Re: What is Real Autism?

October 26, 2008

I don't know if that question is for me Zoe, but seeing as I believe in a difference between Kanners and HFA then I will give you my reasons.

Firstly I have two children at opposite ends of the spectrum and they are like chalk and cheese there is very little overlap, biomedically they rarely respond the same to individual supps, but my point isn't really biomedical it's educational, and the insistence of the authorities to throw everything into the one basket as though autism is a one dimensional condition and what works for one works for them all.

My children are individuals, they have their own presentations and they are not the same.

I hate getting into this battle with parents or HFA/Asperger people themselves as to who is the worse off, my higher functioning son already has the mental health problems you allude to, but his prospects are far better than his lower functioning brother, that's a fact, why that should cause problems to anyone else is a mystery to me, it's not as though there is loads of things been thrown in the direction of LFA.

We could go back and forth endlessly with hypothetical situations, yes, my oldest could end up in the criminal justice system, but my youngest could end up in an institution just as a matter of course, or die from a burst appendix being unable to communicate he is in pain.

They are both very vulnerable in different ways but definitely not the same in any way, presentation, health or education and I would like to see and end to this big autism basket they are all thrown into.

Vicky

October 26, 2008

While I agree that it is frustrating and in many ways

impossible to compare Kanner Autism and Asperger’s, it is the same stuff

that helps us recover our kids. So if I were in a community with only moms of

Aspie kids, I would be nowhere close to recovering my child, because many moms

chose to ignore the stimming / social issues, because they can. Moms of severly

autistic kids however are the most brave and relentlessly researching breed I

have found. It is their / your work, that brought my son to where he is today.

So while the results vary a lot, we need the same tools for

recovery. And that, above all, should unite us.

Christiane

October 26, 2008

Agree - far better to unite than to divide.

Does it matter what the difference is between Kanners and AS/HFA if

at the end of the day the outcomes both for both sets of poeple are

similar or the same (ie poor)?

We should be looking at the needs of the individual, not the

diagnosis imho.

My Philip is described by the 'professionals' as Aspergers. When he

is a young adult, he will be far far more likely to come into

contact with the criminal justice system or get stabbed or have

mental health problems because of the nature of his difficulties

than a young adult with Kanners/at the more 'classic' end of the

spectrum.

What is to be gained by a dx that draws a line between the two?

Perhaps you could explain your rationale - I cant see how it would

help?

Zoe

>

> While I agree that it is frustrating and in many ways impossible

to compare

> Kanner Autism and Asperger's, it is the same stuff that helps us

recover our

> kids. So if I were in a community with only moms of Aspie kids, I

would be

> nowhere close to recovering my child, because many moms chose to

ignore the

> stimming / social issues, because they can. Moms of severly

autistic kids

> however are the most brave and relentlessly researching breed I

have found.

> It is their / your work, that brought my son to where he is today.

>

> So while the results vary a lot, we need the same tools for

recovery. And

> that, above all, should unite us.

>

> Christiane

>

October 26, 2008

We just had this very conversation and I think you're spot on. My son

has very little in common with someone with aspergers other than

biomed. the same biomed applied to different people can improve

functionality in someone who is LF and take someone from LF to MF or

even to HF. In terms of other things - there is little overlap for us

but it is a reason I am so passionate about HF people telling us how

biomed makes them feel. Because sometimes I fear the autism community

thinks biomed is something terrible that is " done to " low functioning

people.

Steph x

>

> While I agree that it is frustrating and in many ways impossible to

compare

> Kanner Autism and Asperger's, it is the same stuff that helps us

recover our

> kids. So if I were in a community with only moms of Aspie kids, I

would be

> nowhere close to recovering my child, because many moms chose to

ignore the

> stimming / social issues, because they can. Moms of severly autistic

kids

> however are the most brave and relentlessly researching breed I have

found.

> It is their / your work, that brought my son to where he is today.

>

> So while the results vary a lot, we need the same tools for

recovery. And

> that, above all, should unite us.

>

> Christiane

>

October 26, 2008

I actually don't see pointing out the differences between Aspergers

and Autistic (as in the DSM-IV definition of Autistic Syndrome) as

being divisive. When we're talking about biomed, the difference

don't matter for the most part, although the study from France did

show that the Aspie kids didn't have elevated porphyrins--it was a

very small sample though and probably doesn't mean much IMO.

