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

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.

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 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 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 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 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!)

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:

Starlight, I would hope that there's room for more nuance than either an autism or a naughty/rude label.
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:

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.

HotheadPaisan Fri 24-May-13 21:56:52

I dunno, if it's a political/ fanatical stance, on anything, I'm not sure you care about others' feelings, you just have to get your message out. I umm and ahh about the whole social/ medical thing but like I said it's all academic for some where development is not just delayed or disordered and might be ok eventually. For us, we've just got to all get through the next 15 years in one piece and hope all is well.

BeeMom Fri 24-May-13 22:08:52

I see that, Star, but to want to avoid a diagnosis for your own child is one thing, to make an accusatory statement condemning mothers across the board is another thing entirely.

In all honesty, following any assessment/diagnostic path brings with it the risk of actually ending up with a diagnosis. ASD assessments are not like school portraits or vision screening - it is not something done for all children at all times. There needs to be cause for concern. There must be consent requested and obtained. No parent walks into a school conference and hears "you didn't know we were assessing your DC, but guess what... they have autism!"

In all reality, autism diagnosis, as well a the diagnosis of other neurodevelopmental disorders and learning disabilities, is a very subjective matter at the best of times. In many cases, it is not a yes/no, but instead a complicated and convoluted experience, coloured by the bias and experiences of the assessor, the professionals, parent(s) and the child themselves. It is not a pure science, and vulnerable to ego and cynicism, but it is the best we have at the moment.

MareeeyaDoloures Fri 24-May-13 22:10:56

Beemom, perfectly put.

anxiousmothernet Sat 25-May-13 10:10:47

After my flaming this week and being told to butt out by Ouvyre, I still want to make some points.

Ouvyre, my personal experience of autistic behaviours is at the borderline/mainstream end.

Also I've never, ever used the term 'grow out of it'.

Autism is defined by the American Psychiatric Association in the DSM. Psychiatrists from around the world try to group together different symptoms into 'diagnoses'. So as with any psychiatric 'diagnosis' it is just a label for a collection of symptoms. There's no swabs or blood tests or biopsies.

If autism was diagnosed with a brain scan like an MRI or EEG that might be a different matter, but it isn't. Mareeya – autistic behaviours may perhaps be like the type 2 diabetes, but the public's perception of autism is more like type 1 diabetes (from NAS website: autism is a lifelong developmental disability).

One of my complaints against the Autism label is the assumption that it is a neurological condition. Given the prevalence of motor planning and sensory processing difficulties I believe that autistic behaviours also have physiological roots.

Wilson Frickett you describe your despair before your child's strange behaviours were labelled and how much easier life is now. Good – I'm glad that the autism label has helped you. However in my child's case it is not an easy fit and has not given any insight into why he finds certain tasks and situations difficult.

Several people on this thread, and on other threads round about, say that they had to label their child to get any help. Some of those threads read, to me, like the authorities are implicitly coercing and blackmailing parents into labelling their child. Of course the authorities will spin some BS about resource allocation, but IMO it's really about maintaining the status quo. They say: we will only help your child if his card is marked to say that he is pathological and defective. Then the school will issue a move 'n' sit cushion and a laminated visual timetable, but there's no danger that the school, or indeed the education system itself, will make any fundamental changes to the environment or curriculum.

I looked up Pathological Demand Avoidance yesterday, having avoided it because of the word Pathological. Some of PDA is a fair description of my child, but there's no explanation of why he might find demands stressful. And I certainly wouldn't want to burden my child with a Pathology. (I will show the blurb to his school though)

Zzzzz – you say in one post about people who 'can't read facial expressions'. That's just the sort of absolute statement that makes me grrrr. My child didn't learn to read facial expressions as a baby, but as a child he's been taught. Of course he's not as brilliantly fluent as other children his age who have been doing it for years, but he's getting better.

The autism industry is enjoying a boom at the moment. (For eg, there are now a dozen UK universities selling Autism Studies courses). As more and more symptoms get added to the autism roster, so the drag-net gets wider and more and more children caught up in it.

I'm incredibly fortunate that my child's school gives him as much support as other children who do have ASD labels. I've also been very upfront that we want help and not labels. Sometimes that has led to minor exclusions from support and services, but I've always complained about those and usually got the support in the end.

BeeMom – you are right, I blundered into the assessment and diagnosis trap thinking that would bring enlightenment. It didn't. It was a slow moving conveyor belt leading inevitably to an ill fitting lifelong label.

Hothead – education, SEN and health are all publicly funded so dealing with children who have developmental is inevitably a political issue A bit like Type 2 diabetes has become a political issue. Are you saying that my views are fanatical because they're different?

Much of my anxiety is centred around my child's real difficulties and our relationship, so perhaps ruminating on the crapness of the system gives me a break from that. I'm sorry if I've upset people, because it's all quite upsetting enough when your baby isn't developing as you'd hoped.

Here's a positive look at fixed and maleable mindset

HotheadPaisan Sat 25-May-13 10:17:53

No, was a general comment. Critical analysis is important but inflammatory stuff doesn't help. The system is crap. I'm not even that intersted in the research, a lot of it it utterly pointless.

PDA is a crap name for a good description of a collection of issues. Extreme demand avoidance and an anxiety-led need for control describes DS1. Then there's the sensory and processing stuff. He has about four or five things listed in reports, was quite overwhelming when I first read it but it is an accurate description of his difficulties.

FanjoForTheMammaries Sat 25-May-13 10:18:33

Neurological IS physiological..youare confusing neurological with psychiatric methinks.

HotheadPaisan Sat 25-May-13 10:19:50

And it's all a brain and physiological/ nervous system thing I think, it's all inter-related. Whatever happened to holistic approaches, they used to be all the rage.

FanjoForTheMammaries Sat 25-May-13 10:19:56

My child has massive motor planning issues. They.are neurological.
i.e caused by something as yet unknown in her brain.

FanjoForTheMammaries Sat 25-May-13 10:22:34

Also saying a diagnosis means "giving your child a label that they are pathological and defective" is again very offensive to me.

I don't care about labels as there is no way my DD could pass for or ever become NT with or without one but she is not "pathological or defective".

You just can't seem to help.yourself coming out with this stuff.

FanjoForTheMammaries Sat 25-May-13 10:24:05

You seem to find the word and diagnosis of autism somehow offensive and think that people with it are labelled as lesser humans I think.

FanjoForTheMammaries Sat 25-May-13 10:24:52

Anyway I would just love the luxury of angsting about "labels".

