To tell people or not?

[Hedgehog Instigator]

Thank you all for your excellent responses.
I basically asked the question because my little one on one occasion went to a mother and toddler session with her Nanna (who knows but doesn't really understand ) my little one wouldn't go again but wouldn't tell me why. Anyway one if my clients a retired trustworthy private school teacher mentioned she helped there. So I got talking to her about my little girl and told her about her Aspergers to see if she could help me figure out why my little one wouldn't go again.
It turned out there is an older lady who helps but is very particular about how the children there do certain things. Now this will be the reason as my little one will either like or dislike someone and that doesn't seem to change.
Waffle sorry
So I was excited that I could now work and help my liitle one with this and told my wife who is now not talking to me because I told my client about our little girl.
On the plus side i got my little one asleep tonight at midnight. It's now three am and we are up again watching DVDs.

Apologize and make an ok, not ok list, that way there is no further confusion. And I gotta say as a once child with disabilities, I had a terrible time with teachers not understanding my disabilities; however particular old ladies can really only be avoided best of luck.

 

[Irkoutsk]

well jamse I understand what is your feeling right now cause when our children(I don't have children) got a diagnosis of something(whatever it is) it makes us crazy as parent you know. I'm not sure my English is ok now. But you have the best wish for the future of your 3 years old children from me and I hope you the best and I understand your worries(??). You are welcome on this forum for more information in the future.

 

[jamse37]

Thank you.
Very good English by the way

 

[AsheSkyler]

I'm on the "need to know basis" wagon. Teachers, employers, other such people who really need to know what they're up against, yes, probably need to know what makes you tick. Students I'm leery of because children can be pure evil and a disability is easy game. I hope for the sake of your daughter, she has nice classmates, maybe even one of those groups that get protective of their fellow classmates and work together.

 

[photoaddict]

I'm a big fan of empowering, once they're old enough to start speaking for themselves, too. At 3, she's a bit young for that, but it's something I would encourage as she grows. She will need to be able to advocate for herself as an adult and it's good to have the opportunity to practice as she's growing up. My brother wasn't diagnosed until adulthood, so he had to learn to advocate for himself while trying to learn to navigate being an employee and adult at the same time. That made everything much harder.

Giving her the control over it, as she gets older, also allows her to decide who (outside of teachers and doctors who have to know) finds out and how much they know about it. She may want to tell her friends. She may not. Part of that will depend on how you talk about it with her. If you make it sound like a bad thing, she will try to hide it and be more ashamed. If you're matter of fact and help her find the good in it, she'll be able to fully accept it and be more comfortable with others knowing.

If you'd like to see how one awesome mom handles her daughter's diagnosis and life challenges, you can check out this FB page. Her daughter is older (9?). She's taught her what autism means, the good and the not so good, and that there is no limit to what she can do. She's starting to learn to advocate for herself and sees her autism as part of what makes her so awesome. I liked the page a while ago and her posts always make me smile.

 

[DogwoodTree]

I wonder what your daughter clues in on to like or dislike people? Any ideas?

I've been like this all my life, too (I'm 41 now), but just figured I was being ridiculous and mean, and made myself seek out time with people I didn't like, which left me not having time to try to make friends with people I did like. Still don't understand what's going on in my own head on this...

I'm sure your little one isn't trying to be mean...so it would be really interesting to understand better what she notices about people.

 

[photoaddict]

I've found that I tend to have a feeling about people when I first meet them, too, but I have no idea what it is about them that makes me comfortable or not with people. There's not any behavior or physical characteristic I've been able to pin it to. I do know, though, that most of them have proven my gut feeling correct with a little time, so I try to trust that instinct. It's something I would strongly encourage in anyone who has it.

 

[jamse37]

I wonder what your daughter clues in on to like or dislike people? Any ideas?

I've been like this all my life, too (I'm 41 now), but just figured I was being ridiculous and mean, and made myself seek out time with people I didn't like, which left me not having time to try to make friends with people I did like. Still don't understand what's going on in my own head on this...

I'm sure your little one isn't trying to be mean...so it would be really interesting to understand better what she notices about people.

I am very OCD with anything I am interested in so as you may guess my daughter fascinates me.
I as yet can't pick up at all why she doesn't like some people
One time a lady turn to her to and spoke to her and I will never forget the look of fear in my daughters eyes as she turned to me. In those situations I pick her up and she cuddles into so so tightly to hide.
I am her security blanket. She has nothing else as one.
The lady looked really concerned and asked if she was ok to which I just replied yes she is fine.
Hopefully in time I will be able to understand more about who she likes dislikes and the big Why?

 

[alien girl]

probably should tell. people judge me because they dont know i have it. i make mistakes that autistic people are prone of making, and people dont take it very well. they'd be more understanding and less judgmental.

 

[AdamR]

I'm a father of three, so for your question, I tried to imagine what I might have done had I been your place.

I believe I would be open about it, actually. You may not always get the responses you'd prefer, but by being open about things from the start, your daughter will never get the impression her AS is something shameful that needs to be hidden (and you did say she "picks up on everything"). For every person who might be put off or discriminate against her, there will be others who will gladly understand her better for it. As I see it, the more people who understand a bit about AS, from real-life examples, the better the world will be for your little girl in the future.

