Should autism label be known forever? | Autism PDD
Well, I always consider it as a "need to know" thing, which changes by situation and over time.
Not everyone needs to know, but people often jump to their own conclusions which might have a stigma attached to them, too -- things like "he must come from a bad home" or "I don't think that that kid can be trusted" or "what a weirdo." I even found out that an older child called my son a "retard" during a class discussion following a joint activity between his class and my son's class. The teacher just said no he's not and quickly changed the subject, so I'm leaning towards openness myself.
But it's a tough call.
My son (10, year 5) has been mainstreamed at school all the way through,
and in detention for most of it.
Most people assume he is NT, a fat bully who smells bad, and we are bad
parents. We only learned of his dx this Jan.
Although apparently it had been made several years ago, (we have been
seeing the local child & adol. Mental health team since he was 4... great
communication from the 'experts'!) The school has been incredibly
resistant to his dx. We thought it was exciting, sort of doh..so thats
why.... The dx has enabed us to apply more structure and routine in our
home, reducing his stress and behaviours, but the school won't
take it seriously. The more structured nature of school has always mean't
his most difficult behaviours have always been saved for home
. He's
had the same class teacher for the last 3 years, and has been in the same
class room for two of them. Which has been great, but transitions are very
difficult for him, and they won't help him prepare for all the changes of
highschool, multiple teachers, moving around a big campus etc. They
won't have any kind of diary for notes to go too and from school in. They
rely on him to bring notices home, so I never know about anthing until
the day after
, or the morning of, when there is a melt down at home
because I haven't got him ready for something I didn't know about. The
specialist teachers at the school, Music, physical education were not told
of his dx even after we brought it to the attention of the principle. I had a
phone call from the p.e. teacher with some concerns, and he was
dumfounded when I interupted him to ask "you do know he has an autism
spectrum disorder don't you?". The principle has said to my face that " he
doesn't have real autism" like severe classic autism is the only one that's
real!
What I really wanted to say is the only way our children will ever live in a
world where having autism carries no stigma, is if we are all matter of fact
about it. Teachers need to know. Other parents need to so that our
children can be included in ways that are appropriate for them as
individuals, and not have imposible expectations placed on them, or be
excluded when they could be included. Our
kids need to know too. I've been able to de-escalate a pending melt down
more than once, by telling Sam to "slow down, the reaction you are
having to being touched is unusual, he didn't mean to hurt you, its an
autism thing that you feel this pain, come here and I'll squash you, that'll
help" for eg.
Some peopke have skin that gets sunburnt very easily. Some people don't.
Some people are deaf, they comunicate by sign, some people need
glasses to see, some people don't, some people love to run, some peopIe
don't. Some people flap when they are happy or bored or thinking , some
people don't. Some people have asthma, they need breathing medicine,
Some people need low light, a quiet room and stillness around them so
they can focus. Some people can focus when its bright and noisy and full
of movement. That's okay. We don't expect every person with glasses to
have the same Rx, we shouldn't expect everyone with autism to be the
same. But we don't make the kid with glasses live without them and
pretend they have 20/20 vision incase they get teased. We get them
glasses, and we try to teach bullies not to tease. Hiding dx will not help
anyone in the long run. There is a balance between sending our kids out
to face the world in t-shirts saying" I'm Autistic, what's your problem",
labelling them in a confronting, even agressive way, and in hiding their
dx, diminishing their achievements and pretending having autism is not
part of who they are. Autism is not who they are, but it is part of who
they are. I love mine just how he is, and I'm not going to deny autism is
part of him.
I go on
[QUOTE=ChibbyLick]
What I really wanted to say is the only way our children will ever live in a
world where having autism carries no stigma, is if we are all matter of fact
about it. Teachers need to know. Other parents need to so that our
children can be included in ways that are appropriate for them as
individuals, and not have imposible expectations placed on them, or be
excluded when they could be included. Our kids need to know too.
[/QUOTE]
I agree ChibbyLick, in a perfect world yes everybody needs to know and autism needn't have any stigma attached to it. I for one can't bring myself to tell anyone. We have only been recently diagnosed.