The differences when you're talking biomed between kids with asthma

and my kid aren't that big either. Or ADHD.

But I do sometimes find it frustrating when people with very high

functioning kids refuse to see the difference between my kid and

their kid. I remember trying to talk about this on another list. A

woman was complaining bitterly that her HF son would come and talk to

her while she was taking naps because he didn't recognize/acknowledge

that she was asleep. My response to that really is not for public

consumption but runs something along the lines of " Taking naps?!

Talking to me?! Either one sounds like a * & ^ & $ & ^*^ & ^%= miracle. "

Her refusal to acknowledge that my son's quality of life was far

poorer than her son's (at the time ds was having seizures, was still

in diapers, couldn't speak or communicate at all really, self

injured, etc) was very frustrating. I asked her if she would like

people to differentiate between someone like Bill Gates (who may or

may not be on the spectrum) and her son, but she ignored the

question.

I feel I stand very united with lots of parents whose kids have

medical issues: allergies, learning disabilities, Asperger's, etc,

but I think under certain circumstances it is important to

acknowledge the differences just as under certain circumstances any

differences there may be are insignificant.

I think of cancer. I believe it all comes from the same places.

But there are differences in kinds of cancer. If I had to choose

between skin cancer and the cancers that have very swiftly and

painfully killed some of my students, I know which one I would

choose. Yes, skin cancer is also bad and requires treatment and

should never be ignored, but there is a different quality of life

issue in general coming into play here.

So, I hope I don't sound divisive. I don't spend all the time I do

trying to promote biomed in order to divisive. But, when it comes to

things like how much help needs to be offered to a parent, let's say,

or how much understanding a sibling might need, the differences

between high functioning (as a general and sometimes not terribly

useful term) and low functioning can sometimes be important.

Anita

> >

> > While I agree that it is frustrating and in many ways impossible

> to compare

> > Kanner Autism and Asperger's, it is the same stuff that helps us

> recover our

> > kids. So if I were in a community with only moms of Aspie kids, I

> would be

> > nowhere close to recovering my child, because many moms chose to

> ignore the

> > stimming / social issues, because they can. Moms of severly

> autistic kids

> > however are the most brave and relentlessly researching breed I

> have found.

> > It is their / your work, that brought my son to where he is today.

> >

> > So while the results vary a lot, we need the same tools for

> recovery. And

> > that, above all, should unite us.

> >

> > Christiane

> >

>

October 26, 2008

I think that cancer has lots of different causes -- asbestos, sunshine,

virus etc -- the proliferation of cells is the common factor. But the

trigger is very variable.

I agree with the other points

Sally

Anita wrote:

>

> I actually don't see pointing out the differences between Aspergers

> and Autistic (as in the DSM-IV definition of Autistic Syndrome) as

> being divisive. When we're talking about biomed, the difference

> don't matter for the most part, although the study from France did

> show that the Aspie kids didn't have elevated porphyrins--it was a

> very small sample though and probably doesn't mean much IMO.

>

> The differences when you're talking biomed between kids with asthma

> and my kid aren't that big either. Or ADHD.

>

> But I do sometimes find it frustrating when people with very high

> functioning kids refuse to see the difference between my kid and

> their kid. I remember trying to talk about this on another list. A

> woman was complaining bitterly that her HF son would come and talk to

> her while she was taking naps because he didn't recognize/acknowledge

> that she was asleep. My response to that really is not for public

> consumption but runs something along the lines of " Taking naps?!

> Talking to me?! Either one sounds like a * & ^ & $ & ^*^ & ^%= miracle. "

>

> Her refusal to acknowledge that my son's quality of life was far

> poorer than her son's (at the time ds was having seizures, was still

> in diapers, couldn't speak or communicate at all really, self

> injured, etc) was very frustrating. I asked her if she would like

> people to differentiate between someone like Bill Gates (who may or

> may not be on the spectrum) and her son, but she ignored the

> question.

>

> I feel I stand very united with lots of parents whose kids have

> medical issues: allergies, learning disabilities, Asperger's, etc,

> but I think under certain circumstances it is important to

> acknowledge the differences just as under certain circumstances any

> differences there may be are insignificant.

>

> I think of cancer. I believe it all comes from the same places.

