Re: working hard

[Guest guest]

Personally, I don't think there will ever be a " cure " for Autism. I think

scientists can discover the cause but that is proabaly decades away. I think

early detaction and strong intervention therapies to focus on communication are

the best weapons we have for learning to cope and not compound the

problem. Websters defines " Culture " as a way of life. It is the only way of life

Katy has ever known. It is no way she would have chosen. 

 ~~~Aggy

Mother of 22 yr old Katy

Diagnosed with PDD(nos)

Grandmother to Katy's daughter

Isabella Gail

________________________________

To: Autism_in_Girls_and_Women

Sent: Sunday, June 21, 2009 9:31:18 PM

Subject: working hard

I to be of workinghard to prepare of my parts for the panel at ASA and some

questions I to be of seekign some answers too to add to what I to already be of

working on would be of helpful,

it is of only from reflection not to cause of debate or wars here okay

1) When looking at the terms of " recovery " or " cure " can those who want to share

here , share to me their own version of what this means good or bad? as just

adding others views in hope my own presentation is of fair and balanced.

2) do you feel that autism is of a culture? yes or no and share of why? Again I

to already have of my thinking but want to expand or it more and or to alter my

own views of it now...

sondra

[Guest guest]

My daughter, (age 10), was diagnosed with very mild(probable)

Aspergers 2 years ago. I finally had her evaluated after the constant

urging of the school that she needed to be on medication because they

feel she does not pay attention. When I came back with the medical

diagnosis they basically laughed at me and said she does not have

Aspergers. I did request that the school districts Autism team evaluate

her in the classroom to see it they felt she had it and they came back

with that she does not. So now what to do. I don't know if I should

bring her back in for re-evaluation. I guess I don't know where to

turn...I don't really know who to believe. And if I do get the

evaluated again...will that new diagnosis be correct. She does exibit

some of the signs of Aspergers but not all. She does exibit many of the

ADD signs. I have noticed that so many of these labels carry the same

exact symtoms...so how do you know which one it is. It does not help

that my husband thinks that there is nothing different about her, so he

does not support me trying to get her re-evaluated. He says, " They are

just going to put her on medication. " I believe in medication as a last

result also but have had many friends tell me that we should trial it.

At night she is never tired....she can go all day long full speed and at

night she just is not tired. She says that her eyes like the dark and

she can't fall asleep until she can't keep them opened any more. Her

teacher complained this year that she appears tired in class. Do some

children just require less sleep...I don't know. She is my oldest

followed by a 7 year old, 3 year old, and 6 month old. Thanks for

letting me talk. I guess I have gone from thinking she had Aspergers,

to not thinking she does not, and now I just don't know. I just want

her to be happy in life...she is always very negative about every

thing...repeats a certain word or saying that gets stuck in her head

over and over again....feels that her brain works different than the

other kids at school and that she is not smart....finds it hard to be

nice to her siblings at home....does not really have any friends out

side of school...

Kirsten

working hard

I to be of workinghard to prepare of my parts for the panel at ASA and

some questions I to be of seekign some answers too to add to what I to

already be of working on would be of helpful,

it is of only from reflection not to cause of debate or wars here okay

1) When looking at the terms of " recovery " or " cure " can those who want

to share here , share to me their own version of what this means good or

bad? as just adding others views in hope my own presentation is of fair

and balanced.

2) do you feel that autism is of a culture? yes or no and share of why?

Again I to already have of my thinking but want to expand or it more and

or to alter my own views of it now...

sondra

[Guest guest]

Dear Kirsten,

Who did the diagnosis? If it was her pediarician,you might need to go to a

autism specialist (Childrens Hospital?) or a developmental neurologist or a

psychologist who specialises in pediatric testing.

The school cannot out of hand reject a diagnosis by a qualified professional- so

your next task, in my mind, is to get one. then you will have the ammunition to

fight with the school district. Documentation is not just a good idea, its the

ONLY way to get a recalcitrant school district to provide services.

