Labels, HFA, AS, ASD, Renee?

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Registered: 01-19-2005
Labels, HFA, AS, ASD, Renee?
22
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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Registered: 02-20-2001
Sat, 06-24-2006 - 11:16pm

THis is one of my fav topics also.

 


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Registered: 03-26-2003
Sun, 06-25-2006 - 12:47am

I think the difference comes down to what an individual diagnostician feels the difference is.

Supposidly it comes down to language. If language wasn't delayed-AS, if it was-HFA. If they had words by 2 and phrases by 3 then they are AS. Everything else is basically exactly the same. But I think that is a lame way of doing it. I know kids and adults who had no language until they were over 3 and yet as older kids or adults are at least as high functioning as people with AS and sometimes more so.

HFA isn't actually even a real diagnosis. It isn't in the DSM. Only autism, AS and PDD-NOS are, but rather it is our way of saying a kid with autism who has at least a normal or nearly normal IQ and is verbal. Which is basically AS except that the one criteria of AS is that language is not significantly delayed. And diagnosticians kind of decide to interpret what that means themselves.

I think when it really comes down to it, the difference IS language and communication issues. But I don't think it should be determined by WHEN language began, but rather should be determined by how well they are able to communicate and use language when they reach older ages (school age or adult hood).

Renee

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Registered: 03-26-2003
Sun, 06-25-2006 - 12:52am

Ya know, you brought up another point about not knowing how high functioning he is.

As the kids have gotten older (and My DH tells me this is a pretty common problem amung the higher functioning ASD population he sees) you can tend to think they are higher functioning then they actually are.

Both Cait and Mike are masters at this, particularly Cait. She can mask and hide her problems like a pro and it always comes back to bite her. She can nod and pretend she understands something and she doesn't. They get very good at pretending or passing and hiding in the woodwork without really understanding or learning.

That can become a really huge problem for them unfortunately. We were discussing this on a board with lots of adults and they admit to it. Doing what they have to to just get by and pass and they will meltdown later, or they will get fired for messing up on a job and they never realized they messed up.

Very frustrating. Because of the communication problems they can appear less able than they are in some ways but they can also appear more able than they are.

Renee

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Registered: 10-03-2004
Sun, 06-25-2006 - 9:00am

Yes, I can see that faking problem with Malcolm, except luckily for the most part he is with people who know and understand almost all of the time, such as special needs school. His teachers for afterschool, such as horseback riding or chess club or Tae Kwondo, is where we might see more of the faking, but so far we only have him studying in small settings, which minimizes this.

I understand one of the reasons Malcolm doesn't have the AS dx, as he did have words at 2 and phrases at 3, is that he doesn't have obsessions. Well, these days I wonder about video games sometimes, but for the most part he can disengage, think and talk about lots of different subjects. Cracks me up how well he can communicate about video games with his one friend who is VERY obsessed. They sure have fun gabbing and joking.

Interesting discussion. We always have the parents of other ASD kids thinking Malcolm is not ASD because of his communication skills and friendly demeanor, eye contact and humor. I do get scared for him thinking about the faking thing in his future life. We have recently been working with him on owning up more, such as "Sorry, I wasn't really listening, could you repeat that?" There are definitely days he should just not bother communicating lol... But it is so stress related.

DH also has those troubles communicating after a day of work and struggle with human interactions, he needs to be alone to lower his body stress and unwind. We have to work VERY hard to have a strong relationship because I NEED contact and often that's the last thing he needs. Challenging.

Sara
ilovemalcolm

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Registered: 01-19-2005
Sun, 06-25-2006 - 11:02am

I love Paula's idea about 1-10 levels. That way there would be no words like "high or low" that could be emotionally charged. It would be more descriptive.

Eric also has his version of the "faking" thing. He does what Cait does and just gives an answer or pretends to understand, even if he has no idea what he is talking about. He knows he should respond with something. If he doesn't do that, he becomes "class clown" and I notice this clowning thing taking over more and more. He is extroverted and I guess he prefers it when people laugh, it gives him positive attention and "gets him off the hook" in a situation he doesn't understand. An interesting coping mechanism, I guess. He's only 4 and I can see this getting more pronounced as social situations get more complicated.

I also see how much Eric has learned from his speech therapy that make him appear NT. He learns skills at first by rote, then integrates them. But sometimes to me, you can see that he's learned it, it is not spontaneous. For instance, we practiced asking questions for months in speech. At first he just did it there, then one day he did it on his own and now he is pretty natural and that is becoming spontaneous. But other things, social niceties, like saying "hello, how are you?" Seem harder. We play pragmatics games (card games, social games where you have to practice different situations). He tries to do those in public, but it seems like he is "acting" still it's a start.

I was thinking about this label thing yesterday at Eric's gymnastics class. There are 5 boys, ages 4-5. Eric is the only one who is verbal, however, the other boys have less sensory/stimming problems. This is a regular gymnastics place, like a gym not a kiddie gymnastics place (not like MY GYM) and they have a class for ASD kids. The boys do "circuits" involving trampolines, swinging ropes, rings, going through tunnels, all kinds of things. It's great OT and motor planning practice.