Mary
Very well said JJ Dad.
Mary
I would put that label in your rear view mirror!
I mean you can continue to monitor her and inform others as needed. Because of the stigma surrounding the word Autism I would use it sparingly. When it is time to tell my son I will say it is very mild if he even has it at all - I don't want him to think that any tribulation that comes along is a result of him having an ASD.
I am just wondering if your child gets to where he/she are totally mainstreamed, no behaviors at all and able to do all tasks and navigate the whole day, weeks and months of public school would you still want all to know they are autistic? I have been wondering this for awhile since Sarah finished kindergarten last year and none of the other teachers that had her knew her diagnoses~only her teacher did ( I assumed all knew) and all were so shocked to learn she had it. I dont want to place a label that may get her treated differently or negatively in anyway and only want what is best for her plus I am a big honest big mouth...but I still wonder if keeping it quiet with other moms with kids that Sarah may play with will spare her being judged to much or put fears into others that are totally unfounded...she is as close to recovery as any a child I have seen yet she isnt cured and you guys would notice her quirky but cuteness right off:) I dont know how to raise her as autistic without subjecting her to stigma and fears of others...I hate to think the other kids will find out and really outcast her more than she already is..she is just entering first grade so I could in essence put an end to the label as far as school is concerned...she doesnt qualify for anything anyway.
I am going to dev. ped. on monday and maybe my mind is thinking too hard on this subject..but I feel the doc is going to to be blown away with her. I will post what he thinks..it will either be a celebrating whaoo post or a punch in the nose reality check!
I think it must be wonderful to reach that stage where you are wondering about the label. I have heard that with the right interventions and of course depending upon the severity of the condition, many children often become indistinguishable from peers during school years and your story is simply beautiful. This has always given me so much hope for my son who has long long way to go, we are just starting down this path to be honest.
I know I would love to be in your position. Glad to hear your little girl is doing so well.
Mary At the beginning of kindergarten I told them that I could care less about academics..she mastered them already. All I wanted for the whole year was to get her social with kids and hopefully have a friend. They have no social skills classes here at all so I had her in a private ABA playgroup..at the end of year she still hadnt made a real friend. I wrote social goals for the teachers that I wanted for Sarah..and sent a list on "how" to help her socially but not sure if it was used that I could tell. She never had one incident at school the whole year...speech was 15 min 2x a week and a joke~ she would of been better off without it. This year I am going to be more assertive with all the teachers involved with her and hopefully at least one will try in earnest to help her with peers more:) I wish the school took social skills more serious here but they dont at all. No talking at all seems to be the motto at this school
...probably why Sarah did so well..she loved not having to talk. You and Sarah have been an inspiration to me. You have every right to all of you feelings/worries. I can't imagine anyone getting offended. There is nothing I like hearing more than a child with any form of autism doing well. Whatever you decide Label or not whatever happens in the future you will make sure she gets the help she needs. I am just overly cautious because of mistakes I made with my son's dx and schooling in the past. Parents like me need these success stories! You can read stories on the net like this but I am suspicious of them for some reason. Sarah's success is real to me and gives me hope. I started my son on fish oil and he is doing so much better, better than he has in 3 years and I am getting VB for the next school year. You have given me hope. Hopefully I can post a success story soon. He is certainly doing much better. He is saying more and mom and other things that are not understandable but he is consistantly trying now. consistant for the first time in his 6 years! Here is the link to that article Shelley. I know it's not the same situation - but often if you go in to a school armed with information - well, they take you more seriously. Especially if it includes the words "judge's ruling".
I wonder if this poor girl ever got help socially because of this win? I hate to hear how much these kids development depression and anxieties ect..as they get older :( I feel Sarah on monday eval. will probably get aspergers or pdd..but the school told me they not only dont have social skills classes or groups but never heard of them..maybe I can get a fire going and get one started!
Thanks a bunch!! I love you guys!
