For those losing labels if there are still some concerns you might want to be careful not to be "charmed" out of services by those stating how well your kids are doing. Labels do get services.thats the reason why his doctor said, that his dx will still remain the same. this way he can get the services he needs .
I don't think autism just goes away... I think it changes as the child matures to other manifestations perhaps not as well understood as the often obvious preschool symptoms.
Fred, posted a study a while ago and maybe he remembers who it was that found that ASD kids have atypical improvement for example going from non-speech to echollalia to rigidity etc. but they do improve.
I agree that some behaviours can be less obvious or rear up as situation specific. To me, it's like saying since the ocean looks calm the turtles are gone from the water. Personally, I'm unsure how at 4-5-6 yo how you can gauge the true level of asd needs.. and I think it's pre-mature optimism. I see at as making it to the top of one development hill of concrete skills that have all been aquired atypically; all in a fashion unlike their NT peers. Since, ASD is a development disorder and not a development delay, development is bound to be continuously atypical and not just gotten on track and done with it.
I think "autism that goes away" is either a misdiagnosed development delay, a shift in external ASD behaviour of actions because if can't functionally speak you act out to less obvious internal ASD behaviours as functional language is learned.
These are the typical needs of AS/HFA/NLD student needs/deficits by Dr. Stewart (Orion Academy for AS/NLD teens) they are not as obvious as handflapping, spinning etc. and for the most part internal issues that could go easily unnoticed by ppl not trained, intimate or involved with the ASD child in a variety of different expectations.
Organizational Skill and Executive Function
1. Organization
Difficulties with novel situations and learning
Slow processing speed
Rigid thinking
Concrete interpretation
Perfectionism
Focus on the wrong detail
Difficulty with "if-then" thinking
2. Integration
Poor frustration tolerance: gives up easily
Work production limited: is overwhelmed by a heavy load
Has difficulty creating written documents
Rigid prefectionist about work
Easily overwhelmed: emotional shutdown often occurs
3. Production
Fails to comprehend the main idea
May see all details as equally important
Has poor ability to understand and use a metaphor or an analogy
Has difficulty reading between the lines
Relies on pattern learning and misses concept
Prefers step by step, sequential mode of learning, often losing the whole concept
Visual -Spatial and Sensory Motor
Is clumsy
May not explore the world through physical activity; uses language instead
Processes visual information slowly
Has poor hand-to-eye coordination
Has facial recognition problems; affects ability to read social situations
Eye contact is often poor
Body posture problems
Directional confusion
Difficulty with maintaining arousal states (attention)
Unsure of own body boundaries
Tactile and auditory sensitivity
Social Skills Deficits
Difficulty writing for and interacting with the "audience"
Difficulty taking perspective of another person
Often fails to conceptualize what they are talking about, losing sight of the audience's interest and comprehension
Poor or sporadic grooming
Cognitive and behavioural rigidity
Poor integration of multiple levels of information fields, which is required in social settings
Difficulty predicting outcome, what would happen next
Difficulty managing anxiety
Does not think about how another person "feels"
Problems with time and time references
Trouble with novel situations
Can't predict outcomes --- which makes all interactions novel
Experiences a limited range of feelings
Difficulty with give and take in social situations
Poor ability to understand nuances
I can see why Dr. Kartzinel's "soul" quote from Jenny McCarthy's book has received such a strong reaction:Well, my older daughter is on the verge of losing her PDD-NOS diagnosis. When she was first dx'd at age 3, she did a lot of spinning and pacing. She was very sensory seeking -- she had to touch and feel EVERYTHING. She had no imaginative play, only paralleled play with her peers (if she noticed them at all). She would repeat phrases from movies over and over, and have constant meltdowns (up to 25 in a school day).
All of those behaviors have gone away, except for the meltdowns. The developmental pediatrician is attributing the meltdowns to extreme anxiety, and doesn't think the PDD-NOS dx applies any more. (although we're keeping it on his paperwork so we can continue to get services for her)
Ecki
Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)
http://oppositekids.blogspot.com/
I think the Autistic Spectrum extends all the way into the general population and that one can move up the spectrum over time. I found the Larry King interview to be filled with misinformation and lacking in any coherent message. Although it is a man trying to sell toothpaste talking to a lady trying to sell books - how much can I expect?