If you are in the gym, Eric is the only one speaking and he has a running monologue and often doing the "clown" thing. The other boys make sounds, maybe one word here or there, or don't talk at all. But if you step outside behind the glass to the waiting area where you can see but not hear and watch, it flips. The other boys seem to more focused. They wait their turn just fine. But Eric is frenetic, can't stand still, can't wait in line, more "stimmy," has to be redirected more often.

That's how I see Paula's scale working. Eric may be a 1 or 2 in speech but he's a 6 or higher in most every other sensory thing. The other boys are the opposite. It's intersting.

Katherine

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Registered: 03-26-2003
Sun, 06-25-2006 - 3:10pm

Actually, I see a host of problems with the level system (1-10).

First, sure there wouldn't be words like "low" or "high" functioning but the same types of connotations would be made eventually about it. Ya know at one point Mental Retardation did not have negative meaning attached to it? It is the nature of special ed and labels unfortunately

Second, how would it be determined what level a kid was at. There are so many factors it would be very hard to determine is the kid a level 6 or a level 7? What makes it a level 6 or 7?

Then you would have agencies determining services based on levels. Oh your child is just a level 2, they don't need...., your child is a level 9, they won't benefit from academics, etc. You would have families begging doctors for a level classification instead of autism over AS. That already happens here in CA with AS and autism. Doctors will give out an autism or ASD diagnosis so it is easier to access regional center.

Last, it would just create more confusion in an already confusing thing.

My DH tells me that for the next DSM they are considering splitting things up more and defining them more with more definitions. If anything I think that will just make things worse and more confusing.

I honestly think it should be broken into 2 different classifications then within those you could possibly label "Mild, moderate and severe". Then for those kids who don't fit onto the spectrum (perhaps have theory of mind, etc) you can use 'nonverbal learning disorder"

Gotta run, fighting children.

Renee

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Registered: 01-19-2005
Sun, 06-25-2006 - 3:37pm

Well, I see your point. I see there is no good answer to this.

Here in FL people already beg for the autism dx too. You don't get school services with merely a PDD-NOS or an AS dx. The docs are happy to write "ASD" for the school's purposes, however, even that doesn't get you certain services. Your child has to have a cerain percentage of a delay to get ST, OT, PT. The "percentage" thing that happens here, would be the same thing as the fine lines between numbers on the 1-10 scale that you mention. For example, your child may get ST at school if they have a 20% delay, but not a 19% delay. What's the difference? But they have to make a cut-off somewhere, I guess.

I suppose all that really matters is that we are all sensitive to the subject and supportive of each other, no matter where on the spectrum our children may be.

Didn't mean to upset anyone, just something I was thinking about a lot lately. It's like you say, "if you've seen one kid with autism, you've seen one kid with autism." They can have the same dx but be so different.

Renee, I hope the kids have quit fighting! Here, it's a rainy day and Eric is sick again and sleeping, so I'm online more than usual entertaining myself.

Thanks for talking about this. I think we've about covered it!

Katherine

iVillage Member
Registered: 02-20-2001
Sun, 06-25-2006 - 3:50pm
what a coincedence...it is a rainy day and bobby is sick and asleep! lol

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Registered: 03-26-2003
Sun, 06-25-2006 - 5:52pm

Regardless of diagnosis (LD, ADHD, etc) they have those cut offs with school kids as far as ST and such. I just don't see adding another qualifier to it. I still think services should be provided on individual basis which shouldn't really be determined by diagnosis though diagnosis will guide it.

I was thinking about this. I wanted to clarify some thoughts.

I DONT think the spectrom should be split based on lower functioning verses higher functioning. But what I am thinking is more based on what interventions and services are required by the kids as well as the families.

There are plenty of kids who are non-verbal who may have loads of great skills. BUt often they require different types of services. Kids with language skills are not going to need things like rapid prompting or alternative communication where as they will need social stories, etc that may not work for those with limited language skills.

I had been rethinking, would I make a separate category for moderate kids with autism (like my nephew) but then i started thinking of it as a matter of what supports they need and my nephew requires similar supports (not exactly the same) as my kids.

Have 2 separate diagnosis and then from there individual treatment based on individualized needs. All people with AS/ASD/HFA under one category. People can themselves quantify it as mild, moderate, severe based on whatever but all would be one thing. Then one for kids who are definitely most severely impacted. By this I am talking like the kids I used to teach in residential schools. Not the preverbal younger kids here. We still have no idea how far they can go. That is why I say rediagnosed at 6-7. I also agree with paula about re-assessing each some many years after that. But rather for kids kids who need things like rapid prompting, etc.

It just often seems to me like it is 2 separate entities though there are similarities. It is just too broad of a category to lump everyone together in one. Then the support services are stretched too far and peoples needs are not met.

I don't think I am making any sense what so ever, lol. I am probably totally crazy too.

But I really think we have to ditch the labels that all mean the same thing. The lines are too darn blurred between HFA/AS/ASD and PDD-NOS to really say they are separate things and where the line is drawn.

Renee

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Registered: 05-16-2006
Sun, 06-25-2006 - 6:32pm
Hi there, my son has the PDD label cause they just pick a catagory he falls under. All the IEP's I have had for Preschool have come to assess him pre meeting and hate that lable of PDD cause it's very vauge. I actually can't wait til my next assesment in Sept. cause the "shirnk" doesn't read the prior eval.
NO preconceived notions etc.
Besides it'll be in home this time and not clinical which makes my kid wig out.
Good luck. We are all in the same boat together.