I want all of the teachers to know about Brian Patrick. He is in a seperate class room for acedemics. But he also gets to go to an inclusion class for all specials (art, gym, music & lunch/recess), so I always schedule an appointment with the inclusion teacher & his Sped teacher at the beginning of the year so that we are all on the same page, because social skills was one of our top concerns. Luckly we do have an Adjustment counsoler in school to help him with his social skills. Outside of school is so different, I worry about telling people to soon about him because I don't want them to judge him before knowing him. It's so hard to know what is best for them. It's nice to see from this post that there is really no wrong answer. Shelley, always keep in mind that autism is defined by its symptoms and the symtoms have to rise to the level of 'qualitative impairment'. In the absence of those symtoms, an autism diagnosis is not warranted. Every two year old is autistic, but 165 in 166 grow out of it. Some take longer than others. Some take a really, really long time to grow out of it. A few never do. I think Sarah grew out of it. I wouldn't hesitate to let her or anyone else think that. If she starts having problems down the road, then you tackle those as they come. Lots and lots of kids have problems in middle school, socially. It's not like autistic kids get tortured while everyone else gets a free ride. It's a brutal time for kids, and no one escapes unscathed, but it's part of the process of growing up. I, personally, would let the whole autism thing fade from Sarah's conciousness and wouldn't saddle her with the notion that she is in any way different from other children, other than she's obviously academically gifted. I think you over estimate the social ability of typical six and seven year olds. My observation is, at that age, they don't have "friends" - they have pals and playmates that they interact with moreso than other kids, but the whole concept of true, lasting friendship, in my observation, doesn't really kick in until late adolescence. If Sarah's not making obvious social faux paus and not setting herself apart with her behavior, than I would say that she's fine socially. I don't think it's possible to force a kid to have friends, anyways - only possible to give them the tools that they need should they choose to seek friendships - and Sarah, at seven, with her outstanding communication skills, interests, and various talents is fully equipped to connect socially with other children should she choose to do so. I would simply encourage the development of her interests - the drawing, reading especially. Get her involved with groups that cater to her evolving interests - get her around her intellectual peers rather than her class or age peers. She's connected with you and her sibling socially, so she can do it - and she will, I have no doubt. I doubt Sarah is going to be a hugely social creature - but, iirc, neither were you! Neither am I! Some folks aren't wired for it but they're happy nonetheless. It'd be nice if she had a group of friends going into middle school, and I'd bet she will, but true friendships seem to form outside of the confines of social skills groups and such, imo. I remember my first true "friends" - people I cared about as people, beyond their value as someone to simply play with, didn't really happen until fifth grade. I remember those kids to this day - I remember their personalities and characteristics that made them special to me. Every kid before that I remember merely as someone that I played with but it's kind of blurry. On the issue of hanging around after "recovery" (for lack of a better term) - I'm all for it. I think Sarah is a huge inspiration for parents of kids who are just learning of their own children's diagnosis but who are much younger. It's helpful to see positive outcomes. I'm ambivalent, though. I can't stand looking at those "recovered kids" videos that you can find on the net, where the parent talks about it in front of their kid. I guess the thing that bothers me is that any "recovered kid" video that I've ever seen shows an older autistic kid who's learned enough skills to be able to act appropriately most of the time, but who is still obviosly (to me and probably most autism parents) 'different'. I can imagine that if, as a child, my parents told me that I had this horrible disorder that they "recovered me" from, I'd be pretty nervous about a relapse, especially in light of the fact that these kids must still feel different from their peers and they're probably all screwed up trying to deny their own autism so that they meet their parents continued approval. I would just let the whole thing fade away. If you can find a way to tell your story without Sarah having to be there nodding in agreement as a "recovered autistic kid", then I'd do it, but I wouldn't put her on display like some of these recovery parents do. I think you over estimate the social ability of typical six and seven year olds. My observation is, at that age, they don't have "friends" - they have pals and playmates that they interact with moreso than other kids, but the whole concept of true, lasting friendship, in my observation, doesn't really kick in until late adolescence. [/QUOTE] I think this is more true for boys than girls. Some of my most meaningful friendships were developed in first grade. My NT daughter had a best friend in kindergarden and first grade and then we moved. She STILL to this day says that her little friend back then was the closest friend she had and she still to this day misses her. She is now in 8th grade and 13 years old and still yearns for that kind of friendship. What you stated does ring true to my oldest son though. funny thing is that he has a lot of "pieces" though.
