One child in 60 'suffers from a form of autism'

[call me jaded]

Daily Mail

 

The picture they've used is 'perfick'.

 

 

ETA: I'm going to have to look up Lorna Wing as I think she had a figure of 1:60 years ago.

Edited March 23, 2009 by call me jaded

[bid]

I caught this the other day...

 

Bid

[baddad]

Oooooooohhhh... don't get me started

2 things really bother me

 

- The picture

- 'Some sort' of autism.

 

The first is self explanatory, but the second: Over the next few years I think we are going to see a huge rise in 'Well-there's-no poiint-in-pushing-for-an-ADHD-diagnosis-any-more-because- nobody-takes-it seriously-so-we'll-hold-out-for-some-sort-of-SPECTRUM-disorder-autism'.

Someone (I think it was Lucas?) mentioned the other day on the boards that there is a significant increase in numbers of people being un diagnosed - having childhood diagnosis overturned. Fairly simple maths at work there: boundaries about what constitutes ASD getting blurred and increasing misdiagnosis based on those blurred boundaries. Soon everyone will be autistic, and then they'll invent a new name for people who have more significant problems than an inclination to have temper tantrums when taken shopping.

 

Oh dear. I did get started!

[call me jaded]

Mind your blood pressure!!

 

Temper tantrum or sensory overload? DS walks into a big space and sits down. Every time.

 

Agree that a checklist of behaviours is no way to diagnose autism, but, hey, that's what we've currently got.

[chris54]

Oooooooohhhh... don't get me started

2 things really bother me

 

- The picture

- 'Some sort' of autism.

 

The first is self explanatory, but the second: Over the next few years I think we are going to see a huge rise in 'Well-there's-no poiint-in-pushing-for-an-ADHD-diagnosis-any-more-because- nobody-takes-it seriously-so-we'll-hold-out-for-some-sort-of-SPECTRUM-disorder-autism'.

Someone (I think it was Lucas?) mentioned the other day on the boards that there is a significant increase in numbers of people being un diagnosed - having childhood diagnosis overturned. Fairly simple maths at work there: boundaries about what constitutes ASD getting blurred and increasing misdiagnosis based on those blurred boundaries. Soon everyone will be autistic, and then they'll invent a new name for people who have more significant problems than an inclination to have temper tantrums when taken shopping.

 

Oh dear. I did get started!

You'll get my started in a minute.

 

Wife is going to get me a dog or a cat or maybe it is a horse. Well I wanted a pet rat. If I don't get one Ill thcream and thcream and thcream until I'm sick.(I do that anyway)

[baddad]

Temper tantrum or sensory overload?

 

that's the point: It can be either - but many parents of autistic children assume the latter and the general public assume the former. Whats that rule of thumb about an autistic child's chronological age and 'social understanding' age? Lots of parents quote that, but refuse to acknowledge the implications when it comes to their own child's behaviour and/or the ways in which they should respond to it. In a similar way, there are many parents who are ineffective in controlling their children who are quite happy to assume all sorts of home diagnosis to explain their childs behaviour. It used to be ADHD (Is he on Ritalin? What? No he doesn't need drugs or anything he's just a bit hyper), but I think 'a bit spectrummy' is gaining in popularity.

 

 

 

[lorryw]

When I first started working in school (12 years ago) autism was unheard of. One teacher actually believed it was a physical disability and asked how I coped with my sons wheelchair. Now the term autistic spectrum seems to be given to any child with a behaviour issue. I am forever hearing the phrase "of course we suspect he/she is on the autistic spectrum" in our staffroom. I get very cross because it devalues (im humble opinion) autism.

[call me jaded]

It's almost impossible to get a diagnosis in my PCT right now.

 

The disturbing findings, which are due to be made public within weeks, mean that up to 216,000 children in the UK could suffer from an autistic condition, although many have not yet been diagnosed.

 

At least there's a recognition from the researchers that 'a bit spectrum-y' may actually mean quite a lot spectrum-y. I went to a school nursery the other week to help a parent with the dreaded DLA. The nursery teacher told me that of the 26 in the class 19 had been identified since Sept as having some kind of additional need, 3 of them being statemented urgently.

 

No health visiters, no 2 1/2 year checks, a PCT in financial crisis (still), GPs still untrained and no chance of a diagnosis as the official stats say a 100% increase in autsim already. That is what parents of 3 1/2 year olds are experiencing now. I thank my lucky stars that DS is older: we're in the system before the money runs out.

