Labels - for our child what does it really mean

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When I was talking to my daughters doctor about getting hee assesed since she was showing austic spectrum behaviors she made this statement and I am still wondering what she meant by it.

" make sure before we decided to go to a neuro doctor that you are ready for her to be labled"

She is a good doctor so I am sure there was some reason she wanted me to really think about that But I am not sure what the label means ...

to society, schooling , etc, is being labeled a bad thing or is it open doors to qualify for some help so she can get the help she needs now.

Parents that have had there children labeled - Do you know what she was trying to say?

It’s a lot of questions, all at once.
How old is she? If she is in high school, she should probably be consulted.
If her difficulties are mild, there might be no practical benefit.
Depending on school culture, there could be a severe stigma.
Depending on school culture, their idea of “intervention” could do more harm than good.
Some people talk about insurability later. I don’t know the details on that.

Yes, I know what she meant. A diagnosis, a label, that will live in a medical file forever, and we don't know at this point in time what that might mean at some future date. Will employers will be allowed to discriminate? Will insurance companies will allowed to charge a higher premium? There are unanswered questions there. But if there is need, today, then you just skip that part and move on. If the need is borderline, you ask.

We have a school use diagnosis provided by the school. It gives us an IEP and accommodations at the school, and that is all we were ever looking for. We've been told we should confirm it medically but I stopped and asked, why? I know the diagnosis is right, and at this moment the school is meeting our needs. In other words, we are extremely lucky. So I got to ask the question of if we wanted a label that would out live the school years, and decided not to make that choice for my child, simply because there is no good reason to. Few parents have that luxury, unfortunately.

Someday the label may be needed to access social security or disability. If that is the case, my child can be diagnosed when he is older, because if he has such needs, the AS isn't going to suddenly become invisible. But I'm hopeful he'll never have such needs, and he'll get to decide if he wants to embrace the label or say good bye it depending on how things are for him as an adult.

I do think of it as a luxury, that we can leave the label off the more permanent medical records and still have the world accommodate our child's AS. If we weren't getting those accommodations, I'd be forging ahead without the medical label, because the accommodations at this point in time are necessary.

So, that, basically, is the question. What is the label going to do for you that could not have been accomplished any other way?

She is 4 and her doctor wants me to put her in day care to help assess her compared to other children in her peer group.

I cant afford to put her in day care volunteerily - so... I am looking for a pre k program she will not be eligible for Kindergarten intil 2011 - since she is a late in the year child.

What ever it is it is mild. The sensory issues seem to cause her the most challenges. more then social at this point.

Anyone here used Child find organization program for early intervention - in Jan I hope to have her assessed.

She is a child that needs to be shown how to do things. every step of the way and gives up and gets frustrated if she cant do it the first time . You ahve to sit and walk her through it before she can get beyond that and keep trying.

I am a single mom and have to work so I have limited time to help her as much as I know she will need. I have some family helping but I think she will need a bit of early help. and then she should be fine in my guesstimate.

time will tell.

What do the grandmothers and other older relatives think? Is this child's behavior normal or common in this family? What could the child's parents and other blood relatives do at the same age? Does anyone have home movies? The old-fashioned attitude was that they would grow out if it, and they usually did.

I really believe that at least half of the kids they put in "early intervention" don't need it, and that it does more harm than good. It's just glorified welfare for under-employed social workers.

Knowing about Asperger's is good if it makes the parents more tolerant, and allows the child to blossom in her own, unique way.

Can you find an informal playgroup? Some local churches and other organizations have them.
If so, you can assess her yourself. If you don't see a problem, it's probably not there.

By the way, there's no such thing as "quality" daycare. It's just a warehouse.
The fact that the kids hate it is the most important indicator.
A real preschool program can be good, if it's NOT attached to a daycare center, and if it's
the kind that only lasts for three hours or so, and expects you to come and take the kid.
Best of all would be a "cooperative," which asks the parents to take turns assisting a
certified teacher. It's a totally different attitude that can not co-exist with a warehouse.

this is my fouth child - so I know about norma development - i would not have talked to a doctor or be here if i have not already seen alarms - Do I fully know what they are caused by ? NO.... some of these symptoms can be signs of other things.