FanjoForTheMammaries Sat 25-May-13 10:25:16

It is just semantics

FanjoForTheMammaries Sat 25-May-13 10:28:08

Sorry..I appreciate I have different issues..just see the red mist when I read about my child's condition as "pathological and defective".

PolterGoose Sat 25-May-13 10:50:50

Neurological is physiological.

There are other neuro conditions that are diagnosed without any physical evidence, for example, epilepsy and chronic pain conditions can be diagnosed based on patient history, descriptions and observations of behaviour/effect and good clinical assessment.

FanjoForTheMammaries Sat 25-May-13 10:57:30

I'm sorry I got ranty there.

I do know how hard the DX or non DX process is..take care of yourself but don't be scared of the autism DX.

cansu Sat 25-May-13 11:08:58

I have two dc with ASD and a dp who is also undoubtedly aspergers. It is clearly a genetic condition for us and to describe it as a psychiatric disorder is ridiculous. Fwiw I do understand the unwillingness to diagnose if your child is at the less severe end of the spectrum because you can then do what anxious mother is doing and instead refer to the symptoms such as poor motor planning or poor understanding of non verbal communication etc. however I think the refusal of a diagnosis has more to do with feeling ashamed or depressed at the diagnosis than in getting a better outcome. If the diagnosis does nothing else it enables you to protect your dc to some degree from other people's ignorance. I suppose in some ways blogs like anxiousmothers may also serve to perpetuate the idea that autism is something to be ashamed of.

PolterGoose Sat 25-May-13 11:27:28

I do think it is a huge leap to go from "they tried to diagnose my child with AS/HFA, something I don't believe he has" to "every child diagnosed with AS/HFA is incorrectly diagnosed" confused

My child does have a diagnosis of Aspergers and when I read Attwood or other texts on Aspergers, or read posts about children with Aspergers, or discuss Aspergers with other parents, I totally identify. My ds shares an enormous amount of characteristics with others who have it too, this is exemplified when we discuss what our children say, there is a shared logic, a shared thought process, the cognitive similarities are mindblowing at times.

I've said it before, the person who benefits the most from dx is my child, for he is no longer a list of problems, he now knows there is a reason for his difference, and can benefit from the evidence and anecdotes of strategies that have helped children like him learn how to live in a world that does not celebrate neuro-diversity. We can celebrate the advantages of his Aspergers, and he can take solace in the many adults who have Aspergers and have succeeded.

AmberLeaf Sat 25-May-13 12:10:43

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 agree. they are of course wrong though. My child isn't mentally ill [for now anyway]

It is hard, but I think parents need to get over their own preconceptions and do what is best for their child.

zzzzz Sat 25-May-13 12:19:45

anxious it is hard to interact with you when you are so uncaring of the feelings of others.

Strangely you will probably get a better response to this than you really should because we not only have an understanding of the turmoil you are obviously experiencing, but also are well used to dealing with challenging behaviour and inappropriate comments.

That said please be mindful of who you are talking to and that not everyone is in the fortunate position of having a school that is so accommodating, or a child that can flourish with such minimal input. The parents on this board are some of the most courageous caring and inspiring I have ever had the pleasure of meeting. They face challenges that, given your comments, I think it is unlikely you have had to face. Don't hurt them or make them feel worse to strengthen your own resolve.

It's also quite hard to have a discussion if you don't answer any questions. You haven't been flamed, you have had a response to some really quite offensive and hurtful comments you felt moved to post on this thread. I think people have been very measured. I certainly have tried quite hard to engage rather than ODFOD.

I don't think I mentioned "facial expression" but I suppose that is one aspect of body language (ie non verbal communication). I can see that given you were able to teach your child to recognise facial expressions, you might feel it was possible to teach all children. Can I just say categorically that there are individuals who don't learn in a few short years. Strangely body language and empathy are my ds's stronger suits. He however is much more profoundly disabled than a child who could cope with SA level intervention.

I think you are also wrong in assuming that you are posting to a very strongly pro dx crowd. Most people can and do see positives and negatives.

fanj you are right re neurological, I think there was a level of confusion clouding things.

BeeMom Sat 25-May-13 13:32:02

I am seeing the "issues" that anxious is coming up with have actually very little to do with her child and a lot to do with some deep seated self loathing for something that I can't quite understand or wrap my head around (feelings of parental inadequacy, perhaps?). By your logic, anxious, anyone who does not reject ASD diagnosis out of hand is apparently somehow complicit in the development of the "autism industry" or seeking to medicalise something that can be improved or something other method of identifying a child as "pathological and defective". I am certainly glad that being "railroaded" into diagnosis and the use of techniques that have been shown to support learning and behaviour in children with ASD in the classroom is helping - certainly the "autism industry" had nothing to do with the support methods your child is receiving, correct?

Guess what, my child's body and brain ARE defective, and there is a pathology, but my CHILD is not defective. She is a sweet, loving, gentle, strong warrior who has triumphed over more in her seven years than most people could even imagine, let alone come through and keep a smile on their face.

Classroom adaptations in a MS setting are a pipe dream for us. You are comparing apples to oranges here. On top of that, Bee's ASD features are neurological (she has had 2 strokes and deals with uncontrolled daily generalised seizures from the "undamaged" portion of her brain) AND physiological (Physiological refers to physiology - the way that the anatomy functions --or doesn't--). Neurology is just a subset of physiology, a smaller part of the whole.

With that said, to attach shame to psychiatric illness just further stigmatises it, and if you do that, you are in for a shedload of trouble in the future. The incidence of mental health issues in individuals with ASD labels diagnoses is staggering. OCD, depression, bipolar disorder, agoraphobia - all of these are exceptionally common in older children/adolescents/adults with "mild" ASD. Fortunately for you, since you can dismiss your child's ASD diagnosis out of hand, I am sure that ignoring these down the road should be just as easy. Let me know how it goes for you.

Yes, PDA is not a beautifully or gracefully named disorder, but neither is Non-Verbal Learning Disability or any one of a number of others. Obsession about the words is pointless, and just redirects energy and attention from what matters, which is how to support our children and ourselves and make life the best that we can in a difficult situation.

Now... on to the topic of flaming. You are apparently unclear, anxious, about what flaming is. What the other members of this board are doing is taking exception to your offensive and broad reaching statements by countering them with respectful and honest examples why you are wrong. If we were calling you a shallow, callous, self centred git (which nobody has, regardless how tempted they might have been), then we would be flaming you. See the difference?

