Re: Newbie

April 24, 2009

emily sorry forgot to welcome of you here. it is of nice to have of more here as

adults on the spectrum to add prespective. it is of a good list.

sondra

June 15, 2009

maria welcome I to be of sondra adult female with autism dx and did not get of

correctly dx until 2001 but had lived under many many misdx labels since age of

13.

I to live to the state of Ohio and have of 4 childrens all officially dx with

Aspergers syndrome. Aimee is of 21, Isaiah is of 20, Mike isof 18 and missy soon

to be of 16/ Aimee is of the mom to delaney and the soon to be of new grand

baby.

i to have of a dog named of Libby, a cat named of Sassy Pooh and two rabbits

named of grumpy girl and Mr. and the youngest sons friends got of him 3 pet rats

i to be of fearful of them. their tails scare of me and they move much much fast

and that fears of me too because they to me are of too fast and unpredictible.

I to have of a grand baby named of Delaney she isof age 3 now, and a new grand

baby due in October that might get of named Tessa Lynne, but the name is of not

set yet for her.

I to be of had a meeting today that was of much hard for me and caused of me

much anxiety and stress. It was of with the local board of MRDD and a state

level MRDD head, and my psychologist and a parent advocate and her husband who

is of an attorney. they were advocating for me to the board of MRDD my case for

need of services and to be of to get of services and supports. tehy went over

much of the past mental health records of me which was of hard and my therapist

interpreted all of them to the team. he shared if was of truely of the past dx

of schizophrenia then after 8 years of not being of on any antipsychotic

medicines wouldnot my presentation be overly clear of being delusional and

hearing voices and acting of bizzarre, he shared the reason they were of not

seeing that is of because never ever was of schizophrenic to begin with and then

took of all of the comments the past professionals reported of me and showed how

what they were of seeing was of really autism , such as lack of eye contact,

severe language issues, flat affect, major issues to social, no emotional facial

expressions, and the list can be of to go an and on. I to be of happy that he as

a professional was of able to interpret all of this to them. He also did of

other testing on me and it clealry showed of my autism levels being of much into

a autism not aspergers areas of functioning.

MRDD wants of me to have of an ADOS done to do some developmental testing of me

as well. but the good things was of having the state level MRDD head there

because she can over ride anythings the local level does in my case. I to be of

have been advocating for self to this head person before even knowing of her

role in MRDD at all.

anyways the day has been of too hard for me and so now home to my office sensory

room watching the yearling, I to love of old classic black and white films. they

calm of me.

I too work of local and national boards off an on in the life of me when of able

too, but in the last 5- or so years my health has been of much not well. i to

have of autoimmune diseases and have of significant nerve and muscle pains. I to

get of sick much easily. I to be of do my best though to stay of active to many

lists as it is of my only social life and outlet I to feel have any success in.

sondra williams

June 15, 2009

I to be of forgot to share this is of a good list and is of one of my favorite

places to connect to people in, also Debi and here are of like genus to

biomedical thinkings and such. they are of the ones my brain goes to for health

realted or female sorts of questions as life is of too hard and not have a clue

to much words when given to me verbally and so even though the words are of

visual here for me still not get of the biomedical or health things too much so

tend to keep asking the same sorts of questions over and over and even when I to

finally get of it often cant transfer to follow through with it/ I to play with

words and tell of i to be of will move to her areas to live near her or

with her but really cant move to that far away.

I to ran away once a few years back and drive and drive of self to mobile

alabama? that was of scary enough. much o say it was of brave to run away like

that but would not suggest of that to anyones as it was of very scary too. but

did learn could drive far away and find the way back to the home of me because

have of a good sense of a map in my head and navigational skills. Even though

often stress and fear of getting lost LOL.

sondra

June 16, 2009

Welcome to the board !

My daughter (now 15) was diagnosed at 11yo w/Asperger's.

Pat

Subject: Newbie

To: Autism_in_Girls_and_Women

Date: Monday, June 15, 2009, 2:40 PM

Hi,

My name is and I have a 10 year old daughter, Lydia, with an undiagnosed

underlying " condition " but has been recently diagnosed with autism as one of the

pieces to her complex puzzle. Lydia started have seizures when she was 4 weeks

old, was seizure free when she was 18 months old, but has always been delayed in

her overall development. She can walk and run, but is severely delayed in her

speech, self-help/daily living skills, etc. She is very social and will engage

with others, which is why I think it took us a little longer to get a diagnosis.

