FW: National Asperger's Society

[Guest guest]

Here's a part-answer from the NAS to my letter. SARA

National Asperger's Society

Dear Mr Middleton,

On Thursday, January the 17th, I attended a NAS Help! session

held at

the Woolwell Centre in Plymouth. The session was run by two

speakers,

and a Canadian lady named Jo, whose surname I

didn't

catch. Both were excellent speakers and they had very many

useful and

informative things to say. However, attending the session also

raised

some very serious concerns about the attitudes and aims of the

National

Autistic Society towards some of the adults and children it

claims to

represent.

My son has a diagnosis of Autistic Spectrum disorder and I was

hoping

for support from the NAS from this session. I would like to

stress that

on some generalised topics such as 'how statements work' this

support

was as available to me as anyone, but when it came to discussing

the

actual children on the spectrum, I'm afraid I felt that my child

was

excluded from your agenda. My son is at the lower end of the

spectrum.

At this session, and indeed, more generally, the NAS focuses its

attention at the other end of the spectrum. I will give you some

examples taken from the session.

In describing people on the spectrum, the following observations

were

made:

" they have a tendency to invade personal space during

conversation "

" they often monologue about special interests " " they have a

unique sense

of humour " " they don't understand sarcasm " . My son was

previously

non-verbal, having lost his language at around 17 months

following

normal, slightly slow development and has since learnt to

request things

verbally through his home education programme. None of the above

describe him or any other child at the lower end of the

spectrum. In

fact, they describe a totally different condition.

At one point Mr. outlined reasons children might fail at

school.

The reasons fell into two broad categories " sensory overload "

and " not

understanding subtleties of language/ body language " . I was

shocked that

there was simply no mention of developmental or language delay.

The lady speaker made several comments that absolutely horrified

me. I

do understand that these comments may be helpful to people with

Asperger's Syndrome or High Functioning Autism because they

would help

to raise self-esteem and self-worth. However, I would like you

to read

them with a child at the lower end of the spectrum in mind:

" we're all on the spectrum "

" Autism is a gift "

" There are large groups of people around the world fed up with

people

trying to cure them -they are proud of who they are and say

" Stop making

me normal "

" People with autism have brought amazing things into our world. "

" If you walk into the Chemistry or Physics Dept. of your local

university, I bet you'll find lots of people on the spectrum

working

there "

" Bill Gates has autism "

" Do you remember all those geeky kids you were at school with?

They

probably all had autism. "

I find the above comments offensive because autism is a very

difficult

condition to live with. One of the huge challenges faced by

parents like

myself is that it is a very poorly understood condition.

Attitudes and

comments like those above are, in no way, helpful when

describing my

son's condition. This is extremely hard to overcome when it is

backed up

by the National Autistic Society. Is it possible the National

Autistic

Society itself does not understand autism at the lower end of

the

spectrum?

I heard the lady speaker (in whom the audience place a lot of

trust)

also make two very dubious scientific statements. At one point a

mother

asked her why it was that more boys than girls had autism. She

replied

that it's because girls have better communication skills and so

are

often overlooked. She said that there are a lot of girls out

there with

autism that haven't been diagnosed. I am extremely interested in

following this up. Are there any studies or is there any

literature to

back this up? It is not an explanation that I have heard before.

I am

also interested to know if it is the official NAS explanation.

Furthermore, if these girls do not have problems with their

communication skills, then why would they be given a diagnosis

of

autism? This speaker also informed the audience that autism is a

genetic

disorder and that scientists are very close to finding the gene

that

causes autism. Is the NAS of the opinion that autism is entirely

genetic? Do you really believe that there is no environmental

cause? Do

you also believe that everyone on the spectrum has exactly the

same

condition with exactly the same cause? I am also interested in

her

comment, above, on Bill Gates. Has Bill Gates been diagnosed

with

autism? Please provide me with details of his diagnosis.

Children or adults at the lower end of the spectrum do not have

the

voice that those with Asperger's of HFA may have. Furthermore,

their

parents are often struggling to cope and do not have the time to

speak

on their behalf. They are also less able to attend meetings such

as this

one as it is harder to find babysitters or carers for children

with such

particular needs. That the NAS chooses not to represent them I

find

deplorable. I have entitled this email message 'the National

Asperger's

Society' and suggest that, if you changed your name, it would

help

parents like myself to find more appropriate help elsewhere.

I would like to know your opinion on what I should do now. Do

you want

me to remain a member of NAS? If so, I would like to know what

it is

that you are offering me and my child. If you agree that you

cater

better for people at the other end of the spectrum, then I would

like to

know whether you are prepared to change your name.

Thank you,

Sara Moroza-

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---------------------------------

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