[baddad]

I went to a school nursery the other week to help a parent with the dreaded DLA. The nursery teacher told me that of the 26 in the class 19 had been identified since Sept as having some kind of additional need, 3 of them being statemented urgently.

 

 

Was that a 'special' playgroup or just the usual playgroup? You see, those sort of statistics just don't sound real to me. If you're talking about a run of the mill playgroup then you have to turn that equation on its head - the 7 not identified as 'additional needs' are, by definition, the 'active but odd' ones... the problem (IMO) isn't that 19 out of 26 have additional needs, but that the bottleneck for what is perceived as 'normal' has become far too narrow. That's a social problem, not a medical one... Quoting myself (how arrogant!) above:

 

Soon everyone will be autistic, and then they'll invent a new name for people who have more significant problems than an inclination to have temper tantrums when taken shopping.

 

L&P

 

BD

 

[call me jaded]

Was that a 'special' playgroup or just the usual playgroup? You see, those sort of statistics just don't sound real to me. If you're talking about a run of the mill playgroup then you have to turn that equation on its head - the 7 not identified as 'additional needs' are, by definition, the 'active but odd' ones... the problem (IMO) isn't that 19 out of 26 have additional needs, but that the bottleneck for what is perceived as 'normal' has become far too narrow. That's a social problem, not a medical one... Quoting myself (how arrogant!) above:

 

 

 

L&P

 

BD

 

 

It was the standard intake for a primary school's nursery year. So children with SEN. I saw the class. Several of them had little speech.

 

Not a single one had been flagged up by health services. It is a borough-wide picture and the cause of a formal complaint from the Headteachers committee (can't remember what they call themselves) to the PCT.

[baddad]

It was the standard intake for a primary school's nursery year. So children with SEN. I saw the class. Several of them had little speech.

 

Well, it's either an anomally, a sign that something HUGE is going on or a case, as i've said, of a 'broken tape measure'... my guess is still the last - that if you went back 50 years you'd have a not unsimilar profile of children, just they wouldn't be having value judgements made against them based on an unrealistic model...

 

If the height of an average apple tree is ten feet, and 25 % of apple trees are smaller while 25% are taller, your 'average stick' should be 10ft long. If you make the 'average stick' 11ft long then you're going to have a much higher proportion of 'unusually small' trees - the 50% that are 10ft tall, the 25% that are small and whatever percentage of the other 25% falls below the 11ft mark...

In the land of the blind the one eyed man is king... he'll still have cr*p depth perception, though, so don't let him park the minibus!

 

L&P

 

BD

[Flibs]

I don't like the term "suffers" I am not for one minute saying folk with Autism do not suffer , as does anyone but to suggest they all "suffer" is wrong in my opinion

[smiley1590]

i don't show any 'physical' signs really of being aspergers but if look closer i am at home MH wise! it think it's a shame because i waited years to realise what i had and helped me move on everything has they advantages and disadvantages! but i think autism of any kind is 'hidden' it easy to over look yet can be seen as a throw away diagnosis like anything which sad because stops really people from getting help and support from the systems! i think autism is seen more in behaviour because people know what to look out for in their child which then means assessment and diagnosis to made i don't think made lightly though! i think more teachers,parents everyone in general becoming more aware each day and having more knowledge behind ASD's which in turn leads to a sudden increase in numbers! that's my personal opinion! i suffered not knowin and got classed negatovely behvioural when younger 'naughty' and i can't say waiting to find out the answer lied beneath has had a major impact on the way i saw life and lived life! only thanks to diagnosis i can now move on and get right help and support!

[call me jaded]

Well, it's either an anomally, a sign that something HUGE is going on or a case, as i've said, of a 'broken tape measure'... my guess is still the last - that if you went back 50 years you'd have a not unsimilar profile of children, just they wouldn't be having value judgements made against them based on an unrealistic model...

 

If the height of an average apple tree is ten feet, and 25 % of apple trees are smaller while 25% are taller, your 'average stick' should be 10ft long. If you make the 'average stick' 11ft long then you're going to have a much higher proportion of 'unusually small' trees - the 50% that are 10ft tall, the 25% that are small and whatever percentage of the other 25% falls below the 11ft mark...