> But there are differences in kinds of cancer. If I had to choose

> between skin cancer and the cancers that have very swiftly and

> painfully killed some of my students, I know which one I would

> choose. Yes, skin cancer is also bad and requires treatment and

> should never be ignored, but there is a different quality of life

> issue in general coming into play here.

>

> So, I hope I don't sound divisive. I don't spend all the time I do

> trying to promote biomed in order to divisive. But, when it comes to

> things like how much help needs to be offered to a parent, let's say,

> or how much understanding a sibling might need, the differences

> between high functioning (as a general and sometimes not terribly

> useful term) and low functioning can sometimes be important.

>

> Anita

>

> > >

> > > While I agree that it is frustrating and in many ways impossible

> > to compare

> > > Kanner Autism and Asperger's, it is the same stuff that helps us

> > recover our

> > > kids. So if I were in a community with only moms of Aspie kids, I

> > would be

> > > nowhere close to recovering my child, because many moms chose to

> > ignore the

> > > stimming / social issues, because they can. Moms of severly

> > autistic kids

> > > however are the most brave and relentlessly researching breed I

> > have found.

> > > It is their / your work, that brought my son to where he is today.

> > >

> > > So while the results vary a lot, we need the same tools for

> > recovery. And

> > > that, above all, should unite us.

> > >

> > > Christiane

> > >

> >

>

> ------------------------------------------------------------------------

>

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09:27

>

October 26, 2008

It depends really if it's a " real " basket ie if there is a spectrum with

loads of completely different people on it. Or if there are lots of

physiologically different causes needed different treatments. Research

seems to often show that some ASD people respond very strongly to

something (like B6) some don't respond at all. Research shows that they

have brain inflammation. A different piece of research shows no brain

inflammation. Lots of disparate conditions being bundled together would

explain some of this.

Sally

MaddiganV@... wrote:

>

> I don't know if that question is for me Zoe, but seeing as I believe

> in a difference between Kanners and HFA then I will give you my reasons.

> Firstly I have two children at opposite ends of the spectrum and they

> are like chalk and cheese there is very little overlap, biomedically

> they rarely respond the same to individual supps, but my point isn't

> really biomedical it's educational, and the insistence of the

> authorities to throw everything into the one basket as though autism

> is a one dimensional condition and what works for one works for them all.

> My children are individuals, they have their own presentations and

> they are not the same.

> I hate getting into this battle with parents or HFA/Asperger people

> themselves as to who is the worse off, my higher functioning son

> already has the mental health problems you allude to, but his

> prospects are far better than his lower functioning brother, that's a

> fact, why that should cause problems to anyone else is a mystery to

> me, it's not as though there is loads of things been thrown in the

> direction of LFA.

> We could go back and forth endlessly with hypothetical situations,

> yes, my oldest could end up in the criminal justice system, but my

> youngest could end up in an institution just as a matter of course, or

> die from a burst appendix being unable to communicate he is in pain.

> They are both very vulnerable in different ways but definitely not the

> same in any way, presentation, health or education and I would like to

> see and end to this big autism basket they are all thrown into.

> Vicky

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG - http://www.avg.com

> Version: 8.0.175 / Virus Database: 270.8.3/1747 - Release Date: 26/10/2008

09:27

>

October 26, 2008

I think the difference is that I would prefer it if we (society and

service providers)looked at the needs of each individual rather than

the label (or the 'degree of severity' of the label).

Also pointing out the differences between AS/HFA and Kanners isnt as

straightforward in my view - again it depends on the individual,

because they arent all the same in the same way that no two

individuals with classic autism are the same.

For example - who is to say that the needs of a young adult with HFA

who is self-harming and has mental health problems are less severe

than a more classic young adult who isnt speaking and is self-

injuring?

So, whilst it might not be divisive, it certainly doesnt unite and I

still cant see how it helps - but am happy to be persuaded

Zoe

> > >

> > > While I agree that it is frustrating and in many ways

impossible

> > to compare

> > > Kanner Autism and Asperger's, it is the same stuff that helps

us

> > recover our

> > > kids. So if I were in a community with only moms of Aspie

kids, I

> > would be

> > > nowhere close to recovering my child, because many moms chose

to

> > ignore the

> > > stimming / social issues, because they can. Moms of severly

> > autistic kids

> > > however are the most brave and relentlessly researching breed

I

> > have found.

> > > It is their / your work, that brought my son to where he is

today.

> > >

> > > So while the results vary a lot, we need the same tools for

> > recovery. And

> > > that, above all, should unite us.