At the end of the day, if, after through assessment and consultation, an individual is deemed to fit the criteria for an ASD, or mitochondrial encephalomyopathy, or Type 2 diabetes, or blindness, it is a diagnosis and NOT a label. Perhaps the definitions of these two words might assist you in understanding the subtle differences between these two words...

I don't know about being 'railroaded', I led the campaign for my ds' dx and when the professionals seemed reluctant or stalling, booked him in for a private dx.

I'm not sure what part of the autism 'industry' I represent and despite the ASD dx, most on here know that I have been fighting AGAINST the 'SEN Industry' since before dx.

'Given the prevalence of motor planning and sensory processing difficulties I believe that autistic behaviours also have physiological roots.'

Can you explain what you mean by this? Also than what?

And, for the record, I think TC is an idiot!

PolterGoose Sat 25-May-13 14:02:53

Fabulous posts zzzzz and BeeMom flowers

Star who is TC?

MareeeyaDoloures Sat 25-May-13 14:10:41

Anxiousmum, it's possible that 'The public's perception of autism is more like type 1 diabetes' and I'm well aware that the NAS defines it as a lifelong condition.

The public's perception of autism is generally so far off the mark, that I prefer to ignore it altogether. That said, their perception of type 1 diabetes is doubtless just as poor.

MareeeyaDoloures Sat 25-May-13 14:20:02

In fairness to anxious though, I think there's a strong anti-neurodiversity, unconscious-eugenics-lite strand to the current tendency to assume that difficult or disruptive dc must be 'genetically challenged', and that they should be changed (or just go). Sometimes I'm just a teeny-bit reminded of the Soviet tendency to declare the awkward squad 'mentally ill', to make them easier to ignore, or imprison.

AmberLeaf Sat 25-May-13 14:30:25

Great posts BeeMom and zzzzz

BeeMom Sat 25-May-13 15:01:31

Mareeeya I'll bite. If it is not genetic/physiologic/neurological, then where do we go, back to the "refrigerator mother" theory? If you have a problem with your car, you don't obsess about the factory it came from... you try to fix it. Ideally, it is repaired with more than just a band-aid solution.

If a child is difficult or disruptive, they DO need to be changed, taught how to behave in the classroom, to function in society, at the risk of reaching adulthood entirely lacking these skills. If you have a NT child, they learn this seemingly by osmosis, with a child who processes input differently, this teaching has to be more overt.

The alternative to "fixing" the problem is to withdraw - HE, isolate and declare it "fine". If that works for someone, who am I to judge?

Yes, in our childhoods, children who were on the mild end of the spectrum or had behavioural challenges were not diagnosed, but instead punished, beaten and shamed into conformity.

Similarly, 25-30 years ago, GORD was almost never diagnosed, let alone treated. Anxiety was something you lived with, depression "happened". High cholesterol and blood pressure didn't have tablets thrown at them as a first resort. PMS was somethng you lived with until you hit menopause, then you lived with hot flashes. Chronic fatigue, fibromyalgia, any one of a number if "invisible" conditions barely existed. There has been a paradigm shift across the entire medical field (perhaps related to the concept that it had the potential to be VERY profitable if mild illnesses and conditions were treated as if they were major or critical illnesses).

We cannot force people to "accept" or "embrace" neurodiversity. Honestly - there are those who won't accept different body types, skin colours or religions - demanding acceptance of something even less tangible is a lofty dream. Not impossible, mind you - but it won't happen just because we say it should. Parents are seeking diagnoses because they feel their children cannot succeed without support. This is not a quest for sameness, but for the coping, safety and psychoeducational skills to ensure that the child has the best possible opportunity to grow and become a contributing member of society - functionally independent and stable in self.

anxiousmothernet Sat 25-May-13 15:14:03

Beemom - I am indeed a shallow callous self centred git, so thank you everyone for replying. However my interpretation of the term Autism is in your second link: "a classifying phrase or name applied to a person or thing, especially one that is inaccurate or restrictive"

Zzzzz - you are being very kind. As is everyone.

Fanjo - I don't believe there is a Thing called Autism. I can see autistic behaviours, which as expressions of anxiety are a cause for concern for me.

I do often feel shame when my child kicks off in public. But when I see his behaviours as anxiety rather than stims my response is more empathic and the outcome usually better. Yes, the autism label (as read from the books) has totally riled me. If don't think about Autism and do think about my little boy as a person then it's easier.

When my child was at nursery and going through assessment, the teachers and various specialists started using code words like Visual Learner and Special Interests. So they labelled him before he was labelled. The nursery also made it quite clear that DS was the one with the problem, not their rubbishy establishment. Requests like, could you get down on the floor and play with him sometimes?, or could you slow down your speech and make requests clearer?, were met with 'we don't have the resources' type response. The other parents in the nursery gave us the cold shoulder. In my experience, being different or delayed is treated as defective and pathological.

Polter - the autism narrative obviously works for you and your child. I guess it must work for quite a lot of people for it to have taken hold. I'm just saything that it all seems Emperor's New Clothes to me.

I don't think that my child is mentally ill. I'm just stating the fact that the autism diagnosis/label is contructed by Psychiatrists. I believe that my child's anxiety is due to missing a number skills. Wish I knew how many.

Re: motorplanning - what if it's physical movement in the real world that develops links in the brain? DS's terrible motor planning causes him to seize up with fear at most activities. Since life is a sequence of activities this is a big problem. It has a social impact: while he can manage simple tag games, more complicated games terrify him. According to the social skill deficit narrative that's because he lacks imagination (actually he has a surfeit of imagination), but if you think about it in terms of movement, he doesn't want to play eg shops because there's too much sequencing involved.

So if he can build his simple sequencing, more advanced sequencing skills will follow. Everytime he sorts a pile of laundry or climbs a new tree, I hope that he is developing new neural pathways. I know that sounds flaky, but it's my hope.

Social skills groups and a lot of ABA by contrast are all focussed on the symptoms, not on building the underlying skills.

Fanjo - your interpretation is that the brain is stopping the development of motorplanning skills. My interpretation is the inverse. Yes we have to work through a shed load of behaviour before he'll agree to tackle a new task, like sorting laundry, but once he can do it the resistance diminishes as the confidence builds.

Did I say that every child with AS/HFA is incorrectly diagnosed?

ABA is certainly SUPPOSED to build underlying skills. That is the 'analysis' part.

StuBlack Sat 25-May-13 15:21:33

Hi Confusingsituation, I can understand your worry. At one level any diagnosis is a 'label', but the only way the healthcare system can handle the complexity it has to is by labeling or categorising conditions.

