My daughter's Dr says why tell her she has aspergers.

Mary - posted on 09/25/2012

Thank you so much for your beautiful comments. You truly understand how I feel. I love your term, difability!

Thanks for understanding!

Mary

Jane - posted on 09/25/2012

Mary - I'm really sorry that your daughter hates the fact she has AS. You are absolutely right, every person is different and no two AS kids are the same either. Some have tantrums when things get too much (or meltdowns as they are sometimes termed) - my son internalises it and gets sick (I mean violently throws up!) and suffers headaches, etc.



From talking to my son's Keyworker at school I hear about other AS kids in the school and some of them have had a hard time telling others that they have AS. My son is the other way - he is relieved to have a reason for him being different and we are currently looking at him giving a talk to the other kids and even to a group of teachers about Aspergers and what its like to have it.



Aspergers isn't weird - it's just means their brains are wired differently so they don't hear things the same as we do and don't process things the same. My son hates loads of people around him and 'people' noise (shouting, screaming, etc.) but he could have an MP3 player with loud classical music playing and that would be fine (Wagner' s Ride of the Valkyries is his favourite) so now, although MP3 and iPods are not supposed to be allowed in school, he is allowed to take his and wear it when things get too much.



By the sounds of it the school are helping - grab every bit of help you can and listen to all the experts at school who actually know YOUR daughter - not just stuff about AS. There is no right or wrong in this, just right or wrong for your child. Believe that you will get through it and that she will understand and learn how to make the most of the gifts that also come with AS - the wonderful bright human beings that they are, the focus they can have on things they are interested which can lead to them being fantastic leaders in their chosen careers. Focus on the positives that come with this 'dif-ability' (i.e - different ability - NOT disability). :)

Mary - posted on 09/25/2012

As I posted on sept 11th, I have told her and she hates herself even more. You are assuming that I'm not comfortable with it. Since I have suspected it for 7 years and read at least a dozen books on AS, I'm very comfortable with it. That doesn't make her anymore accepting of it. She wants it to be a secret and would "just die" if her friends found out. She has always been the type who doesn't want to be singled out or be the center of attention at school. She feels like a freak due to AS and her sensory issues and no amount of me trying to assure her that she's not is going to change her mind, for now. Believe me I've tried. Her anxiety doesn't make it any easier. I'm hoping the Zoloft will make a difference in her attitude and she will be more accepting of therapy.

My child is not the same as your child just as all AS kids are unique in their own challenges. My child gets jokes, makes up jokes and has a great sense of humor. She has a very limited diet due to her sensory processing disorder so taking her off gluten and dairy would leave her with

nothing to eat. Since she's already underweight that would not be a good idea.

Katlyn - posted on 09/24/2012

Everyone has the right to their own choices. Having said that, it never occurred to me NOT to talk about Aspergers with my son. He is 14 now and I just read this question to him and he thinks you should tell her. He says he is glad he knows why he thinks differently than other people and otherwise he would have just been confused and felt "weird". At 4, his younger brother asked, "why do I get jokes and Cutter doesn't, until you explain them?" , so I explained why and it made total sense to him. They are 3 years apart and the best of friends. They help each other, as all humans have their own strengths and weaknesses. It's just a piece of information, like knowing someone was an only child or had 6 siblings. That little piece can affect how we communicate with that individual in a given circumstance. It's what we do with it that matters. If you are comfortable with it, she will be too. I just read a GREAT book (hiliarious, written by a man with AS) , called "Look Me in the Eye". He didn't know, until a friend told him he thought he might have it, at almost 40 years old. It was life changing for him. I personally see it as empowering for them, not an excuse, not a problem, just a different way of looking at the world.

On a different note, of the things we have done, the MOST helpful for my son has been limiting his dairy and gluten and getting Neurofeedback for him. He's almost fallen off the spectrum. In addition, when we bought him some soundproof headphones because we were remodeling, he was SOOOO happy. He said the only thing better would be if they blocked all sound because it was so much easier to think. He kept them on for days (after we finished). I bought him an Ipod and now he uses it whenever he's in too big a crowd or too overwhelmed. Little things can make a big difference. Good luck!

