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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??

zzzzz Thu 23-May-13 18:52:34

relevant ... blush

Kleinzeit Thu 23-May-13 20:38:41

I don’t especially mind the idea of “labels” so long as people remember that the “label” doesn’t tell you everything you need to know about the condition. It just gives you a pointer for what kinds of questions to ask. Each diagnostic label is like a signpost stuck in the middle of a huge area – it’s a useful starting point but you still have to find your way from there.

And while there are always exceptions, I think teachers are very aware of how much kids can vary, and increasingly so these days because of inclusion. To take the other extreme a teacher friend of mine once told me she had five kids with ASC diagnoses in one mainstream class!

I sympathise with your position though bluedoo. There is no hurry if your DS is only six but I would think about getting a diagnosis before he hits secondary school. Secondary school is a huge step up and unfortunately some kids with ASCs who cope with primary school have a much harder time in secondary. My DS was diagnosed in primary school and started off in secondary with a lot of support allocated for him by the LA, but now he's settled they have been quite happy to decrease the support as he’s shown he no longer needs it (and give it to those who do!)

WilsonFrickett Thu 23-May-13 20:58:09

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

Do you know what I find distasteful? (among other things). Some of my behaviour when I was on my own, trying to manage a troubled little boy who had a will of iron, a vesuvian temper and no boundaries. When I 'ganged up' on him to get him to do stuff like, I dunno, not run into the road, or not freak out if he fell asleep out in the buggy and woke up in the house (cue 3 hour tantrum). That was very, very distasteful. I behaved in a distasteful way.

My son's DX has transformed my relationship with him. I absolutely get that people have anxieties around dx and of course, ultimately it is you and your family's decision to dx or not, but don't come on here and accuse me of ganging up on my beloved boy because I sought help and understanding for him. If you want to debate, kindly do so in measured terms.

To OP - It's really not a label, you don't have to share it, neither does your DC, unless it's helpful to you to do so. And it is infinitely more helpful than the other labels attached to HFA children - naughty, stupid, doesn't listen, withdrawn, precocious, too set in their own ways, etc etc etc.

WilsonFrickett Thu 23-May-13 20:59:14

^^ to Anxious. Clearly.

anxiousmotherDOTnet Thu 23-May-13 21:00:25

Post in haste, repent at leisure. Well here goes:

Firstly, you cannot equate a psychiatric label like autism with a medical diagnosis like diabetes, let alone with race. The Spectrum concept is only 30 years old and I hope it will move on soon. Here's another example of shifting psychiatric labels: http://www.newscientist.com/blogs/culturelab/2011/12/why-psychiatrists-should-mind-their-language.html

Starlight, I would hope that there's room for more nuance than either an autism or a naughty/rude label. http://www.mosaicofminds.blogspot.co.uk/2009/08/what-autistic-spectrum-disorders-and.html
My child does get reasonable adjustments at school, without a label.

Of course there isn't a 'cure' for a problem as vague as ASD, however there are studies indicating optimal outcomes:
https://sfari.org/news-and-opinion/news/2013/long-term-studies-track-how-autism-changes-with-age
http://news.yale.edu/2012/11/06/early-treatment-sparks-striking-brain-changes-autism
http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12037/abstract

Sorry if my language was ranty and hysterical, but it did feel like a group of Caring Professionals ganged up to label my child. With hindsight, they had all made up their mind quite early on that it would be convenient to put him on the spectrum. He went through numerous negative or inconclusive assessments until we got to ADOS which decreed that he should be offered an ASD label.

But if children, with the right help, can re-order disordered development why are they given labels at such a young age?

Zzzz I hope that my child doesn't feel like a Jew in Nazi Germany. What I don't want to do is to tell him that he must fit a particular narrative. The Tony Attwood book on Aspergers, for example, bears no relation to my child. There are things that he finds incredibly hard but I hope he will have the confidence to work on those and not feel constrained by 'you're obsessed with x or you're hopeless at y because you're autistic'.

He certainly does have quite severe motor planning problems which cause him to avoid demands and reduce his social abilities and concentration. Can I get help with those? No, because the autism construct (and publicly funded help) is built on social skill deficits.

HotheadPaisan Thu 23-May-13 21:11:22

But a diagnosis doesn't mean you can't or aren't expected to, it just means others should understand it's harder, and sometimes perhaps you just can't, on that day, in that moment, but it doesn't mean we can't try again another time.

HotheadPaisan Thu 23-May-13 21:17:03

Not sure you have to fit a narrative either. It's a framework for understanding, that doesn't have to be restrictive.

HotheadPaisan Thu 23-May-13 21:23:05

I do agree it all needs more nuance. But this book for example clearly states 'We don't believe in can't or never'.

And it is pretty bad to suggest women are forcing a diagnosis on boys unnecessarily, that's a bit strong I think.

zzzzz Thu 23-May-13 21:26:10

Anxious How old is he?

