Re: Indie letters

[Guest guest]

Great work Steph

Mark h

>

> this correspondence is still going -- Israeli autist (who compares

> himself to Einstein) and Steph Sirr who makes point that NAS should

> badger NHS to take notice of US research. I was really pleased to

see

> this because we seemed to be losing the idea of US research being

> ignored. This brings us right back to it.

>

> xx sally

>

[Guest guest]

the nas said this a while back. might be good to quote regarding

specially gifted children

Almost half of adults with autism in England live with their

parents, a National Autistic Society report says.

And just 15% of them are in full-time employment, says the

society's " Moving on Up? " report.

http://news.bbc.co.uk/2/hi/health/6897908.stm

>

> There was a letter in the Indie yesterday from a woman in her

middle 50s

> who had " just " been diagnosed with autism. She was on her second

MSc and

> had given uni lectures, mother of two " beautiful academically

gifted "

> daughters. She says autism is a valuable part of the human

condition

> and explains why she is " intuitive and creative " (rather like

Einstein)

>

> Anyone want to write and say it seems to be being over-diagnosed

using a

> definition so broad as to be meaningless? Certainly figures that

> included both her and Edith as people with ASD wouldn't be worth

much.

>

> xx sally

>

[Guest guest]

I couldn't find her letter in the online edition, does anyone have a

link? Happy to write but need to see what she wrote...

> > >

> > > There was a letter in the Indie yesterday from a woman in her

> > middle 50s

> > > who had " just " been diagnosed with autism. She was on her second

> > MSc and

> > > had given uni lectures, mother of two " beautiful academically

> > gifted "

> > > daughters. She says autism is a valuable part of the human

> > condition

> > > and explains why she is " intuitive and creative " (rather like

> > Einstein)

> > >

> > > Anyone want to write and say it seems to be being over-diagnosed

> > using a

> > > definition so broad as to be meaningless? Certainly figures that

> > > included both her and Edith as people with ASD wouldn't be worth

> > much.

> > >

> > > xx sally

> > >

> >

> >

> >

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> >

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> > Checked by AVG Free Edition.

> > Version: 7.5.503 / Virus Database: 269.16.8/1153 - Release Date:

26/11/2007 21:08

> >

>

[Guest guest]

as far as I know him Einstein was anything BUT autistic, in fact as

far removed from the spectrum as it is humanly possible.

re this stupid lady being diagnosed, just think about another

disability: BLINDNESS. There is a universe of difference between having

to wear reading glasses and having to use a guide dog!!

time we start diagnosing every person without 20/20 vision as blind,

just as every person with a hint of autistic symptoms is nowdays

(self)diagnosing as autistic.

my vision is -5 with impressive astigmatism in both eyes, no way I can

get around without glasses, time to register self as BLIND, isn't it?

maybe we should lobby to put a stop to this all and get the 'experts' to

come up with a new name for all these fashionable autists out there.

natasa

> >

> > I haven't seen this womans letter, does she explain in it what it is

> > about her that led to a dx?,

> > I would be interested to know how a woman who has her

qualifications,

> > a career, a relationship, children, and describes herself as

intuitive

> > is considered to have autism at all.

> > Vicky

> >

> >

> >

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> > Version: 7.5.503 / Virus Database: 269.16.8/1154 - Release Date:

27/11/2007 11:40

> >

>

[Guest guest]

Hi Vicky, is it that they are refused diagnosis - told not enough

symptoms, or that they simply do not get seen by anyone? shortage of

diagnosticians (is that a word?)

natasa

>

> Great post Natasa, but what about all those kids who are not getting a

dx

> who are way more obvious than this lady?

> I know in my neck of the woods it is very easy indeed to get a dx for

a

> child but parents in other area's complain they cannot get one.

> Anyhow I thought we had a condition known as Asperger Syndrome, how

come no

> one is using it anymore? Assuming she is on the spectrum then what is

it about

> 10yrs of anti depressants she enjoyed so much? What is the fun bit

about

> being accused of laziness?

> I wonder if it also fair to say those who do not consider themselves

> disabled will not be picking up DLA.

> Whatever the answers to these questions she should know she is not

doing

> the very disabled low functioning kids any favours at all with her

letter.

> I also think it's a bit cheeky for anyone to posthumously dx anyone

with

> autism, or should that be Aspergers?

> Vicky

>

[Guest guest]

among the chattering classes, it seems autism is sexy??

or i mean aspergers, never autism cause autism ALWAYS MEANS A

LEARNING DISABILITY RIGHT?

sheesh, these people.

there are some who refer to asd as a " social dyslexia " (again

probably aspergers)

if this woman knew anything about autism, and what society actually

thinks of autism she wouldn't be so quick to include herself as

being " special " .

> > >

> > > I haven't seen this womans letter, does she explain in it what

it is

> > > about her that led to a dx?,

> > > I would be interested to know how a woman who has her

> qualifications,

> > > a career, a relationship, children, and describes herself as

> intuitive

> > > is considered to have autism at all.

