Labels, HFA, AS, ASD, Renee?

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Registered: 01-19-2005
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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Registered: 03-26-2003
Fri, 06-23-2006 - 11:25pm

I have alot to say, lol. This is the 4th time I am starting this. I just can't seem to get all my thoughts straight. The whole diagnostic thing and the label thing is hard for me for alot of reasons.

I think the darn DSM needs to finally be updated.

I think we in the HFA/AS/ASD group are stuck in the middle and it does not help having 3 lables that mean virtually the same thing. Whether or not a child learned to talk by the time they were 3 makes not a bit of difference when they are 10 and have nearly the same level of skills. And ASD, well that isn't even officially defined yet, lol.

I think that autism should be like many other preschool disorders that are not defined specifically until a child is older. There is actually a diagnostic manual for smaller children and has things like "regulatory disorder" because it is hard to place exactly where they will be when they are older.

I think that when a child is under the age of say 6-7 they should be labeled as autism spectrum disorder if they fit the criteria. I think when they reach the age of 6-7 they should be re-evaluated and there should be 2 separate autism diagnosis. One for kids who are verbal or have another profiecent communication strategy and who have fairly decent academic skills or above. The higher functioning group. Then one for kids who are non-verbal and are working more on functional and daily living skills. Then there should be support services and groups set up for each where they can have thier unique needs met. You can call it Kanner's autism or Asperger's autism if you like. I think re-evaluation should be always available so that if a child suddenly gains skills at an age older than 7 they would be re-assessed and re-diagnosed as appropriate.

I think currently we are considered autisms milder step sister. By many I think it is considered as "not real autism", or the lucky ones or whatever. Yes maybe we should feel lucky that our kids are verbal but how do we consider any disability as lucky? I have a hard time feeling lucky when I am searching again for another therapist or spending a crap of money on supplements. Don't get me wrong. I am lucky to have my kids and I love them to pieces but I didn't feel like Mike was lucky today at his new doctors when he had to fight so hard to keep his anxiety down and I know the whole time he was thinking "why do I have to go to a psychiatrist?"

I am honestly tired of the stereotype that Asperger kids are just those quirky smart little professors. That stereotype that makes it sound like all roses. It is a disability. If it wasn't, there would be no need for the label at all. If they were just quirky smart kids they would be labeled as gifted. We don't seek a diagnosis for our kids because it sounds like fun. Like the fashionable thing to do. We don't want to spend our time and money on therapies, medications, and advocates.

Is that clear as mud?

BTW the original question was how parents of more affected kids with autism felt about the label HFA. I hate it myself but always used it because I didn't feel I had earned the right in those communities to just say autistic. I found through a group that some parents of more affected kids were insulted when we used the term HFA. I think it is just that the whole community is so sensitive and we are not a cohesive group. Thus my thought of separating it into 2 separate groups but not until the child reaches an age where you can get a good idea where they fall.

Renee

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Registered: 01-19-2005
Sat, 06-24-2006 - 4:39am

Thanks Renee. I do like your idea of separating them out and of the second evaluation later on. That makes total sense. I wonder why they don't just do it that way? I remember when Eric was fist dx'd. My DH asked "is he autistic or not?" and the doc said, "to say he is not would be to do him a disservice." Which I always thought was an interesting way to put it.

I know what you mean about the "little professor" label seeming too rosy. Eric fits that and life is by no means easy for him. But when he walks up to adults and starts telling them that Pluto's two new moons were just named today, they are charmed. Other kids just think he is odd. Then when he has a total meltdown or starts repeating himself or doing OCD things, nobody thinks he is a cute little professor.

I know your original question was about sensistivity to the community of folks on the rest of this broad spectrum. It's bc I seem to be interacting with those parents as much now that I want to be sensitive. I know what you mean about not "earning the right." I do try not to focus on labels, I don't want them to define anyone.

Anyway, it would be great if they redid the diagnostic manuals. Why don't you do it?! LOL!