I had LD's in grade school - that were not detected until I was late in the game. unfortunately that had only inforced in me that I was stupid. which I did not overcome until I was in my mid 20's when I graduated with a 4.0 and was tested with an IQ of 138. that is not by anymeans Born to be stupid.

It was emotional reasons I had the Ld's for me.

I agree child care is scarier then leaving them alone. I have had many more bad experiences with that then good.

that is why I chose years ago to work at home which is very difficult. and be with my children rather then farm them out. it was a chose of being less off andvery tired. but It is much better then anything a master card can ever give.

those years with your children go away fast and you cannot ever get them back.

For what it is worth, I think I agree with EVERYTHING said on this thread so far. From what I have heard, schools, even with an IEP, etc...., are often JUST as bad as my schools were. I was in a regular school, and not diagnosed, but I DO have skewed senses, and have said that for a LONG time.

Try to get some friends for your daughter, and see how she relates and talk to her later. Let HER decide. As for the sensitivities, try to get whoever to understand and take it seriously. I think you will have trouble no matter what.

Good luck!

labeling also means a label that she will have to live with knowing she is different and sometimes that has a negitive effect on self concept. I know how this feels. When I was in grade school, I felt sub-human because I knew there was something wrong with me because I was always at the doctors office, and had special treatment at school. When I was a teen, all I wanted was to be "normal" because I felt so weird. In my 20's, I came to accept that autism is just a part of who I am and it is my strength as well as my weakness. But sometimes I wished that my parents focused as much on the gifts of autism as they did the curse of it.

II heard someone say that they thought schools focused too much on the deficiencies and not enough on the strengths - Which everyone has NT or ASD

I am not sure what to do with this information actually - there is so much emphasis on early intervention... and then I hear what you say and wonder. I am a person who likes being grounded in the truth. even if that truth is not good.

If i know I see the world different then I will not look down on myself or others for seiing things different. I had Lds in grade school. and they did not get detected until I was in 5th grade and with a little extra help, I went from a 3rd grade reading level to 7th grade reading level in that one year. BUT the damage to my self esteem was done. I thought I was stupid.

thank you for your insight. this seems to be a complex issue and will depend on the level of real help that is available in my area it sounds like.

I think that the doctor, willing and able to comply, only wants you to be aware of the responsibility of a "label".

Upon entering the school system, that label will have you and her talking to "teams", social workers, special ed teachers; defining special needs and placements, drawing up plans etc.
The other children will quickly realize that your child is different.
Children aren't kind to those who are different.

She will continue to be assessed and accommodated throughout her entire educational career. That's 13 plus years. If she needs special consideration to make it and get her education, then it's fine. But if she might possibly be able to make it mainstream, then she might find those allowances embarrassing or otherwise problematic.

However, you know your child best. Problems are often minimal in the early years, and in daycare her symptoms - at first glance- could seem like 'no big deal'.

Weigh that with the fact that early intervention can make a big difference. Not just in her social skills, but in her self esteem, her opinion of herself, her success in learning.
If she doesn't get the "label" and begins falling behind in school and socially, that will hurt. She won't understand.
If she does get the "label", and the special accommodation and attention that goes along with it, she might excel in her studies, make friends (in a lower student/teacher ratio classroom), and feel altogether that school is "okay". Not knowing any different.

It's one of those hard choices you have to make. Look to her future to help yourself make it.

excellent synopsis! Vivienne

I think you are right it is a delicate path in both directions and One I will have to assess. carefully

Thank you all!

My son is 11 and he was diagnosed at 9. He always took pride in being different. When diagnosed, he didn't understand for a few months, then he accepted it, and now he takes a certain amount of pride in the "label". He does not tend to tell other, but then he doesn't tend to tell others much of anything that is not related to Legos or Star Wars, which is just who he is. This website, and I hope, my attitude, have influenced him to see himself, and therefore his diagnosis as not a bad thing.
Also, of the three friends my son has, one I know has Aspergers, and one I strongly suspect does (they met at social skills group....). My son delights in this.
My son's behavior also improved significantly after being labeled. I think it gave us both a stronger sense of what we could control and what we had to accept.