In the land of the blind the one eyed man is king... he'll still have cr*p depth perception, though, so don't let him park the minibus!

 

L&P

 

BD

 

It's a broken PCT first of all. Many factors: a deprived area, English not first language in 60% of children starting school in my LA, bordering Heathrow and you can smell the aircraft fuel in the air, close cousin marriages, but one thing I don't think it is locally is a widening of diagnostic criteria - we have under-diagnosis in under-5s compared to national figures.

 

It's a massive time-bomb.

 

[ian stuart-hamilton]

I think we need to be very careful in distinguishing between what Prof Simon Baron-Cohen and his team of researchers are actually arguing and the discussions and interpretations that are being layered on the original study.

 

I personally don't find the 1 in 60 figure all that surprising.

 

 

[Daisydot]

No health visiters, no 2 1/2 year checks, a PCT in financial crisis (still), GPs still untrained and no chance of a diagnosis as the official stats say a 100% increase in autsim already. That is what parents of 3 1/2 year olds are experiencing now. I thank my lucky stars that DS is older: we're in the system before the money runs out.

 

 

Recognise this description - think I live in the same Borough, or certainly the one next door. No health visitors, no 2.5 year checks or 4.5 checks, Borough was in finacial crisis and in bottom 3 in london. Certainly plenty of and .

 

 

[bid]

I think the whole issue of the apparent increase in ASD is extremely complex and a combination of factors.

 

One angle I would offer for consideration is the change in the education system in this country at least.

 

In previous generations schools were far more structured with an emphasis on rote-learning, etc, providing the kind of environment more conducive to the HFA/AS child.

 

Again in previous generations the working world wanted different things from people, had different expectations and offered a very different working environment.

 

I think these two elements alone may well have disguised the incidence and prevalence of HFA/AS children and adults.

 

Bid

[call me jaded]

Recognise this description - think I live in the same Borough, or certainly the one next door. No health visitors, no 2.5 year checks or 4.5 checks, Borough was in finacial crisis and in bottom 3 in london. Certainly plenty of and .

 

Neighbouring boroughs, same problems.

[Kazzen161]

The issue of poor speech has been raised as a major issue for reception classes locally - put down to different ways of raising children nowadays and the fact parents don't realise how important it is to encourage their children to speak.

 

In the school I work in, more than 1 in 30 children has a diagnosed asd.

[jb1964]

Hi,

 

I'm not quite sure what's going on with these statistics, half of me believes yes this has been going on for years - even thinking back to when I was young there were children in my class that I can definitely associate with similar behaviour to my daughter - but the other half is scared about where all the 'diagnosis' thing is going.

 

I feel these days there seems to be competition even amongst how much each child has to cope with - it's a bit like when I was young I lived in a shoebox etc, and as Baddad says about 'soon everyone will be autistic' - it is scary that things seem to be taking that route.

 

Looking back even into my own childhood - you could say I was quiet, withdrawn, shy, wouldn't make eye contact, insular, etc etc etc - but I know that I'm not autistic - I look at my little one who has millions of daily similarities with her elder sister (who's ASD) from texture to food, sensitivities, can't sit still, can't concentrate, literal thinking etc etc etc - but again I know that she's not autistic.

 

Also at the risk of probably saying the wrong thing - I think the whole private diagnosis thing is even more scary - I'm not saying that it isn't needed - the service is vital to many who have massive waiting lists etc - but I've seen posts about recommending a private consultant that will be more sympathetic, what does that mean? - more willing to diagnose if you pay?

 

I find it frightening too that some diagnosis is made after an hour appt. or a video observed - there is no way any childs (or adults) whole behaviour can labelled into a box after one consultation - anyone could behave in any situation differently at any given time and that goes for NT. I think diagnosis should be a lengthy assessment process - that will probably again be the wrong thing to say but I think if it's going to be done then let's have a full assessment, over a length of time in various situations etc - after all this is something they are saying is lifelong - that isn't to say that help shouldn't be provided along that diagnosis route in areas such as SALT, OT etc.

 

It's a bit the same with ADHD - again I'm not saying that there aren't children who don't have this - but these days anyone who's a bit active/hyper is given the label - parents use it freely, teachers use it freely. My friends son went all through school with the teachers on her back about putting him on medication etc etc, even though I went on school trips where the teachers constantly shouted at him for 'naughty behaviour' when he was certainly no different from those others around him other than he got caught.

