DD with LD and language disorder.

>myself to anyone, it would just be helpful sometimes, for example when she does swimming lessons. If I say, “She has a language difficulty”, the usual response is , ” She speaks just fine !!” ( IE, the language problem has to be articulation or noone’s ever heard of it !!!!!), and therefore her problem with understanding, following directions etc MUST be a discipline problem, and therefore I must be a very poor fish of a Mum ( or Dad if she’s with her Dad).

Perhaps saying somethign like “she has trouble really understanding you”
“she has trouble following directions and needs everything broken down into little steps”. And/or “even though she can pronounce her words well, she cant’ really express herself as well as the average kid”. Don’t give them diagnosis info— give them *descriptive* info. Things like “she can’t find words to say certain things”; “She often acts out on her feelings because she doesn’t know how to put her feeligns in words. BTW, there are some things to do with this. For my nephew, who has high functioning autism, at a young age they gave him a badge with colors on it. One side was red and one was yellow (there was also a green sheet he could use). If he didn’t want anyone to talk to him, was very upset he used the red side. Yellow meant “approach with caution”. Depending on the age and functioning level you can use a stop light, words or hand signals.

>The assessment place who finally recognised her ‘disorder’ is extremely ‘anti-labelling’ so I can’t ask them for an explanation. An Autism assessor, who’s extremely well thought of here, said she was not ‘severe’ enough to be formally dx with Aspergers, but he wouldn’t be surprised if she

I don’t now why (aside from the anti-labeling premise) that they can’t use OTHER dxes, such as autism spectrum (meaning somewhere on the spectrum— not specified) or PDD-NOS (means pervasive developmental disorder not otherwise specified) meaning doesn’t quite fit all the criteria. Personally I like the autism spectrum thing. It would get rid of all these wierd little off shoot dxes.

Perhaps she isn’t too AS as she is a girl. No kidding. Girls are different and often a bit more social than boys anyway, and this shows up in autism as well as everything else. Might want to see Barbara Kirby’s page:
http://www.udel.edu/bkirby/asperger/

>exhibited more severe manifestations of AS when adolescence hits. So he wouldn’t formally dx her as AS, but said treat her as if !! She fits the AS profile very well, if you live with her 24/7. This dx would be a very convenient ‘label’ to save me a lot of hair tearing trying to explain her to ppl., there’s a lot of knowledge around here where I live due to various reasons. Of course, I don’t just want her to have a formal dx just for my convenience ! I’m not looking for an internet dx, either, just some suggestions, please.

Well you might just tell people she is. Nobody is going to say, where did she get her dx, etc. It might save some time. It won’t help with school I’m afraid. Maybe you need a different doc.

—des

I agree with des, here.

For the public, just go with what is simple. Throw out a Dx and follow it up by saying “so that means that then you talk to her you need to ….”.

I do that with my son. He asked why I and I just explained that people we don’t know very well don’t have time for the whole story so a brief thing like that helps them to understand. He’s ok with it. He’s 10.

I belong to a group where most of the parents tell the kids about their autism at a pretty young age. My nephew knew at 6 or 7. One time he was acting up in the car and I turned around and said “that isn’t autism”. He was just shocked out of his behavior. :-)

We have/had a very neat relationship based partly based on this. Since he understands it a bit better than most kids he understands why he likes to stim, has a consuming interest in one subject, etc. In the past at least it has been an important part of his identity. Now he’s a teenager though and wants nothing more than to conform. I don’t understand him in this because I never went thru that, and never wanted to conform.

—des

Hi Sue,

NLD or “Non-verbal Learning Disability” is often thought to be a first or second cousin to Asperger’s. My son has been diagnosed with it, and there are many fine and helpful books on the subject. Reading them helped me understand my son better, and allowed me to help him better.

Good NLD sites, with good articles:

www.NLDontheWeb.org (this site also has a good forum)

www.NLDline.com

The books are [u]The Source for Non-Verbal Learning Disorders[/u]by Sue Thompson, and [u]NLD at School[/u]and [u]NLD at Home[/u]by Pam Tanguay.

Lil

You could also use auditory processing disorder for a child with a severe receptive language delay, but most people don’t understand that either!

Janis

If you are all comfortable with it you could use AS as an explanation, since I think many people know what it is. We use the word “dyslexia” with our 9 y.o. son, and with other people . What I usually say is (like to a new camp counselor or soccer coach) ” My son is dyslexic. That means he may not understand directions correctly, or may confuse his left and his right. I’m telling you so you know that he’s not trying to be difficult if this happens. ” So far so good.

If you feel AS carries a stigma, or isn’t an accurate description you could just say “my daughter has a learning disability and it means….”

First off, you really don’t need to explain or justify anything. There is no reason to care what other’s think and most people don’t need an explanation.

If you come across someone who needs to have something explained then just explain based on the situation and you don’t need lables. For instance, if it was a swimming coach, I would say, “You need to physically demonstrated the way to move because she learns better that way rather than through a vebal explanation.”

If you gave the coach a label more than likely they wouldn’t understand it anyway. The confusion could lead to them treating you daughter worse rather than better. This is my personal experience. Kids have a way of living up or down to expectations.

An intelligent parent that can give common sense advice to other adults on specific actions to take to help your child speaks volumes. Labels just say, “The kid has a problem.” which can lead to lowered expectations and sometimes a disincentive to make true effort to help.

I haven’t really come across many who truely understand LDs enough to take appropriate actions based on being provided a label. It would be nice if the world did understand but the truth is most don’t.

Thank you to everyone for your replies. I really appreciate them. You’ve given me much food for thought. Thanks again. Sue D.

You might just say ’ If you find yourself needing to repeat things to her, please know that she sometimes has trouble understanding what’s been said to her. It’s a processing disorder.”

Or

I should warn you that sometimes she has trouble understanding what’s being said to her even though she speaks to you very well.

Good luck