Katherine

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Registered: 06-09-2005
Sat, 06-24-2006 - 10:13am

Katherine and Renee,

This is a very good topic.. one that I have wondered about myself many times. I find myself describing my ds using different terms depending on my audience. One on hand, I find very few people outside of professionals who work with autistic children and adults, and the parents of autistics, who understand the concept of the "spectrum". Maybe it's just where I live (rural PA), but most people have NO CLUE what the autism spectrum means, how different people who are dx with autism can be.. stuff like that. I've been paying more attention to this lately. Whenever there is news program, magazine article, or a special on autism on TV, I try and take note to see if they discuss the spectrum at all. Most times they don't really. They may mention it, but not explain it. I guess where I'm coming from is that, if I try and explain my son to the average joe and say "he's autistic", they think I'm nuts, or just totally wrong. So I use the term HFA, or AS. (they may not know what Asperger's is, but maybe they'll look it up!)

On the other hand, I don't want to offend anyone in the larger autism community. So I don't know what term to use with this group. The term "high functioning" does sound kind of weird.. again.. what exactly IS high functioning..what does it mean? My local autism community is a sensitive group, and I'm starting to notice there are really two subgroups. Families with more severely affected kids and families of HFA and AS kids. When the local group plans programs or presentations, it's hard to find topics that meet the needs of both groups. Both groups are looking for support.. but are needs are different. I don't know what the answer is, just wondering if anyone else runs into this?

Don't get me started on the Aspie "little professor" thing. I also run into this alot. If it were only that simple. That remark often goes along with the comment about Bill Gates being AS. Oh please, no. I don't think this guy is AS at all. He's a geek, but he's got "theory of mind" out the wazzu. Making comments about famous successful people who supposedly have AS, when we really don't know if it is true, just trivializes the real struggle of the dx. And not all AS kids are super genius aspies.. mine is not. He's bright, and a good reader, but he has really poor executive function and organization skills. He can tell you every state capitol, but he can't find the shoes he took off 2 minutes ago! I don't need to know every state capitol, I need him to be able to find his shoes!

Ok, I kind of got off on a tangent. I also like the idea of the second eval at a later time.. to see what developes. The DSM is a work in progress. But on a brighter note..although autism awareness is something we are all working at.. we are getting somewhere, slowly. I recently read "Finding Ben" and "There's a boy in here" both books about autistics born in the 60s. Back then, so few professionals understood autism at all, let alone could diagnose it. I guess I feel lucky for ds to have the dx, rather than struggle for years trying to find our what is wrong, as the parents in these books have.

Need to walk the dog.

Kate

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Registered: 03-26-2003
Sat, 06-24-2006 - 11:27am

Didn't you LOVE "Finding Ben"? Maybe because it was the 60's/70's. Maybe I related because Ben is nearly my exact age. Maybe it was his mom, but that is the only ONLY ASD book that ever made me cry. The mom was very honest about her shortcomings but her acceptance of him finally in the end was moving.

I think the acceptance would have been much easier for her if AS was a diagnostic term when he was growing up and she had some idea of why he was how he was. I think it is also a very realistic story of a man growing up with AS. Not the all roses type that grows up to a Bill Gates.

Renee

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Registered: 06-09-2005
Sat, 06-24-2006 - 12:25pm

Renee,

Yes I did love that book! Once I started, I couldn't stop reading it, and I cried while reading the last chapter. It was a hard book for me to read, though, because my ds is ALOT like Ben. The early reading, late walking and physical delays, eating habits, math troubles.. these are all things we struggle with. It was very hard to read about how misunderstood this guy was for so many years. I had to keep reminding myself that some of the things that happened to Ben, won't necessarily happen to Ryan.. we will try to prevent that. I know that Ryan is lucky to have gotten a dx as a child, and we have made progress in many areas because of the dx, we know/knew what we were dealing with and what we weren't dealing with.. if you kwim. But the book did get me thinking about the future.. I worry alot about that. I did think it was realistic.

Another thing, like you said, the author was very frank about her feelings about her child, past and present..I did like that alot.