That aside, 'label's mean different things to different people: they can bring out prejudices in some, which may be what your relatives fear, but as some of the other comments say at least having your DS's condition categorised means that the support options available for that condition are now available to him. The downside is this might also limit the options in some people's minds - the diagnosis of these sorts of conditions is much less scientific than one might expect.

So I would recommend you accept the 'label' as what it is but don't allow it to limit your options. Good luck.

FWIW I have very little time for most psychiatrists. Are you one? Your references to 'stories' suggests you subscribe to a lot of their theories?

Tony Charman is one and I have very little time for him and his empire.

MareeeyaDoloures Sat 25-May-13 15:34:21

BeeMom, glad someone bit grin.

Anxious mother, have you read this guy's book about medicine? He did one about schooling as well.

Everything you have said about psychiatry and neurology is equally true of other disciplines. ASD is a reasonable diagnostic construct, as these things go, but the cracks are showing, just as they are in so-called 'breast cancer' or 'stroke'. You won't find anyone on this board who thinks that so-called 'autism' is one unified condition (nor even 20!) wink

BeeMom Sat 25-May-13 15:41:41

That is your child and your experience, and not one of us has said that your experience is invalid or wrong. What we are saying is that your experience is not everyone's experience, and to thrust your views in the faces of those who are fighting their own battles and declare their experiences invalid and unworthy is what has caused this ire.

You feel that your son does not deserve the "label" of autism, then reject it, and its associated supports . Go it alone. The nursery didn't have sufficient resources to do all you wanted them to do with your ds - so pull him out and give him all the 1:1 you feel he requires. You can't have it both ways, though. You certainly don't want to be contributing to the burgeoning autism industry, do you? The quote you fired at me was from the definition of "label"... thus proving my point. If you feel it is inaccurate or limiting, then reject it, refuse it and fly solo. However, in the same breath, refuse the "stims" and the "anxiety" label too. You said labels are restrictive, after all.

WRT the opinion blog you have repeatedly posted - I can write a book and publish it (in fact, I have) and have someone review it. This makes it neither legitimate nor factual. That makes it opinion - based on bias, ego and experience.

Since the Great War, there has been an ever evolving term for the condition where soldiers have reached the mental/emotional point at which they can no longer cope. It was shell shock, then by WWII it was known as battle fatigue. In Korea, it was operational exhaustion, and is now known as post-traumatic stress disorder. Same condition, different names. Akin to the blog you posted - time passes, terms change.

You give FAR too much power to words - the recreation and rearranging of 26 letters, with occasional capitals and punctuation (if you are lucky). A label is derogatory if you allow it to be - it holds only to power you attribute to it.

Do you honestly want to hand over that much power?

MareeeyaDoloures Sat 25-May-13 15:43:34

I do think ASD is genetic / neurological etc. But a 'difference' only becomes a 'disability' when it stops you doing something. Which is partly intrinsic but also heavily influenced by circumstance. That's partly why I worry a bit about the trend to divide society into 'normals' and 'disableds', I think being seen as 'other' has historically been rather risky.

Not a brilliant analogy I know but I sometimes think that ASD as a 'label' is a bit like being British. An outsider can start by making an assumption that you speak English, live in a brick building of some kind, are part of a 2.4 kid family, go to school, have 3 meals a day, shop at supermarkets etc, keep clothes in wardrobes, push babies around in prams. With that knowledge they can adapt the way they communicate to take in account of your likely language, vocabulary and experiences and accommodate for the fact that since it is 1:30pm you probably haven't eaten since 8am and are hungry.

None of the above can be true and you can still be British. However, refusing to disclose where you are from to avoid assumptions is odd imo, unless you feel the society you are amongst presents a danger for you from doing so.

MareeeyaDoloures Sat 25-May-13 15:54:10

Risky as this particular 'other' is often (not always, but applies to ds and some of his peers) characterised by being highly observent, demand avoidant, oppositional, not listening and responding as expected, resistant to bribes, blackmail and peer pressure, very logical, strong sense of justice, persistent, high energy, unpredictable to strangers... Teachers frequently fear and hate this. Parents struggle with it. Why wouldn't other powerful types hate it too?

MareeeyaDoloures Sat 25-May-13 15:56:53

Anxiousmother, have you looked at developmental co-ordination disorder (or whatever they call dyspraxia these days) <awaits flaming>

PolterGoose Sat 25-May-13 16:03:35

What's the alternative to this 'autism narrative' then?

But Mareeya there are always 'others' (humans like to categorise) and at least when a group of 'others' can identify with each other in their 'otherness' they have a chance at feeling less 'other'.

It is a lot easier being different when you know you're not the only one.

I'm a SNMNer and I'm bloody grateful that I'm in a group, even though many within it differ in their outlook and difficulties. We share commonality. It's a relief and keeps me strong during the tough times.

BeeMom Sat 25-May-13 16:06:16

That is a very valid point, Mareeya.

At the same time, there are also those (always have been, but current trends seem to have made this a lot easier to accomplish) who will use "disability" as a tool to accomplish or refuse certain tasks, challenges and agendas. In limited cases, this is being indirectly taught to children through the behaviour of parents who do not hold them accountable for their behaviour as it is being attributed to their "disability" and therefore dismissed.

In reality - my DS is an odd duck, and while I have been outright asked if he has ASD (by strangers, no less) it is NEVER something I volunteer, and at 14, I explain to him that it is prudent that he limits what he tells others as well.

Bee, on the other hand, is very visibly disabled, and no denial of labels or refusal to acknowledge her challenges is going to alter that. I still demand of her the same degree of effort and behaviour as I would if she were unaffected. She plays baseball (in an adapted league) she competes in Special Olympics - both things that would not be available to her without "labels".

Realistically, difference or disability is less important than the attitude of the individual and their "inner circle" and how much they allow the "difference" TO "disable".

MareeeyaDoloures Sat 25-May-13 16:14:54

I'm firmly in the pro-diagnosis camp, personally. In most contexts (not all blush) as a family, we're 'out and proud' about ds1's diagnoses. Am just aware that many people do live in fear of being openly 'not-normal', and if (for example) someone is already feeling on the margins, they might be more-than-usually aware of the dangers posed by 'labels'.

MareeeyaDoloures Sat 25-May-13 16:19:57

I would guess the margins of disability are probably as complex as the margins of sexual orientation. And that context would matter. My guess is that a bisexual man with a wife would be a little more relaxed about that if he was a small-business owner in a San Francisco liberal community than if working for a Republican Right politician in Texas.