Karrie Thanks Fred.. I totally agree with both of your posts 100% I think the fact that nothing stands out in a negative way for her now is why I am so ambivalent about stating she has autism to people...her ped. said she was no longer autistic and the school tested her and she didnt meet the criteria either anymore on all their tests and this was last year! She has improved even more since then. Either way I will never leave this board:) Nor will I write a book or put her on stage as recovered!
Kathy: I am going to put her brownies I think this year:) I had my oldest dd in girl scouts for years~I was asst. leader and it was very good for her:) I cant even remember first grade much less having a friend? I think my first friend was 5th grade..me & Michael Story:) We would laugh our heads off at silly pictures in books in the library:) He lived across the street from me and we would wake each other up in the mornings and climb trees & make clubhouses:P He broke my heart and moved away!
Shelley, my kid's school has a program called PSAP (primary school adjustment program). It is for all kids having a tough time adjusting school/making friends. My son was in it because he was so lonely when we moved there and was having a tough time making friends. The children get to pick a classmate that they want to play with and then a 'playdate' is set during school hours (like 30 minutes 1 a week with permission of the other parent) and then one session with the student alone to strategize/learn techniques. They have a lunch buddy type system. This isn't special ed or a social skills group..maybe your school has something like that. I agree with Fred 100% too. I also agree with Karrie that girls tend to develop deeper friendships at a younger age than boys. I think this is a natural outcome of the fact that little boys have a tendency toward being physical, which means they play with each other alot, and little girls have a tendency toward being more verbal, which means they talk to each other alot. (Caveat - I know all kids are different and these are broad generalizations). We're the extrovert familily. I am still close friends with a girl that lived on my block when we were growing up. She was a year younger than me so we weren't in the same class at school, but we had a close friendship from when I was 5 or 6 years old. My NT son R is very outgoing and has tons of "friends" but to Fred's point, they are more playmates than anything. They get together and play sports and toys, but they don't sit and talk and really get to know each other's thoughts and feelings on things. I just got my dh's opinion on this and he agreed totally with Fred. Dh had playmates up until 6th grade when he made his first real friendship (btw - dh friend from 6th grade was best man at our wedding). I have a nephew who is 8 years old and has some traits. He's rigid, he has some pragmatic language issues that he goes to speech for 1x/week, and in kid terms, he is a crybaby. He has had a lot of trouble making friends. He is intimidated by groups of rowdy boys and rough play. He has a low tolerance for teasing/banter. He didn't make a single friend in K or 1st grade. In 1st grade there were some bullying situations that my sister had to address. (Kids teasing him until he cried, then calling him a crybaby.) This past year, in 2nd grade, it was very different. There were a nice group of boys in the class and a great teacher that was very tuned into elementary school social nuances. Also, my nephew had matured a bit and didn't cry so much. He had some success in soccer that built some self-esteem, and his tolerance fore teasing got a bit better. He still wasn't mr. popularity / social butterfly but he established friendships with two nice boys, who are also a bit on the quiet side, and they go to each others houses and play computer games together, etc. It will come for Sarah just like it came for my nephew. It just might take some time. Well Shelley bet your sorry you asked now since you have split opinions. Whatever you do, you are blessed that your Sarah has come so very far! [QUOTE=autumn]Shelley do you have to get tested where you are? Up here in the Rockies you go thru major testing every three years, and the label is easily taken away when your child has progressed a lot, so don't worry about 'the label' being removed, it will be cause for REJOICING!!!!!!!!!![/QUOTE] I'm not sure how I feel about this. It