 

When my daughter was little she would go berserk if I gave her a couple of yoghurts - she'd be bouncing, constantly running into the walls, couldn't concentrate, aggressive etc - eventually we narrowed it down to certain foods which helped massively - again I'm not saying that all ADHD children can be cured by diet - I'm saying that there is definitely certain behaviour in some children that can be helped by it - whereas these days they are labelled either by parents/family/friends or teachers at the first round.

 

I have a cousin who's little boy is what most people would say is mega hyper - but then again if I drank 2 litres of coke and ate packets of Haribo's constantly I'd be pretty much the same (in fact give me a packet of smarties and I can't stop talking - which is very rare while I'm in work!!!) - and no matter how much you mention that perhaps he's sensitive to x or y - they won't even give it a go. Although once again I'm not negating from those who have AHDH - I just think the term is too freely used.

 

It is becoming very difficult for professionals to see the wood for the trees so to speak - and it does worry me where all this will end up.

 

Hope I haven't offended anyone - it's just I do believe there are some hasty diagnosis/labelling being made.

 

Take care,

Jb

 

 

 

 

 

[Enid]

I live in a village, and am a pre school teacher, we currently have 2 autisic children, out of 26 on the registrar, these 2 are what I would call "classic" cases, as in there is no doubt, but there are 3 others who are in the process of just starting the journey of CAHMS/SENCO etc, so... nearly one in 5! makes you think. Enid

[NobbyNobbs]

if you live in an area with reduced medical access then the speech problem will also be linked to undiagnosed hearing difficluties, which naturally affect speech development.

 

a lot of the foster kids have speech problems, because they dont get spoken to, they get shouted at, and aren't expected to talk and dont get an answer when they do try. these are gradually corrected throughout their school life as they are encouraged to talk and participate, without any special support. since there are far higher rates of children being taken into care in deprived areas so this sample can be transplanted into the 19/26 sample, this is also another indicator of 'jumping in' when the education system can already fix the problem over time.

 

there are endless factors other than a rise in ASDs which cause a rise in SEN for a particular social group.

 

naturally there will be a rise in adults diagnosed with ASDs as those already on the spectrum finally get acess to the diagnostic teams, but i'm not sure that a vague 'autistic condition' is good thing. ADHD is considered to be the far end of the spectrum in some areas, but if you're going to widen the band that much you might as well throw everything in there as Baddad says and start again.

Edited March 24, 2009 by NobbyNobbs

[bid]

I share the concerns of several posters:

 

-What seems to be an increasing number of adults describing themselves as having AS, when they have had no formal assessment and dx.

 

-What seems to be increasing numbers of people deciding their partners/adult family members have AS, ditto above.

 

-What seems to be increasing numbers of parents who don't accept multiple NHS assessments that conclude their child is not on the spectrum.

 

-What seems to be increasing numbers of 'fast-track' private dxs coming in the wake of NHS assessments that conclude a child is not on the spectrum.

 

I don't intend to offend, these are just my observations about the whole diagnostic arena since my son was diagnosed nearly 13 years ago, and they are trends that appear to have gathered momentum during this period.

 

Bid

Edited March 24, 2009 by bid

[call me jaded]

-What seems to be an increasing number of adults describing themselves as having AS, when they have had no formal assessment and dx.

 

-What seems to be increasing numbers of people deciding their partners/adult family members have AS, ditto above.

 

-What seems to be increasing numbers of parents who don't accept multiple NHS assessments that conclude their child is not on the spectrum.

 

None of these are part of the official statistics which show a 100% increase in my area.

 

The diagnostic process is under strain, so it's in effect 'raised the bar' so that only the most severe cases are getting attention. I can only name a couple of families that have succeeded in getting a diagnosis outside of the multi-disciplinary team. Both of them used family connections abroad. Anyone else who commissions private assessments gets a 'consistent with...' kind of diagnosis because individuals are simply not able to award a firm diagnosis just like that.

 

In my LA they had an Early Years S&L programme that reduced the numbers of children with speech difficulties from 25% of the nursery intake to 5%. That was an externally evaluated programme and was quoted in the Bercow review. We really need more of it, early, to make a difference.

[baddad]

None of these are part of the official statistics which show a 100% increase in my area. The diagnostic process is under strain, so it's in effect 'raised the bar' so that only the most severe cases are getting attention.