MareeeyaDoloures Sat 25-May-13 16:21:03

We wouldn't be 'out' if the diagnosis felt 'wrong' though.

BeeMom Sat 25-May-13 16:45:13

The reason I don't volunteer DS's dx is that he is old enough that he should have the choice to do that (or not) on his own...

As for not sharing if it felt wrong, I agree wholeheartedly.

coff33pot Sat 25-May-13 16:52:40

oh jeez.......

Realistically, difference or disability is less important than the attitude of the individual and their "inner circle" and how much they allow the "difference" TO "disable". I think this sentence is great and totally agree with it. smile

Term "label" winds me up. My child does not go around with DS with ASD written on his clothing tags. Its just a dx and simple just like arthritis, MS, even influenza thats it. No biggie unless you make it one. You do not even have to necessarily disclose it unless you feel it would gain support and understanding at certain times.

DS has Aspergers and the odd co morbids btw. Prognosis "moderate, life long". Now.....I could have took a gamble and not got a dx and had him spending most of his childhood years misunderstood and treated as "naughty" excluded for behaviour brought on by being misunderstood, and hoped he "grew out of it" that the support I provide over the years would help and things would be different.

It may have been, who knows, but unless support is an all round team effort ie the school, clubs, family and you are batting from the same side, there poses a huge risk of total confusion possibly resulting in a delay of learning strategies that might be taught a whole lot faster otherwise.

No one can predict the future or what it holds. No one can state for sure how severe or less severe our children may be.

More importantly NO ONE CHILD is the same as the next the only one who knows that child well is the parent but even the parents dont have a magic wand to say all will be ok.

PolterGoose Sat 25-May-13 17:03:38

Absolutely coff and it is just so much easier to 'help' our children and use appropriate strategies if we know that there is a range of particular strategies and interventions which are most effective with a particular group of children who share a reasonable amount of similar characteristics.

Without categorising people who display similar patterns of 'symptoms' we cannot evaluate the effectiveness of interventions. And whatever anyone thinks about dx we all want our children to develop as best they can. Most of us choose our strategies and interventions because there is evidence that those strategies and interventions have been effective with other children who are like ours. Without the categories of diagnoses we are pissing in the wind.

zzzzz Sat 25-May-13 17:17:56

"The alternative to "fixing" the problem is to withdraw - HE, isolate and declare it "fine"."

beemom I love you posts but I'm obviously not in agreement with this. The idea that HE is somehow about giving up and hiding is misguided at best. I also hate the "fixing the problem" idea. Ds doesn't need fixing. There aren't parts of him that need chopping off. He does need educating, and his development requires more thought than the average child. He is "fine" though and I see no failure on either of our parts that he learns better and will become a better man having foregone the wonders of institutional learning.

anxious nursery sounds like it was a nightmare. My understanding is that stimming is often caused by anxiety, so the response should be compassionate anyway? I think you might find some of the techniques used/ideas on the board really helpful. I certainly do and ds has no dx (though he is severely language disordered and different ). it really makes little difference when you are looking for how to improve pencil grip, or stop nose picking. We are all at different stages of the process (that being understanding our children and what can help them). We are to a woman (with the odd man) battle scarred and world weary, so you will be challenged if you make inflammatory/derogatory posts. I like polt am often amazed at the similarities in behaviour. I also find it so helpful to hear from people with older children.

Mareeya I think you sexuality analogy is brilliant.

You all give me so much to think about. thanks

PolterGoose Sat 25-May-13 17:19:15

The irony is that, despite anxious's rebuttal of an autism dx for her child, and her extrapolating from that all sorts of nonsense about autism, she probably benefits from all the research into interventions that is based on the typology of autism.

zzzzz Sat 25-May-13 17:22:14

beemom I love your posts shock. I'm sure you're very nice but I honestly wasn't looking for our first MNSN hook up. blush grin

zzzzz Sat 25-May-13 17:31:11

It's funny you hold bring that up polt because that is one of the things that really bothers me about ds not having a diagnosis. I want to know what happened to children like him and I'd like to think parents coming on behind would like to hear what we did and what helped/hindered.

PolterGoose Sat 25-May-13 17:39:18

zzzzz grin

See, I see the anxiety in my ds emanating from his feelings that he is different, that what NT children pick up by osmosis or do instinctively requires huge amounts of effort on his part, his life is bloody hard. The sensory difficulties he experiences also add to his anxiety and they too are intrinsic to his Aspergers. So, for me, I see the anxiety as reactive, not a thing in itself. anxious seems to see the anxiety as the primary presenting issue, and her ds's difficulties stemming from that. I'd be really quite concerned about a child exhibiting anxiety as the primary 'problem' and would want to know why, because anxiety in a child isn't typical and is symptomatic of something else.

marchduck Sat 25-May-13 18:05:17

When my child was at nursery and going through assessment, the teachers and various specialists started using code words like Visual Learner and Special Interests. So they labelled him before he was labelled. The nursery also made it quite clear that DS was the one with the problem, not their rubbishy establishment. Requests like, could you get down on the floor and play with him sometimes?, or could you slow down your speech and make requests clearer?, were met with 'we don't have the resources' type response. The other parents in the nursery gave us the cold shoulder. In my experience, being different or delayed is treated as defective and pathological.

My experience is so different, and I certainly wasn't seeking out, or pushing for a diagnosis. DD's main difficulties are social communication and interaction. Her paed had suggested referral to autism assessment clinic and ed psych before she started pre-school. Her pre-school has been fantastic- she has taken part in everything, she goes on the trips, she has been invited to parties, she has a best friend. The staff have gone out of their way to support and include her. I have not picked up on any negative vibes from the other parents at all.

I don't regret "agreeing" to the diagnosis at all. It has helped, not hindered.

aliblake Sat 25-May-13 18:13:14

your son is still the same little man he was before, just now he has a diagnosis for the way he is, I think the word label can be taken two ways, you can let it bother you or ride with it and embrace it, it is something he has been diagnosed with and although he and you will learning coping strategies, he will grow and flourish.

coff33pot Sat 25-May-13 18:33:08

See this is how we as parents all look at things in such a varied way smile

When my child was at nursery and going through assessment, the teachers and various specialists started using code words like Visual Learner and Special Interests. So they labelled him before he was labelled. The nursery also made it quite clear that DS was the one with the problem, not their rubbishy establishment. Requests like, could you get down on the floor and play with him sometimes?, or could you slow down your speech and make requests clearer?, were met with 'we don't have the resources' type response. The other parents in the nursery gave us the cold shoulder. In my experience, being different or delayed is treated as defective and pathological.