Mary - posted on 09/11/2012

Thanks! Well, she started a week ago and it's ending...I think. Its been terrible dealing with it all.



Is your child getting help at school? I could kick myself for not staring earlier. It just seemed so mild when she was younger...then when the "need to make school friends" time comes along is when I realized it was more than just sensory issues.

Susan - posted on 09/11/2012

Yay for a good day and getting the help you need from the school. Boo on her period showing up. You didn't need that today! I hope she has a good time at Girls on Track!

Mary - posted on 09/11/2012

Thanks Susan. To top things off, she started her period for the first time. My 12 year old baby! :(

At our meetings theprincipal asked me if her not having PE at all would alleviate some of her stress and anxiety ( she hates PE and of course, is uncoordinated and clumsy ), so I told him yes. So at least now she won't have to worry about that. :) ! They are being very helpful and accommodating . After hearing about some schools that won't even acknowledge that AS exists I am certainly grateful for the staff at our school!

It's been a good day today, Girls on Track started today and she loves doing that! Fun time with friends.

Susan - posted on 09/11/2012

Hey - it's the teenage years, but with an added bit, right? Mine is 9, I can't imagine what is going to be coming next, but you're going through it! I hope things get better, keep us posted!

Mary - posted on 09/11/2012

Hi, since my OP I've told her, she hates me and doesn't want any help. I've told the school and getting a 504 plan. She cries ever night and wishes she was never born. She hates being different or as she puts it, weird. Her Dr put her on a tiny dose of Zoloft for starters and I have to force her to take it. Things are not going well but we just have to get thru it.

Laura - posted on 09/10/2012

My youngest son has been thought to have mild Aspergers since he was 4. His pediatrician and I both thought so, but his father refused any testing. My son is now almost 17 and has been in counseling for some issues and his counselor mentioned it! After the session my son asked me about it and what I thought. After my explanations, he said" huh, well that explains a lot! Why did no one ever tell me this or do anything?" so, it can be a relief to kids who notice they're unique and wondering why. Just my experience.

Jane - posted on 08/22/2012

I showed this to my son who is 13 and has just been diagnosed with Aspergers. He is also gifted in Maths and Science - anything really logical - and he has dyspraxia (now referred to as Developmental Co-ordination Disorder, or DCD) which he was diagnosed with when he was around 9 years old.



Anyway, his reaction was that he feels so much better now he has a reason for why he is different and he would have hated it if I had not told him and sat and explained to him exactly what it is and bought all the books, etc. that are good for kids of his age (Freaks, Geeks and Aspergers is a good one).



At the end of the day you know your own child and know if they are better with an understanding of something or not. My son was bullied to the point of trying to hang himself and it was only the counsellor he went to see after that episode that suggested he was on the Spectrum and he got tested, etc. Now he feels able to handle it better because he knows why he is different.



A good, short film that was made by the BBC here in the UK is 'My Autism and Me' by a young girl called Rosie and can be viewed on You Tube :



If you decide to tell her, it's quite a good introduction to what Aspergers is (Rosie has Aspergers, but has a brother who is quite severely autistic). Then get all the info you can and go through it all together - it's certainly helped us (and we've only had the diagnosis for about 3 weeks!!)



Good luck!

Susan - posted on 08/22/2012

If there are any further incidents with the girl whose books hit her in the head, it needs to be reported. Bullies like her will just continue. It's good that her friend is in many of her classes. I hope that an IEP will be available very quickly.



*HUGS* Keep talking to us!

Mary - posted on 08/22/2012

My daughter is not happy to see the world in a different way. She would "give anything" to not be different. She may feel differently when

she's older but for now, at 12, it's a nightmare for her.

Mary - posted on 08/22/2012

She's in honors English, math is her worst subject, the Prozac is for her alleged OCD and depression. She does have tons of anxiety. She also has SID. prozac made huge difference for a young family member who was diagnosed with OCD. I'm giving her a 1/4 of a 10 mg pill.