 

Sorry, delia- i can't understand how that works? On the one hand you are saying that there are less diagnosis being made because of strained resources, but on the other that there's a 100% increase in the numbers being diagnosed (?) Surely the two factors contradict each other? Additionally, you've said that only the mosts severe cases are actually getting diagnosis, but from my own experience (and, I think, from most of the information coming out) it's the 'HF' (sorry, i know that terms not a good one, but it is the 'official' one) end of the spectrum that is usually cited in the 'improved diagnostics' argument...

I'm not saying there isn't a genuine increase - in fact I would totally agree that there is a real increase and it's not all down to 'improved diagnostics' - but I think any real increase is being obscured by the kind of factors detailed above by bid, particularly the latter two which do effect statistics once the private dx has been 'rubber stamped' by the LA professionals who have effectively been backed into a corner...

Think about it from the local teams POV - they know the determined parent is going to be pushing them for quarterly reassessments, outside referrals, writing letters etc etc, and they know that with a private dx in the parent's hands they are eventually going to lose. Regardless of whether they hold out, or fold at the first meeting ( the option most beneficial to the rest of the people on their waiting lists), the accurracy of the private 'dx' is a moot point. Perhaps the reason for

the'consistent with...' kind of diagnosis because individuals are simply not able to award a firm diagnosis just like that.

has nothing to do with timescales or 'just like that' but because the diagnostician isn't prepared to put his mouth where the customer's money is... �600. for a 'woolly' half-hour diagnosis and then it becomes somebody elses problem. Two of those a day, and you've probably covered the rent on the exclusively addressed office. Anything after that and yer quids in. Luvvly Jubbly!

Anyway, in a nutshell: whatever the real incidence of increase it has and will continue to be obscured by the widening of the net. Until we have a sustained period where no external factors change we can't effectively measure the difference.

 

L&P

 

BD

[bid]

Just to clarify, I was only offering some of my observations from the past 13 years...I wasn't arguing that they were in anyway statistically vaild or even 'true'.

 

It may be that my observations have occured because I have lived almost exclusively in an autism/special needs 'world' as it were for the majority of my adult life, so I would see things in greater incidence than someone who lived out there in the regular world!

 

Bid

[call me jaded]

Sorry, delia- i can't understand how that works? On the one hand you are saying that there are less diagnosis being made because of strained resources, but on the other that there's a 100% increase in the numbers being diagnosed (?) Surely the two factors contradict each other? Additionally, you've said that only the mosts severe cases are actually getting diagnosis, but from my own experience (and, I think, from most of the information coming out) it's the 'HF' (sorry, i know that terms not a good one, but it is the 'official' one) end of the spectrum that is usually cited in the 'improved diagnostics' argument...

 

 

L&P

 

BD

 

 

It's my speciality: confusing peoples.

 

100% increase over the 10 years to 2004, which then ground to a halt due to the PCT having only only multi-disciplinary meeting in 12 months. We now have significant under-diagnosis in under-5s compared to national stats.

 

 

[baddad]

Ah... thanks. That makes sense now

Dunno how we overcome the postcode lottery thing, but it is a huge and worrying problem in all branches of the health service

 

L&P

 

BD

[call me jaded]

It's my speciality: confusing peoples.

 

100% increase over the 10 years to 2004, which then ground to a halt due to the PCT having only only multi-disciplinary meeting in 12 months. We now have significant under-diagnosis in under-5s compared to national stats.

 

that should be "only one multi-disciplinary..."

 

[JsMum]

Ive been rather uncomfortable and lately rather paranoid that people here dont fully believe some parents that their children have ASDs all because of a concreate in stone Its Autism, I feel that as A Single mum to a child who has been assessed three times and passed throw the are you a good enough parent, sive, that Im getting really rather rattled when people suggest diagnosing even just ADHD is Easy, it isnt, My son went three assessments for a ADHD diagnosis, each one getting stronger by the years, from ADHD to Severe ADHD with extra letters added as he went throw them, I only believe the real reason J wasnt given a NHS ASD diagnosis was because the LEA where suggesting moderate learning difficulties special school rather than spersific special schools, my son had a private assessments done and these where not one hour assessents but a period of three days, by different proffessionals, if it were not for the private diagnosis, he would of ended up in a moderate learning difficulties special school rather than a spersic special school that costs the LEA 10 times more.

