Re:Sample letter to disclose son's AS to family & friends

[Guest guest]

Hello!! Somebody sent a sample of a letter disclosing her dd AS to her family and friends. Can you resend it again since I seem to have lost the previous one. Or if anyone else has a sample letter disclosing the dx please share it w/ us. w/ the holidays just around the corner, and my 17 yo ds just got diagnosed this last summer, I wanted to explain his behavior to my oh so criticizing family members- that explains why he acts the way he acts in social functions. Thanx again!!

[Guest guest]

This is the letter I found and used :http://www.udel.edu/bkirby/asperger/grandparents.htmlGood luck!

[Guest guest]

im sorry mark.

is this the one you mean?

i posted it after getting it from our local autism support group.

i think it is well worded because is is written as if it is coming from the

person it is about.

it makes it well understood and accepted by those that read it.

here it is.

Dear Family,

I understand that we will be visiting each other for the holidays this year!

Sometimes these visits can be very hard for me, but here is some information

that might help our visit to be more successful.

As you probably know, I am challenged by a hidden disability called autism or

what some people refer to as a pervasive developmental disorder (PDD).

Autism/PDD is a neurodevelopmental disorder which makes it hard for me to

understand the environment around me. I have barriers in my brain that you can't

see but which make it difficult for me to adapt to my surroundings.

Sometimes I may seem rude and abrupt, but it is only because I have to try so

hard to understand people and at the same time, make myself understood. people

with autism have different abilities: some may not speak, some write beautiful

poetry, others are whizzes in math (Albert Einstein was thought to be autistic),

or have difficulty making friends. we are all different and need various degrees

of s upport.

Sometimes when I am touched unexpectedly, it might feel painful and make me want

to run away. I get easily frustrated, too. Being with lots of other people is

like standing next to a moving freight train and trying to decide how and when

to jump aboard. I feel frightened and confused a lot of the time, like you would

if you landed on an alien planet and didn't understand how the inhabitants

communicated.

This is why I need to have things the same as much as possible. Once I learn how

things happen, I can get by ok. But if something, anything changes, then I have

to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can't understand what you say because there

is a lot of distraction around. I have to concentrate very hard to hear and

understand one thing at a time.

You might think I am ignoring you--I am not. Rather, I am hearing everything and

not knowing what is most important to respond to. Holidays are e xceptionally

hard because there are so many different people, places and things going on that

are out of my ordinary realm. This may be fun and adventurous for most people,

but for me, it's very hard work and can be extremely stressful.

I often have to get away from all the commotion to calm down. It would be great

if you had a private place set up to where I could retreat.

If I can not sit at the meal table, do not think I am misbehaved or that my

parents have no control over me. Sitting in one place for even 5 minutes is

often impossible for me. I feel so antsy and overwhelmed by all the smells,

sounds, and people--I just have to get up and move about.

Please Don't hold up your meal for me--go on without me and my parent's will

handle the situation the best way they know.

Eating in general is hard for me. If you understand that autism is a sensory

processing disorder, it's no wonder eating is a problem! Think of all the senses

involved with eating: sig ht, smell, taste, touch AND all the complicated

mechanics that are involved with chewing and swallowing that a lot of people

with autism have trouble with. I am not being picky--I literally cannot eat

certain foods as my sensory system and/or oral motor coordination are impaired.

Don't be disappointed If mommy hasn't dressed me in starch and bows. it's

because she knows how much stiff and frilly clothes can drive me buggy! I have

to feel comfortable in my clothes or I will just be miserable!

Temple Grandin, a very smart adult with autism, has taught people that when she

had to wear stiff petticoats as a child, she felt like her skin was being rubbed

with sandpaper. I often feel the same way in dressy clothes.

When I go to someone else's house, I may appear bossy and controlling. In a

sense, I am being controlling because that is how I try to fit into the world

around me (which is so hard to figure out!)

Things have to be done in a way I am familiar with or else I might get confused

and frustrated. It doesn't mean you have to change the way you are doing

things--just please be patient with me and understanding of how I have to

cope...mom and dad have no control over how my autism makes me feel inside.

People with autism often have little things that they do to help themselves feel

more comfortable. The grown ups call it " Self regulation, " or " stimming'. I

might rock, hum, flick my fingers in my face, flap my arms or any number of

different things. I am not trying to be disruptive or weird. Again, I am doing

what I have to do for my brain to adapt to your world.

