Autism and DAN Doctors

[jodifla]

Nope it doesn't make sense for ONE major reasoning with theory-

Before the child reaches kindergarten, if they are "below average" (on a bell curve, standardized testing), they receive services in either early intervention or as a preschooler with a disability. To receive these "young child" services in the United States, you do NOT need a diagnosis of any kind.

By the time the child is entering kindergarten, under IDEA (special education law), the child simply has to fit into one of 13 "classifications." Specifically, one of the classifications is Speech and Language Impaired (which most of these children could fall under to receive services). Again, no specific diagnosis is required, only significant delays.

Of course, if a parent chooses to take their child for evaluations to receive a diagnosis, they are more than welcome to. And many parents would want a diagnosis for many reasons... I'm not disagreeing with that. BUT getting the incorrect diagnosis of autism has a high potential to be harmful in a majority of situations.

But lots of school districts are less than honest about this. They'll tell parents that if they have the language label, then they are ONLY eligible for speech and language therapy, not aides or anything else in the way of extra support.

In fact, I'd say this goes on fairly routinely from what we hear on our Late Talkers board. Parents are bullied into taking the autism label, saying basically, it's that or nothing. It's not true, and it's not legal, but lots of parents don't know their rights.


We have parents telling us that they know their child isn't autistic, that the therapists TELL them their child isn't autistic, but they allow the ASD label so they'll get all the help they need. Their point of view is, call my kid anything, as long as they get the help they need. We try to point out the problems with this thinking, but they have their minds made up.

 

[1stluvispooh]

I would read the book Children with Starving Brains by Jaquelyn McCandless MD It is all about biomedical treatments. She is a DAN Dr. and she goes into how and why she became a DAN DR. What treatments are done by a DAN Dr. What test she runs and why. I read it because for years I debated taking DD to a DAN Dr. simple because like you I didn't think Chelaton was an answer for her but I was interested in biomedical treatment. After reading the book I ddin make an appointment. Now having said that the blood work that he order well lets just say since it isn't cover by insurance the boxes (yes I used the plural) are sitting in the office. Yes I will do anything for my daughter but we must keep a roof over her head, clothes on her back and food in her tummy. I have although started with more supplments. She has done wonderfuly this past year.

As for the Gf/CF diet. DD is on it. She was on it for like 6 months then we went to an allergist who said she was physically allergic to Casein so we started just having that element from her diet. Last summer we went back to total GF/CF and boy what a difference. At thanksgiving she got some gluten and boy was that a bad scene. For all the it does work it doesn't work the bottom line is it works for 80% of the kids. So that is pretty good odds especially considering nothing else works that well in our world of autism.

 

[Mouse House Mama]

But lots of school districts are less than honest about this. They'll tell parents that if they have the language label, then they are ONLY eligible for speech and language therapy, not aides or anything else in the way of extra support.

In fact, I'd say this goes on fairly routinely from what we hear on our Late Talkers board. Parents are bullied into taking the autism label, saying basically, it's that or nothing. It's not true, and it's not legal, but lots of parents don't know their rights.


We have parents telling us that they know their child isn't autistic, that the therapists TELL them their child isn't autistic, but they allow the ASD label so they'll get all the help they need. Their point of view is, call my kid anything, as long as they get the help they need. We try to point out the problems with this thinking, but they have their minds made up.

This is exactly what I was trying to say. The schools simply will not help as much unless there is an official label. Sad but true.

 

[LuvOrlando]

No advice, just sending you all lots of good wishes

 

[floridafam]

In our school district, they said that she would have to have the ASD label to be eligible for the ASD class. Is that legal? Without the label she would have to be in a varying exceptionalities class where each child could have a different diagnosis that falls under what our district calls special ed.

I still don't know what we are going to do.

Our allergist has already confirmed that she is not allergic to most things. She is allergic to soy and her IGa was on the low side which surprised me because our older son's is low, too, but he's not on the spectrum.

 

[jodifla]

In our school district, they said that she would have to have the ASD label to be eligible for the ASD class. Is that legal? Without the label she would have to be in a varying exceptionalities class where each child could have a different diagnosis that falls under what our district calls special ed.

I still don't know what we are going to do.

Our allergist has already confirmed that she is not allergic to most things. She is allergic to soy and her IGa was on the low side which surprised me because our older son's is low, too, but he's not on the spectrum.