This post reminds me of a book. I read this book "The Fabric of autism" by Judith Bluestone and at the end, she claims she was autistic but she is not anymore.
The book takes you to the journey of her childhood and adolescence and all the things she did (typical ASD by the way) and she explains WHY she did them, what symptoms she relieved and gives a very interesting insight on why autistic kids do what they do and behave the way they behave. She then explains as an adult how she learned to compensate for all of that.
If you see her as an adult, she does not "look" autistic, she does not behave like a typical ASD person and she may loose the "label" if she were diagnosed right now, but it is not because her body is cured, is because he has learned to avoid some of the triggers and control/compensate the others, but her body still releases those triggers as she called them
She proposes a method to overcome autism, it is very unconventional, I personally do not know if it works or not, like most of alternatives is very $$$$ It is not my intention to recommend the therapy, it is about the claim that she overcame autism, but the book itself is very interesting, at least is worht the money just by narrating what goes on inside her head.
KARTZINEL: "Making these kids better. There's nothing like having a mom call you back and saying he's mainstreamed. He's in a regular school now. He's lost the diagnosis of autism. The doctors are questioning whether he even had autism. Well, he had the kind of autism that goes away by itself. And that's fabulous."In any case, I've read that about 10-15% of those diagnosied with autism eventually lose the label. This is not to say that they are now 'typical' - just that they have progressed enough so that a diagnosis of autism no longer seems appropriate.
I don't have a source for that - maybe I'll go try to dig one up.
ETA - there is no surrounding context. I wonder if it's a mistatement. At the beginning of the quote he's taking credit for "making these kids better" and the last bit implies that some kids get better on their own.
I can't find where I read that original stat, but a quick crawl through pubmed finds a couple of studies - not totally relevent, as these focus only on subset of autistics (those with full scale IQ scores within or near normal range), but they seem to show a 'very good' outcome in from 12%-25% of cases, but these are very small studies, and probably should be taken with a grain of salt for various reasons.
This is an editted copy of the Larry King Transcript of Dr. Kartzinel's Q&A.
http://transcripts.cnn.com/TRANSCRIPTS/0709/26/lkl.01.html
KING: Our full panel is assembled. Jenny McCarthy, the author of "Louder Than Words: A Mother's Journey in Healing Autism," Holly Robinson Peete, whose oldest son R.J. was diagnosed with autism in the year 2000.
Now joined by Dr. Jerry Kartzinel, board certified pediatrician from Jacksonville, his practice is devoted to the research and treatment of autism and other neurodegenerative disorders. He's the father of an 11-year-old son with autism, and wrote the introduction to "Louder Than Words." Did you kind of specialize in this because of your son? What happen before the other?
DR. JERRY KARTZINEL, PEDIATRICIAN DEVOTED TO AUTISM RESEARCH: Oh Absolutely. I had four boys. It was my fourth boy who developed autism shortly after I gave him the MMR. My wife says, you broke him, now you go and fix him. I went what? I didn't even have a clue yet what happened.
KING: So what do you make of this theory we've been kicking around here with Jerry and the like with vaccines?
KARTZINEL: Well, we have to think about a population. You can't do the same thing to an entire population and not expect something to happen. For example, if you were to give every child in the United States a kitty cat to go home with, you know the majority would do well. But there's a small group that would not do well with the cats.
The first thing we think about are allergies, they could get bit by the cats the cats can run away. If we give every cat and a dog, we've got interactions, with the cats, the dogs, and between them, and you add the hedgehog and all of a sudden we're stacking things up and we can cause problems with the animals. We know we can't give every child in the United States a shot of penicillin. The majority will do well, but there will be a distinct group who won't. Why do we think we can bring in anything and expect the entire population to take it without a problem?
KING: What do you do when you need the vaccine?
KARTZINEL: I think what we have to first do is realized there may be a problem. And we have to ask honestly, if we see a child who falls apart, and that's something new, that's not in pediatric medicine, that you have a child who's normally developing the first year, year and a half, with today's video cams and digital cameras, we can document that, and all of a sudden they fall apart, they lose eye contact, they're screaming all night, they're losing language, they are constipated, they have diarrhea, biting, screaming, running, what do we have in the textbooks to describe that. And there's nothing. We have to say, what happened in this child's life during this time? Is it viruses, is it bacteria, is it vaccines?