Sometimes I cannot stop myself from talking, singing, or partaking in an

activity. The grown ups call this " perseverating " which is kinda like self

regulation or stimming. I do this only because I have found something to occupy

myself that makes me feel comfortable, and I don't want to come out of that

comfortable place and join your hard-to-figure-out-world.< BR>

Perseverative behaviors are good to a certain degree because they help me calm

down. Please be respectful to my mom and dad if they let me " stim " for awhile as

they know me best and what helps to calm me.

Remember that my mom and dad have to watch me much more closely than the average

child. This is for my own safety, preservation of your possessions, and to

facilitate my integration with you tippies (what we autistics fondly call you

neurotypical folk!)

It hurts My parents' feelings to be criticized for being over protective or

condemned for not watching me close enough. They are human and have been given

an assignment intended for saints. My parents are good people and need your

support.

Holidays are filled with sights, Sounds, and smells. The average household is

turned into a busy, frantic, festive place. Remember that this may be fun for

you tippies but it's very hard work for me to conform. If I fall apart or act

out in a way that you consider soc ially inappropriate, please remember that I

don't possess the neurological system that is required to follow tippy rules.

I am a unique person--an interesting person. I will find my place at this

celebration that is comfortable for us all as long as you'll try to view the

world through my eyes!

>

> Hello!! Somebody sent a sample of a letter disclosing her dd AS to her family

and friends.  Can you resend it again since I seem to have lost the previous

one.  Or if anyone else has a sample letter disclosing the dx please share it w/

us.  w/ the holidays just around the corner, and my 17 yo ds just got diagnosed

this last summer, I wanted to explain his behavior to my oh so criticizing

family members- that explains why he acts the way he acts in social functions. 

Thanx again!!

>

[Guest guest]

,

Yes, this was the letter I requested. I really liked this letter because it was the point of view of the person w/ AS. But, I already sent the other one to my family and friends and they were from the parents pov. Maybe for Christmas, I will have my 17 yo ds make one using your letter format- it makes it more personal and more in touch w/ the person's personal experiences. I was just wondering who has AS in your family?? You said you're a member of the local autism support group there- is it just for those w/ AS or the family as well?? How is the support group run?? Do you like it and getting a lot out of it?? sorry for the questions- we've been wanting to join a group but is unable to find one locally. Thank you again for your letter.

Mark

From: <video228@...> Sent: Sat, November 28, 2009 10:41:22 AMSubject: ( ) Re:Sample letter to disclose son's AS to family & friends

im sorry mark.is this the one you mean?i posted it after getting it from our local autism support group.i think it is well worded because is is written as if it is coming from the person it is about.it makes it well understood and accepted by those that read it.here it is.Dear Family,I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful.As you probably know, I am challenged by a hidden disability called autism or what some people refer to as a pervasive developmental disorder (PDD). Autism/PDD is a neurodevelopmental disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see but which make it difficult for me to adapt to my surroundings.Sometimes I may seem rude and abrupt, but it is

only because I have to try so hard to understand people and at the same time, make myself understood. people with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or have difficulty making friends. we are all different and need various degrees of s upport.Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time, like you would if you landed on an alien planet and didn't understand how the inhabitants communicated.This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by ok. But if something, anything changes, then I have to relearn the

situation all over again! It is very hard.When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time.You might think I am ignoring you--I am not. Rather, I am hearing everything and not knowing what is most important to respond to. Holidays are e xceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful.I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.If I can not sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even 5 minutes is often impossible for me. I feel

so antsy and overwhelmed by all the smells, sounds, and people--I just have to get up and move about.Please Don't hold up your meal for me--go on without me and my parent's will handle the situation the best way they know.Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating: sig ht, smell, taste, touch AND all the complicated mechanics that are involved with chewing and swallowing that a lot of people with autism have trouble with. I am not being picky--I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired.Don't be disappointed If mommy hasn't dressed me in starch and bows. it's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable!Temple Grandin, a very smart adult

with autism, has taught people that when she had to wear stiff petticoats as a child, she felt like her skin was being rubbed with sandpaper. I often feel the same way in dressy clothes.When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things--just please be patient with me and understanding of how I have to cope...mom and dad have no control over how my autism makes me feel inside.People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "Self regulation," or "stimming'. I might rock, hum, flick my fingers in my face, flap my arms or any number of different things. I am

not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world.Sometimes I cannot stop myself from talking, singing, or partaking in an activity. The grown ups call this "perseverating" which is kinda like self regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable, and I don't want to come out of that comfortable place and join your hard-to-figure- out-world. < BR>Perseverative behaviors are good to a certain degree because they help me calm down. Please be respectful to my mom and dad if they let me "stim" for awhile as they know me best and what helps to calm me.Remember that my mom and dad have to watch me much more closely than the average child. This is for my own safety, preservation of your possessions, and to facilitate my integration with you tippies (what we autistics fondly call you neurotypical folk!)

