Labels, HFA, AS, ASD, Renee?
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| Fri, 06-23-2006 - 9:00pm |
Hi Renee,
I saw your post on the ivillage autism board and I thought we might discuss it here too, if that is ok? I hope so.
I have the same question as you and the same predicament. I am around many parents of children on the spectrum who are not AS or HFA and they do not like the HFA term. Like you, I actually do not either, as Jerry Newport says, "it sounds like a washing machine cycle." So I can see how it might upset someone.
I guess it seems like with people who do not know anything about ASD, to say HFA, AS or "mild" is useful. They don't have a personal reference point. But to people who already know about ASD's, especially if by personal experience, they can see your child and make an assessment and don't need us to give them a qualifier to a label.
But my son is so confusing, even to professionals. Only those professionals (and us parents) who knew him as a baby really get it. He was originally diagnosed as "HFA" and he had so many deficits. No speech, lots of stimming/sensory, he just got the HF (as opposed to just "autistic") bc he seemed to have receptive speech and was in a small way attached to us. Fast forward to a year later, after a year of early intervention. He got a new dx of "PDD-NOS" since he really caught on to speech, (but after a year of therapy) and was starting to be really social, although with lots of confusion--kind of like the extraverted autistic personalty Paula has described. Fast forward to now. If you saw him for the first time as a professional, you'd call him AS. His speech is huge. He's quirky, but very "professorish" yet still can have major sensory issues on a bad day. Plus, he did originally have a pretty bad language delay, though no one could tell it now, so he can't be AS, technically. But he regressed 2x before and I worry like h--- about that and it happening again. Is he HF or PDD-NOS, who knows? Does it matter? I am not sure. Our neurologist, in letters etc. (like to the school about IEP's)seems to prefer "ASD" but in medical things, he feels the dx is "PDD-NOS" and I guess I see his point. But it is revealing how he even changes the labels for the occasion.
So as a mom, I see it's all alphabet soup. He's a puzzle for sure. He could swing anywhere from HFA, to PDD-NOS, to AS (although technically he cannot be that) on any given day. But in the end, his brain works like all ASD kids. So I guess it is easier to say ASD.
The other day I had a really strange experience. At summer "arts therapy" camp, a place that is a therapy center but very small and ASD parent run (not where Eric gets his regular ST and OT) the counselors (who are ST and OT therapists) say things like "Eric is a dream." "Eric is so verbal." "Are you sure Eric is ASD? I just don't see it." I don't know what to say, he's only bben there 3 weeks, but then today there were problems and they said, "Oh, now I see." That's kind of like Eric's life story. He might be able to "pass" for NT for a little while. But his brain is wired differently. Nothing will ever change that.
So I am off topic, I guess, but I do find it confusing to know what to do not to offend other parents, whom I respect and empathize with more than anything.
On another board I read, a parent wrote that she herself was AS, but "normal" although she had children who ranged across the spectrum. She was keen NOT to label them at all. Feeling that they have to live in the NT world, but yet she admitted that things were hard for her as a child.
I did read the thread on the other board, but wondered your other thoughts, Renee.
I hope this makes some sense.
Katherine

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I've been reading and loving this discussion.
We have a hard time with figuring out where Weston "fits". He'd had an eval by an educational psychologist at age 3-- a basic screening, that stated he refused to cooperate and had SID difficulties (in reality he wouldn't do anything they asked him to do and sat w/ his ears covered the whole time-- they poo pooed our concerns over his language dev, because we said he talked in sentences) we got basically nothing out of this eval except that he had to cooperate or they couldn't do anything. His eval (at age 7) by the next psychologist said probably AS but certainly on the PDD specturm,(but she was an educational psych and not well versed in the ASD stuff,) with significant language delays and severe SID. His last eval was at age 8 by a psychologist that worked specifically w/ ASDs. This eval placed him on the moderate to severe ASD scale but high functioning verbally w/ a high IQ. This psychologist mentioned that he bordered on the savant in that his math abilities were so far ahead and his sensory and social were so far behind.