> > > Vicky

> > >

> > >

> > >

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

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> > >

> > > No virus found in this incoming message.

> > > Checked by AVG Free Edition.

> > > Version: 7.5.503 / Virus Database: 269.16.8/1154 - Release

Date:

> 27/11/2007 11:40

> > >

> >

>

[Guest guest]

Hello

>

> I haven't seen this womans letter, does she explain in it what it is

about her that led to a dx?

Probably years of searching to find out why she felt she didnt

understand things others did. Thats how most people in our social

groups find out

> I would be interested to know how a woman who has her

qualifications, a career, a relationship, children, and describes

herself as intuitive is

> considered to have autism at all.

She must be a HFA or an aspie. i have qualifications and a house. i

have had relationships in the past but not kids. i can be intuitive

about certain aspects of life but not so much others.

My mum is an undiagnosed aspie. She has secretarial qualifications and

3 kids. She runs her own house and has been married. She is still

autistic. Being autistic does not prevent you having a life that

involves kids, a career, qualifications and intuition.

is (person with aspergers)

> Vicky

>

[Guest guest]

Hello

>

> She explains that she suffered accusations of laziness,

insensitivity and stupidity, disappointed her family by not fulfilling

their ambitions, had hours of psychotherapy and 10 years of

anti-depressants. " as an autistic person I can be chaotic, gullible,

prone to forgetfulness, obsessive at times and easily overwhelmed by

the demands of modern society. I am also creative, artistic, inventive

and doggedly persistent. I chair my local residents association, I've

taught at university and I have organised my exhibitions and

workshops. At present I am studying for a second MSc and I am the

proud and loving mother ............etc "

>

> I think it would be hard to deny that the condition may be

> over-diagnosed. She doesn't say who diagnosed her. Maybe self

> dramatisation. It is getting to be fashionable to be like Einstein.

I dont think this is the case here. If you think shes imagining it or

faking it then thats unlikely to be the case. We make bad liars and

dont make up these sorts of stories.

>

> I think it's become meaningless. It's a spectrum. Everyone wants to

be on it at the Einstein end .

Whats wrong with wanting to be a genius and inventive?

is

>

> Sally

[Guest guest]

Hello

>

> as far as I know him Einstein was anything BUT autistic, in fact

as far removed from the spectrum as it is humanly possible.

He was obsessive but im not sure what other aspects of autism he

had/may have had.

>

>

> re this stupid lady being diagnosed,

Shes not stupid, autistic people are not stupid its one of the

criterion for being diagnosed HFA or aspie

> just think about another disability: BLINDNESS. There is a universe

of difference between having to wear reading glasses and having to use

a guide dog!!

Autism is invisible, we cannot tell if this lady has or doesnt have

autism without observing her behaviour.

>

> time we start diagnosing every person without 20/20 vision as blind,

> just as every person with a hint of autistic symptoms is nowdays

> (self)diagnosing as autistic.

Wrong and wrong again. People dont think like that, every person who

attends our social groups (whether diagnosed or not) has aspects of

autism that i can see.

>

>

> my vision is -5 with impressive astigmatism in both eyes, no way I

can get around without glasses, time to register self as BLIND, isn't it?

Dont insult the real blind people please. i am partially sighted in a

way, i have problems seeing at night time. During the day i am fine

but night time is more tricky. Partial sightedness and blindness are 2

different things.

>

>

> maybe we should lobby to put a stop to this all and get the

'experts' to come up with a new name for all these fashionable

autists out there.

You will cause more harm than good doing that, people will be unable

to get diagnosed with autism/aspergers. We are happy with the name the

way it is thanks.

is

>

> natasa

[Guest guest]

Hello

>

> I think that is a very good point. This cannot possibly fulfil the

WHO description of autism as pervasive developmental disorder. Words

must have boundaries to mean anything.

i think she does as i'm sure i have met her.

> I cannot believe she has been dx by a doctor.

She has if its who i think it is.

> Hypochondriacs of the world, autism welcomes you.

Er wrong as the behaviour will be observed over a few hours. i didnt

know what the doctor was looking for pre diagnosis. If the condition

of hyperchondianism (actually its called health anxiety now) didnt

exist then people like me wouldnt have to wait 16 years to be believed.

> This is made worse by having no physical symptoms associated with

the condition and a description which says " all children with autism

are different "

What about the motor coordination differences? or the differences on

EEG readings? or the fact that 1/2 or more crave milk and gluten when

removing it from thier diet?

>

> Certainly all these people are doing a beautiful job of

demonstrating that autism is a fashionable condition (provided you

don't " suffer " from it). Maybe we should leave the NAS to people like

this.

Nope they are demonstrating that they like being the way they are and

dont wish to be cured. The NAS is raising awareness of adult services.

