aspbergers, pddnos, autism, hf, etc.
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| Sun, 12-17-2006 - 9:24pm |
Hi all,
First I don't mean this question to offend in any way. That said, I can't help but notice whenever I read through posts, talk to different people, and watch shows about autism, I don't understand why so many people are saying that their child is aspberger's vs being hf autistic. I guess I don't understnd how one child can be dx with aspbergers and be totally non-verbal, while the true definition of AS is not this way. I am talking about how some kids seem to be more hf autistic than aspbergers.
Does anyone else think this is overused? Look, I just feel sometimes like my child (and her consultant feels the same) has TRUE aspbergers compaired to a friend of mine who tells everyone her son has AS and he is at best maybe HF autistic as he is 9 and still non verbal.
All I'm saying is that I just think that it is easier for parents to say their child has AS and not autism. Anyone else feel this way? I mean by the time I tell my friends/school officials about my dd's dx of AS they look at her like nothing is wrong compaired to this other child who can't even speak! I feel like it distorts her ability to get really good help at school because they can't see her problems.
I feel like I'm about to explode all over this nice family because of this so before I do am I wrong? I'm okay if someone tells me I'm wrong. I'm getting to the point I can't hold my tongue anymore!!!!!
sorry so long-
Jess

Hmmm, well we have had similar conversations here lately but I gotta say I have never seen this particular issue before. Could it just be this one family? I have never met nor heard of a child with AS who was non-verbal.
However, this still relates to a post I made earlier. For us the term Aspergers often seems to bring up this "well at least it isn't autism" type response. I don't think if I had breast cancer someone would say "well it is mild because at least it isn't a brain tumor, what are you complaining about." Yet that is the attitude I have gotten in the past but it is getting better.
I have 2 kids who are ASD and typically I refer to them as ASD. My dd is more classic aspie but she did have a language delay. She would be considered right down the middle moderately impaired aspie. My son is a more severe aspie and it is up for debate if he is AS or autistic. Some say one, some say the other. I am in the process of waiting for a definitive. I typically go with autistic when explaining him to strangers though because I feel it fits him better and he does stickout in public as different most of the time.
Autism is autism is autism whether it is more academically able and verbal or non-verbal. I totally admit I don't have to deal with some of the issues parents of children with more classic autism have to deal with but then again they don't have to deal with some of the stuff that we do. I don't have to deal with some of the stuff that my friend with a BP son has to deal with etc.
Again, we all have our own struggles and they are just as valid as everyone elses. FOr some reason in autism we have felt the need to do this comparison thing unfortunately.
These are just my off-the-cuff thoughts, but here's what I thought when I read your post.
First, for some of us, it is so hard to get a diagnosis in the first place (my kids are mild, but it was over ten years before I got anyone to believe anything was wrong with my kids, and we still don't have an "official" diagnosis tho' we have a couple of tentative dx from docs while waiting for formal testing), and since the diagnosis can change over time depending on how the kids are functioning, and since it depends on what doctor you see, etc., it could just be that this is the best diagnosis that family has, and they believe it.
Another thought I had is that before I had a tentative dx from doctor, I'd done some self-dx for my kids, and I came up with PDD. I used that term for while until I got a better tentative dx from doctors. It's possible this other family is doing something like that.
I'm sure it IS frustrating and aggravating when it makes it harder for your child to get appropriate services, but it's possible that this other family is doing the best they can with the info they have in trying to get services for their child, too. I think the bigger problem is the lack of education in the schools, so the staff doesn't understand how impactful your dd's issues are to her, too.
Best wishes.