Best wishes,

Rose

________________________________

To: Autism_in_Girls_and_Women

Sent: Monday, June 22, 2009 11:43:35 AM

Subject: RE: working hard

My daughter, (age 10), was diagnosed with very mild(probable)

Aspergers 2 years ago. I finally had her evaluated after the constant

urging of the school that she needed to be on medication because they

feel she does not pay attention. When I came back with the medical

diagnosis they basically laughed at me and said she does not have

Aspergers. I did request that the school districts Autism team evaluate

her in the classroom to see it they felt she had it and they came back

with that she does not. So now what to do. I don't know if I should

bring her back in for re-evaluation. I guess I don't know where to

turn...I don't really know who to believe. And if I do get the

evaluated again...will that new diagnosis be correct. She does exibit

some of the signs of Aspergers but not all. She does exibit many of the

ADD signs. I have noticed that so many of these labels carry the same

exact symtoms...so how do you know which one it is. It does not help

that my husband thinks that there is nothing different about her, so he

does not support me trying to get her re-evaluated. He says, " They are

just going to put her on medication. " I believe in medication as a last

result also but have had many friends tell me that we should trial it.

At night she is never tired....she can go all day long full speed and at

night she just is not tired. She says that her eyes like the dark and

she can't fall asleep until she can't keep them opened any more. Her

teacher complained this year that she appears tired in class. Do some

children just require less sleep...I don't know. She is my oldest

followed by a 7 year old, 3 year old, and 6 month old. Thanks for

letting me talk. I guess I have gone from thinking she had Aspergers,

to not thinking she does not, and now I just don't know. I just want

her to be happy in life...she is always very negative about every

thing...repeats a certain word or saying that gets stuck in her head

over and over again....feels that her brain works different than the

other kids at school and that she is not smart....finds it hard to be

nice to her siblings at home....does not really have any friends out

side of school...

Kirsten

[Autism_in_Girls_ and_Women] working hard

I to be of workinghard to prepare of my parts for the panel at ASA and

some questions I to be of seekign some answers too to add to what I to

already be of working on would be of helpful,

it is of only from reflection not to cause of debate or wars here okay

1) When looking at the terms of " recovery " or " cure " can those who want

to share here , share to me their own version of what this means good or

bad? as just adding others views in hope my own presentation is of fair

and balanced.

2) do you feel that autism is of a culture? yes or no and share of why?

Again I to already have of my thinking but want to expand or it more and

or to alter my own views of it now...

sondra

[Guest guest]

I brought her to our pediatrician who said that she thought it was mild

Autism because of her speech issues.... did not understand

meanings of words(which we had NO IDEA of until she started

kindergarten). Her pediatrician said that she did not specialize in

diagnosing this and sent us to the person that does the testing and

diagnosing for our particular clinic that we go to. This person is a

nurse practitioner who is specially trained and reports to an over

seeing physician who specializes in this area.

Kirsten

Since the diagnosis I have expressed my concern to our pediatrician that

maybe Aspergers is not the correct category and she talked with the

other over seeing physician again and they went over 's records

again and they feel that that is what she has. The over seeing

physician never met with and does not know her...he is only

going by what the testing says.

[Autism_in_Girls_ and_Women] working hard

I to be of workinghard to prepare of my parts for the panel at ASA and

some questions I to be of seekign some answers too to add to what I to

already be of working on would be of helpful,

it is of only from reflection not to cause of debate or wars here okay

1) When looking at the terms of " recovery " or " cure " can those who want

to share here , share to me their own version of what this means good or

bad? as just adding others views in hope my own presentation is of fair

and balanced.

2) do you feel that autism is of a culture? yes or no and share of why?

Again I to already have of my thinking but want to expand or it more and

or to alter my own views of it now...

sondra

[Guest guest]

>

> I to be of workinghard to prepare of my parts for the panel at ASA and

some questions I to be of seekign some answers too to add to what I to

already be of working on would be of helpful,

>

> it is of only from reflection not to cause of debate or wars here okay

>

> 1) When looking at the terms of " recovery " or " cure " can those who

want to share here , share to me their own version of what this means

good or bad? as just adding others views in hope my own presentation is

of fair and balanced.