KING: But do you not give vaccines? What do you do with the vaccine -- if the vaccine is the problem, but not every child is affected by it, what do you do?
KARTZINEL: Well I think we have to ask, first of all, is the vaccine a problem. I keep hearing from parents it is.
KING: Jenny says it is.
KARTZINEL: Certainly. If you tell me that your child woke up with ear pain and 102 fevers and I look in the ear and see an ear infection and prescribe an antibiotic, you're right. If you tell me that your little guy had tummy aches and in the right quadrant and he can't walk, and he ends up having appendicitis your right. Now you come in and tell me that my son has lost eye contact and language and is screaming all night and this happened a week ago right after a vaccine, all of a sudden you're wrong?
KING: What is the answer? You wouldn't have known not to vaccinate him. KARTZINEL: Right, I think the first thing we have to understand as a medical community is we have to listen to the parents tell us what's going on.
KING: But then what?
KARTZINEL: And then we treat the kids. That's the thing. There are things we can do to help these kids. If you have a child who's not sleeping, we can help that child.
KING: We asked the Center for Disease Control for a statement on autism, and a possible link to vaccinations. This is part of what they told us. "Every day we hear the heart-wrenching stories like the ones shared tonight by Miss McCarthy. She and other loving parents want and deserve answers about the cause of autism. Hopefully additional research will someday provide answers. The nation's foremost scientists agree that research done so far simply does not support an association between thimerosal in vaccines and autism.
As scientists searching for answers, parents need to know there is hope. There are effective therapies that can help. It's critical that parents see their pediatrician if they sense their child is not developing properly, because early intervention is critical. But they're saying there's no proof of this."
KARTZINEL: I think we have to understand that they're looking at forests. And we have trees. They're not seeing the trees. And if they start counting these broken children, which they have not really acknowledged that there is an epidemic of autism out there, and if you look at what Webster's says an epidemic is, it says there's a disproportionate amount something affecting the population that you wouldn't expect to be there, we know juvenile diabetes is 1 in 150 children. Autism has reached that. And it's even growing faster. So we have to be very careful about what we do. Actually, diabetes 1 in 500. Autism is 1 in 150.
KING: More autism than diabetes.
KARTZINEL: A lot more.
KING: Doctor, give me a good working definition of autism.
KARTZINEL: From a parent's point of view, autism is the sudden loss or deteriorating loss of eye contact, social skills, communicative skills, they become very repetitive in their play, they become what we call stereotypic, or common word is stimming, where they'll flap. They get mesmerized by things that spin, by things that turn, by things that open and close.
KING: Is it a virus?
KARTZINEL: No, it's not a virus, but a virus can be a component of their illness. When you think of what can cause the brain to go in this fashion, viruses certainly are a possibility. Bacteria are.
KING: Why more boys than girls?
KARTZINEL: They're still trying to work it out. They are thinking that testosterone might make us more susceptible to the effects of the environmental toxins, where estrogen is more protective.
KING: We have an e-mail from Susan in Chicago. Is autism as prevalent in other countries as it is in the United States?
KARTZINEL: The other countries aren't doing a very good job tracking it. The best one obviously would be England. And it is just as prevalent there, if not more than it is in the United States.
KING: How about in Asia?
KARTZINEL: We don't know. But they keep asking for help out there because they've got millions of children with autism and they're desperately seeking help.
KING: States where you don't have to vaccinate?
MCCARTHY: There are states where you can get out of the vaccinations.
KARTZINEL: I do believe religious beliefs, philosophical beliefs and medical beliefs.
KING: Is that any state?
KARTZINEL: No.
KING: We have an e-mail from Monique in New York. What do you think about putting an autistic child on medicine like Ritalin or Telex?