 

I feel if I had of left my son to the systems of Educational, Health and Social Services I wouldnt of accessed half, or even a quater of the support J is getting now, it throw dedicated private specialist that have supported J and me throw the trauma of the services who are quick to blame me, the mother for the behaviour of my son, my son has been in foster care too, as respite because I couldnt manage him, he had severe Speech and language difficulties, extream behavoural problems, many proffessionals, could of suggested that I didnt want to spend time with him, thankfully I was fighting left, right and centre to get his needs met, and had evidence to prove I was a good mum, but there was attempts to slaight my ability, because he wasnt talking, because he was attacking, his behaviour could of soo easily of been twisted.

 

Im thankful the day a kind, sympathetic GP didnt critize my parenting the day she told me she thinks J had ADHD, I didnt know what ADHD was exactly but I was relieved in some way that it wasnt my FAULT, that there was something else causing his IMPULSIVE, behaviour, and yes later throw the years he was assessed and dx as having ADHD, over the years others have passed their concerns that he also has ASDs and these have been a lot more difficult to get recgonised.

 

Its only throw getting his needs assessed privately that I got J what he needed, and so personally I feel that sometimes the system is also against dx and not enough children are dx in my honest opinion, I feel that ASD is a lot more than the numbers suggest, do we wait for a complete concrete dx before we meet the childs needs, because if we do, then they could go with out support and not recive it when it really matters.

 

Another reason we didnt see ADHD/ASD in school as much in the 50s, 60, 70 is because quite simply there behaviour would of placed them in totally inadequate institutions, like deliquent homes, borstals, basically locked up and out of sight.

 

Im personally very hurt by a lot of replies here today.

 

JsMumxxx

 

Edited March 25, 2009 by JsMum

[baddad]

Im personally very hurt by a lot of replies here today.

 

JsMumxxx

 

That's because you are taking them personally. Nobody has suggested that that all private dx's are wrong, and nobody has made any comment whatsoever about any specific situation, so there is no reason for anyone to infer or 'take' any personal offence.

 

L&P

 

BD

[call me jaded]

JsMum - I have heard many stories like yours, unfortunately.

 

I was beginning to think BD is really female and worked for my LA as he's beginning to sound like one of the officers there who believes a diagnosis of autism is aspirational. Maybe it is for some.

 

As a parents group we have a large database of professionals who don't generally rip people off. There is one extraordinary family full of barristers, exLA education officers and psychs who do a great deal of work for free or funded through charities. Needless to say there is someone in their family who has LD. If you went to one of their famous lunches they'd tell you some outrageous tales of injustice.

[zaman]

In the run up to my son's annual review, the SENCo was telling me that she wasn't sure if she was going to be able to get SALT and Ed Psych input. Apparently there is such a shortage of them that schools have to put in a bid for their input, only only the cases that are seen to be the most in need are given time. So she was struggling to get kids seen to be statemented, let alone the follow up sessions.

[baddad]

JsMum - I have heard many stories like yours, unfortunately.

 

I was beginning to think BD is really female and worked for my LA as he's beginning to sound like one of the officers there who believes a diagnosis of autism is aspirational. Maybe it is for some.

 

As a parents group we have a large database of professionals who don't generally rip people off. There is one extraordinary family full of barristers, exLA education officers and psychs who do a great deal of work for free or funded through charities. Needless to say there is someone in their family who has LD. If you went to one of their famous lunches they'd tell you some outrageous tales of injustice.

 

 

Now J's mum - that's the kind of post you could be forgiven for taking personally!

Never for a moment having any self-doubt, though, i usually just take that kind of thing with a pinch of salt as 'ill-informed'

 

Picking up on Delia's point, though, 'we have a large database of professionals who don't generally rip people off'... whether popular or not, that could also be interpreted as the same scenario highlighted by another member:

 

Also at the risk of probably saying the wrong thing - I think the whole private diagnosis thing is even more scary - I'm not saying that it isn't needed - the service is vital to many who have massive waiting lists etc - but I've seen posts about recommending a private consultant that will be more sympathetic, what does that mean? - more willing to diagnose if you pay?

 

In essence, what Delia is saying (I believe) is that they have a database of professionals more likely to confirm a PARENT's diagnosis than other professionals are...

erm, I find that degree of organisation scary - regardless of any 'rights' or 'wrongs' of the diagnosis.