In some situations he seems very nt. however as soon as he starts to interact w/ kids his own age you immediately know something isn't right. He has the "little professor" speech but when stressed his speech becomes stuttery and stilted. He's able to hold lots in (he rarely tantrums in public anymore) and cover even tho he doesn't understand lots of things. But, he certainly has lots of issues that are becoming bigger and bigger as he gets older. He's also learning to ask questions when rather than just cover when he doesn't understand things, which is a HUGE step.
We have several families in our church that have kids that are on the specturm. Weston actually has a more "sever" Dx than one of them, but he's more able to function in the nt world than this other boy. I think it comes down to receptive language and how well Weston has responded to therapy.
I find the DSM criteria to be difficult to understand and I think that Weston fits too many places. because he had some language delayed they say he can't have the AS label, but then others say, he had a few words at 2 and a few sentences at 3 so he does not fit in the autism range. but when they look at how he used and uses language he falls into the autism range. it's all so confusing. AND it really doesn't take into account how SID effects the child. Weston has severe SID but with lots of OT and lots of work at home he's become less sensitive and is able to use methods to cope.
When I talk w/ the other mom I feel like we haven't earned the right to have the autism Dx, we haven't had the difficulties that they face, Weston will probably be able to live independently, go to college and hold a job. However, to not call his difficulties an ASD trivializes what he has to deal with. But I also feel like the other parents feel like I'm putting my child above theirs when I say he's "high functioning". but how else to discribe it?!? I don't know.
Betsy
Betsy,
Can you describe Westons language difficulties to me? This is a sticking point for me that confuses me. Mostly because of Mike's current language. His last scores were all over the board with some in the 1st percentile, and 10th percentile and others in the average range. I think a couple subtests may have been above average because his over all scores turned out just within the average range (25th percentile). He had his first word at one and sentences by 3 (but thinking back I think they were echolalic).
However it is his daily day to day language that concerns me and his teacher. He has a large vocabulary (even if he misunderstands, misuses some words), he can form long sentences correctly, he is learning conversational rules he is beginning to use more regularly (asking questions, staying on topic for x number of turns), he can look nearly typical some times but will do that stuttering/stilted thing when excited or nervous. His speech actually usually seems "stiff" for lack of a better word. But the receptive is the biggest problem. He really seems to have a hard time understanding what we are saying and misunderstands often and it becomes a big problem (often an outburst). He also takes an abnormally long time to process things. His teacher gave the mainstream teacher a sheet of strategies for Mike. One was to give him clear directions one at a time and give him lots of processing time. She may tell him something as simple as "get our your book" and it will take Mike up to 10 seconds to do it and not because he is being non-compliant. She has worked up to being able to give him 2 directions at a time and daily directions/routines take alot less time for him to process but it is still a big issue. She even has told the other kids in the clss to only call his name once and wait. More than that and he starts to get upset because it is overwhelming.
Cait's language was delayed (similar to westons) but I can talk to her much easier than I can Mike. Sure she still has conversational issues to work on (making sure the other person is paying attention, staying on topic and not going on a obsession tangeant, etc) but if I describe or explain something in aspie speak she typically understands or at least can tell me when she doesn't and ask for clarification. Her last evaluation was all average or above (which was a great improvement from the past)
I swear he shuts out the world so often because it gets frustrating for him to try to understand others beyond the typical or concrete stuff. His teacher thinks he is more autistic than AS, the therapist alluded to he is somewhere on the autism spectrum but can't place him more specifically than that. She won't give me a definitive answer. I hope the diagnostic center can give us a little more help in that area.
Maybe that is why I am so keen on nixing the differences between HFA and AS since mine don't fit neatly into one or another dx and I have known kids with more "severe" diagnosis than Mike who definitely are not more severe.
Renee
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