We dont need dealing with by them, as they are a great help to

autistic people.

is (who doesnt think aspergers/autism is fashionable and neither

do any of her anticure friends)

> xx Sally

[Guest guest]

Hello

>

> These people are all calling themselves autistic. I think it has

become a way of claiming to be a misunderstood genius.

That could be the case in fake autism diagnoses.

> Middle-class parents may see it as a way to work the system --

remember the lady who said she

> went to NAS conferences with people whose children were in

mainstream schools without support but had ~ " problems with tact and

diplomacy " .

They could have undiagnosed dyspraxia or dyslexia as both conditions

can cause social skills deficits.

> Social dyslexia would be a good way of claiming that one's child

wasn't just badly brought up and selfish but " disabled " .

There is also Oppositional Defiance Disorder as well, they may use the

term " social dyslexia " if they think its less likely to be stigmatised

than ODD.

> What to do about it would be the thing? Ask if they poo on the floor?

Depends how autistic they are. No autistic person i have come across

poos on the floor.

is

> xx Sally

[Guest guest]

Hello

>

> Great post Natasa, but what about all those kids who are not getting

a dx who are way more obvious than this lady?

If you saw this ladies stims then you would know she was defiantly an

aspie.

> I know in my neck of the woods it is very easy indeed to get a dx

for a child but parents in other area's complain they cannot get one.

I find it upsetting that 12 years post (my) diagnosis parents still

cannot get thier kids diagnosed.

> Anyhow I thought we had a condition known as Asperger Syndrome, how

come no one is using it anymore?

Its used in my area of the UK and in the NAS Communcation magazine.

> Assuming she is on the spectrum then what is it about 10yrs of anti

depressants she enjoyed so much?

That was her point, she was fobbed off as depressed and prescribed

anti depressants. They tried that one on me too but i wont take them.

Paradoxical reactions to meds can be ASD.

> What is the fun bit about being accused of laziness?

I dont think she found that bit fun. i would find it degrading.

> I wonder if it also fair to say those who do not consider themselves

> disabled will not be picking up DLA.

Thats true i know of a few parents and aspies who refused to claim DLA.

> Whatever the answers to these questions she should know she is not

doing the very disabled low functioning kids any favours at all with

her letter.

i know of some happy low functioning kids who are not on biomed apart

from gf/cf. She is speaking for the higher functioning kids not the

lower functioning ones.

> I also think it's a bit cheeky for anyone to posthumously dx anyone

with autism, or should that be Aspergers?

Why's that? Churchill was an aspie and a great leader of the UK. He

was even honoured in stamps when he died and had a state funeral. i

think thats something to look up to.

> Vicky

is

[Guest guest]

Hello

>

> hi , I get what you are saying. But it is all a question of

degree to which one is affected, isn't it.

>

> to say that: " Being autistic does not prevent you having a life that

> > involves kids, a career, qualifications and intuition "

>

> is like saying: " being visually impaired does not prevent you

from driving a car. " - well, depends, really, doesn't it?

Nope they are 2 different things. If you compared blindness and

deafness with driving that would have made sense. Autism doesnt affect

driving a car. i know many aspies who drive a car some better than

others. Only one of them should be off the road as she drives too slow.

is

>

>

> natasa

[Guest guest]

Hello

>

> Hi is,

> Although I can't answer all your questions to the other two, I

wanted to say the following:

> I think that we all find ourselves in a difficult position when such

> very different people are given the same diagnosis - i.e. autistic

> spectrum disorder.

Yes it is a broad umbrella term. Personally i prefer Kanners autism

and Aspergers syndrome to be used.

> I think it is particularly difficult when some people are extremely

happy and proud to be whatever this condition entails for

> them whilst for others the condition means pain or suffering or

severe disability or all 3.

i am slightly different from my friends. Im sort of on the fence so to

speak. i would like help with my sensory issues (as even typing can be

too loud for me). If we wish to get biomedical treatment then yes that

should be made available.

i think my friends are worried about being forceably changed into

something else. They dont want to be forceably cured of their autism

as they dont wish their unique talents to disappear along with the cure.

> as parents we are desperate to help our children who are suffering

greatly. We find it hard to get the help they deserve

Agreed parents dont get enough help. Respite care, social workers if

they are lucky ...but nutritionally therapy? no way they cant afford that.

> and one more obstacle in our path is having people who do not have a

> disability or a condition that needs treatment being given the same

> label as our children.

i know of one friend of mine who was told he was aspie. A few years

later he was told he was ADHD. Personally i think he is both and its

hard to seperate the 2.

> Personally, I have nothing against any of these individuals and I

support them in any of their dreams/ wishes, etc but find it gets in

the way that they have the same label as my son.

Most of them have been told they are HFA or aspergers. Why does it get

in the way? As you wish your son was the same as them? Or some other

reason? If hes unhappy then i hope you can help him.

is

> SARA x

[Guest guest]

Hi is,

I'm wondering whereabouts in the country you live, as if you're

anywhere near me I would like to take you to meet my autistic son,

who is currently detained in hospital with mental health problems,

and some other young people and children on the spectrum, so that you

can see for yourself how different they are from you.