Hmm. That's a good question....we're fighting the opposite battle, to make sure the ASD label is not put on him, since we have several evaluations that say otherwise. (The specialists also said for us to stay away from ABA for him -- that he would do horribly with it, it would make things worse for a kid like him, not better.)

I don't know how old your daughter is, but the school did tell us he could go to the ASD class without the ASD label -- he could use the early childhood developmental delay instead. In Michigan, you can use the ECDD rule until age 8, I can't remember what Florida was. We started off there with EI when DS was 2.

What do you want to see happen for your daughter in school? Does she like the ASD class? Do you like it? Is it a good fit for her? Do you think she'd do better in a mainstream class with an aide??? Every school district is SO different.

Our DS is in 1st grade, mainstreamed with an aide. He has pullouts and push-ins. He's come a long way in the past couple of years; his extremely poor receptive language is what's holding him back academically, socially and behaviorally.

 

[jodifla]

I would read the book Children with Starving Brains by Jaquelyn McCandless MD It is all about biomedical treatments. She is a DAN Dr. and she goes into how and why she became a DAN DR. What treatments are done by a DAN Dr. What test she runs and why. I read it because for years I debated taking DD to a DAN Dr. simple because like you I didn't think Chelaton was an answer for her but I was interested in biomedical treatment. After reading the book I ddin make an appointment. Now having said that the blood work that he order well lets just say since it isn't cover by insurance the boxes (yes I used the plural) are sitting in the office. Yes I will do anything for my daughter but we must keep a roof over her head, clothes on her back and food in her tummy. I have although started with more supplments. She has done wonderfuly this past year.

As for the Gf/CF diet. DD is on it. She was on it for like 6 months then we went to an allergist who said she was physically allergic to Casein so we started just having that element from her diet. Last summer we went back to total GF/CF and boy what a difference. At thanksgiving she got some gluten and boy was that a bad scene. For all the it does work it doesn't work the bottom line is it works for 80% of the kids. So that is pretty good odds especially considering nothing else works that well in our world of autism.

GF/CF works 80 percent of the time? I've never seen that statistic.

 

[floridafam]

She hasn't started school yet and would start this Fall. She just turned 4 and would be in a Pre-K class. I don't know how she would do because I haven't seen her in a school environment.

Now I'm worried that we will never get the label taken off if we get it put on.

All we can do is take it one day at a time and see what works best for her. I don't know what the law is in FL. I am just going by what the school district told me even though I did a lot of research for her IEP meeting.

We moved from Michigan to Florida and I remember an autistic boy in my son's class six years ago where they didn't offer any special classes as inclusion was the only option. It was a disaster! There is just no other word for it.

 

[jodifla]

She hasn't started school yet and would start this Fall. She just turned 4 and would be in a Pre-K class. I don't know how she would do because I haven't seen her in a school environment.

Now I'm worried that we will never get the label taken off if we get it put on.

All we can do is take it one day at a time and see what works best for her. I don't know what the law is in FL. I am just going by what the school district told me even though I did a lot of research for her IEP meeting.

We moved from Michigan to Florida and I remember an autistic boy in my son's class six years ago where they didn't offer any special classes as inclusion was the only option. It was a disaster! There is just no other word for it.

So, your daughter is still quite young and should qualify under a developmental delay category. That's how we started off in Florida. (In fact, everyone we met with in Florida told us our son absolutely was NOT ASD, but that's another story.) If you don't want to start out with an ASD label (and there are lots of stories about that being a difficult label to remove) you could push to have her start out with a developmental delay listing. This is designed for young children specifically so they don't get put under the wrong label early.

School districts are just so different....and although it's terrible to say, you really can't trust them for the whole truth. Fact is, many of them have NO IDEA what the law actually is. They only know what they've done before, and they'll tell you that's how it has to be done.

We have a lawyer we consult with...she's a leading special ed. attorney here. She's been an invaluable resource. We only use her (and pay her) when we really need her....like reviewing our son's IEP. But, just letting our school district know she's our lawyer has made a difference in how the district treats us. Also, she knows the ins and outs of programs in our area...which are good, which aren't so good.

By the way, MOST people go from Michigan to Florida! Not like us.

 

[aristocatz]

I would bet big bucks that this particular child was incorrectly diagnosed at age two. I'm not saying something wasn't going on and that they didn't need early intervention services just that the diagnosis was wrong.

Early intervention definitely works but ABA programs are not for every child on the spectrum. There are significant, inherent flaws in the majority of ABA programs and I encounter many young children (3-5 yr olds) who spend 5-6 hours a day running trials (NY is the ABA capital, for better and worse).