> > >

> > > Christiane

> > >

> >

>

October 26, 2008

We are not really in disagreement here - we are both saying that

different children with autism have different needs.

My point is just about whether it is helpful for a distinction in

diagnosis to come into this.

I dont see myself as getting into an argument with you.....I would

hope we are just having a productive discussion.

I agree with you about the 'big autism basket' - I would like to see

an end to that too. We are just talking about going about it in

different ways - you see a distinction in diagnosis as being the

answer and I see a needs-centred appraoch as being the answer.

On the main issue we agree

Zoe

>

> I don't know if that question is for me Zoe, but seeing as I

believe in a

> difference between Kanners and HFA then I will give you my reasons.

> Firstly I have two children at opposite ends of the spectrum and

they are

> like chalk and cheese there is very little overlap, biomedically

they rarely

> respond the same to individual supps, but my point isn't really

biomedical it's

> educational, and the insistence of the authorities to throw

everything into

> the one basket as though autism is a one dimensional condition

and what works

> for one works for them all.

> My children are individuals, they have their own presentations and

they are

> not the same.

> I hate getting into this battle with parents or HFA/Asperger

people

> themselves as to who is the worse off, my higher functioning son

already has the

> mental health problems you allude to, but his prospects are far

better than his

> lower functioning brother, that's a fact, why that should cause

problems to

> anyone else is a mystery to me, it's not as though there is loads

of things been

> thrown in the direction of LFA.

> We could go back and forth endlessly with hypothetical situations,

yes, my

> oldest could end up in the criminal justice system, but my

youngest could end

> up in an institution just as a matter of course, or die from a

burst appendix

> being unable to communicate he is in pain.

> They are both very vulnerable in different ways but definitely not

the same

> in any way, presentation, health or education and I would like to

see and end

> to this big autism basket they are all thrown into.

> Vicky

>

October 26, 2008

Why would you prefer it if society didn't look at the label for severity?

I don't understand why anyone would not want another more severe child labelled as what they are.

Do you think LFA children or adults get more funding? If they do then it certainly isn't spent on anything useful. was in a school where he was level 4 for funding[very high] his money went towards all the expensive equipment needed for more physically disabled children, he himself didn't get a scrap extra.

I agree with you that even within certain categories the children are not all the same, but they will have the same degree of autism. Like I said before there is a huge difference in my 2 children to the point that I have often felt as though I were being dramatic calling autistic in the first place, no one who met my children would think they had the same condition.

I for one would certainly say the needs of a young man with HFA who is suffering mental health problems are less severe than an LFA, non verbal and self harming.

Firstly the HFA person can be reached, they definitely understand what is being said and can cooperate fully in any treatment, they can tell whoever needs to know exactly what they are experiencing, they can also refuse treatment.

LFA are far more difficult to reach, there is no certainty they have understood what has been said and are often non co-operative, they rarely able to tell what they are experiencing [this is the hardest thing for me personally] they cannot refuse treatment, simply they are far more vulnerable.

It never ceases to amaze me though that people think there is no point in different labels for very low functioning, non verbal, self harming, pooh smearing and eating, children with high functioning, talking, reading, writing, behaving, toilet trained, children.

I wonder how many would agree though if I exercised my right to have in mainstream sitting next to their child, bet they would spot the difference in a nanno second.

Vicky

October 27, 2008

Bbrowne, 's label has never brought him tons of interventions either, but that doesn't mean he is the same as a HFA child, well only in that neither get enough help.

I am responding to Zoe's point about HFA mental health issues being more or less severe than LFA and my opinion having an HFA child with just those issues is that they are less severe.

We often see the debate rage over NAS and exactly who they are representing, the general consensus is the more able Aspergers who in a lot of cases can speak up and express their opinion, I'm not against that as my oldest is HFA but the NAS is a good example of those who can talk get heard.

I am both my childrens advocate but it is loads easier being 's because he will come out and say it exactly as it is, with I am patronised and told it is only my perspective, problems are only at home, blah, blah, therefore he is far more vulnerable than his brother as his own voice is never heard.

I do not want Asperger people speaking as a general voice for autism because they are not, they are one type of autism in the same way that partially sighted people to varying degrees have something in common with the completely blind.

DWP sees the difference because there is one and it should be recognized.