I would like to think this might give you a better understanding of

why we many of us feel that 'autism' is becoming less and less use as

a descriptive term.

Would you be so happy to be called autistic if everyone who heard it

immediately thought aah! 'someone who poos on the floor' as Sally so

succinctly put it? Because that is also part of the spectrum.

I'd be pleased to meet you, because I think people like you can help

us to inform the world of the problems encountered by those on the

other end of the spectrum.

Patience

> >

> > Great post Natasa, but what about all those kids who are not

getting

> a dx who are way more obvious than this lady?

>

> If you saw this ladies stims then you would know she was defiantly

an

> aspie.

>

> > I know in my neck of the woods it is very easy indeed to get a dx

> for a child but parents in other area's complain they cannot get

one.

>

> I find it upsetting that 12 years post (my) diagnosis parents still

> cannot get thier kids diagnosed.

>

> > Anyhow I thought we had a condition known as Asperger Syndrome,

how

> come no one is using it anymore?

>

> Its used in my area of the UK and in the NAS Communcation magazine.

>

> > Assuming she is on the spectrum then what is it about 10yrs of

anti

> depressants she enjoyed so much?

>

> That was her point, she was fobbed off as depressed and prescribed

> anti depressants. They tried that one on me too but i wont take

them.

> Paradoxical reactions to meds can be ASD.

>

> > What is the fun bit about being accused of laziness?

>

> I dont think she found that bit fun. i would find it degrading.

>

> > I wonder if it also fair to say those who do not consider

themselves

> > disabled will not be picking up DLA.

>

> Thats true i know of a few parents and aspies who refused to claim

DLA.

>

> > Whatever the answers to these questions she should know she is

not

> doing the very disabled low functioning kids any favours at all

with

> her letter.

>

> i know of some happy low functioning kids who are not on biomed

apart

> from gf/cf. She is speaking for the higher functioning kids not the

> lower functioning ones.

>

> > I also think it's a bit cheeky for anyone to posthumously dx

anyone

> with autism, or should that be Aspergers?

>

> Why's that? Churchill was an aspie and a great leader of the UK. He

> was even honoured in stamps when he died and had a state funeral. i

> think thats something to look up to.

>

> > Vicky

>

> is

>

[Guest guest]

> >

> > I haven't seen this womans letter, does she explain in it what it

is

> about her that led to a dx?

>

> Probably years of searching to find out why she felt she didnt

> understand things others did. Thats how most people in our social

> groups find out

>

> > I would be interested to know how a woman who has her

> qualifications, a career, a relationship, children, and describes

> herself as intuitive is

> > considered to have autism at all.

>

> She must be a HFA or an aspie. i have qualifications and a house. i

> have had relationships in the past but not kids. i can be intuitive

> about certain aspects of life but not so much others.

>

> My mum is an undiagnosed aspie. She has secretarial qualifications

and

> 3 kids. She runs her own house and has been married. She is still

> autistic. Being autistic does not prevent you having a life that

> involves kids, a career, qualifications and intuition.

>

> is (person with aspergers)

> > Vicky

> >

>

It breaks my heart to see that letter in print. Ok the lady must have

been through some hard times. But I think her quality of life is

100% better than alot of children on the spectrum. I bet she didnot

struggle to learn her first words or was in nappies at 4 or cries for

hours on end for no reason or is frightened of traffic. I did like

the one about poohing on the floor! (lol)I struggle day in day out to

get through the day to cope with my sons disbability, people need to

get the real picture not a rose tined view.

Sara

[Guest guest]

Re: Indie letters

I disagree that autism is a learning disability and sweeping

statements like this are so very damaging, and have been damaging to

people like my son, and particularly to those who work with him, who

believe this to be so. WRONGO, autism does not equal learning

disability, whatever that is, by the way.

i think we need a definition of learning " dis " ability.

i am trying my best to keep my comments tempered in this discussion,

but this is truly one of the myths that is chronically perpetuated

about autism. I am surprised other listmates havent jumped in here

yet about this one. the myth of a learning disability also

perpetuate the myth that my child's " behaviours " are something to do

with his " autism " , his psycho/emotional make-up, etc, and that they

do not have a physical/medical basis.

its such crap. oops, there goes the tempered argument.

but that is what it is, a myth, and its the kind of myth that makes

it easy for " society " to just brush off children like mine, and not

to think outside the box. far easier to think he has a learning

disability. self fulfilling prophesies are never going to help my

boy but they do continue to ease the " burden " , financially and

emotionally of society/governments in actually addressing the person

with an asd, and who they REALLY are, apart from their label.

In Autism-Biomedical-Europe , " atrekkie22 "

wrote:

>

> Hello

>

>

> >

> > among the chattering classes, it seems autism is sexy??