I've always thought that she didn't fall into the " typical " autism criteria, but

it's kind of funny once you have a diagnosis of some sort how many things start

to stand out and how she seems to fit more and more on the spectrum. I am just

happy to have something finally to help me understand her better. On the other

hand, I don't want to pigeon-hole her, I want to still expect out of her what

she can do,

which, right now, doesn't seem like a whole lot. I've been heavily involved

with family advocacy on the local and state level for the past 9 years, but

stepped down a year ago so that I could focus on my other children more (she's

the youngest of 6). It's been a great decision for all of us. But I feel kind of

like I'm starting over, going through a little grief cycle, etc. I would love to

connect with someone that has experienced a " late " diagnosis and/or whose

daughter may be quite delayed as well. There's a lot more information I can

share, of course, but I won't bombard you just yet.

I'm excited ... I think ... to be a part of this group. ;o)

June 16, 2009

Hello ,

My name is Dianna, My daughter Annie is now 18 and HFA. She has graduated

high school this year and we are starting a new chapter in her life. She

was diagnosed when she was 3 and it has been quite a journey for us.

As with your daughter, Annie was speech delayed but has worked her way

through a lot of that. She can hold a pretty good conversation now but the

days of echolia have certainly not been forgotten.

The grief cycle is agonizing. Lots of us have been there. Only advice I

would give there is to keep at it and wait it out. It will pass.

This is a fantastic group. You will gain lots of good information from the

several autistic member here as well. It seems to me that you can just ask

and you will be informed. Someone here will try and respond to you. It's

great, no subject seems to be tabu here. If you have an honest question,

you will get an honest answer.

Welcome,

Dianna

Daughter is 18 HFA

-- Newbie

Hi,

My name is and I have a 10 year old daughter, Lydia, with an

undiagnosed underlying " condition " but has been recently diagnosed with

autism as one of the pieces to her complex puzzle. Lydia started have

seizures when she was 4 weeks old, was seizure free when she was 18 months

old, but has always been delayed in her overall development. She can walk

and run, but is severely delayed in her speech, self-help/daily living

skills, etc. She is very social and will engage with others, which is why I

think it took us a little longer to get a diagnosis. I've always thought

that she didn't fall into the " typical " autism criteria, but it's kind of

funny once you have a diagnosis of some sort how many things start to stand

out and how she seems to fit more and more on the spectrum. I am just happy

to have something finally to help me understand her better. On the other

hand, I don't want to pigeon-hole her, I want to still expect out of her

what she can do! , which, right now, doesn't seem like a whole lot. I've

been heavily involved with family advocacy on the local and state level for

the past 9 years, but stepped down a year ago so that I could focus on my

other children more (she's the youngest of 6). It's been a great decision

for all of us. But I feel kind of like I'm starting over, going through a

little grief cycle, etc. I would love to connect with someone that has

experienced a " late " diagnosis and/or whose daughter may be quite delayed as

well. There's a lot more information I can share, of course, but I won't

bombard you just yet.

I'm excited ... I think ... to be a part of this group. ;o)

June 16, 2009

Welcome , You will find people on this list a good support community

for you and Lydia.

I have an 11 year old daughter named kezia. She has down syndrome. At six

she had a severe regression and lost nearly all of her hard earned skills.

At nearly eight the dx of autism was confirmed. Even though I wanted to

have my suspisions confirmed so that I could get supports in place for her.

It was emotionally devastating to have a dx of autism confirmed. So I can

appreciate the grief you feel. But this grief is only a measure of our deep

love. I totally resonate with your experience of starting over. Our

children are not starting over. They are the same precious beloved little

girls but yes , indeed we start over. We need to learn and watch the puzzle

pieces begin to fit and there is so much to learn.. We are the ones who

must change and adapt and there is great loss involved.

Without trying to put on rose colored glass, , it is good that you

have this dx. You will meet her with new eyes and many on this list will

give you deep insight and normalize the journey. We befriend one another

and there is support,caring and knowledge here for us.

Kezia is also an affectionate and social little girl. But shows other

strong evidence of autism. This stereotyping continues to be an issue.

Often professional question the dx and they immediately jump to the

conclusion that she does not appear to have autism when she is sitting

cuddling with me. there is much more to be seen beneath the surface.

So often I was told that Kezia is only " retarded " (hate that word) as

they see down syndrome and dismiss the possibility of a dual dx. But

knowing it is autism has made all the difference in helping her and she is

beginning to get a few of her prior abilities back now that we know more

about how to help her. Her language is coming along very well now again.

She is beginning to play with toys again after six years and,in the past two

weeks she is beginning to toilet herself once more. ( she was very

different before autism appeared at age 6)

So have hope! Welcome again. Jay

-- RE: Newbie

Hi ,

I am the mother of a 9 y.o dd who was not dx'd until 6 y.o. My dd sounds

very much like your dd.

Feel free to contact me anytime.

Yvette A.

Newbie