LESLEY - posted on 08/22/2012

please NO PROZAC that wont help the problem that will only mass,what she trying to hide,plus there addictive,for anybody

LESLEY - posted on 08/22/2012

mary your daughter is exceptionally gifted in certain subjects,that normal children who have no problems,could not understand ,my 13 yr old with AS is the highest in his maths and science groups,so he has been put on the accerated learning course,so its a case of checking if she more logical,or creative,in parts of her curriulum...plus some children like my son is hypersensitive,to certain clothing or sounds...

Christal - posted on 08/22/2012

You dont need to tell ur daughter she is different, these bright children know they r different than other children. It's not a bad thing, you ask an adult with these diagnoses about their differences n they will tell u they r happy to see the world in a different way. They r very smart people

Mary - posted on 08/22/2012

Well this is her first full week. So far she still hates it. The only thing that saves her is that her best friend is in most of her classes. She was already bullied once...but of course the kind that is disguised. A friend of a girl whose mother forbid her to play with my daughter because she said she was weird, (this was years ago)walked past my daughters desk and let her books hit my daughter in the head. She sarcastically said in a super sweet voice, Oh, I'm soooooooooooo sorry. Then the former friend laughed.
I am going to get a diagnosis from her pediatrician and talk to the school. They have to understand her. I'm very sad right now.

Susan - posted on 08/22/2012

How did the first week of school go?

Jennie - posted on 08/22/2012

My son was diagnosed with adhd when he was 6 and was diagnosed with aspergers about a year ago. He is 9 years old now. Hes always felt a little different and i would tell him we are all different and life would be boring if we were all the same. He also would ask how come he has to see the dr every month. I told my son he has aspergers after he was diagnosed. He already knew he has adhd. I wanted him to know so he can understand why he acts the way he does. I read him a kid book called "can i tell you about aspergers?" he has an older sister and a younger sister they both know he has adhd and aspergers. I've also just recently read "why my brother is different". From my personal experience i think by telling him it helps him understand himself a little better. My son thinks out of the box and sees things differently. He has really taught me a lot. Good luck with your decision. One more thing i think you should for sure tell school. Maybe have a meeting without your daughter knowing. My son got testing done on him and he qualified for an iep. Good luck

LESLEY - posted on 08/21/2012

hi mary my son has,AS also DYSPRAXIA plus HYPOTONIA he knows all about his problems,so that he knows when later in life when im no longer around..so go ahead tell your daughter even school...

Karma - posted on 08/18/2012

Your daughter has a right to know. I feel strongly about this because my now-30-year-old Aspie brother was NEVER told by my parents. They even kept it a secret from me and my sister. We knew he was different, but frankly we might have had a LOT more compassion and understanding for him and his antics over the years, had we known.

My father finally told me, earlier this year, only because I was pushing him to have my brother diagnosed. I have an autistic step-daughter, and I started to see some similarities.... so I asked my dad about it. Since that time, my dad has told my brother, but my brother has completely rejected his diagnosis. Says it is nonsense, and won't do anything with it.

Here's why I think it would have been better for my brother to know: he would have understood more about who he is, why he is different, what Asperger's is, why it is not necessarily a "bad" thing.... and most of all, been eligible for services specifically for him - such as education, or assistance with job-seeking, or perhaps some sort of financial assistance (since keeping a job is really hard for him).

It is also REALLY important for the school to know. Are you in the US? Your daughter needs an IEP (individualized education plan), so that she can have her education tailored to her specific needs, and get services she is eligible for, to help her develop and grow to her fullest potential. There are many things your daughter will be eligible for. She will be tested to find out what services she needs. Behavioral therapies, Occupational Therapy, Physical Therapy, Speech and Language, Social Skills, to name a few that she will likely get within her school (every school offers these). Also, contact your local government authority, you may be eligible for Respite hours (where someone comes into your home to care for your daughter while you take a break), or maybe even a disability allowance (depending on your income).

Don't worry about social stigmas.... being open encourages greater acceptance and understanding. And as your daughter gets older, she may find solace and comfort in support groups, online forums, and others within the Aspie community. If she never knows, she might always be unhappy wondering why she is so different to everyone else (I know my brother felt exactly like this as a child, now as an adult he doesn't want to deal with the reality and prefers to ignore it).