It hurts My parents' feelings to be criticized for being over protective or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.Holidays are filled with sights, Sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you tippies but it's very hard work for me to conform. If I fall apart or act out in a way that you consider soc ially inappropriate, please remember that I don't possess the neurological system that is required to follow tippy rules.I am a unique person--an interesting person. I will find my place at this celebration that is comfortable for us all as long as you'll try to view the world through my eyes!>> Hello!! Somebody sent a sample of a letter disclosing her dd AS to her family and friends. Can you resend it again since I seem to have lost the previous one. Or if anyone else has a sample letter disclosing the dx please share it w/ us. w/ the holidays just around the corner, and my 17 yo ds just got diagnosed this last summer, I wanted to explain his behavior to my oh so criticizing family members- that explains why he acts the way he acts in social functions. Thanx again!!>

[Guest guest]

Mark,

its no troble for the questions, so please dont appologise.

i told my wife " i actually think my calling is public speaking about this

subject, and if i ever have the opportunity to, you better be damn sure i will " .

my daughter has AS. she is 8 years old.

it is really tough on my end because a dad always want a little cuddly daddys

girl. and, well, i dont have to tell you about the lack of cuddling or

affection.

we have a 15 year old daughter who has no signs of AS at all, so i guess i got

my daddys girl first and then God decided to give me my challenge when he felt i

was mature enough to handle it.

i also understand that is is very rare for a female to have AS.

as far as our group, we belong to the ASRC in Ct. (autism spectrum resource

center). it has been invaluble to us. they have support groups for the parents.

my wife and i had brought up at one of the meeting the lack of understanding

that other family members have because a child with AS doesnt look any different

and really doesnt act any different except for the fact that they would consider

it " misbehaved and withdrawn " . so at the last meeting they brought up the fact

that they believe that they should have a " family group " for other family

members other than just parents.

they have a large library of books that can be borrowed at any time and they

will work at getting you information when you need it.

it was well worth joining.

now the down side to the group.

most of the people there join because they have children with severe autism.

most of the children arent mainstreamed in the school system, so sometimes when

my wife and i start to discuss the issues we have with the school, they look at

us cross-eyed.

that is not to say they dont care. it is just that so many parents of children

with " asperger " dont join because they think the group is for people more on the

scale of " rainman " (for the lack of a better example). but my wife and i have

met some people with AS children and made freinds with them. the sad part is

this center is right in my town, but most of the people are from other parts of

the state. and the group will send out e-mails to all the members stating " there

is an 8 year little girl that lives in --- she has AS and is looking for other

children to get together for play dates with. if interested, please contact them

at ------ " .

but the bad part is most of the people are pretty far from us, so a play date

requires a long travel and only may once every couple of weeks. so for now, my

daughter comes home everyday and cries because " no one will play with her " .

if you go on the web and find ASRC in wallingford Ct. and e-mail them, i bet you

they could tell you of groups in your area.

they do so much good for these children, are non profit and have all volunteers.

they even have dances for the kids, and my 15 year old daughter and her freinds

all volunteer to be there to help and they will dance with the kids. and for

some of these kids dancing with a real pretty girl (trust me, my daughter is

model material, but thats from the perspective of her dad) is all that they need

to boost their confidence.

i hope i havent jabbered on too much, but i just want to stress " if you can find

a support group, JOIN IT ! " .

together we stand, support and stay sane.

.

> >

> > Hello!! Somebody sent a sample of a letter disclosing her dd AS to her

family and friends.  Can you resend it again since I seem to have lost the

previous one.  Or if anyone else has a sample letter disclosing the dx please

share it w/ us.  w/ the holidays just around the corner, and my 17 yo ds just

got diagnosed this last summer, I wanted to explain his behavior to my oh so

criticizing family members- that explains why he acts the way he acts in social

functions.  Thanx again!!

> >

>