I could argue that being provided for as autistic has in fact meant emphasis being put on things that mean absolutely nothing to him because he isn't LFA, so it doesn't benefit him anymore than .

From a parent point of view or carer, living with LFA is also far more stressful, we are severely limited in where we can go as a family, nerves are often at shredding point, sudden screams for no obvious reason, blind rages, self injury, grunting, gross motor tics, all on top of arguing with the authorites. I just find the whole debate about different labels for different presentations interesting in that I personally cannot see why higher functioning people think there shouldn't be a difference when one so obviously exists.

Vicky

October 27, 2008

Yes, but as you just said, label or no label, help does not arrive

that is tailored or individualised. They just throw money at our kids

without understanding.

I dont like the labels, cause they wanted my boy to have 3 labels,

autistic, severe learning disabled and hyperactive (possible adhd).

I now wish I hadnt even acepted the ASD label, or even bothered to go

and get him diagnosed, though I suppose in retrospect, i wanted

someone else to tell me what was going on with my 2 year old boy (i

was a first time mom and didnt know any better).

3 years after diagnosis, I am on my own home schooling, no help from

any school OT, SLT, etc. Nothing. I do, however get DLA but probably

could have got that without a dx.

what I am saying is, for us, what labels they wanted to give him at

2, will not necessarily apply for his whole life.

I think the point of biomedical interventions is in a lot of ways

to " defy " the labels out there. Paed says your kid has no IQ, etc,

will be forever " disabled " . We here, think differently. We have

parents here on this list who have recovered their children.

to reiterate though, label never helped my boy, but the label did

hinder - when it was official he was " autistic " , the judgements,

beliefs and attitudes set in, and for many of those people who

developed those attitudes, they will forever think that way about my

boy.

There is no " autism " , it changes so much. If they would write into

the dx that autism changes constantly, can go from " severe to HFA to

recovered, well that would be a different story.

I should add, that my two friends who just saw my boy recently

confided in me that 18 months ago, they did not think he was going to

ever " make it " , for whatever that means. My boy has transformed, i

suppose it was his time, divine intervention, who knows. But labels

in my opinion are not useful.

I want to move to a new country and start afresh with my boy, with no

label. If we do move, i will never get him re-diagnosed.

>

> Why would you prefer it if society didn't look at the label for

severity?

> I don't understand why anyone would not want another more severe

child

> labelled as what they are.

> Do you think LFA children or adults get more funding? If they do

then it

> certainly isn't spent on anything useful. was in a school

where he was

> level 4 for funding[very high] his money went towards all the

expensive

> equipment needed for more physically disabled children, he himself

didn't get a scrap

> extra.

> I agree with you that even within certain categories the children

are not

> all the same, but they will have the same degree of autism. Like I

said before

> there is a huge difference in my 2 children to the point that I

have often

> felt as though I were being dramatic calling autistic in

the first

> place, no one who met my children would think they had the same

condition.

> I for one would certainly say the needs of a young man with HFA who

is

> suffering mental health problems are less severe than an LFA, non

verbal and self

> harming.

> Firstly the HFA person can be reached, they definitely understand

what is

> being said and can cooperate fully in any treatment, they can tell

whoever needs

> to know exactly what they are experiencing, they can also refuse

treatment.

> LFA are far more difficult to reach, there is no certainty they

have

> understood what has been said and are often non co-operative, they

rarely able to

> tell what they are experiencing [this is the hardest thing for me

personally]

> they cannot refuse treatment, simply they are far more vulnerable.

> It never ceases to amaze me though that people think there is no

point in

> different labels for very low functioning, non verbal, self

harming, pooh

> smearing and eating, children with high functioning, talking,

reading, writing,

> behaving, toilet trained, children.

> I wonder how many would agree though if I exercised my right to

have in

> mainstream sitting next to their child, bet they would spot the

difference in

> a nanno second.

> Vicky

>

October 27, 2008

I am very grateful for the label. I say this because my friend has a

little girl with undiagnosed developmental delay. Both she and I think

it is mercury toxicity but not exactly autism. She has fought so hard to

get the support of her husband and family and even educators because

they are in complete denial and will not accept that the child even has

a problem. The child's problem is pretty obvious to me but, as she looks

normal and is a very attractive little girl, some people cannot see it.

I wish the label brought proper treatment with it, both medical and

educational/ psychological which it doesn't in this country but at least

it makes it slightly easier to tell other people that your child does

have a problem which is the starting point for help. I suppose I see it

as labelling the problem and not the child - the same way we label

chicken pox or a broken leg.