could also be the school trying to unload a kid who isn't so obviously affected. My oldest son passes for NT. However, he still receives speech for pragmatics and he participates in a social skills class. I am also concerned about what puberty will bring. I prefer to keep things in place, rather than remove a label only to have things start falling apart and have to fight to get services back. I would be so happy if my son had progressed this far, but I think I would keep the label in fear of him having troubles down the line in middle/high school. No one has to know except the ppl dealing directly with her. What a great job you have done with her! When she was younger I was so upfront about it because I didnt want people to think the worst and come to false assumptions about her...the main thing she did was not respond..at all
She has never had aggression or stims and mostly now the thing that looks off is her quirky remarks to people and her social:) I guess part of me wants to "pretend" it doesnt affect her enough to be using the label anymore..and yet like Tzoya stated this may be the scenary for now but as she grows older it could change very much:( I read that NY times article on "girls with autism" and it made me very sad to think that even now when she is pretty indistinguishable she will still suffer much later on in middle school+... I know I have no room to be upset when it could be so much worse~if anyone reading this is offended please forgive me..I know your story is different than mine is right now..I never dreamed I would be in this position. My mom told me to place her in an institution at one time so her coming this far was a miracle! It is why I am on board..I want to let everyone know that progress beyond what you are dreaming can happen:) I researched recovered kids and found that the reason most of us dont hear from them is because the parents totally leave that part of their world and probably do their best to not look back! It's been a long 5 years of therapies, evaluations and $$$ and I can see why it would be nice to forget all about the label and just live life as normal as possible but I feel an obligation to tell others what may lay ahead for their child. I had no vision of her future in the beginning..there was no roadmap to recovery known. I just wanted her talk to me and know what love is and that she was very loved..and I wanted her to be able to love back:) The rest was gravy:) She tells me she only has a smidge of autism now and right now I keep telling her she will always have autism but I am so afraid of the negative ramifications on her self esteem by telling this..her little face just looked down as if she felt really bad for still having it. I think she wants to move beyond it as much as I do:) I guess it's a double edge sword right now...If I drop the label and then she when she needs it I will never forgive myself..my impulse side just wants her to be as normal as she can be and not have that label on her as she is right now..it just doesnt fit her anymore. ETA: Thanks everyone for the replies~forgot my manners!
I know you have been concerned because Sarah still does not have a friend. This alone would be a reason to keep a label. I posted an article on another thread about how a school district got sued to keep services even though their daughter was an outstanding student - the SD said that obviously the diagnosis did not affect her education. The judge ruled that social issues DO impact a child's education and should be a part of a child's education. I guess I would try to keep the label for the school. She should get some social skills stuff - whether it be private or however you want to do it. Even though I am usually a big-mouth as well - I too, keep the label private unless someone REALLY needs to know. In a perfect world, everyone would be accepting and treat a child with a diagnosis of autism well, but that is not the case. I go back and forth because I know that the more we talk about autism and educate the community - well, the better off ALL kids will be. However, when it comes to my individual child (who is very mild as well) - well, I'm very protective and don't want others to judge him by a label. He most often passes for NT in public - so he actually won't be judged as something "different". He usually is fairly charming - sometimes talks off-topic and quirky, but not rude or "naughty". Well, most of the time that is!