KARTZINEL: I think we have to look at the underlying problems, why they can't focus and concentrate before we consider those medications. They can certainly be helpful in the right situation. If the child is full of stool, just constipated, of course he's going to have abdominal pain; he's not going to be able to sit in class. If the child is drinking a ton of juice, eating a lot of candy, drinking a lot of dairy products like milk and they're allergic to it, of course they're not going to have good focus and concentration. So it may not be necessary.
KING: What was the number one problem, Jenny, your kid had?
MCCARTHY: Yeast. ...
KARTZINEL: This will come from the children who have repeated ear infections and they get repeated antibiotics. Nobody looks to see what's wrong with the immune system. They just keep treating it. If you treat the human being enough with antibiotics, you're going to develop yeast.
MCCARTHY: A lot of people, by the way, don't realize there's a gut connection with autism. ...
KARTZINEL: In fact, when you go to endoscope, they'll put the kid to sleep and advance the camera up into the intestines and colon. It has to be treated. Reflux disease, you can see that.
Larry KING: What are the rewards you get out of your profession, doctor?
Kartizinel: "Making these kids better. There's nothing like having a mom call you back and saying he's mainstreamed. He's in a regular school now. He's lost the diagnosis of autism. The doctors are questioning whether he even had autism. Well, he had the kind of autism that goes away by itself. And that's fabulous."
My thought is that they are never cured from autism... sure kids can improve to the point where the "classic" symptoms aren't obvious but I think the real truth lies in the fact that a lot of children are misdiagnosed. Incorrectly diagnosing children means big money lawsuits for doctors so they will never admit it, rather they will say they have been cured or have recovered from autism. Just my thoughts...
What worries me about this stuff is that quite often...ok, I love this post because today was my dd's third asd evaluation. She has been going every six months starting at age 3.5.
I contacted her doctor because at 2years my dd showed many autistic traits, only I didnt know what autism was then so I had no idea that I should have contacted anyone.
She had no communication, only echolalia and she stimmed all the time. She could have cared less if I came and went. She had no attachment to me. She was very hyper active and had zero play skills. She hardly slept and spent her days bouncing off walls.
In the beginning I assumed her stim was a tic and considered touretts or a tic disorder. After I started looking for some help for her I discovered autism and she had almost every red flag. It was a heart breaking moment the fist time I saw the "check list" for asd.
She was on a long waiting list to see a development ped. She was a few months away from her fourth b-day. By that time she matured and a lot of the behaviors she had went away. She was however still stimming like crazy and she had a lot of communication issues.
She did not get dx'd with asd by the developmental ped. but she did get dx'd with semantic/pragmatic language disorder. To most people, it is a cover up dx for asd so I never let the idea of autism slip out of my mind.
I went in again after six months. She had no therapy, not even speech. This girl can pass a speech eval. with very good results. The problem is not her vocab, its pragmatics. The school district does not help with pragmatics and the private speech therapists were not helping her. So, I pulled her out and put her in preschool to see if peer interatction would help. It did:) Anyway, after no services, she still got better.
Today we went in again. No therapy still and my dd is in a mainstream Kindergarten class but she is still stimming and the pragmatics are still a major issue. I was told this today by a clinic specialized in asd:
My dd most likely had asd but it went away.
Hmmm, I thought...how did that happen??? I was told today that my dd is very grey. So grey that they do not want to dx. They told me that her positives out weigh the bad.
They told me that she will probably be grey her whole life. That she will be a little off step but will blend nicely with the NT world. They have seen video of her at two and agree, she looks asd. They told me today that it is not that uncommon that some kids can mature out of asd. They really think my dd does not need the dx of asd.
I am happy to hear this. I am not going to try and push for a label anymore. Seems like she is maturing nicely.
They did however think she will need a dx of ADHD...but, I want to wait on that one...for some reason:) Time will tell.
Just thought I would share...
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I originally posted this because I was blown away when I heard his comment about the form of autism that we've never heard of. Dripping with sarcasm here. I thought it was really irresponsible of him. I am just disgusted after reading these new statements. Boy, I sure don't want him speaking for me or my child. What a jerk. Oh, gotta go, my marrow is oozing.
As far as I'm concerned Kartzinel lost any thoughts of me even thinking about giving him the time of day when he called autistic children "soulless"
http://leftbrainrightbrain.co.uk/?p=682