And, I'd get a new doctor.

Mary - posted on 08/16/2012

Thanks!

Susan - posted on 08/16/2012

Mary, just keep working at it. You're doing the right thing. I hope today goes well.

Mary - posted on 08/16/2012

Well, I brought up Aspergers's to my daughter. She hates it, she doesn't want anyone to know, she doesn't want help at school, she doesn't care what her wonderful qualities are. She doesn't care who else has it, she doesn't want to be around other kids who have it as it would make her feel more like a freak. My advice to anyone who thinks their child might have it....deal with it while they are young! I am so frustrated ! Today is her first day of school,everything is so unorganized there, I hope she does ok.

Kristin - posted on 08/16/2012

Natasha i love your advice!

Kristin - posted on 08/14/2012

Mary, I just read one of your earlier posts...about how your daughter doesn't want anyone to know. Perhaps if you have a list of famous people who have or are thought to have Asperger's, it may help her accept it, and not be so shy about others knowing. There's a lot of power in being able to say "I have Asperger's Syndrome, just like Bill Gates".



http://www.disabled-world.com/artman/pub... This is a link to a list of famous people who have or possibly have Asperger's.

Kristin - posted on 08/14/2012

Mary, she is your daughter, you know her best. If you feel it is in her best interest to tell her, then tell her! If you think the information should wait until she is older, then leave it for now. I wish I'd had the information to give my son. He was not diagnosed until he was 12. He knew he was different though. When he was 11 he asked "What's wrong with me?" All I could say was I don't know, but we'll find out. His diagnosis came as a relief for both of us, because then we could begin to understand his unusual aspects. Unfortunately, a lot of damage had already been done, because of the confusion for him, and the teasing from his peers. I feel that all children who are diagnosed with a disability (not the right word, but I can't think of another one) should be told, so they understand why they act/react differently to the other kids. It breaks my heart to see my beautiful son, who has so much potential, sitting around doing nothing because he still feels he is a "freak" and "stupid"....all the things he was told at school before we got the diagnosis.

Nahasha - posted on 08/14/2012

Hi my name is Nahasha and I have one word for you "EMBRACE". Explaining to your daughter that she has Aspergers may sound difficult but it's better for you to tell her than to hear it from society. Which you know she will be misunderstood and etc. I have a soon to be 7 year old that was diagnosed a year ago in kindergarten and now he have an IEP plan, he was later transfered from the general classroom and school to a Theraputic Academy. He is now in a school where they embrace him for who is as a person and he's able to be himself in a environment that is suitable for children with disabilities. He also was able to keep his same curriculum he had before he was transfered. Admitting to your daughter her weakness as well as her surprising strenghths will allow her to know them before any one else does and will increase her self esteem in the differences each person have knowing she's a special Asperger's child.

Mary - posted on 08/14/2012

Thanks Kristin. Wow, your friends daughter sounds exactly like my daughter. Believe me, meds were the last thing I wanted to do. My nephew was recently diagnosed with OCD and his Dr prescribed Prozac and it turned him around. Having his situation to go by, I was more accepting of prozac than I normally would have been. My daughter is starting out on 1/4 of a 10mg pill for 10 days then 1/2 pill then 3/4 till a whole pill. At least the Dr is starting out slow right? I am scared to give her anything but it's all too obvious that she needs something. She is miserable.
As far as Zoloft, I was given that in my 30's when all I wanted was the Tranxene I had been taking for stress My old dr left and this dr thought he knew better, anyway, it had
a horrible effect on me as I couldn't get off the couch and became very depressed. I stopped taking it after a week. Believe me, my google history is full of searches for meds, natural remedies.
The Prozac seems to be making her more tired, but I can't tell if she's just being lazy . She's only been on the 1/2 pill for 3 days now. The dr did say it could take months to see a difference.