I agree with Spinning Compass that the worst way to inform someone new would be whilst your daughter is in meltdown mode. I had a woman apologise to me in an airport once, as her son with ADHD was having a tantrum. She looked tired and harried when she told me why he was acting as he was, and I admit, that scene has stayed with me with "This is ADHD" as a caption. But if you mentioned your girl's AS casually, at another time, as though it's no big deal, she can make a positive impression that may help educate a mind or two. For your part, though, you would want to make sure you're well-versed enough about AS to be a good advocate for her. If people ask questions, you'll need at least a few answers or the opportunity will be lost.

 

[Etzelaire]

Gather info you think is crystal clear and tell that to maybe the parents of the toddlers your child plays with and I think there's nobody else envolved at an early age.

 

[jamse37]

Thank you all for your replies. Both sides of the argument. I appreciate it.

 

[jamse37]

On the bad news side of things. Received a letter today from the hospital and for the fifth time they are refusing to see my little one ( our gp is onside and in agreement with us ) so our gp will again be fuming and again writing for an appointment to get an official diagnoses.
It is all because of her age. My sis has an autistic daughter and she was seen at three and a half by clinical psychologist who told her direct she wouldn't get a diagnoses until she was six.
It sucks big time!
Every day we are missing giving our daughter The help she needs because we are not experts and font know what we should be doing.
I will continue doing as much research as is humanly possible and carry on the fight against these so called experts that love nothing more than their big wage!!!!

 

[DogwoodTree]

Every day we are missing giving our daughter The help she needs because we are not experts and font know what we should be doing.
I will continue doing as much research as is humanly possible and carry on the fight against these so called experts that love nothing more than their big wage!!!!

Even a dx wouldn't give you an "owner's manual" on how to raise your daughter. She's unique just like each one of us. No one fits the book description exactly, and even if they did, no one has all the answers on what works for each of the problems we face. Especially at her young age, the "experts" just don't have a lot of ideas on how to fix things.

Read up as much as you can on any dx that seems to fit some aspect of who she is, and read up on what solutions people have developed, and then tailor your parenting to your daughter based on what you're learning. You're her parents. You know her better than any expert. Trust your instincts and your love for her to guide you toward what she needs from you. You're going to mess up. But obviously you care greatly about meeting her needs, and that will come through to her.

Work to empower her to be who she is, and to get along with others in this world. Help her get in touch with reality, both internal and external, and just love her for who she is.

As a homeschooling mom, I firmly believe parents are the best experts and advocates for their kids. You don't need a dx to make adjustments to your parenting, and the "official" experts don't have much to offer her yet anyway. It might be more beneficial for her if you focus your efforts on finding the solutions within yourself, within your family, rather than looking for someone outside who has "all the answers". They don't.

 

[jamse37]

Thank you
I agree totally with you

My major major worry is school

Without an official diagnoses we won't be able to get our little one any help in school And the way she is I know there is no way she could cope (or even how we could get her there) with school.

I have given homeschooling serious consideration but there is no way we could afford to do it

 

[Juturna]

Most of the time I don't tell anybody. Nobody needs to know, really. Except for ya know, people like doctors, and teachers (mainly for accommodation reasons). However, if I knew one of my Aspie traits were to affect something I do on a large level, then I'd be more open to telling somebody. (I.e. telling a boss, or somebody else I'm working with when what I'm doing is going to be affected/or I need help/etc.)

If you're daughters still young/struggling with many things, I would definitely tell people that would be directly affected by it (i.e. teachers, care providers, etc). Of course it's really hard to know who will take the information into consideration, and not treat them just as somebody with their condition. (Which is a problem I've run into. I may be diagnosed with something, and of course I may need help/accommodation with things, but that's not who I am.) Personally I say screw it to anybody who doesn't treat me like I should be treated, but it's definitely differently dealing with children, or people who's Aspie traits may have more effect on their behavior or don't yet know how to handle things etc.

Generally though it's a very gray area, and I don't really have a solid answer since it's, as others have mentioned, mostly on a case-to-case basis on whether to tell somebody.

 

[AsheSkyler]

My major major worry is school

Without an official diagnoses we won't be able to get our little one any help in school And the way she is I know there is no way she could cope (or even how we could get her there) with school.

I have given homeschooling serious consideration but there is no way we could afford to do it

In what way? Is the homeschool covering in your area really expensive or public school fees really cheap? And/or are both of you working and one of you would have to stop working and that would drastically cut your income? My mom was already a stay-at-home mom, so it ended up being cheaper for us to homeschool.

 

[DogwoodTree]

Some states in the US provide free curriculum for resident homeschoolers. That doesn't help you if the job thing is an issue, but if one of you is a stay-at-home parent already, homeschooling doesn't have to add much expense at all (certainly cheaper than daycare).

 

[Shannon Beech]

Like most have said I think it should go on a need to know basis. Your daughter is still young so I think it will be best to hold off on telling people for now until you can see how she develops a little more. In my case I was high functioning and therefore I wasn't diagnosed until after college. People just knew me as being a little bit quirky but I didn't stand out as being very strange. I would say wait till your child has more interaction with other children and see how she fares. Her early school years may be a little awkward but if she's not having any learning problems it may not be necessary to tell the school that she has aspbergers. If she's okay education wise I would just focus on therapy to help her deal with social development.

Basically, I'm saying that you should wait a little longer until you can properly gauge where she is on the spectrum. It could be just as damaging to put her in special ad if she doesn't need to be. As far as telling people she has autism the way I do it is I try to get a feel for people of what they're like, and from there I decide whether not to tell them.

 

[Gary Reese]

Been there done that. If it were my daughter, I think I too would avoid that person.
You may not think your showing emotion but you are. Your daughter picks up on those signs. I know I do.

At her age I think it is need to know. Few people know anything about aspergers.