Myself I would have been thrilled if teachers and specialists started noticing that my son was a visual learner etc as it would show they took time to notice. However I would have (and did) go potty if the school refused to put strategies in place to include my son. So yes the fact that they stated they dont have the resources was honest but a good nursery would have gone on to chase those resources or advised you where to go to ask for them smile

DS first school was hell and he was made to stand out due to anxiety a whole lot more. Fast forward to a school that wants to support and my son is still the same boy but because the support is there the other children are inclusive as the anxiety is hardly noticeable and if he is anxious he has the confidence now to say so, be understood and discreetly "have a job to do" to remove him from the anxious situation.

Its the team bit again isnt it.

Some of the human race do give us the cold shoulder but that is either due to ignorance or because they do not know what to say. Eventually I found with a dx the curious ones came forward and were more accepting and the ignorant ones stayed that way grin

I look at it that it is not up to the opinions of everyone else, they quite frankly do not count. What does count is the family circle, the child and his/her future and being strong enough to have broad shoulders either with or without a dx.

Some children cant cope in a school environment at all and those benefit more from HE. My son certainly relaxed and learnt more at home for a short period of HE than he did at the rubbish school.

PolterGoose Sat 25-May-13 18:53:38

Interestingly, the ICD 10 has a classification for Atypical Autism

Kleinzeit Sat 25-May-13 18:54:07

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.

Just wanted to point out that non-verbal communication is very much part of “speech and language”. I didn’t realise this myself at first. The speech and language therapist who assessed my DS knew a lot about voice tone, facial expression, eye contact, body language and physical distance etc. – and the therapists who ran the social communications skills group that he attended worked on those issues along with many others.

As for motor planning, that’s more of an occupational therapists’ issue. And an OT did join the social-skills group at times.

So it’s not all bad news!

zzzzz Sat 25-May-13 19:04:30

"Visual learner" is one of the things that I think could cause us problems. Ds had the same problems "seeing" pictures as he did/does have "hearing" words. So though he needed/needs things to be demonstrated in ways that don't rely on language, "visual" learner doesn't describe him at all.

Stereotypes really don't work on any level.

I found no evidence for the whole 'visual learner' thing.

Two things I noted though. Visuals can support and aid understanding, plus provide a menu of choices when options are too wide ranging and abstract. They can be extremely useful for managing anxiety and inclusion in this way. Does this mean the child is a visual learner though - no, they would be good for most people i.e. calendars, diaries, McDonalds menus and yo sushi.

The other thing I noted was that reliance on visuals meant that my ds never got the auditory practice he needed, which ran the risk of making him BECOME reliant on visuals. He needed clues that visuals could provide yes, but he also needed practice listening, remembering and then acting upon auditory information.

zzzzz Sat 25-May-13 19:44:31

I think using visuals does limit the language people use. It also reminds them that prompting is necessary and usually what vocab to use. The fact you have to point/refer to the visual slows down communication. This was great for ds who struggled to grasp anything from verbal communication. The visuals themselves were less useful, but the effect on the professionals using them, very helpful indeed. There are many ways to skin a cat. wink

Yes. Absolutely. I spent a year fighting against visual timetables until I realised that their implementation was actually a way or prompting the TA to tell him what was coming next and to use less words. It was really for HER.

I allowed them at that point.

zzzzz Sat 25-May-13 20:01:02

Ds had private SALT for a year, with the most incredible therapist, who taught me so much about manipulation! grin watching her with the professionals surrounding ds was educational (and entertaining). grin

PolterGoose Sat 25-May-13 20:07:53

Now my ds doesn't have any language difficulties, yet, for us, using visuals (timetables, routines, scaling charts) has had an extraordinarily positive effect. Although the effect has probably been from the process of creating the visual and whatever it is about. I've never imposed a visual timetable or whatever, they've been a way to solve a problem. So, bedtime was getting hellish. When ds was calm we sat down and agreed a routine, he wrote it out and drew pictures and I laminated it. The important part of the process was the discussion about what had to go in the visual and what order was best, the visual then became like a representation of our 'contract' if that makes sense?! We currently have his Alert speedo measuring his general physical state (sleepy/bored to just right to angry/hyper).

coff33pot Sat 25-May-13 20:09:27

timetables certainly do help the teachers/tas slow down a tad grin

It has helped DS in the sense that he does "see" a picture of what to do next. Because of the ADHD and the sensory issues to sound, auditory etc it helps him to picture what is expected but also it is usually at the same time the things are taking place in class. This has moved on to clock times now as he has a "picture" in his head iyswim now he pictures it when the TA mentions whats next or asks in advance as he has this timetable visualised in his head? Now he is working to the clock ten minutes till we do this or 12 oclock is dinner etc to help him pace out himself and last longer on task. Discussion still takes place though.

Visual and language certainly need to be worked together.

flowwithit Sat 25-May-13 20:26:03

Anxiousmotherdotnet shock
what qualifies you to make such a bold statement or is it just your opinion?

flowwithit Sat 25-May-13 20:35:13

I think that making such bold statements upsets others because it shows lack of understanding for other peoples circumstances and isn't helpful to anyone. What is right for you or your family or child is not necessarily the same for another and there are so many other factors. In my opinion there isn't a right way or a wrong way there are many variants and parents make decisions for their children with the information they are given and their personal circumstances at the time.

BeeMom Sat 25-May-13 21:07:23

zzzzz First of all, I am certain you are an exceptional woman, but the commute is just too far across the ocean, so I will have to decline the hook up offer grin

Secondly, I think I didn't speak clearly enough. I wasn't intending to say that HE is giving up, or that our children need to be fixed (clearly, I chose my words poorly). What I was trying to say is that, in order to access special services within the school, sometimes you must accept associated identifiers and descriptions (labels, if you must). Our children certainly do require educating in a very unique manner, and in some cases, there are just no school that can provide appropraite support for a child's unique needs.

What I had intended to say, but in re-reading it can see was unclear, was the alternative to addressing evident problems in social, communication and developmental areas is to withdraw, isolate and deny the existence of anything amiss. Because, simply put, if these challenges are not addressed, whether in an institutional (school) or home setting, they do become compounded over time. Like I said before, our children do need to be taught, they don't learn (particularly the nuances of social and nonverbal communication) through observation and immersion.

I apologise for the misunderstanding I caused.

zzzzz Sat 25-May-13 21:36:43

grin. Exceptional, but not perhaps in a good way!