So, I tend to side with keeping it private among other moms - unless I know them really well and/or they have kids on the spectrum as well. Even then, I'm hesitant and I always ask them to keep it private. I explain that I want my ds to make the decision himself as to who to tell when he gets old enough. There is my completely wishy-washy answer - hope it helps! This is a great post! I do just want to say that I had a very best friend in kindergarten (I turned 5 about a week before kindergarten started) and was DEVASTATED when she moved away. We had the same birthday and were the exact same age and were inseparable. I have always wondered what happened to her... I didn't have many friends after that because I skipped 1st grade and then we moved the first week of 3rd grade. I then went to a Catholic school in one town for the rest of that semester and transferred to the Catholic school in the town my parents bought our house in for the last semester. Needless to say, that wasn't exactly a year I made many friends! Although I did have some in the first Catholic school that I met up with years later in high school and we totally renewed our friendship! So, I guess what I'm saying is that yes, girls are definitely different than boys in that respect. I know three year-olds who have "best friends" that they spend all their time with. But there are also girls who don't have many friends until much later on as well. Shelley, my only concern is that IF Sarah does encounter issues later on - if you let the diagnosis go completely - well, it is often hard to get back. Depends on the school, I guess. If you trust that the school will give her services if she shows issues that is one thing. But remember, teachers and administrators can change frequently - so that will be a factor as well. But, take the time and be SO proud of Sarah - she has just done awesome (as have you!) I also agree with Fred 100%. I wanted to say thank you for staying on the boards and giving parents some hope that with the right therapy and time things do change for the better. I enjoy reading your posts and looking at your little girl's smiling face. Shelly I would NOT carry the label into school, I would let her be her without it. You can let parents and teachers know later IF there is problems down the road. I just wanted to say congrats and I hope the answer will come easily for you Thanks for all the responses..lot to think about:) Much appreciation:) I am sorry Fred, but I have to disagree with your post. For a start, no, not "all two year olds" are autistic. I have seen other two year olds at the toddler groups, at meets from parenting forums, at coffee mornings and they have all been very different from Tom. Yes, all two year olds have their quirks, their tantrums, their difficulties making themselves understood but a two year old who is diagnosed as being on the spectrum receives that diagnosis because they are markedly different and have significant difficulties compared to other two year olds. My son didn't get his diagnosis at the age of two years nine months because he was a bit quirky, he got it because he had (and still does have) significant problems understanding, communicating (he still can't ask for a drink if he can't see the drink or get to the fridge, or tell us he needs his nappy changed, even if we take his nappy off he doesn't react if he's done something), because of his problems interacting (he has no awareness of the difference between strange and familiar adults for a start), because of the high discrepancy between his verbal and non verbal abilities and several other factors. To say that all two year olds are autistic is dismissing the significant difficulties and differences that he continues to have. The other thing I need to explain, is that there is a world of difference between an NT teenager having a hard time coping with peer pressure, being bullied, keeping up in class and someone on the spectrum who has to contend with more significant problems. From my own perspective I'm talking about spending breaktimes staring into space, unable to react or respond most of the time whilst others in my class said things like "if I was her I'd kill myself". I'm talking about my weight dropping far lower than it should have because I'm not eating properly, partly as a result of not being able to eat in the school dining hall and not being able to tell people about it. I'm talking about being often unable to let go of things to throw them, resulting in a burned hand on one occasion. I'm talking about having a painful, sore head for two weeks after the family dog bangs into it with her head and unable to tell people I'm in pain. I'm talking about going through my entire seconday school in the same PE Kit because I can't tell people, in fact I'm not even thinking about telling people, I need a new one. I'm talking about being unable to button up my coat correctly, tie my shoelaces, tell people I need to be excused to go to the toilet, or even often not recognising the signs until it's too late. People on the spectrum don't just have a little bit of trouble fitting in, we often have difficulty explaining our basic needs and wants, coping with organising even simple things and, without trying to have a go at you, I do think it's a little inconsiderate of you to claim that all NT's have a hard time too. Yes, adolescence in particular is a nasty time for most, regardless of whether they're on the spectrum or not, but the social aspect is just a small part of the difficulties that people on the spectrum can face. For example when I left to go to university I survived for 6 weeks on a small yoghurt and slice of toast a day because I didn't realise I needed to be eating properly. Right, I didn't mean that literally all two year olds are autistic