I think recovery/cure is a good thing. To me it means a body that was

dysfunctional has become functional. It means GI, immune, neurological,

etc systems are healed and working. It means one with autism who had

communication deficit is now functioning within the normal limits and

are no longer hindered by their body from speaking and understanding

verbal and nonverbal communication.

However, I feel recovery and cure are not appropriate terms to use to

encourage treatment for those with autism. To date only a minority with

autism have recovered. But a majority of those with autism can improve.

I believe focusing on recovery/cure can be emotionally devastating for

those of us who do all the right things but our children still have

autism, while focusing on improvement can be emotionally empowering.

This does not mean I do not believe recovery happens, I do believe it. I

just know to date the majority of us won't find but we still we need

encouragement/motivation to continue to provide the best possible

outcomes for our children. For me that means health, independence, and

happiness for my child.

>

> 2) do you feel that autism is of a culture? yes or no and share of

why? Again I to already have of my thinking but want to expand or it

more and or to alter my own views of it now...

Yes, I do feel there is a culture in autism. I see the culture with

several overlapping circles. The circle of those with autism, parents,

siblings, professionals, etc. Each group has a slightly different niche

and therefore a different circle but they all have significant overlaps

in one big encompassing circle called autism, and that is the culture.

It is human nature for likes to be drawn to likes.

In autism there are so many issues pertaining to protection from the

outside world. Those with autism can be targets of cruelty and not being

understood that pulls them into their culture tightly. There is also

profound understanding and acceptance that pulls those with autism close

to each other. Those of us who are affected by autism but do not have

autism -- the family, professionals, etc -- also can find incredible

comfort in our autism culture. I know I do, it is a culture I cannot

give up because it is now a part of me. Even if Allie were

" healed/recovered/lost diagnosis " tomorrow, I could not give up this

culture. But I feel spiritually called to serve it, I don't know if

others would feel the same as I do.

HTH,

Debi

>

> sondra

>

[Guest guest]

Hi Kirsten

Coming in very late to this post but your daughter sounds very similar to my

Grace, she has a diagnosis of ASD and ADHD, if it is not dark it isn't sleep

time which means at the height of our summer she sleeps about 5 hours a night as

it is not properly dark until 11.30 but light at 4 am! Winter she does fare a

little better! She is very negative at teh moment but she also has MLD so is

struggling at school we are trying to get her into a special school at the

moment as she is becoming a bigger problem at her school not behaviourally as

such but because she is so far behind everyone else, she has one to one teaching

at the moment which is cateriang for her educationally but she needs social and

emotional help as well which her school cannot really provide. 

If I were you I would go for another opinion, someone that is not aware of

previous Dx and see where that takes you, Grace was diagnosed following a number

of appointments, I guess all our giirls have good day and bad or bad and worse,

which is why it was helpful for her to be seen more than once, she has a very

spiky profile and is very complicated!

Good luck

Tony

[Autism_in_Girls_ and_Women] working hard

I to be of workinghard to prepare of my parts for the panel at ASA and

some questions I to be of seekign some answers too to add to what I to

already be of working on would be of helpful,

it is of only from reflection not to cause of debate or wars here okay

1) When looking at the terms of " recovery " or " cure " can those who want

to share here , share to me their own version of what this me

ans good or

bad? as just adding others views in hope my own presentation is of fair

and balanced.

2) do you feel that autism is of a culture? yes or no and share of why?

Again I to already have of my thinking but want to expand or it more and

or to alter my own views of it now...