Kristin - posted on 08/14/2012

Mary, you are doing great with your daughter. Just keep reminding her of her good qualities, my friend ( who happens to be a special Ed teacher, our kids went to special Ed preschool together) Her daughter is16 and she is now on Zoloft. She hated herself, had OCD, had frequent melt downs, was very stubborn and refused to accept help from anyone. Now that she takes a small dose of Zoloft she is so happy, ans successful in life. Zoloft has also helped my son. I know nothing about Prozac, I really don't know how safe it is with kids, research it -don't take any dr word. We all need to be informed. I am so relieved you will tell your daughter eventually, it will make her feel so much better.

Mary - posted on 08/14/2012

I wish it were that simple.. My Daughter is defiant, disrespectful, hates herself, wishes she would never wake up in the morning etc. it's not like I've never mentioned Aspergers's to her. She knows she's different, yes, but she feels that if others know, her life will be over, her OCD turns little issues into big issues. I stated in an earlier post that I think I will wait until I can see if the Prozac eases the OCD, and then tell her. She is very intelligent, funny,but also very down on herself. She can almost pass for normal at school, aside from her "quirks" that she tries to hide. When I tell her, she won't be anymore willing to tell anyone than she is now, it will just confirm to her that she is in fact a "freak". I've talked to her until I'm blue in the face about her differences and it goes in one ear and out the other. She is just so down on herself, I worry what telling her will do to her mental state. So, here's hoping the Prozac will make her more accepting of it all.

Kristin - posted on 08/13/2012

I'm sorry, I'm new to this I didn't think the first post went through so I started my reply again and had so many details to add, Good Luck and just keep asking people for help and keep looking for new ways to help yourself and your family, and make sure to spend quality time with everyone you love.

Kristin - posted on 08/13/2012

Please tell your daughter she already instinctively knows. You would just give her a name, and it would make her really feel better. She would know that you love and her respect her. Tell her yes she has challenges we don't all have, but she can accomplish anything she dreams in life. We asked the dr to tell jack and us what his diagnosis was, then we talked about the future and how Jack had no limits, college marriage family - all things are possible. Jack knows he can never use autism as an excuse, its a reason he will work harder. Does he have meltdowns yes,does he have lots of sensitivities to food and smells -of course, do we still suffer from strange looks from uninformed people - sure but so what. I teach and have a son with PDD all of the kids and all of the kids with autism that I have met have traits that are part of autism - great memory, curiosity, sense of humor, innocence, love. My husband Jacks sister and I have had to work hard to help Jack accomplish his dreams but we all know he can. We have spent countless hours going to speech, ot, pt neurologists psychologists nutritionist psychiatrist chiropractors. Jack is so worth it and so is your daughter so tell her! One last story, I have epilepsy and it happened when I was 13. My parents didn't tell me at first, when I found out a year later I was furious. I spent 10 years fighting it, refusing meds, having seizures every six month cuz I was an angry teen. I wasted so much time being angry. AS is not epilepsy, but maybe the comparison is obvious, if she finds out later she'll be irritational and angry. Be courageous and tell her, but make sure to tell her nothing changes and autism is never an excuse, it's a reason to work hard and fight to accomplish her dreams.

Sarah - posted on 08/13/2012

I agree.

Kristin - posted on 08/13/2012

She already knows she is different, let the girl know she has AS and yes life will have challenges ( we all have them) but she also has many wonderful traits because of AS - I don't know your daughter, but as a teacher and a mother of a 15 year old with PDD-NOS I have had the privilege of knowing several children with autism. My 15 year old has known he has had Autism sincere he is 4. I never thought of not telling him, by not telling her you make her feel that something is wrong with her. She is always going to be your little girl, remember that, many of the traits you love about her are AS TRAITS! I love my son for many reasons, and a lot of those reasons are part of his autism. He is always helpful and generous, he likes to be with his parents ( can't say that about many teens,) he has a great sense of humor, he knows more about subjects than hold his interest than most adults do. He is respectful and polite. Does life with Jack hold challenges -of course. Life is difficult! We can't go down a cereal aisle ever, have to avoid certain sensory details need a lot of Pre - planning. He paces and bounces around the house like a 180 pound jumping bean, he is constantly washing his hands and showering , and he doesn't socialize with kids and he has melt downs. So what he also is inquisitive polite and right now he is watching the stars with me. He is a great kid. Tell your daughter. Simplify things and enjoy life