On the point she makes about

Aspirational is only one of many, many reasons why a parent (or an adult) might want to apply an inappropriate label to their child or themselves. Reassurance, guilt, fear and 'blame' would obviously top that list, but there are many others.

On the point she makes about tales of 'injustice' - it's all a matter of POV. One incident of injustice does not make every other similar case an injustice. Likewise, a solicitor/barrister is engaged to defend or prosecute and to win or lose; that neither makes the cases they win an example of justice or the cases they lose an example of 'injustice'... Putting that into perspective, imagine a scenario where someone has burgled your house, and it is known beyond reasonable doubt that they burgled your house but an arresting policement made a mistake in processing the arrest and they get of on a technicality. Chances are, you would not consider that an example of 'justice', though the burgler and his solicitor probably would. Additionally, the fact that a solicitor has an LD child doesn't make the solicitor exempt (either on the grounds of their work or on the grounds of their child's disability) exempt from being 'wrong', although it would suggest they are in a better position and better informed about the legalities involved in presenting their delusions as 'right'.

 

Believe me, I'm no mouthpiece for the LA or for services that are failing, but neither am i so determined to believe in conspiracy theories that i'll reject logic in favour of some group dynamic purely because it confirms my own beliefs.

 

Hope that clarifies things (along with my gender - male, hetro, ruggedly handsome and surprisingly modest for anyone in any doubts ), and that all accept I am not commenting on any individual child/parent/solicitor/professional or combination thereof

 

L&P

 

BD

[chris54]

I have read many people say thing like we are waiting for a diagnosis for ASD or whatever.

 

Shouldn't they be saying we are waiting to see what, if anything, is wrong with our child and how best to deal with it.

 

I have stated many times that when the final diagnosis of Autism was given for my son we were shocked as we had no concept that his symptoms would indicate this. We saw his as needing help at school and with socialize and that was it.

[bid]

Im personally very hurt by a lot of replies here today.

 

I'm really sorry you feel like that JM <'>

 

I do think that people have been careful in this thread to say that they are expressing their opinions/observations and are not intending any offence.

 

I had another thought as I was driving to work too...

 

35 odd years ago when I was a child, dyslexia was just starting to be formally recognised, and there was a corresponding surge in dxs and public discussion in the media, etc. As time has elapsed it appears that there is now a more balanced approach to the whole issue. I wonder if something similar will happen with ASD?

 

Bid

Edited March 25, 2009 by bid

[call me jaded]

Now J's mum - that's the kind of post you could be forgiven for taking personally!

Never for a moment having any self-doubt, though, i usually just take that kind of thing with a pinch of salt as 'ill-informed'

 

Picking up on Delia's point, though, 'we have a large database of professionals who don't generally rip people off'... whether popular or not, that could also be interpreted as the same scenario highlighted by another member:

 

 

 

In essence, what Delia is saying (I believe) is that they have a database of professionals more likely to confirm a PARENT's diagnosis than other professionals are...

erm, I find that degree of organisation scary - regardless of any 'rights' or 'wrongs' of the diagnosis.

On the point she makes about

Aspirational is only one of many, many reasons why a parent (or an adult) might want to apply an inappropriate label to their child or themselves. Reassurance, guilt, fear and 'blame' would obviously top that list, but there are many others.

On the point she makes about tales of 'injustice' - it's all a matter of POV. One incident of injustice does not make every other similar case an injustice. Likewise, a solicitor/barrister is engaged to defend or prosecute and to win or lose; that neither makes the cases they win an example of justice or the cases they lose an example of 'injustice'... Putting that into perspective, imagine a scenario where someone has burgled your house, and it is known beyond reasonable doubt that they burgled your house but an arresting policement made a mistake in processing the arrest and they get of on a technicality. Chances are, you would not consider that an example of 'justice', though the burgler and his solicitor probably would. Additionally, the fact that a solicitor has an LD child doesn't make the solicitor exempt (either on the grounds of their work or on the grounds of their child's disability) exempt from being 'wrong', although it would suggest they are in a better position and better informed about the legalities involved in presenting their delusions as 'right'.

 

Believe me, I'm no mouthpiece for the LA or for services that are failing, but neither am i so determined to believe in conspiracy theories that i'll reject logic in favour of some group dynamic purely because it confirms my own beliefs.