And why do you identify his difficulties with the experience of children with ASD?

What will you do if he doesn't "grow out of it"?

bludoo I disagree that there is no hurry. Best case scenario in my area the diagnostic pathway takes 2 years. It would be wise to check what it is your area, so you can decide when to wait and see and when to act if you want to.

ouryve Thu 23-May-13 22:03:42

IME, social skill deficits are the one thing that there is very limited targeted and effective help for.

As far as growing out of it is concerned, my nephew was non-verbal at 3 but now, at 12, passes as NT but geeky (think athletic Sheldon) to anyone who doesn't know him well. He still has strong vestiges of the social naivete stemming from his autism, though, as well as a lot of sensory and sleep issues and a need for routine. And he still feels twitchy when there's velour around, though he knows he can't just fondle it if someone's wearing it and manages to control himself!

I am under no illusion that my boys will follow the same path. DS2 still has very little expressive language, spoken or otherwise, at 7, FFS. He is still doubly incontinent. He still can't use a fork. He's only recently learnt how to use a computer or tablet. We know his receptive language is way ahead of his expressive language - he understands and acts on (if sufficiently motivating) complex requests and laughs at DS1's jokes and word play. This child with autism will become an adult with autism, though. As will DS1. Some of his symptoms will become more manageable - he has already overcome most of his language difficulties and since we've been medicating for his ADHD, his ability to communicate has steadily improves - but they will still be there and he will still have to try harder than his NT peers to deal with the social niceties and expectations and I suspect he will always have to make a conscious effort to deal with his poor frustration tolerance and sensory difficulties.

WilsonFrickett Thu 23-May-13 23:05:51

the Tony Attwood book doesn't fit my DS either. And I've had to fight tooth and nail for his limited support at school with his 'label'.

Look, I'm not here to defend the system. The system sucks. The ideal is perfectly differentiated help for every child, no matter want their needs - and one of those needs won't be a label. But 99% of the time, you will only be considered for help if you have a diagnosis.

So when posters ask on this board about dx's, most posters are pro-dx. Because ultimately, no matter what your reasons for wanting it or not, you will be twisting in the wind for help/support without one. I did not want to label my child. But he would get nothing without his label.

I wouldn't call autism a psychiatric label, but a neurological disability. I don't see the two as the same, though believe there are cross-overs.

Interventions for optimal outcomes are beyond most parent's ability to source for their children, and even then, they are optimal outcomes, not cures.

'But if children, with the right help, can re-order disordered development why are they given labels at such a young age?'

IF children CAN, with the right help, you can bet your bottom that no-one will give it to them with the hope that either the parents get it themselves or the children will work it out for themselves. One thing is for certain however, and that is that there is NO chance of getting such help without a dx.

I haven't found a book that bears any relation to my child either. So what? Given that autism means the children will have spikey profiles there are arguably more differences between two children with autism than two NT children.

BTW, my child isn't labelled and never has been. Someone somewhere who was qualified to do so wrote down that he has an ASD. I use that piece of paper to navigate the system and advocate for him. I don't announce it every time I enter a room.

zzzzz Fri 24-May-13 08:22:53

Perhaps part of the problem is that their is a blurring of understanding between psychiatric and neurological disorder?

Perhaps the issue with ASD Is that for some it is a mental health issues not a neurological issue and as a result they struggle with the stigma associated with that?

I personally think there is an element of both. I would say an underlying neurological deficit causes many profound and limiting psychological difficulties. It's one of the reasons I find the dx of ASD SO frustrating. I don't think we are looking just at psychological symptomes that are "spikey" but at totally different deficits causeing them.

So how much does a child who can't understand language, have in common with a child who can't empathise? How much does the same child have in common with a child who can't read body language at all, or one that is so overwhelmed by sensory overload he simply doesn't receive half the information the rest of us take for granted?

I would say the tip of the iceberg that we see, the symptoms, are surprisingly similar. I think they are result of stress on a scale most of us, mercifully, will never have to experience. Some therapies/support will as a result be useful to a larger or smaller degree for all. Others less so. But it is really impossible to draw any real conclusion as to what helps "these" children maximise their potential, because they are really not a group at all.

I identify with lots of the experiences of parents with children with ASD, OCD, tic disorder, anxiety disorder, language disorder, LD, rigid behaviour, sensory overload, hypermobility, dyslexia....the list goes on. I can write with authority on many aspects of caring and nurturing a child who is growing up differently. But I sometimes worry if I am really experienceing the same thing, or if my thoughts are even relevant.