Jaylene - posted on 08/13/2012

I was so interested by this! I had my son evaluated for Asperger's at the age of 17. No teacher picked up on his symptoms--merely passed him off as a difficult child. I thought he was bi-polar because he had cycles. It took him being sent to an alternative school situation for kids with challenging behaviors for someone to identify that he had Asperger's. The evaluators asked me "why does it matter?" They felt the anxiety disorder and OCD he has were enough of a diagnosis. One doctor told me he had Tourette's because things he did on purpose or due to allergies were similar to tics. I refuse that diagnosis. But they don't acknowledge the Asperger's although he tested in the "Likely" range. I wish I had known because it would have made educating his teachers so much easier. As for Elijah, he was relieved to have an explanation that made sense. That was very important to him. Does he use it as a crutch? Sometimes. But most of the time he is comfortable with his disability and grateful to know what it is.

Susan - posted on 08/13/2012

Mary, I thought that the teachers would tell the other parents about Jessica's SID. They didn't. It's part of the confidentiality clause in their contract. At the end of first grade, we went to a birthday party. I was pulled aside and asked about Jessica by a mom. She told me she was sure that the teacher had an aide, but her son had told her that Mrs. H was Jessica's aide. I confirmed this for her and explained. The summer between second and third grades, I was cornered by another mom at the library who is, um, filterless (Is that a word? :) ) She told me my kid is weird. I explained about the SID, and she was stunned. She'd volunteered in the classroom and was never warned about Jessica's SID, therefore she didn't realize what she was seeing were symptoms. I wouldn't worry about gossiping teachers.

Mary - posted on 08/13/2012

I thought of that. This is a small town and everybody knows everyone else. The teachers all went to school together and with a lot of the parents etc. I just don't know if I can trust them not to blab to a classmates Mom. I know I have to do it, but it's just so hard to, in her eyes, turn on her. Im frustrated by it all. I think you're right though and thanks for your input. It's nice to be able to vent at others who understand.

Mary - posted on 08/13/2012

I thought of that. This is a small town and everybody knows everyone else. The teachers all went to school together and with a lot of the parents etc. I just don't know if I can trust them not to blab to a classmates Mom. I know I have to do it, but it's just so hard to, in her eyes, turn on her. Im frustrated by it all. I think you're right though and thanks for your input. It's nice to be able to vent at others who understand.

Susan - posted on 08/13/2012

I think if the school doesn't know, they can't help her. I understand that kids want to fit in, to not be different. However, I think it's better to get her the help she needs than risk her ending up in difficulties with her school work. Would you consider asking for a meeting with the principal to explain what you've been told, and to ask about what options are available? This would just be an exploratory meeting to see what they might be able to offer.

Mary - posted on 08/13/2012

Thanks. I don't intend to never tell her. My sister suggested that maybe I should wait and see if the Prozac helps her, then tell her. I would never let her go through life without knowing. She's just 12. I don't know if she'll ever have children, I know she's young, but she has never liked babies. Never wanted to play with her baby dolls. My biggest issue I'm stressing about is school starting this week. I am so torn about respecting her wishes of not telling the school that she needs special attention or just making her deal with the "horror" of her classmates finding out.

Sarah - posted on 08/12/2012

Just remember. She's not going to be a child forever. What if she has a child with it? It's only fair that she knows and be educated on it eventually. I live with an Aspergers woman that didn't tell her kids. Each in their 40's, never received the tools they needed, never graduated from high school, they had kids with special needs, and it all boils down to them not having guidance from their mom who is too proud to let them know that they had AS challenges.

By not telling her and educating her on AS, it can start a generational trend, for decades to come.

