:18

I hope anxiousmotherdotnet has gone now!
Or name changed to attentionseekerdotnetgrin
In my opinion this is meant to be a supportive board for people to get advice etc I'm not one for arguing really but I do think if you have such a strong negative opinion you should be careful who you choose to vent that to and you most certainly should not be posting on SN help forum

zzzzz Mon 27-May-13 13:20:39

Thanks for the D Bishop link, Mareeeya. I do like her!

MareeeyaDoloures Mon 27-May-13 12:47:26

Dorothy Bishop (child language guru) has blogged a good summary of the problems of categorising children's differences. And there are national second opinion centres, at Ormond Street and (I think) also expertise in borderline complex dc at Newcastle, Nottingham, the Maudsley and Edinburgh.

AmberLeaf Mon 27-May-13 10:30:17

At first I thought that you were trying to belittle me and my views by labelling me autistic!

Good lord.

So to you autism = bad? and thats it?

zzzzz Mon 27-May-13 10:18:44

anxious. Have you ever spent any time with a child with autism? I understand you've trawled the NAS website and read Tony Atwood's book, and spent time with your own child (who you don't feel fits the criteria), but do you know, or have experience of any other children/adults who do have the dx?

What do the other people in our sons life feel? More importantly how is he progressing without support? Is he happy? Do you feel he is making good progress? Is he still at nursery or hitting adult services? Will he need support as an adult?

Kleinzeit Mon 27-May-13 09:35:19

“I beleive that the autism label has too much baggage and too much misinformation around it.”

Then anxiousmother, please be extra-extra-extra careful not to accidentally spread any misinformation yourself. A lot of people don’t know that speech and language is also the place to go for help with non-verbal communication, and they shouldn’t be told the exact opposite. You haven't acknowledged my earlier post about that - were you mistaken about speech and language, or have I totally misunderstood what you were saying?

And who knows, if non-verbal communication is one of your DS’s biggest problems then maybe they’d be able to help him too? They certainly helped my DS a lot. And my DS might not quite tick all the boxes either – the clinical psychologist told us so and added “but I like to be creative in my diagnoses” smile

Though for my DS Asperger’s Syndrome really is the best-fitting diagnosis, and that’s become more apparent over the years; for your DS it might turn out to be something different. I’m no expert, but like Mareeya when I read your description I also wondered about dyspraxia. Misdiagnoses are possible, and so are changed diagnoses (especially for children whose diagnoses are borderline anyway) and so are dual diagnoses. Going through a full multidisciplinary assessment might get a you a diagnosis that is more accurate and helpful for your DS and less of a tickbox/labelling exercise.

And yes it is a sorry state that children cannot get help without a label.

It is a sorrier state that many many children cannot get help WITH a label, which imho is probably the main reason in hindsight I might not have sought one.

I don't think there is a fine line between high expectations and acceptance either, sorry. I like to think I do both rather well. It's my aim anyway.

'At first I thought that you were trying to belittle me and my views by labelling me autistic!'

This statement worries me. If I were to ask you if you had an ASD, you would perceive that as an insult?

There are posters on this board who do have an ASD dx, and some who suspect they probably should have. There are also a couple of posters who had to be asked outright after one or two unintentional misunderstandings who had never considered the possibility but subsequently think they might touch on it.

I know that my ds will become frustrated by the disabling effects of his dx, but it isn't the dx that causes it. It is the way he is. I strongly hope that he is never ashamed of himself.

PolterGoose Mon 27-May-13 09:04:56

anxious I asked for my post to be removed because another MNSNer pointed out that it was offensive in several ways, she was right.

coff33pot Mon 27-May-13 00:01:21

I guess I am trying to say that neither ASD nor Anxiety is a thing to be ignored. So if a dx is needed to gain support then it is not bullying its supporting the child and the childs future.

Misunderstood with ASD causes no end of turmoil for the child. Misunderstood with anxiety can very easily become a killer.

I am not in the best of moods and no doubt crap at explaining what I am trying to say but reading between the lines of your posts has quite wound me up.

coff33pot Sun 26-May-13 23:44:40

Starlight, Polter and Zzzz - Star you have summarised my feelings about 'Visual Learner'. Again, it is a label saying that that child's learning style is 'other' so it's his 'fault'.

NO

". I feel things have come to a sorry state if a struggling child can't get help without a label. "

REALLY?

And the subject of exposing child to ignorance.

Well that is going to happen. With or without dx I am afraid. If a child is "different" others will spot it. If they are anxious others will treat it like misbehaviour and punish or kids will ridicule.

I too dont think you understand the full implications of ASD and I really dont like the fact that someone thinks or suggests it is bullying to put a child through dx process or give a label...

Of course you are entitled to feel that way about your own child, but not mine or anyone elses.

ASD is a neurological disorder. The brain is different and wired differently.

I have a child with ASD and I have a borderline child without and she copes. I also have a child that has nothing but anxiety issues and believe me its a whole different ball game to ASD. I will say though that if anxiety is left to fester and no support or not adequately recognised then that can result in major mental issues, low self esteem issues and the makings of a very difficult future...

WilsonFrickett Sun 26-May-13 23:34:36

I feel things have come to a sorry state if a struggling child can't get help without a label

I really, really don't want to descend to personal remarks on this board, but WTactualF? Many struggling children can't even get help WITH a bloody label. Welcome to the sorry state. FFS I know of a child with CP in a Victorian school building who regularly falls down the stairs travelling from classroom to classroom. She is struggling to walk and gets no help. The system sucks - however, choosing to seek dx in the hope of getting the best out of the bad system does not make people bad parents.

Ditto

And a lot of the Autism Strategies used at school are pants IMO.

Yes. We know.

You sound very, very niave when you make statements like this. I am of course delighted that your child is getting fantastic, individualised help without a 'label'. I am of course disgusted that many children do not receive this type of help, with or without one. Thing is, most parents are trying to get to the first situation and they'll do that by working the system in the best way they see fit. If that means nodding along to another session on visual timetables they'll do it, in the hope that it will lead to the support that does actually make a difference.

zzzzz Sun 26-May-13 22:18:00

anxious

". I feel things have come to a sorry state if a struggling child can't get help without a label. "

Would you expect chemo without a dx of cancer? Or glasses without a prescription?

Your pros and cons are a little limited (understatement).

"Sly remarks" ???! Really? What possible motivation could anyone have for that?

I'm going to be brutally honest, I don't think you understand the first thing about ASD. If you think your son has even the slightest chance of having the mildest most "curable" ASD ever seen, you do need to educate yourself. Tony Atwood and NAS are not definitive. You make sweeping generalisations that make very little sense and are really quite rude. Many of the posters on his thread have children diagnosed with an ASD. Why on earth aren't you asking them what they think? Do you even have a child with difficulties?

Nonsense.

ouryve Sun 26-May-13 21:42:32

> I feel things have come to a sorry state if a struggling child can't get help without a label.

Short term economics, innit. Our NHS and education systems are not a bottomless pit of money.

anxiousmothernet Sun 26-May-13 21:40:29

Ouryve - it is a fine balance between high expectations and acceptance. I hope your little one will find his way.

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