MareeeyaDoloures Fri 24-May-13 21:01:07

It sounds to me like Anxious's dc has been offered an ASD diagnosis which she perceives doesn't fit perfectly now, and she feels will definitely be inaccurate in a few years time. She feels the professionals aren't listening to her, are ganging up on her, and appears to be describing a classical case of "too-many-carrots-in-one-room-SEN-groupthink". This is a scenario which most of us are familiar with, whether "Ms MD, are you sure the ASD label wasn't just a doctor's mistake? <fake sympathy>" or "Ms star, you can't simply teach an autistic dc reading <tilty-head>" angry

This, of course, doesn't mean Anxious's dc does (or doesn't) have an ASD, and (if he does) says nothing about the odds of its effects diminishing with age. It also leaves open the question of whether her dc might simply be very complex (like coff33ee's ds) and hard to get accurate descriptions for.

Now, I don't think diagnoses are labels. I think they're useful shorthand. Obviously the correct diagnosis is far more useful than an incorrect one, but sometimes even a slightly-wrong one can be of some help. A dyspraxic dc who is erroneously called dyslexic will still benefit from losing their lazy, stupid, not-trying-messy-writing label. That said, any characteristic can still be misused in an unhelpful-lazy-stereotype way. And, as zzz implies, there is so much prejudice against the neurodiverse that trying to 'pass for normal' must be an exceptionally tempting prospect for anyone whose dc is on the borderline for any diagnosis.

MareeeyaDoloures Fri 24-May-13 21:09:45

Oh, and you definitely can compare autism with diabetes. Type 2 anyway. They're both medical terms used to describe clusters of features, with certain validated diagnostic scores, a strong genetic component with significant lifestyle elements, and massively increased prevalence in recent years. I could go on about the parallels for hours blush <pet subject> but will restrict myself to these two paragraphs wink.

The criteria for defining diabetes has just changed, with the result that they pick up many more early or borderline cases. And there is a big argument about the usefulness (or otherwise) of aggressively reducing sugar / cholesterol / blood pressure etc in people at lower risk of complication. And about the risks of 'labelling' people who might then feel themselves to be ill, be unable to get mortgages etc.

I think you should be hired by MN to do a SNMN round-up of the week!

MareeeyaDoloures Fri 24-May-13 21:11:53

Star is right though. If you need anything from anyone other than yourself, grab the diagnosis with both hands.

BeeMom Fri 24-May-13 21:30:46

OK.... labels.

A child is diagnosed with cancer, the cancer is successfully treated with intensive and targeted therapy, the diagnosis is then - when the time is right - withdrawn. Development is not static in any child. It is not linear, and autism spectrum disorders affect global development pervasively. This is not a label we are discussing - it is a diagnosis.

We are not tattooing "labels" on our children, we are accepting medical/psychological diagnoses for guidance in ways to best support their development, which has strayed from neurotypical.

There are no shortage of labels on our challenging children already - spoiled, stroppy, disinterested, undisciplined, dumb - how about we describe then respectfully and accurately, instead?

Don't like labels, don't use them. Share them selectively. Don't use them as an excuse or an "out". But don't you dare tell me I am less of a parent because my child has been diagnosed with a legitimate, pervasive neurodevelopmental disorder.

I judge myself harshly enough, thank you - I don't need any help.

MareeeyaDoloures Fri 24-May-13 21:35:26

Star, cross-posted grin.

We do need to listen carefully to Anxious's fears of her dc getting an incorrect or harmful diagnosis. Personally I think that the over-zealous caring carrots are just as hazardous as the dismissive ones.

MareeeyaDoloures Fri 24-May-13 21:37:47

And BeeMom, so true about withdrawing diagn

MareeeyaDoloures Fri 24-May-13 21:43:47

Aargh. Sorry.

...withdrawing diagnoses. Allergies are being diagnosed much more often now, partly increased recognition, partly lifestyle change, partly some unknown factor increasing them.

But a dc with cows milk allergy, eczema or asthma will 'lose' that diagnosis when / if they grow out of it. Meanwhile it's very useful to know what to avoid, and how to treat the symptoms.

And for the severe allergies which will persist or worsen, early practice in the strategies to avoid (say) peanuts may be lifesaving.

Oh yes. My ds has been 'diagnosed' many times as a 'visual learner', a 'sight reader', 'poor liar', 'receptive language delay' etc. all of which are totally untrue.

Sadly they seem to stem from the original dx of ASD which is then poorly applied and filled with assumptions.

For that reason I can quite easily understand why someone would want to avoid a dx of ASD and insist that settings and the community deal with the individual difficulties the child faces. I do wish it could be like that for us if I'm honest, but it isn't and it won't be any time soon in the current climate unless I was extremely creative and could put my hands on a significant number of resources.

zzzzz Fri 24-May-13 21:47:55

The venom and loathing of Mothers who do pursue/accept diagnosis, is most likely the product of real anxiety and worry. The protective tiger-mama. Very few people would be so hurtful unless they felt trapped and backed into a corner.

I think this board should be a good place to explore worries about dx, and even aggressive feelings. It can only help the children involved and allow us all to explore other people's perceptions.

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