Tanya - posted on 08/12/2012

I agree with a lot that has been said. The school should be told of her needs so they can be met and also to ensure her safety. My son's teachers at kindergarten all knew he was autistic and although they had absolutely no experience with an autistic child they managed OK with the help of his support worker. My son is now 5 and goes to a special needs unit in a mainstream school where he gets time in a mainstream class to be around NT children. As for telling your child I really think it's up to you. My son is considered non verbal (asks for things but other than that doesn't really talk) and although I'm sure he would understand, to a point, if I told him he was different, I am going to wait until he is older so I can explain everything to him. They all need to be told at some stage but I think it's totally up to the parent as to when you think the time is right, no one knows your child better than you.

Tanya - posted on 08/12/2012

I agree with a lot that has been said. The school should be told of her needs so they can be met and also to ensure her safety. My son's teachers at kindergarten all knew he was autistic and although they had absolutely no experience with an autistic child they managed OK with the help of his support worker. My son is now 5 and goes to a special needs unit in a mainstream school where he gets time in a mainstream class to be around NT children. As for telling your child I really think it's up to you. My son is considered non verbal (asks for things but other than that doesn't really talk) and although I'm sure he would understand, to a point, if I told him he was different, I am going to wait until he is older so I can explain everything to him. They all need to be told at some stage but I think it's totally up to the parent as to when you think the time is right, no one knows your child better than you.

Melissa - posted on 08/07/2012

As for the school, they need to know in order to ensure she gets what she needs from the school. I agree with what Susan Sterikoff did, talk to the teacher and aide separately in regards to you child's fears or discomfort. They are supposed to work with you and provide the best possible schooling for your child.



As far as telling her what she has, I feel the doctor was VERY wrong! I feel it is in the child's best interest to know. Don't just give her the name, educate her on it. As she gets older she will need to take care of herself and you won't always be there. My olderst is autistic and it is no secret from him or anyone else. He is also disciplined, autism is not an excuse for bad behavior and he is reminded of that when acts out. My youngest has an allergy to citrus, it has so many different things involved that I educated him on what he could and could not eat. I can't be there when he is in school, and didn't want him eating something harmful to him. He now will politely decline anything he might be allergic too.



Knowledge of the diagnosis won't hurt your daughter, it can only make her stronger.

Susan - posted on 08/07/2012

Lisa -

Jessica (my daughter) had a rotten year in kindergarten. She was "diagnosed" autistic by a kindergarten teacher with 1 year of experience. After the meeting that my husband and I were called in to, we called the pediatrician. He referred us to a pediatric neurologist. The pediatric neurologist gave us a diagnosis of SID with muscle weakness and anxiety. Jessica was anxious about school because she was being singled out by her teacher - called "the special child" in front of the class, ... Her IEP wasn't completed until the end of the year, for a start with the beginning of first grade.

I don't know what the kids were told, but I met with the teacher prior to school starting and told her (in front of the aide) that I didn't want Jessica to have special treatment, that she needed clear rules that were enforced and that I didn't want a "helicopter aide". I was fortunate that the first grade teacher was awesome with the whole class, my daughter included. Jessica loved school, cried when she was sick because she couldn't go to school that day. What a turn around from the previous year when she'd cried and pretended to be sick to get out of going to school! We had the aide for 1st, 2nd and 3rd. I was pulled aside by parents a few times to ask if Mrs. H was Jessica's aide or the classroom aide. I clarified that she was Jessica's aide but was free to assist other students as needed when Jessica didn't need help, and explained Jessica's reason for having an aide and offered to answer any questions they had at any time. For Jessica, and her classmates, it has been a very positive experience after that rough start in kindergarten.

Last year, at the IEP meeting in March? April? I asked them to give the aide a break at lunch time. I was volunteering for Chess Club, which is 1 day a week, almost every week, from October through spring break. I noticed that the kids were hesitant to socialize with Jessica and that she was burying her nose in a book if she couldn't find a chess partner. If there was a chess partner, things were inhibited with the aide standing nearby. I started putting Jessica at the peanut-free table to make up a second game. Her aide didn't go over to that table, and she quickly made friends with those kids. She probably did need some help from her aide at lunch in first grade, but had outgrown needing all day help. We're in the process of reassessment, and are going to ask for an aide for mornings to help her get started and get through the first few transitions of the day. Her teachers for 2nd and 3rd grade advised that she needed an aide only about 10% of the time - mostly mornings and fire drills (2/month).