I knew what you meant really. I have come to recognise your "voice" here, but it touched a nerve. I find people's perception of me HEing ds very hard to bear. It is rarely positive, or in any way flattering to me. It's beyond hard work, and so good for him I couldn't possibly justify schooling him at this stage (if there even was a suitable school). The result is a happy ds making startling progress, a happy family because our life is unknotting and me. I couldn't be happier with the results, but I had things I wanted to do with my life and the hours are long and thankless. To add to the joy, almost everyone I know disapproves and acts as though I am giving the others everything and hiding my beautiful boy. sad

None of which is anything to do with you. Goodness I appear to have emotional baggage!

I do think that the mixing and melding of education and medical isn't great. I would like educational differentiation to be I response to need not dx. I don't like educational establishments/teachers having so much input into dx. They are neither qualified nor bound by patient teacher confidentiality. I am concerned that records are not stored securely and access is not restricted in school.

MareeeyaDoloures Sat 25-May-13 21:50:54

zzzz, every time I read your posts I'm in awe f how much good you've done for your ds by dropping the 30-kids-in-a-room rubbish. Your decision leads me to happy daydreams of giving up all this c**p and homeschooling the 3 dc. It's my plan B, and DH himself shock has actually suggested it (twice). As has my uncle, and an ex-teacher friend.

Tbh, I may be almost disappointed if we win at tribunal and I don't have to wink.

MareeeyaDoloures Sat 25-May-13 21:53:15

You're hardly hiding him. Aren't you out and about every day with buses, shops, library etc for educational purposes?

Well I've MET him (utterly utterly gorgeous), and I hardly ever go out these days so he's definitely not hidden.

BeeMom Sat 25-May-13 22:06:50

I am not proud to admit this, but while I think an even more individualised education than Bee is getting in her current school would benefit her, I don't think I am emotionally equipped to provide it for her. I could not honestly do it.

In addition, the way the system works here, the ONLY access to PT/OT and SaLT we have here that does not require payment OOP is consultative through the schools. If I withdrew her, she would receive no therapy at all, as we cannot afford it.

We receive no respite at all, and her night nursing is sporadic at best, so the only "non-Bee" time i get to do my own work (I have a small business) is while she is at school. I provide her night cares as well as her daytime needs, and some days, as soon as her school bus pulls away, I collapse. Without the "break" that school provides, I would be in a difficult state. I am already dreading the 2 months' summer break that starts in a few weeks...

And I am ashamed to admit it...

coff33pot Sat 25-May-13 22:10:26

zzzzz you have to hide him from me because I wanted to steal him the first time I saw him grin

Some people really do talk out of what they really should only be sitting on! (directed at zzzzzs judgmental lot not SNMN lol!)

The main thing is its working for your DS and everyone else within the family. It was a good move you made and you are doing a marvelous job at it. Tell them to bog off smile

MareeeyaDoloures Sat 25-May-13 22:10:45

School as babysitter, respite, educational provision and therapy lead is nothing to be ashamed of. It's (almost) everyone's plan A.

PolterGoose Sat 25-May-13 22:11:23

I don't like educational establishments/teachers having so much input into dx

Ds's school had no input at all, it was clear they thought I was deluded and just needed to change my parenting style/provide a sibling/not indulge him etc etc.

I too have met zzzzz's ds, several times now, he even peed in my toilet, he is most certainly not hidden.

zzzzz Sat 25-May-13 22:28:59

Thank you all. I'm being wet, ignore me. blush mostly I love my life and certainly there is nothing more important I should be doing.

I know school isn't always involved in dx, but I seem to see more and more posts where school is in between child and medical professional. School decides how SALT, OT, EdPsyche are rationed. School refuse to refer. GP wants to hear from school before referring on. Schools questionnaires don't describe the child as "bad enough".

ouryve Sat 25-May-13 23:27:02

OK, I've had 24 hours out of this thread, but I shall try to catch up, since I've been addressed personally:

"Ouvyre, my personal experience of autistic behaviours is at the borderline/mainstream end."

Which is why you can not blindly accuse parents of bullying their children for seeking a diagnosis that will, ultimately, bring some sort of help. DS1 spent his first 3 years of life communicating to me that he was not happy in his own skin in every way he was capable of. When a 3 year old is screaming that all is not right with the world, you are not bullying him by finding out why. Nor was I bullying a child like DS2 stuck in a shell that didn't even allow him to walk or play for so long.

Can you see what was so hurtful, Anxiousmother?

I'm not even a sensitive soul, myself - I'm pretty thick skinned and laid back, so the fact that your throwaway comment (which I know wasn't said on the spur of the moment, because it's part of something you campaign constantly against) had me stomping around the house in one of those "someone is wrong on the internet" moods because i was really quite pissed off with it says a lot.

One of my complaints against the Autism label is the assumption that it is a neurological condition. Given the prevalence of motor planning and sensory processing difficulties I believe that autistic behaviours also have physiological roots.

Mother - eggs - suck. Motor planning relies on the responsiveness of the nervous system and on interactions between conscious and different unconscious parts of the brain. (An example is learning to knit - you have to learn the stitches using your conscious brain and its actions on your unconscious brain before it can become all unconscious and committed to muscle memory) Neurology is one of many disciplines which fall under that massive umbrella of physiology.

And I certainly wouldn't want to burden my child with a Pathology

Pathology is not just the study of how people become ill and/or die. Something pathological is rooted in physiological processes which are beyond conscious control. Here, you are expressing your prejudices and fear of words.

In fact, what many of us are upset by is your willingness to project your own feelings and insecurities on us. Maybe autism isn't a good fit for your child. Fair enough. Don't attack us because we're willing to accept that diagnosis.

I am more aware than most, having 2 boys with ASD who are like chalk and cheese, plus various members of my extended and ancestral family who fit the profile (diagnosed or otherwise), that autism is not a "label" which describes a very narrow stereotype.

Has the adage been repeated in this thread, yet? If you've met one child with autism, you've met one child with autism.

It's ouryve, btw wink

ouryve Sat 25-May-13 23:46:32

A telling quote, from this week, is our lovely SENCO in AR, this week, telling me that she feels that the school is letting DS1 down - because he is incredibly bright but has so many difficulties that staff are aware that they are unable to stretch him academically. They know exactly what he's capable of, and the EP has confirmed it, but how to get him there requires a whole level of expertise that they're not sure they have.

That is not low expectations.