>

> Nope we dont think that.

> >

> > or i mean aspergers, never autism cause autism ALWAYS MEANS A

> > LEARNING DISABILITY RIGHT?

>

> Actually both conditions are learning disabilities. They dont

happen

> to always affect IQ levels (which are harder to measure in aspies

anyway).

> >

> > sheesh, these people.

> >

> > there are some who refer to asd as a " social dyslexia " (again

> > probably aspergers)

>

> i can understand why they think that.

> >

> > if this woman knew anything about autism, and what society

actually

> > thinks of autism she wouldn't be so quick to include herself as

> > being " special " .

>

> She knows about autism as shes on many autism friendly email lists,

> she knows what society thinks of autism. She never said she was

> special she just wishes to be accepted the way she is.

>

> is

>

[Guest guest]

I have had this same argument with a mother of a child on the

spectrum. I was trying to make the point that autistic and aspergers

are not the same thing. Both are on the autism spectrum, but here in

Canada and in the States, where the DSM-IV is used to diagnose,

asperger's and autistic disorder are two different things--for

example, if you can speak fairly well, you cannot be autistic. That

is a crucial point. Having said that though, in Canada you don't get

a diagnosis except ASD. Stupid and damaging, in my opinion.

Back to the arguement with this mom. She attacked me saying that I

was trying to take services from kids like her son, trying to saying

he wasn't " autistic " enough to matter. I think the opposite is in

fact true. My son has autistic disorder. I didn't realize how

severe his autism was until I had service providers saying that he

was " hard to work with " . That aides left for that reason! So, at

least where I live, getting help for a child who is severe is a hell

of a lot harder than getting help for a child who is less severe.

People will work with kids who have autism, as long as those kids

aren't too autistic.

Common media stories about " autistic " geniuses, many of whom are

armchair diagnosed from afar, don't help (the mom I refer to above

had no problem with this kind of practice). If autism looks like

Bill Gates, why is my kid refusing to learn to speak, refusing to

learn to use a toilet, refusing to be more engaged? If autism looks

like Einstein, or the woman who wrote the letter that started this

thread, why are moms like me making such a fuss? I believe that

many people think that kids like my son are a combination of autism

(a la Bill Gates/Einstein) and my bad parenting. And that if I just

loved my kid a bit more, and accepted him for what he was, he would

grow up to be Einstein.

So, the meaning of these words, as inappropriate as they may be to

describe the medical conditions that afflict our children, really do

matter, and they should be used carefully. But they're not. Not by

the general public, not by people on the spectrum themselves, not by

the parents of kids on the spectrum, not by the professionals who

diagnose. This is why this very same mom, after accusing me of

being both ignorant and insensitive about ASD, can then go on to

lament in a later post about her heart breaking that her " autistic "

son would talk to her while she was napping, because he couldn't read

her face to know that she was sleeping. When moms like me read that

post, I can't help but think what I would give to have my son speak,

or, for that matter, what I would give to have a nap while my son was

actually awake. I also cannot help but think who is insensitive? I

believe completely that kids with Asperger's, peanut allegies,

learning disabilities, asthma, etc, all can and SHOULD be helped by

interventions that have been proven to work. However, this mom, and

many people like her, cannot acknowledge that there are kids who are

much more severely afflicted than their own, whose path is going to

be much more difficult. These people cannot accept that by lumping

everyone together, they are doing a terrible disservice to kids who

are, in fact, the most vulnerable, and whose parents are likely the

most stressed.

I know I'm singing to the choir here. But I do, when speaking to

people who are uninformed, try to differentiate between some of the

important terms. And if someone, in a well-meaning way, tries to

tell me that Bill Gates is autistic, I explain in a kind way how he

is not, and how my hope for my son does not rest with these sorts of

so-called ASD celebrities, but in the fact that my son is healthier

and happier than he was two years ago because of the help I have

given his body, and that I will continue to help his body heal until

he is totally recovered, or I am dead.

Anita

>

> is you may be happy with the name just as it is, and fear more

harm than

> good would come of a change.

> I am not happy though, my youngest child is classic Kanners Autism,

clearly

> the woman in the paper is not.

> My oldest son is HFA and is unaware of his dx, he would be

absolutely

> desolate if he knew he had anything approaching his disabled

brothers condition.

> There is a need for lines to be drawn and if someone has Aspergers

then they

> should be dx as such, having autism as a spare label is hardly

going to help

> is it? I would have thought it would make it harder for a higher

> functioning person to get a dx.

> I would also like to know what the benefit of the dx is for someone

like the

> lady in the paper?

> Does she get some kind of service from having the dx?

> What kind of service would someone get who has no interest in being

cured,

> were that possible.

> Vicky

>

[Guest guest]

Hello

>

>

>

> Most of them have been told they are HFA or aspergers. Why does it get

> in the way? As you wish your son was the same as them? Or some other

> reason? If hes unhappy then i hope you can help him.