 

Hope that clarifies things (along with my gender - male, hetro, ruggedly handsome and surprisingly modest for anyone in any doubts ), and that all accept I am not commenting on any individual child/parent/solicitor/professional or combination thereof

 

L&P

 

BD

 

We have contacts that can and will work for nothing. If you take that to mean they will write out a diagnosis to order you're very much mistaken. They can and do turn down parents. Similarly we don't send them parents to waste their time. They have enough to do without that.

 

There is a case going through the dregs of SENDIST about access to extended schools activities being denied because of inflexibilities of the home-school transport system. The ruling so far is that the change of timings to allow attendance is a 'adjustment' rather than an additional service. The case is going back to decide whether the additional costs for this are a 'reasonable adjustment'.

 

That's a case being brought for free by a father on behalf of his son because he is a solicitor by profession. The decision will affect many children up and down the country one way or another. Is he deluded in trying to establish clarity in the law? I don't think so. The point is not about making someone believe you are right and they are wrong (black and white) it is about establishing which side of the fence the many shades of grey lie. Is it reasonable to expect a change in transport times so that children can attend after schools clubs? The deciding facter will undoubtedly be that it depends on how much the change will cost, not whether the parent is right to expect transport in every circumstance.

 

I've never fought for anything, just become informed and negotiated. As a parents group we aren't harridens. What we have is local knowledge - what has been provided to other parents of similar children. We did a lot of work with parents about transition earlier this year. Many, many of the parents, after a bit of negotiation, accepted what was being offered by the school and the LA: they just needed the reassurance that what was being offered was reasonable.

 

Very ocassionally we support parents to tribunal. We're right in the midle of a DLA tribunal right now because the parent didn't wait to talk to us before challenging the decision and used the IQ criteria as grounds for the appeal when there was something much more appropriate - IQs just aren't tested formally any more, so she's given herself a mammoth task now. She didn't have the knowledge to fill in the form correctly, she is not deluded about the care needs of her children, we are giving her the tools she needs to get the right decision. That includes legal representation because we realise our own limitations but are quite prepared to use the offer of free help. It would be an injustice if she didn't get the right level.

 

I do know that the LA often give families our contact details - we are in negotiation right now with the SWT about being paid for the outreach work we do - we turn down many more invitations to sit on committees and steering groups than we ever accept, we get draft policies run by us every five minutes and Scrutiny often ask to look at things with them. We work in partnership with the LA yet have a good reputation with parents for challenging them.

 

We're just perfect, really. lol Definitely not out to rob people and get off on a technicality, but then I didn't think BD could possibly mean we were. I can't tell you about the particular case of injustice we were talking about but it has been in the headlines recently.

[chris54]

There is a case going through the dregs of SENDIST about access to extended schools activities being denied because of inflexibilities of the home-school transport system. The ruling so far is that the change of timings to allow attendance is a 'adjustment' rather than an additional service. The case is going back to decide whether the additional costs for this are a 'reasonable adjustment'.

I would be interested to see the outcome of this case and how far reaching the decision is.

 

Where we use to live more that half of all secondary school children are transported to and from school by school bus. If any of them wanted to do after school activities they had to make there own way home.In our case it was a 5 mile walk, or a taxi.

 

[bid]

Um, are we going a wee bit

 

Bid

[lbj]

I have read many people say thing like we are waiting for a diagnosis for ASD or whatever.

 

Shouldn't they be saying we are waiting to see what, if anything, is wrong with our child and how best to deal with it.

 

I have stated many times that when the final diagnosis of Autism was given for my son we were shocked as we had no concept that his symptoms would indicate this. We saw his as needing help at school and with socialize and that was it.

 

No, not if the paediatrician says "I think what we're looking at is a communication disorder... on the autistic spectrum but he's young yet and it could be stemming from his language difficulties so we'll wait and see him in a while just to be sure." And you (the parent) then go away and read serious literature on ASDs and realise that yes, that does seem to pretty well fit your child then, in the intereststs of not having a blathering paragraph of explanation of what may or may not be going on with your child, you're quite entitled to say we're waiting for a diagnosis of ASD (you can throw in a "likely" perhaps to try and keep the peace.

 

Also although the professionals get these things right most of the time (they should, it's their job), they're not infallible and people don't have to always swallow unquestioningly what a particular professional has told them.

 

I agree though that the focus should be on the child and his/her needs and not a label which may or may not be forthcoming.

 

janine