or that autistic two year olds are indistinguishable from non-autistic two year olds - the diangosis is always made relative to same aged peers - I just meant that all two year olds have immature development with the triad of skill-sets that define autism (language, social skills, imaginative play). The other thing is that I was referring to Sarah, specifically, not autistics in general. She, apparently, is having no difficulties at this point in any domain - perhaps a bit lagging socially, but no sensory issues, problems with overload, no self help defeciencies, no learning disabilities, etc. If I had a kid that was no longer presenting with any autistic symptoms, I would not saddle them with the knowledge that the are 'autistic'. Of course, as problems later arise, those should be taken in stride, but Sarah, to me, sounds like she's overcome just about everything that this disorder can through at you. She sounds truly 'not autistic' at this point, so problems that are typical of autistic adolescents and teens may not pose any problems for Sarah at all - they could happen, but I wouldn't assume that they will, as developmentally, she seems to have 'caught up', if not surpassed her peers in many ways. Of course, this is just my mental image of Sarah based on forum postings - the developmental ped. will have a much more informed opinion, I'm sure! Bullet, Obviously this thread hit a nerve with you (no disrespect). I did see some things you said that I agree with. Also, I really wanted to ask you a question...because of what you said about not realizing pain and other sensory/NS issues...I thought maybe you may have an idea. Ali has been saying for almost 2 months that her left knee hurts and that it is hard to walk about falling. Her orthopedic dr said he did not see any reason that her left knee should be hurting....the X-ray was fine...my sister said that she is just trying to get out of walking & doing certain things....but I think something is wrong. Do you (or anyone) think she may be feeling pain but not in the right place? She has confused (as I still do) the right and left before saying her right arm hurts when she has hit the left & vice versa. Or do you think maybe she has something more going on and she is saying the left knee hurts but really both legs hurt or something like that? Her orthopedic dr said she has some muscular spacicity in her legs. Ali is not a kid that normally voices feelings of any kind appropriately. But in this case I know in my gut she is in pain or having some feeling that is resulting from something. Anyway, I know you are not a doctor but your post made so much sense and touched me and I thought you may be able to understand or have an idea. Also, I understand what you mean. I think everyone thinks they have it hardest...but who knows who does and if a person feels they have it hard, there is a reason that needs to be addressed. I remember crying insanely as a child and my dad would yell at me but I could not stop myself...the more I tried the more I cried. I also had and still do the delayed responses to sensory stimuli, like you spoke of. I had trouble communicating other than in writing. I would get lost "daydreaming". I had rituals with certain things, as with food and could not eat in front of others. I had trouble with stairs (I could not tell where one step ended and another began and if I walked too fast I fell) and kids used to call me "slowpoke" and other names in 1st grade (which was my 1st year of school). I had a number of "symptoms" but no one ever realized I could have any sensory issues or possibly be on the spectrum or anything like that. My parents just thought I was an extremely shy, intelligent, quirky, emotionally sensitive child. It is hard for everyone but for people with special needs and conditions it can be torturous. The NT people see from the outside...the thing many people do not understand is just because the kid is doing well on the outside and has made great advancements...who is to say the kid is doing well on the inside? It takes a lot of work to overcome differences and obstacles and just because a child does well for a long, long, time...it does not mean they are not still dealing with the same issues they had when first labeled with thier disorder. This thread is fine, it was just Fred's wording in his post that hit a nerve :). I can understand pain fine, just not tell people a lot of the time I'm in pain. I don't know about your dd, she might have sprained a muscle, bruised it, it might be growing pains. I take it the doctor did ask her "do you mean this leg?". An xray won't show up all pain, if you banged your knee it would hurt, but it wouldn't show up. I'm not trying to compare my difficulties and differences with everybody on the spectrum, my problems communicating are mild compared to someone who can't talk or type, for example and my sensory issues are uncomfortable, but not often to the point of being painful, but I do know that they were significant enough to have me noticed back in the 1980's and to impact significantly and still impact significantly on my life. There are good aspects as well, which is always a bonus