I have seen very few kids treat Jessica differently. I spoke to the Girl Scouts before signing her up for it. They were totally cool, and the leaders were fantastic.

Lisa - posted on 08/07/2012

My 5 year old recently got diagnosed with high functioning autism (as Asperger Syndrome will be called when the new DSM-5 comes out next year) and we are still struggling with this too. His kindergarten teacher and the support teacher think we should tell him. They also think they should tell the class so the other students will understand why he has an SEA with him all the time. Also, they tell me that if they are told in kindergarten, there is a better chance of him being accepted as the little ones have greater compassion than you see in older children.

They recommend that Lyric (my son) be out of the room when they tell the class and show them a short video on AS. And that we tell him too. But, we don't want him to use it as an excuse for bad behaviour. However, we have pretty much decided to tell him and I've purchased some books to read together. I think, ultimately, he's going to find out at some point and why not take control of that experience and make it all positive. He can own his disorder and maybe won't be teased about being different as much.

Mary - posted on 08/07/2012

My daughter has SID also. I thought that went along with ASD.
She is very self conscious and socially inept. She doesn't want to tell people why she does the things she does. I guess she'd rather the kids just think she's weird than to have them think she's weird with a disorder. It's so frustrating for me to try and make her understand when she is unwilling to even try. She "would die" if I told the school.
When she was in 1st, 2nd and third she would have melt downs over change of routine. When she was called out by the Reach teacher to a different room she would act out and I'd have to be called to come and calm my hysterical child down. We stopped the "special room" visits and her behavior got much better. I still tear up when I think of seeing her being held by the arms in a chair, tears streaming down her face. She had IEP's until the 5th grade when all seemed to be going as well as I could expect.
So if I told the school, she would feel more like a freak than she already does. I don't understand it at all. She has fought me on every thing I've done to try and help her. I took her to a social class and the teacher said she was the first child that he could not help. I took her to an OT for the sensory thing, that was a bust as she felt like they were treating her like a baby and made her feel like she was crazy. Her doctor said that no kind of "therapy" will help her right now due to the state of mind she's in.
If I told her....I don't know how she would react. As far as wanting to get out of things, hmmm, I don't think I allow that now, so, not sure how that would go.I really don't know. My sister suggested waiting to see if the prozac makes a difference and then telling her. I've told her that telling the school will make her life there easier ( this was before the official diagnosis) and the only response I get is, "I don't care, I don't want anyone to know"!
I'm so frustrated and don't know what to do. I guess I need to stop listening to her reasoning and listen to my own. She only has one good friend and I'm afraid of losing her.
Hopefully her Dr will be able to talk to her about it. I know I'm bouncing back and forth but I'm typing as I'm thinking of different things. :)
I wish all teachers would go through training for these issues.

Susan - posted on 08/07/2012

If you tell her, what do you think her reaction will be? Will she use it as an excuse to get out of things she can do, or say that she can do anything she sets her mind to, and show anyone who doubts her that this isn't going to stop her? Maybe you think the latter while her doctor worries about the former?

As for telling the school, I think that may be helpful. Sit down and think for a bit about what, if any, considerations or accommodations your daughter might need, then go talk to them. A 504 plan (school specific) or an IEP (for school, goes anywhere if you move) might be suggested by them.

My daughter has Sensory Integration Disorder. She knows. She doesn't use it as an excuse, but she is able to tell adults if needed why she needs something. She has an IEP. There are things that she needs, that other people might not think it worth mentioning, but we do. A ticking timer during a timed test or reading period drives her nuts. We ask for a digital timer instead, and offered to provide one. She needs a quiet, well-organized classroom vs one where there is a lot of noise and disorganization. She has noise-canceling headphones for fire drills. Do you know what set off melt downs in the past? If so, maybe identifying the triggers and looking at what you, she and the school can do to work on minimizing triggers might help.