>

> no, this whole discussion started because of a series of letters in the

> Independent. Several people including the lady in question were opposed

> to our wish to help our children.

You have misunderstood her there. The lady is question is against the

irradication of HFAs against thier will.

> Amongst other things they said it would be like curing Einstein.

It would be in the case of aspergers and HFA.

> That is why she made people so angry.

That wasnt her intention

> Helping our children would not be like curing Einstein.

Only if they were HFA or aspergers it would.

is

> SARA

[Guest guest]

Hello

> > >

> > > I haven't seen this womans letter, does she explain in it what

it is about her that led to a dx?

> >

> > Probably years of searching to find out why she felt she didnt

> > understand things others did. Thats how most people in our social

> > groups find out

> >

> > > I would be interested to know how a woman who has her

> > qualifications, a career, a relationship, children, and describes

> > herself as intuitive is considered to have autism at all.

> >

> > She must be a HFA or an aspie. i have qualifications and a house. i

> > have had relationships in the past but not kids. i can be

intuitive about certain aspects of life but not so much others.

> >

> > My mum is an undiagnosed aspie. She has secretarial qualifications

> and 3 kids. She runs her own house and has been married. She is

still autistic. Being autistic does not prevent you having a life that

> > involves kids, a career, qualifications and intuition.

> >

> > is (person with aspergers)

> > > Vicky

> > >

> >

> It breaks my heart to see that letter in print. Ok the lady must

have been through some hard times. But I think her quality of life is

> 100% better than alot of children on the spectrum.

i would disagree there as there are more undiagnosed lost aspies like

she was than diagnosed people or auties. Severe depression for 10

years is no walk in the park.

> I bet she didnot struggle to learn her first words or was in nappies

at 4 or cries for hours on end for no reason or is frightened of traffic.

i struggled to walk, i did cry for hours on end, i had panic attacks

before sleeping, disturbed nights and got my carer up til 6am most

mornings. i am frightened of loud sirens in traffic.

> I did like the one about poohing on the floor! (lol)I struggle day

in day out to get through the day to cope with my sons disbability,

people need to get the real picture not a rose tined view.

We aspies can struggled day in day out with our aspergers. Granted i

am a lot better now but in the past i used to walk out of lessons, get

so worked up that i couldnt eat or sleep or think of anything but what

was winding me up. This is the real picture of an aspie.

is

>

> Sara

[Guest guest]

Hello

>

> Hi is,

>

> I'm wondering whereabouts in the country you live, as if you're

> anywhere near me I would like to take you to meet my autistic son,

> who is currently detained in hospital with mental health problems,

i find that saddening that this has happened to you and your son. It

almost happened to me and i think would have done if i hadnt given up

my meds and the benzoates that were making me so wild.

> and some other young people and children on the spectrum, so that

you can see for yourself how different they are from you.

i know of a parent who had to search for 6 months before she found

somewhere for he kid to live. His crime? People were worried about him

running away and called it challenging behaviour. He is now happy at

his home in Credition.

i know every person with autism/aspergers is different. i bet those

children you speak of would like to be cured or treated for their

autism? This is my point that we should have the choice whether we

wish to remain autistic or not. i had to get an injunction out against

one person whose alcoholism and aspergers was dangerous and causing

mental harm to me.

>

> I would like to think this might give you a better understanding of

> why we many of us feel that 'autism' is becoming less and less use

as a descriptive term.

Well we get a new member to our teens + club every 2 or so months.

Aspergers is still used where we live.

>

> Would you be so happy to be called autistic if everyone who heard it

> immediately thought aah! 'someone who poos on the floor' as Sally so

> succinctly put it? Because that is also part of the spectrum.

i know it is part of the spectrum. Its not part of my spectrum.

>

> I'd be pleased to meet you, because I think people like you can help

> us to inform the world of the problems encountered by those on the

> other end of the spectrum.

i live near bristol in the UK. i have exams over the next 2 months but

would consider meeting up one friday afternoon post Feb but not during

the holidays as im going away then.

>

> Patience

>

is

[Guest guest]

Hello Vicky

>

> is you may be happy with the name just as it is, and fear more

harm than good would come of a change.

Change in name is what would bother me yes. Change so my sensory

issues are reduced i would like to happen.

> I am not happy though, my youngest child is classic Kanners Autism,

clearly the woman in the paper is not.

No shes an aspie.

> My oldest son is HFA and is unaware of his dx, he would be

absolutely desolate if he knew he had anything approaching his

disabled brothers condition.

i can see why its hard for some autists to understand.

> There is a need for lines to be drawn and if someone has Aspergers

then they should be dx as such, having autism as a spare label is

hardly going to help is it?

i have heard of some children at Gay Elms school in Bristol being

diagnosed with both aspergers and autism. This was in 1996. Being told

i have a mild form of mild autism is quite a mouthful. i would accept

" related to autism " . Society has heard of autism but not so much of

Aspergers unless its the education system IME.