There are similar not low expectations with DS2. Behind a huge brick wall of disability, there is something lurking that is pretty strong. So many of us have high expectations of him (seeing the Carly video brought tears to my eyes because there are so many similarities) but we've yet to find a way to help it out of him. For now, we can only, optimistically, provide the input which will facilitate the eventual output.

ouryve Sun 26-May-13 00:00:31

Beemom - I know I'm not equipped to home educate either of mine full time. And I'm an ex teacher. It's being an ex teacher that probably gives me that insight, though. I'm too personally involved. One reason i grasped portage with both hands for DS2 is that he was so utterly reliant on me and couldn't learn things that he would expect mum to do. He hasn't moved on that much, in that respect. He still climbs on my lap and asks me to start up a game on his leapster when he wants that reassurance.

I educate DS1 far better by not being his primary educator. He just soaks things up when it's presented subversively. Just being a really clever mum and not his primary educator, he asks a question and we bloody run with it and it's a lot of fun. As soon as it becomes an obligation and needs to be backed up with evidence for the authorities, it would crash and burn for both of us. Our relationship is a lot better when the terms are fluid.

anxiousmothernet Sun 26-May-13 07:39:25

Cansu - my fear is that an autism label exposes my child to ignorance.

Beemom - you misinterpret me. Every day I am aware that my child has difficulties. I'm saying that the autism label doesn't correctly identify what's amiss with my child, nor does it identify WHY things are difficult for him. My child does feel empathy, have ToM, isn't particularly a visual learner, loves role play and fantasy, cares little for factual accuracy, tells lies, isn't especially good with computers/maths, can learn soft skills (albeit slowly).

I'm very grateful that my child is at mainstream school, but fear that he is vulnerable to popular misconceptions about autism + he doesn't tick all the boxes + who knows how things will turn out. Perhaps as an adult he will choose a label for himself.

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'. But when you analyse visual timetables, it's actually about the adults needing to be better teachers.

Flowwithit - I've made loads of bold statements based on my opinions and anxieties.

Sometimes labels do get changed: spastic became cerebral palsy, mongloid became downs syndrome. I beleive that the autism label has too much baggage and too much misinformation around it.

Polter - I think that a lot of what we call Autism, is actually anxiety. If we call it anxiety then it becomes incumbent on the adults to do something about that. If we call it Autism then we blame the child for being 'other'.
I believe that poor motor planning is at the root of a large portion of my child's anxiety.

zzzzz Sun 26-May-13 07:56:48

This thread has given me an idea.

zzzzz Sun 26-May-13 08:12:25

Sorry posted before thinking.

The upshot is anxious that basically you think your son has ASD but will prosper better using the techniques developed for identified children with ASD, but without the "stigma" of he dx?

Because he is "at the mild end of the spectrum" you feel he is better served by being a "less able normal boy"?

I think this actually says more about your attitude to disability than any real gripe with dx. There are far worse things than can happen to you than having autism, or even having a child that has autism, or in fact CP, or DS. You seem to have very little understanding of what the term means.

As for the concept that we need good teachers that can remember what our children need, and provide it so they can learn like everyone else...well yes, that would be what 90% of the difficulty in having a child with additional needs is. hmm

FanjoForTheMammaries Sun 26-May-13 08:21:41

 "My child does feel empathy, have ToM, isn't particularly a visual learner, loves role play and fantasy, cares little for factual accuracy, tells lies, isn't especially good with computers/maths, can learn soft skills (albeit slowly). "
I say this kindly.

Maybe the reason you are so scared of the diagnosis is you don't really undrstand ASD.

Because that is mainly a list of clichéd "Rainman" style ideas.

"He isn't good ay computers or Maths".


PolterGoose Sun 26-May-13 08:23:47

Message withdrawn at poster's request.

ouryve Sun 26-May-13 08:37:47

Because he is "at the mild end of the spectrum" you feel he is better served by being a "less able normal boy"?

*I think this actually says more about your attitude to disability than any real gripe with dx. There are far worse things than can happen to you than having autism, or even having a child that has autism, or in fact CP, or DS. You seem to have very little understanding of what the term means."


I have been thinking the same.

And children are exposed to ignorance for a variety of reasons. I moved around the country a lot as a child and was exposed to ignorance about my accent. I was a gifted child and proud of it (rather arrogantly so, but others were equally arrogant about their sporting prowess, which was much more socially acceptable than scoring 95% in maths exams) and exposed to a lot of ignorance about that. And a lot of labels. I was exposed to a lot of bullying ignorance by PE teachers for my inability to do gymnastics without injuring myself. For not being able to do handstands like the other girls because my wrists were too bendy to support my weight. I was labelled as lazy and unmotivated. I didn't try hard enough. Not having a proper "label" for my hypermobility really helped me there, didn't it?hmm

Kids are exposed to ignorance if they have ginger hair. Calling it auburn or strawberry blonde doesn't change that.

I want my boys to grow up at peace with who they are and able to make the best of it. I want them to be able to work through their limitations and celebrate their strengths. I am prepared to accept that DS2 may never live independently as an adult - that is not placing limitations on him, it is being very realistic. I am also prepared to be pleasantly surprised by him. He's only 7, after all.

anxiousmothernet Sun 26-May-13 21:20:37

Polter - you have removed your post. At first I thought that you were trying to belittle me and my views by labelling me autistic!

Then I wondered whether you were joshing me that I'm so aspie I can't see the problem with DS when it's staring everyone else in the face. He does seem so utterly borderline to me that I can't understand all these teachers with their sly remarks.

So the pros of having an autism label:
1. it gave us parents a kick up the backside that he wouldn't just grow out of it
The pros of cataloguing symptoms and giving them a label:
1. Makes it easier to search for research and strategies on the internet
However, some of the best strategies we use aren't autism specific. And a lot of the Autism Strategies used at school are pants IMO.

Fanjo - my egs of ToM etc did not come from Rainman, which I haven't watched. The stuff about empathy/imagination etc comes from SBC, Tony Attwood, NAS and other leading authorities on Autism. If they don't understand ASD, who does?

The original post says: "(labelling) means help can be put in place". I feel things have come to a sorry state if a struggling child can't get help without a label. If you saw a man lying in the road next to a bicycle, would you wait for a witness to come and verify that he was knocked off his bike and not faking it, before offering help?

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.

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.

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


". 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?


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.


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.

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'.


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


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...

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.

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.

'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.

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.

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.

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.

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?

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?

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.

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

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

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

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!

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.

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

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.

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.

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.

Well said, Mareeeya.

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.

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.

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