Why would you guess the diagnosis was wrong? Because the child was placed off the spectrum? Although not common, it is quite possible that a child can get placed off the spectrum after intensive treatment. When a child is that young, their neurons are still forming. With intensive educational treatment, you can alter neural pathways & change behavior-especially when a child is young.

This particular child was diagnosed by top neuropsychologists in the Boston area. The mother got second and third opinions & each doctor who saw this child used very specific diagnostic tests that placed this child on the spectrum. A thorough autism diagnosis has a measurable basis & is based on norm referenced testing. This child was also placed on the moderate to mild range of the spectrum.

Observationally, when I first met this child, he had very classic characteristics (self-stimulatory vocal and motor behavior, language delays, rigid thinking, low eye contact, poor social & play skills, etc). Today. he still exhibits some self-stim, but it is of low frequency & not enough to qualify with a diagnosis.
He continues to receive maintenance therapy & gets tested bi-annually by their neuropsych.

From your description of ABA, it sounds like you have a skewed view of what it is. Yes there is good teaching and there is bad teaching-but ABA is nothing more than that: TEACHING & teaching techniques that are based on assessment, data, and years of research (over 50 years of research actually, which is why it is known for being the only empirically based successful treatment for increasing skills in individuals with autism).

It's not magic & the rationale behind it is really not that complicated to understand. I would be willing to bet that you use ABA techniques in your own daily life without even realizing it. ABA can consist of tabletop work, floor play, group teaching, natural environment teaching, community training, language training, etc...Some people have a very stereotypical and inaccurate impression of ABA-it is actually not the "cold teachers shoving candy into a kid's mouth for 5 hours" that some make it out to be.

ABA is also not limited to teaching children with autism-it is actually quite a large field!

Here is a great Wiki link with an overview of what ABA actually is:
http://psychology.wikia.com/wiki/Professional_practice_of_behavior_analysis

Also, ABA therapy does NOT "cure" autism and anyone who suggests that is incorrect. The child I was referring to was not "cured" As of now, there is no known cure for autism. But, when done correctly by a certified professional, ABA does catch a child up & help them lead typical lives. The definition of a child being placed "off the spectrum" means that the doctor re-ran their diagnostic tests and the child tested at age level in all functional living domains (cognitive, language, social/play, self-care, coping), making them virtually indistinguishable from their peers. If/when a child with autism does reach that level, maintenance therapy is critical for a period of time to ensure that the child is continuing to function at a similar level as his/her typical peers.

 

[aristocatz]

However, I'm talking about kids who have data taken all day every day and every aspect of their lives is driven by that data...

Ok, I have to respectfully ask:

What do you have against taking data?

 

[aristocatz]

Yeah, especially with some NIH studies now saying that up to half of all children DXed with PDD-NOS actually never had it at all. The stability of that DX at a young age is highly questionable.

I was talking to one researcher and she said that will all the wrong labeling going on, some young teachers really have no idea what true autism looks like anymore.

I do absolutely agree with the high number of misdiagnoses. Many "diagnoses" these days are based on a one session mere observation which is just ridiculous. The facility I work in will actually not accept a child into their autism program unless they have a diagnosis from a qualified professional and based on diagnostic testing.

 

[aristocatz]

I would read the book Children with Starving Brains by Jaquelyn McCandless MD It is all about biomedical treatments. She is a DAN Dr. and she goes into how and why she became a DAN DR. What treatments are done by a DAN Dr. What test she runs and why. I read it because for years I debated taking DD to a DAN Dr. simple because like you I didn't think Chelaton was an answer for her but I was interested in biomedical treatment. After reading the book I ddin make an appointment. Now having said that the blood work that he order well lets just say since it isn't cover by insurance the boxes (yes I used the plural) are sitting in the office. Yes I will do anything for my daughter but we must keep a roof over her head, clothes on her back and food in her tummy. I have although started with more supplments. She has done wonderfuly this past year.

Just wanted to say that is a great book!! OP: you might consider reading it. It will definitely give you more perspective on DAN doctors and biomedical treatments.

 

[jodifla]

I would be interested in reading that research- I am a "young teacher" (speech therapist) and while I know what true autism looks like, it is simply because of the environments that I have placed myself in.