sondra

[Guest guest]

My hubby was diagnosed with ADHD as a kid. But now we know that he also has

aspergers. We also botha have a autonomic nerve disease called RSD or RND. He

was too high functioning to get that diagnosis. But we all know the hallmarks

and you definitley know your kid better than they do.Sorry you have to fight so

hard right now. It is hard when no one believes you...................love  

Jenn 

Subject: RE: working hard

To: Autism_in_Girls_and_Women

Date: Monday, June 22, 2009, 11:43 AM

My daughter, (age 10), was diagnosed with very mild(probable)

Aspergers 2 years ago. I finally had her evaluated after the constant

urging of the school that she needed to be on medication because they

feel she does not pay attention. When I came back with the medical

diagnosis they basically laughed at me and said she does not have

Aspergers. I did request that the school districts Autism team evaluate

her in the classroom to see it they felt she had it and they came back

with that she does not. So now what to do. I don't know if I should

bring her back in for re-evaluation. I guess I don't know where to

turn...I don't really know who to believe. And if I do get the

evaluated again...will that new diagnosis be correct. She does exibit

some of the signs of Aspergers but not all. She does exibit many of the

ADD signs. I have noticed that so many of these labels carry the same

exact symtoms...so how do you know which one it is. It does not help

that my husband thinks that there is nothing different about her, so he

does not support me trying to get her re-evaluated. He says, " They are

just going to put her on medication. " I believe in medication as a last

result also but have had many friends tell me that we should trial it.

At night she is never tired....she can go all day long full speed and at

night she just is not tired. She says that her eyes like the dark and

she can't fall asleep until she can't keep them opened any more. Her

teacher complained this year that she appears tired in class. Do some

children just require less sleep...I don't know. She is my oldest

followed by a 7 year old, 3 year old, and 6 month old. Thanks for

letting me talk. I guess I have gone from thinking she had Aspergers,

to not thinking she does not, and now I just don't know. I just want

her to be happy in life...she is always very negative about every

thing...repeats a certain word or saying that gets stuck in her head

over and over again....feels that her brain works different than the

other kids at school and that she is not smart....finds it hard to be

nice to her siblings at home....does not really have any friends out

side of school...

Kirsten

[Autism_in_Girls_ and_Women] working hard

I to be of workinghard to prepare of my parts for the panel at ASA and

some questions I to be of seekign some answers too to add to what I to

already be of working on would be of helpful,

it is of only from reflection not to cause of debate or wars here okay

1) When looking at the terms of " recovery " or " cure " can those who want

to share here , share to me their own version of what this means good or

bad? as just adding others views in hope my own presentation is of fair

and balanced.

2) do you feel that autism is of a culture? yes or no and share of why?

Again I to already have of my thinking but want to expand or it more and

or to alter my own views of it now...

sondra

[Guest guest]

Dear Kirsten,

I  have to say that I really believe that you need to get a qualified

specialist. A nurse practitioner (overseen or not) canNOT diagnose this. The

testing should be multi day one on one and involve input from you and her

teachers (multiple forms to fill out) and and in some settings involve more than

1 specialist. Without a qualified person diagnosing her your school district

will not have to give services. Check with your local Childrens Hospital or your

local online group for autism specialists in your area. Our kiddos are too

complicated for GPs to diagnose with any degree of confidence,

Rose

________________________________

To: Autism_in_Girls_and_Women

Sent: Monday, June 22, 2009 12:40:59 PM

Subject: RE: working hard

I brought her to our pediatrician who said that she thought it was mild

Autism because of her speech issues.... did not understand

meanings of words(which we had NO IDEA of until she started

kindergarten) . Her pediatrician said that she did not specialize in

diagnosing this and sent us to the person that does the testing and

diagnosing for our particular clinic that we go to. This person is a

nurse practitioner who is specially trained and reports to an over

seeing physician who specializes in this area.

Kirsten

Since the diagnosis I have expressed my concern to our pediatrician that

maybe Aspergers is not the correct category and she talked with the

other over seeing physician again and they went over 's records

again and they feel that that is what she has. The over seeing

physician never met with and does not know her...he is only

going by what the testing says.