Sara

bbrowne123 wrote:

>

> Yes, but as you just said, label or no label, help does not arrive

> that is tailored or individualised. They just throw money at our kids

> without understanding.

>

> I dont like the labels, cause they wanted my boy to have 3 labels,

> autistic, severe learning disabled and hyperactive (possible adhd).

>

> I now wish I hadnt even acepted the ASD label, or even bothered to go

> and get him diagnosed, though I suppose in retrospect, i wanted

> someone else to tell me what was going on with my 2 year old boy (i

> was a first time mom and didnt know any better).

>

> 3 years after diagnosis, I am on my own home schooling, no help from

> any school OT, SLT, etc. Nothing. I do, however get DLA but probably

> could have got that without a dx.

>

> what I am saying is, for us, what labels they wanted to give him at

> 2, will not necessarily apply for his whole life.

>

> I think the point of biomedical interventions is in a lot of ways

> to " defy " the labels out there. Paed says your kid has no IQ, etc,

> will be forever " disabled " . We here, think differently. We have

> parents here on this list who have recovered their children.

>

> to reiterate though, label never helped my boy, but the label did

> hinder - when it was official he was " autistic " , the judgements,

> beliefs and attitudes set in, and for many of those people who

> developed those attitudes, they will forever think that way about my

> boy.

>

> There is no " autism " , it changes so much. If they would write into

> the dx that autism changes constantly, can go from " severe to HFA to

> recovered, well that would be a different story.

>

> I should add, that my two friends who just saw my boy recently

> confided in me that 18 months ago, they did not think he was going to

> ever " make it " , for whatever that means. My boy has transformed, i

> suppose it was his time, divine intervention, who knows. But labels

> in my opinion are not useful.

>

> I want to move to a new country and start afresh with my boy, with no

> label. If we do move, i will never get him re-diagnosed.

>

> >

> > Why would you prefer it if society didn't look at the label for

> severity?

> > I don't understand why anyone would not want another more severe

> child

> > labelled as what they are.

> > Do you think LFA children or adults get more funding? If they do

> then it

> > certainly isn't spent on anything useful. was in a school

> where he was

> > level 4 for funding[very high] his money went towards all the

> expensive

> > equipment needed for more physically disabled children, he himself

> didn't get a scrap

> > extra.

> > I agree with you that even within certain categories the children

> are not

> > all the same, but they will have the same degree of autism. Like I

> said before

> > there is a huge difference in my 2 children to the point that I

> have often

> > felt as though I were being dramatic calling autistic in

> the first

> > place, no one who met my children would think they had the same

> condition.

> > I for one would certainly say the needs of a young man with HFA who

> is

> > suffering mental health problems are less severe than an LFA, non

> verbal and self

> > harming.

> > Firstly the HFA person can be reached, they definitely understand

> what is

> > being said and can cooperate fully in any treatment, they can tell

> whoever needs

> > to know exactly what they are experiencing, they can also refuse

> treatment.

> > LFA are far more difficult to reach, there is no certainty they

> have

> > understood what has been said and are often non co-operative, they

> rarely able to

> > tell what they are experiencing [this is the hardest thing for me

> personally]

> > they cannot refuse treatment, simply they are far more vulnerable.

> > It never ceases to amaze me though that people think there is no

> point in

> > different labels for very low functioning, non verbal, self

> harming, pooh

> > smearing and eating, children with high functioning, talking,

> reading, writing,

> > behaving, toilet trained, children.

> > I wonder how many would agree though if I exercised my right to

> have in

> > mainstream sitting next to their child, bet they would spot the

> difference in

> > a nanno second.

> > Vicky

> >

>

October 27, 2008

Hmmm, yes i see your point, i dont others to speak for my boy either.

I suppose the status quo serves some individuals nicely especially

perahps those in the 'nd' crowd. I dont know.

All i know is that i can easily get 2 or 3 more labels for my boy

for the asking, (should i send him to school and have an e d psych

review him) These labels will not help him and will hinder him

greatly.

i have to say, it so so nice being out of the system, (home edding)

Yes, i do it all myself, with no help, but i never really expected

anyone would help my boy but me anyway, as soon as i realised there

are no " experts " , that in fact only my boy is the expert, the one

with the " label " .