These are statistics that make me question the diagnosis process- A mother of one of my students was told that there are 500 incoming kindergarteners. 190 of them have been diagnosed on the spectrum. I understand that our school district provides great services. BUT 38%??? (this figure came from the school district)

I see students that have a PDD-NOS diagnosis that I don't agree with but I keep my mouth shut. As long as a child is receiving services that are appropriate, I don't care what a piece of paper says. However, it does matter when it comes to the cost (not just monetary) of the diagnosis to the child, the parents and family unit, as well as society overall.

I'll look for the links and get them to you....



v

 

[jodifla]

http://www.ncbi.nlm.nih.gov/pubmed/17683451

Turner LM, Stone WL.

University of North Carolina at Chapel Hill, NC 27599-3367, USA. lauren_turner@med.unc.edu

BACKGROUND: Few studies have examined the variability in outcomes of children diagnosed with autism spectrum disorder (ASD) at age 2. Research is needed to understand the children whose symptoms - or diagnoses - change over time. The objectives of this study were to examine the behavioral and diagnostic outcomes of a carefully defined sample of 2-year-old children with ASD, and to identify child and environmental factors that contribute to variability in outcomes at age 4. METHODS: Forty-eight children diagnosed with autism or pervasive developmental disorder not otherwise specified (PDDNOS) at age 2 were followed to age 4. Diagnostic measures included the Autism Diagnostic Observation Schedule - Generic (ADOS-G) and clinical diagnosis at ages 2 and 4, and the ADI-R at age 4. RESULTS: Diagnostic stability for an ASD diagnosis (autism or PDDNOS) was 63%, and for an autism diagnosis was 68%. Children who failed to meet diagnostic criteria for ASD at follow-up were more likely to: 1) be 30 months or younger at initial evaluation; 2) have milder symptoms of autism, particularly in the social domain; and 3) have higher cognitive scores at age 2. No differences between children with stable and unstable diagnoses were found for amount of intervention services received. Among the children with unstable diagnoses, all but one continued to have developmental disorders, most commonly in the area of language. CONCLUSIONS: The stability of ASD was lower in the present study than has been reported previously, a finding largely attributable to children who were diagnosed at 30 months or younger. Implications for clinical practice are discussed.

 

[daughtersrus]

I haven't read the entire thread and know that I'm jumping in a bit late.

I don't have any direct experience with this but I have cared for a boy with autism in my daycare. I noticed delays and signs when he was about 2yo but the mom and dad thought that I was crazy. They did agree to EI and he was given the diagnosis for SID. They still were in denial but agreed for him to go to Early Childhood when he was 3yo. They pulled him from that when he was about 3 1/2 still saying that there was nothing wrong.

About a year later, they jumped head first into searching for the cure to help their son recover from autism. This included a DAN doctor, chelation, supplements (some of which were "toxic" doses), allergy testing, GFCF diet, Diflucan and Valtrex, HBOT treatments (to the point that they were going to buy an HBOT for their basement) and now are sure that the Son Rise program is the cure. He is now 6yo and has not been in school since he left Early Childhood. I'm not sure what they will do next year since he will be required to be in school. The mom has already told me that she is not prepared to do the paperwork involved with homeschooling.

I stopped watching him about 1 1/2 years ago. I saw him for the first time since then a few weeks ago. I can honestly say that I saw no difference at all. He is still pretty much non-verbal but will still echo and still has the stim behaviors. Of course, that's not to say that his parents are not seeing a difference.

The thing that gets me is that all of this is SO expensive. The parents have remortgaged their home a few times as well as their business. I understand wanting to help your child at all costs (I have a DD with a very rare genetic disease and severe medical issues and delays so I understand) but I think that autism has become a money making opportunity for some. Again, that's not to say for all but to pay the amount that they pay and be told that the child doesn't even need to come in for the visit seems a bit odd to me. How can a doctor charge the fees that they're charging to treat a patient that they only see ever few weeks?

This mom as suggested many times that I take my DD to this doctor because she's talked about my DD to this doctor and he told her that he could help cure the disease (Her disease is nothing like autism. Not to get too technical but the only "cure" is a bone marrow transplant at the first sign of symptoms). Believe me, if there were a cure for the disease that my DD has, I would be first in line. Again to me, if seems that there are a lot of people that prey on parents desperate to find a cure. I'm not saying that is the case all of the time, but I do think that it happens.

 

[jodifla]

Here's another interesting look at the autism "epidemic" which goes too Forveryoung's experience about the high numbers of kids "on the spectrum" at one school...