Also, in reading all these books about and sometimes by autistics.. I realize that we (dh and I) need to talk to ds about his dx. I hate to admit to this.. but we've never really sat him down and said.. you have Asperger's .. or you have autism. We've talked about the things he "has trouble with", and why he goes to therapy, gets to have an extra teacher at school, goes to see special doctors, etc. I don't know if 7 is too early to tell him this.. in many of the stories I'm reading they didn't get their autism dx until they were adults... but it seems like it was a relief for many to finally find out what they were dealing with, and they were not alone. I want Ryan to know he is not the only person in the world with this disablity.. but I also don't want him to think that the disability defines him and dictates his future.. tough one

As you can tell, this book really got me thinking..

Kate

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Registered: 03-26-2003
Sat, 06-24-2006 - 4:05pm

Let me give you my experience with this.

First my motto is "To not speak of autism is to make it something unspeakable". If you happen by the "other" place you will see that is my signature.

However, when we tried to explain it to Cait at 6-7 she didn't understand. She understood that her brain worked different and why she went to this or that but the label "autism" or "aspergers" really meant nothing to her and most of the conversation we had just went right over her head. When she was about 9 I bought her some "asperger adventure" book and related her to the heroine in one of the stories. She got it then and is very open about it.

I treat telling kids about autism like I think I would treat adoption or sex. I address at thier level and what they can comprehend. We use the words "autism" because that is what it is. I don't want my children to be embarrassed about who they are and making it something we don't talk about will just make it something shameful. At the same time he may not be ready for a big sit down talk about what aspergers is.

Heck, most of our extended NT adult family members can't understand what AS is, how can we expect a child with communication delays to fully understand. Cait and Mike are still working on thier understanding and I think they have a great understanding for kids thier age.

You may want to get some books at his level like "Aspergers, Huh?", and some asperger adventure books. Later on you may want to get "Asperger syndrome the universe and everything". Read those with him, be open to questions, and don't shy away from the word autism.

Renee

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Registered: 06-25-2003
Sat, 06-24-2006 - 4:31pm

I think the DSM should thrown in the trash and they should start over from scratch, looking at things from a completely different angle.


I mean completely re-do the disorder/disability/mental illness divides

-Paula

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Registered: 06-09-2005
Sat, 06-24-2006 - 5:42pm

Renee,

Thanks so much for the advice..I want you to know, I do value your opinion on this subject.

You know, Ryan knows he has trouble with things, and his brain works differently.. he needs to know that is because he has autism. Just like when you discuss sex with your kids, Dh and I need to explain what autism is, and what it isn't, before he gets the info from some kid on the playground. I'll keep it simple for now.. and answer questions as they come along. And if I know my guy at all, there will be lots of questions, lol.

As I write this, I am having a real DUH moment. Books, of course, why didn't I think of that! I'll look into the ones you mentioned for now and future use. I love to go on amazon and investigate books, even if I don't buy them there. I like reading the reviews from people and reading excerpts from the book.

Thanks again.

Kate

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Registered: 08-26-2005
Sat, 06-24-2006 - 9:53pm
It's so strange this topic should be brought up because it is something that's been on mind for the last week. I was at a family graduation party last weekend and out of about 25 people there were 3 kids there on the spectrum, 2(one being my ds) diagnosed and 1 undiagnosed. In my opinion they would all be considered as having AS although they each had very different expressions of the disorder.My son is overly friendly while the other two boys were very reserved and less social. The other two boys were much older than my son so it may be simply that as they have grown older they have become more aware of their differences and that is the reason they were less social. The other big difference between these two boys and my son is my sons high sensory needs seemed to be more obvious and that started me thinking that maybe that is the real difference between HFA and AS especially when intelligence is normal or above normal in both cases. It's hard for me to even understand where my son is on the spectrum so I use both the HFA term and AS term.Renee,having more than one child on the spectrum in your opinion what are the biggest differences between a child with HFA or AS or do you think there is a difference at all? I know this is kind of going of the original topic but I'm very curious.
Teresa
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Registered: 03-25-2003
Sat, 06-24-2006 - 11:05pm

Don't mind me popping in here, but I agree with Renee about making unspoken things unspeakable.

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