My life's work to see that he can use his voice himself one day and

if he wants to, to add all the labels, adjectives, descriptive nouns

he wants to the idiots out there who simply havent got a clue.

>

> Bbrowne, 's label has never brought him tons of interventions

either,

> but that doesn't mean he is the same as a HFA child, well only in

that neither

> get enough help.

> I am responding to Zoe's point about HFA mental health issues being

more or

> less severe than LFA and my opinion having an HFA child with just

those issues

> is that they are less severe.

> We often see the debate rage over NAS and exactly who they are

representing,

> the general consensus is the more able Aspergers who in a lot of

cases can

> speak up and express their opinion, I'm not against that as my

oldest is HFA

> but the NAS is a good example of those who can talk get heard.

> I am both my childrens advocate but it is loads easier being

's

> because he will come out and say it exactly as it is, with I

am patronised

> and told it is only my perspective, problems are only at home,

blah, blah,

> therefore he is far more vulnerable than his brother as his own

voice is never

> heard.

> I do not want Asperger people speaking as a general voice for

autism

> because they are not, they are one type of autism in the same way

that partially

> sighted people to varying degrees have something in common with the

completely

> blind.

> DWP sees the difference because there is one and it should be

recognized.

> I could argue that being provided for as autistic has in

fact meant

> emphasis being put on things that mean absolutely nothing to him

because he

> isn't LFA, so it doesn't benefit him anymore than .

> From a parent point of view or carer, living with LFA is also far

more

> stressful, we are severely limited in where we can go as a family,

nerves are

> often at shredding point, sudden screams for no obvious reason,

blind rages, self

> injury, grunting, gross motor tics, all on top of arguing with the

> authorites. I just find the whole debate about different labels

for different

> presentations interesting in that I personally cannot see why

higher functioning

> people think there shouldn't be a difference when one so obviously

exists.

> Vicky

>

October 28, 2008

But it gives some indication, if I were to have both my boys autism with no hint at severity then they would get even worse provision than they do now.

There also has to be a start point, something parents can use, how is saying autism more useful in providing than saying severe, moderate or high functioning.

How are we to get to the needs without any difference in the dx?

I'm just not seeing how 2 children with opposite ends of severity and therefore functioning can be classed as the same, how will that bring better provision? I actually think it can only bring less to all.

Vicky

October 28, 2008

But it gives some indication, if I were to have both my boys autism with no hint at severity then they would get even worse provision than they do now.

There also has to be a start point, something parents can use, how is saying autism more useful in providing than saying severe, moderate or high functioning.

How are we to get to the needs without any difference in the dx?

I'm just not seeing how 2 children with opposite ends of severity and therefore functioning can be classed as the same, how will that bring better provision? I actually think it can only bring less to all.

Vicky

October 28, 2008

Well firstly my kids will have long white beards before any of that is ever taken into consideration, but maybe for kids in the future, something the NAS would want probably.

As for OCD, we have been down that road and higher functioning children do get assessed for OCD, if was just looked at as having autism as you suggest he would not have been seen, we have been told this.

On specific testing he has been found to be more affected than first thought and is now going to access the LD service, but he would just be treated as a co morbid if we had started from the stand point of him being "autistic".

Then there is the general usage of "autism" it's not realistic for parents to just refer to their children as that alone, they are higher functioning, moderate or severe, ofcourse many have Islands of ability, that isn't the discussion though, the discussion was what is real autism.

When was assessed at Nottingham they dx him as having profound autism, why would I not want them to tell me that?

Why would I want to take the little comfort we have that is at least a more able autistic and decide to label him the same as ?

I actually always believe child first and condition second, never thought any different and am certainly not in the flag waving different is cool camp, I do believe there is a normal child in there and depending on how severely affected they are by autism the normal child can get through.

I blame autism for both my childrens problems and their difficulties in all things are in direct correlation to the severity of their autism, that doesn't mean higher functioning children or adults don't have significant problems, compared to normal they are very significant.

As for schools I don't like any of them and we have been through several, I don't think the training is anywhere near as comprehensive as it needs to be, I think classroom assistants are for the most part educating my children, using the word educating very loosely here.

I would even go further and say if my children were normal I would work 10 jobs to send them to independent schools, it's just my opinion but I think the entire education system is sub standard and SEN is at the bottom of the pile.

Vicky

October 28, 2008