Published online July 1, 2005
PEDIATRICS Vol. 116 No. 1 July 2005, pp. e120-e124
Services


US Department of Education Data on "Autism" Are Not Reliable for Tracking Autism Prevalence
James R. Laidler, MD

From the Department of Biology, Portland State University, Portland, Oregon

http://pediatrics.aappublications.org/cgi/content/full/116/1/e120


Many autism advocacy groups use the data collected by the US Department of Education (USDE) to show a rapidly increasing prevalence of autism. Closer examination of these data to follow each birth-year cohort reveals anomalies within the USDE data on autism. The USDE data show not only a rise in overall autism prevalence with time but also a significant and nearly linear rise in autism prevalence within a birth-year cohort as it ages, with significant numbers of new cases as late as 17 years of age. In addition, an unexpected reduction in the rise of autism prevalence occurs in most cohorts at 12 years of age, the age when most children would be entering middle school. These anomalies point to internal problems in the USDE data that make them unsuitable for tracking autism prevalence.

 

[jodifla]

This doctor also wrote about his experience with the DAN diet::

James R. Laidler, MD

http://www.autism-watch.org/about/bio2.shtml

After years of “supplements,” restrictive diets and “unconventional” therapies (too many to list), our boys were improved, but were a long way from being cured. We were forced to carry their special foods with us whenever we left the house, lest a molecule of gluten or casein catapult them back to where we had begun. We were nearly broke, despite both of us having well-paying jobs, and we were on the verge of exhaustion. The beginning of the end was when my wife, suspecting that some of the “supplements” we were giving our older son weren’t having any effect, stopped them all—without telling me. I saw no difference, even after two months (when she finally told me). We had been chasing our tails, increasing this and decreasing that in response to every change in his behavior—and all the while his ups and downs had just been random fluctuation. My eyes began to open.

The final step in my awakening came during a Disneyland vacation. My younger son was still on a gluten- and casein-free diet, which we both swore had been a significant factor in his improvement. We had lugged at least 40 pounds of special food on the plane with us. In an unwatched moment, he snatched a waffle and ate it. We watched with horror and awaited the dramatic deterioration of his condition that the “experts” told us would inevitably occur. The results were astounding—absolutely nothing happened. I began to suspect that I had been very foolish.

 

[jodifla]

I haven't read the entire thread and know that I'm jumping in a bit late.

I don't have any direct experience with this but I have cared for a boy with autism in my daycare. I noticed delays and signs when he was about 2yo but the mom and dad thought that I was crazy. They did agree to EI and he was given the diagnosis for SID. They still were in denial but agreed for him to go to Early Childhood when he was 3yo. They pulled him from that when he was about 3 1/2 still saying that there was nothing wrong.

About a year later, they jumped head first into searching for the cure to help their son recover from autism. This included a DAN doctor, chelation, supplements (some of which were "toxic" doses), allergy testing, GFCF diet, Diflucan and Valtrex, HBOT treatments (to the point that they were going to buy an HBOT for their basement) and now are sure that the Son Rise program is the cure. He is now 6yo and has not been in school since he left Early Childhood. I'm not sure what they will do next year since he will be required to be in school. The mom has already told me that she is not prepared to do the paperwork involved with homeschooling.

I stopped watching him about 1 1/2 years ago. I saw him for the first time since then a few weeks ago. I can honestly say that I saw no difference at all. He is still pretty much non-verbal but will still echo and still has the stim behaviors. Of course, that's not to say that his parents are not seeing a difference.

The thing that gets me is that all of this is SO expensive. The parents have remortgaged their home a few times as well as their business. I understand wanting to help your child at all costs (I have a DD with a very rare genetic disease and severe medical issues and delays so I understand) but I think that autism has become a money making opportunity for some. Again, that's not to say for all but to pay the amount that they pay and be told that the child doesn't even need to come in for the visit seems a bit odd to me. How can a doctor charge the fees that they're charging to treat a patient that they only see ever few weeks?

This mom as suggested many times that I take my DD to this doctor because she's talked about my DD to this doctor and he told her that he could help cure the disease (Her disease is nothing like autism. Not to get too technical but the only "cure" is a bone marrow transplant at the first sign of symptoms). Believe me, if there were a cure for the disease that my DD has, I would be first in line. Again to me, if seems that there are a lot of people that prey on parents desperate to find a cure. I'm not saying that is the case all of the time, but I do think that it happens.

Wow. That's a lot of treatments they've put that little boy through!!!