I read this thread earlier today and have been thinking about it alot, and I'm somewhat on the fence with this one. Ideally, we will eventually reach a point in time where autism awareness has succeeded and the average person will have a basic enough understanding of the spectrum to "get it" without long winded explanations and insulting questions. It would be nice to be able to say "oh, she has autism" similar to the way one might say "he has asthma" or "she's nearsighted" or "he has allergies." Unfortunately, I don't think we are there yet. On the flip side, a journey of a thousand miles begins with a single step and we're never going to get there unless people start being more forthright and matter of fact about it. That being said, this is a very personal choice. I personally would try to keep her label for school, because once you lose it it may be hard to get it back if you should ever need it. As previously pointed out, that is kept very private. And even if a teacher, who should know better, walks in on the first day of class with a preconceived notion about what Sarah can and can't do based on that information, Sarah will quickly put any concerns/sterotypes to rest just by being her smart, lovely self! Regarding other folks, I'd just keep it on a need to know basis. That's kind of what I do. For example, I told the t-ball coach, but not all of the other parents. I needed to tell the coach, because I specifically needed to let him know that he needs to show C stuff, rather than just tell him. Especially in baseball the coaches tend to yell instructions to the kids from across the field. Next year I probably won't even need to mention it to the coach because by the end of the season C was responding to the verbal instructions without the visual prompts. One way to look at it is this, when you find yourself debating about whether to tell someone about the dx, ask yourself why that person might need to know. Is there a direct benefit to Sarah for this person to know? What is the worst that can happen if they don't know? Another whole way to go is avoid the autism and only mention a particular symptom if it is germaine to the situation. For example, say you're at the park and Sarah is trying to interact with another child but it isn't working so well and the other child's mother is there too. You may say something like "Sarah is a bit immature in the social skills area and we've been working with her on the appropriate ways to interact with other kids. It's been hard for her to make friends." You don't have to mention autism at all. OK, those are my random thoughts for the night! Good luck on Monday! hi shelley. dont worry about what doctor will say. the main thing is sarah is doing great and as a mom you are the one it should be gojing her not any body else. good luck
This is an interesting discussion because we get the same thing with dd. For us, it has been a back and forth discussion for a year as to whether she was PDD so I can see how someone who just gets quick snapshots of dd can think she is NT. I am actually starting to run into this with the teacher at dd's new school (starts K next week). They did some testing a few months ago and the teacher came back and said dd did great. The way she said it was in a way that I could tell she didn't see any issues. In my head I was thinking, "Just wait until an assembly." Dd can blend well because she does not have any repetitive behaviors that make her stand out. You could easily think she is just shy if you were not all that familiar with PDD.
campfire
type leader? How about Indian guides(used to be Indian princesses)
throught the YMCA.
I was a cub scout den leader for my oldest son and my husband did
Indian princesses with our midddle daughter. These were all social
oppurtunites with the same kids in a small group setting over the course
of couple of years.
My friend did a book club with her daughter and that was a lot of fun. It
was afterschool twice a month.
Another Mom I knew did once a week afterschool playgroup once a week
with her kindergartner and his classmates for fun games and snacks.
(parents had to participate)
Anyway on the lable issue, I think you need help with peer/play and social
interaction, I would insist on an IEP which states that. I would then ask
them to do exactly what you want in a nice way .
We are one year behind you in this ride as Tyler will turn 6 in November and is starting mainstream kindergarten with the lowest intensity level of Autisim support. More will be there for him if he needs it, but we want to challenge him to accept the things that are presented to him.
I have stated in prior posts that his psychologist said that there is a better than 25% chance that he will fall out of the PDD/NOS diagnosis. I want to keep that label because the support that he may need is available to him because of the diagnosis. Who knows about it is at our disgression.
Tzoya [God Bless this Lady], and John have expressed the opinion that I share for our situation. I don't know how the MR/MH support things work in "Tejas", but in PA, if you give something up it is hard to get it back should it be needed.
Your Sarah sounds a lot like my Tyler, and We hope for the same sucess for our little boy that your baby girl has achieved in her young life. Even with the quirks that they share, they would probably be good friends.
I have been told I should keep the PDDNOS label in order to get services long-term. I too worry about the stigma of autism, but I have found that I do have to bring it up in certain situations. For example, she started a dance class today and there were 8 girls. The waiting area was crowded and dd started getting very anxious about the people that were in her way so I thought I better forewarn the teacher in case something came up in class. She was very understanding and put dd on the end during the bar exercises and on the end when they were in line. It was such a simple thing, but it allowed the lesson to go smoothly. I think had she been in the middle she would have been too worried about the kids being so close to her.
My worry is that people think I am a bad parent. My dd has fine motor issues and I remember one day in preschool she couldn't press the soap dispenser. She started bawling her eyes out and I heard a grandmother of another kid say (with an eyeroll), "She's freaking out again." 
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