> I would have thought it would make it harder for a higher

functioning person to get a dx.

Sadly this is still happening across the UK

> I would also like to know what the benefit of the dx is for someone

like the lady in the paper?

She can make sense of her life, she can find out what to do to help

herself, she can understand her kids (i think they may be undiagnosed

autistics as well).

> Does she get some kind of service from having the dx?

The service she gets is inadequate. In B & nes she would get assessed

but she doesnt live there. By 2008 (april i think) social services

have to assess us under the care and community act. Unfortunately this

doesnt entitle us to help.

If you can get a support person and DLA, income support, incapacity

benefits then you can get on the housing scheme im on. Downside is

that you need around £5,000 and also to live south of Northamptonshire

as the scheme only runs in those areas. www.advanceuk.org for more

details.

> What kind of service would someone get who has no interest in being

cured, were that possible.

Depends on the area you live in, how good your assessment is, and

whether you qualify as being disabled. Basically you have to work the

system. My gran fitted the little box of " carer over 60 " so as i wasnt

given an assessment she was instead. This set the ball rolling for

home support worker and finally this place. Also suitable for those

requiring 24hr care.

i know a few aspies who dont consider themselves disabled so that

means they have to pay full fair on the train (i dont) and cant get a

bus pass (i did).

is

> Vicky

>

[Guest guest]

Hello

>

> I have had this same argument with a mother of a child on the

> spectrum. I was trying to make the point that autistic and

aspergers are not the same thing.

True they are different things.

> Both are on the autism spectrum,

Agreed

> but here in Canada and in the States, where the DSM-IV is used to

diagnose, asperger's and autistic disorder are two different

things--for example, if you can speak fairly well, you cannot be

autistic. That is a crucial point. Having said that though, in Canada

you don't get a diagnosis except ASD. Stupid and damaging, in my opinion.

i can see why as it doesnt pinpoint where on the spectrum the child is

and someone trying to help the child would need to understand thier

level of functioning to interact with them and advise the parents.

>

> Back to the arguement with this mom. She attacked me saying that I

> was trying to take services from kids like her son, trying to saying

> he wasn't " autistic " enough to matter. I think the opposite is in

> fact true. My son has autistic disorder. I didn't realize how

> severe his autism was until I had service providers saying that he

> was " hard to work with " . That aides left for that reason!

Sounds like the aides have no understanding of autism.

> So, at least where I live, getting help for a child who is severe is

a hell of a lot harder than getting help for a child who is less

severe. People will work with kids who have autism, as long as those

kids aren't too autistic.

My bad college threw me out for the reason that i was becoming a

permanent student. They just didnt wish to supply me with a support

person. The lady still patronises me by saying " we always have these

little disagreements dont we " when i went to see her. Not the

sort of thing you need before an exam.

>

> Common media stories about " autistic " geniuses, many of whom are

> armchair diagnosed from afar, don't help (the mom I refer to above

> had no problem with this kind of practice).

> If autism looks like Bill Gates, why is my kid refusing to learn to

speak, refusing to learn to use a toilet, refusing to be more engaged?

Hes not, however i know an intelligent low functioning autistic who

can use the PC to communicate. She stims and rocks a lot, she is

clearly LFA. She has learnt to speak in a different way to our

preferred communication method.

> If autism looks like Einstein,

She meant autism can be like Einstein and future geniuses can be wiped

out by biomedical interventions. She was talking about HFAs and aspies

as they appeared to be missed out in the original document.

> or the woman who wrote the letter that started this thread, why are

moms like me making such a fuss?

If your kids are unhappy then of course you wish to help them. My

friends are worried about being forced to take a cure for autism they

dont want or need.

> I believe that many people think that kids like my son are a

combination of autism (a la Bill Gates/Einstein) and my bad parenting.

And that if I just loved my kid a bit more, and accepted him for what

he was, he would grow up to be Einstein.

i find that sad that people may beleive that. i dont.

>

> So, the meaning of these words, as inappropriate as they may be to

> describe the medical conditions that afflict our children, really do

> matter, and they should be used carefully. But they're not. Not by

> the general public, not by people on the spectrum themselves, not by

> the parents of kids on the spectrum, not by the professionals who

> diagnose.

Aspies and auties are careful how we use the terms ASD, autism and

aspergers.

> This is why this very same mom, after accusing me of being both

ignorant and insensitive about ASD, can then go on to lament in a

later post about her heart breaking that her " autistic " son would talk

to her while she was napping, because he couldn't read

> her face to know that she was sleeping.

i did something similar at a train station when someone was looking

something up i kept interupting her with questions. As a result i had

to claim compensation as they didnt explain the terms and conditions

to me when i indicated 3 times that i couldnt read them.

You are not ignorant or insensitive about ASD the parent is about you

and your sons needs.