[Autism_in_Girls_ and_Women] working hard

I to be of workinghard to prepare of my parts for the panel at ASA and

some questions I to be of seekign some answers too to add to what I to

already be of working on would be of helpful,

it is of only from reflection not to cause of debate or wars here okay

1) When looking at the terms of " recovery " or " cure " can those who want

to share here , share to me their own version of what this means good or

bad? as just adding others views in hope my own presentation is of fair

and balanced.

2) do you feel that autism is of a culture? yes or no and share of why?

Again I to already have of my thinking but want to expand or it more and

or to alter my own views of it now...

sondra

[Guest guest]

yes they are of complex my own daughter missy soon to b eof 16 had recent

updated testing and it showed her developmental delayes scattered all over the

place. in some areas the age could not be measured. other areas her communcation

areas is more refelctive of a 6 year old and other areas 8, and 10 some areas

were of 13ish, but over all her average development is of around age of 10. her

IQ score though has gone from 73 at age of 6 to 97 at age of 16 so she has been

to make of steady progress in gains intellectually.

but to look at her untrained people will say she is of not spectrum but more

like a ADHD kid, but they have to look at her history, her testing, and such to

see of it because it can be of hidden to look at her pysically but to see of her

on paper is of the true picture of her.

sondra

[Guest guest]

Sondra 1 - Actually a difficult question to answer.  I have read past

posts from those on the spectrum and they can be offended by the words

cure or recovery.  Many would want to pick and choose which aspects they

would want to keep and which ones they would like to " cure " .  To me the

reality is that many are so far into their own world that they can not

function in the NT world and will always need some one to care for them

and support them financially.  So there seems to be a sort of moral

question as to whether you should IF you could " cure " some one who is

happy and their own individual personality.  As a parent I love my

daughter dearly.  I don't know if a " cure " would or could change her

personality completely along with the negetive aspects, but I would

certainly want my daughter to be free from the anxiety and fear that

plagues her.  I would want my daughter to be free from the half dozen

medications she is currently taking.  I want my daughter to live home

again.  I want to be able to take my daughter fun places without having

to wonder if some one will be seriously injured or if there will be any

major property damage or the police will be involved.  I want my daughter

to be able to survive on her own after I am gone.  I want to see my

daughter drive a car and have a boyfriend and friends and get married and

have children and have a job.  I guess the key words here are " I want " . 

Yes as a parent I would want a " cure " for my daughter.  The worry and

concern over what the future will hold for my daughter tears me apart

every day.  If only I could get a true perspective from my own daughter

as to what she would want, I would honor and respect her wishes.  As best

I can tell, she does want all the things that an NT world has to offer,

but is not able to achieve them at this time.  So many things that she

has missed already, she will never have the opportunity to do because she

will be that much older.  As I have said many times before, I value and

respect the insight and comments from all those on the spectrum that post

here.  I read with great interest in the hopes that I can get a better

understanding as to what my daughter may be thinking or experiencing. 2 -

I don't know if Autism could be classed as a culture as the spectrum is

so wide and the abilities and interests so diverse.  I certainly think

that like any one else they tend to seek out people that are either like

them or have similar interests. LorenDad to Lara 17 (m-hfa) Josh 18 (NT)

working hard

Date: Mon, 22 Jun 2009 01:31:18 -0000

I to be of workinghard to prepare of my parts for the panel at ASA

and some questions I to be of seekign some answers too to add to what

I to already be of working on would be of helpful,

it is of only from reflection not to cause of debate or wars here

okay

1) When looking at the terms of " recovery " or " cure " can those who

want to share here , share to me their own version of what this means

good or bad? as just adding others views in hope my own presentation

is of fair and balanced.

2) do you feel that autism is of a culture? yes or no and share of

why? Again I to already have of my thinking but want to expand or it

more and or to alter my own views of it now...

sondra

[Guest guest]

loren thanks so much for you in put to this as it is of understood and means

much as this is of coming from a father because much voice of things on cure or

recover comes from moms views and hearts, not saying a mom is of wrong to have

of her feelings or wishes but not much is of a strong voice from fathers. I to

be of know you heart to you daughter and she is of very blessed to have a dad

who loves her to the level that you do and want/wish for her.

sondra