> When moms like me read that post, I can't help but think what I

would give to have my son speak, or, for that matter, what I would

give to have a nap while my son was actually awake. I also cannot

help but think who is insensitive?

> I believe completely that kids with Asperger's, peanut allegies,

> learning disabilities, asthma, etc, all can and SHOULD be helped by

> interventions that have been proven to work.

We dont wish for forced interventions please.

> However, this mom, and many people like her, cannot acknowledge that

there are kids who are much more severely afflicted than their own,

whose path is going to be much more difficult. These people cannot

accept that by lumping everyone together, they are doing a terrible

disservice to kids who are, in fact, the most vulnerable, and whose

parents are likely the most stressed.

The NAS would say that aspergers kids are more vulnerable than

autistic kids as people see them in the street dont recognise or

understand their disability. i think both sets of parents have equal

levels of stress concerning their kids.

>

> I know I'm singing to the choir here. But I do, when speaking to

> people who are uninformed, try to differentiate between some of the

> important terms. And if someone, in a well-meaning way, tries to

> tell me that Bill Gates is autistic, I explain in a kind way how he

> is not, and how my hope for my son does not rest with these sorts of

> so-called ASD celebrities, but in the fact that my son is healthier

> and happier than he was two years ago because of the help I have

> given his body, and that I will continue to help his body heal until

> he is totally recovered, or I am dead.

Bill Gates is an aspie definately. I am pleased your son is happier

and healthier than he was.

>

> Anita

is

[Guest guest]

Hello

>

> Re: Indie letters

>

>

> I disagree that autism is a learning disability and sweeping

> statements like this are so very damaging, and have been damaging to

> people like my son, and particularly to those who work with him, who

> believe this to be so. WRONGO, autism does not equal learning

> disability, whatever that is, by the way.

It is defined as " an arrested state of development " , biomendical

interventions may help people to go from learning disabled to being

only socially learning disabled.

>

> i think we need a definition of learning " dis " ability.

" An arrested state of development " they claim it includes a low IQ but

thats where i disagree with them. Dyslexia is a learning disability

that doesnt affect intelligence.

>

>

> i am trying my best to keep my comments tempered in this discussion,

> but this is truly one of the myths that is chronically perpetuated

> about autism.

It is written in the diagnostic criterion of autistic disorder and

Kanner autism.

> I am surprised other listmates havent jumped in here

> yet about this one. the myth of a learning disability also

> perpetuate the myth that my child's " behaviours " are something to do

> with his " autism " , his psycho/emotional make-up, etc, and that they

> do not have a physical/medical basis.

i never said that and didnt mean it that way. Hyperactive behaviour

for example can be caused by pain, believe me i couldnt stop pacing

and talking when i had a UTI a few months ago. This was despite the

fact i had blood in my urine at the time.

>

> its such crap. oops, there goes the tempered argument.

Swearing is going to upset me more.

>

> but that is what it is, a myth, and its the kind of myth that makes

> it easy for " society " to just brush off children like mine, and not

> to think outside the box. far easier to think he has a learning

> disability.

He does as well as other bowel, nutritional issues.

> self fulfilling prophesies are never going to help my

> boy but they do continue to ease the " burden " , financially and

> emotionally of society/governments in actually addressing the person

> with an asd, and who they REALLY are, apart from their label.

>

is

[Guest guest]

Hello

>

> Thank you for the information.

> I think it's great that there are services out there for Asperger

adults, that is as it should be, my problem though is those who say

they are dx with autism but do not consider it a disability, because

in their case they should receive nothing by their own definition.

i have found only a few people who do this. In fact the 2 people who

do this are more upset by thier aspergers than the ones who accept the

help offered to them.

> It's this attitude of autism is great, not a disability, culture,

choice etc that really angers me, because my boys have no choice,

We can have a chie to accept who we are and learn to live with it as i

have done to make the best of my life as it is. That doenst mean that

i wont stay with gf/cf, no phenol and nutritional supplements (i did a

pre dissertation on diet and autism as i wish i could specialise in

nutritional therapy for people with autism and aspergers.

> choice does not come into the equation they are disabled as defined

by every criteria out there inc DWP.

I think they prefer the social model of disability where the medical

model fails to help them.

> I also think those who genuinely have Aspergers Syndrome do need

help and services and cannot see for the life of me how all this happy

stuff helps their cause.

The lady who wrote to the independant newspaper wants services but has

trouble accessing those which can help her. if they are refusing to at

least try a service then that is a bad thing and their weakness.

> I agree Aspergers is less known to the general public and that being

the case why don't the NAS do some kind of awareness of Aspergers

Syndrome,

Yes there is the HELP! programme which i have spoken at.

> actually think that would be a great idea, mind you I might be the

only one thinking that lol.

The awareness sessions are about ASD which include aspergers as well

as autism. i dont know whether they have seperate groups for severe

autism to aspergers.

is

> Vicky

>