The recent discussions on the series in the Chicago Tribune have been therapeutic for me.
My 16 year-old child is severely effected by autism. Xe is self-injurious, destructive and aggressive. Xyr language has never developed past that of a 2 year-old. Outside of the behaviors that come from OCDs, xe is a happy child and a loved child.
Jeff Bradstreet was xyr doctor when we lived in Florida. When I first met Jeff he was on disability and selling vitamins from a small back office in his wife’s dental clinic. He was not yet one of the DAN! leading acts. Secretin was yet to come to the forefront and make the DAN! docs rich.
Jeff Bradstreet was a very nice man and generous with his time. He and I disagreed often with his approach to my child’s treatment. I still trusted the neurologists and the immunologists more than the DAN! docs. When all went the direction of chelation, I took my child away from DAN!, and I never looked back.
I believed my child was injured by xyr vaccinations when xe was 12 months old. I never thought there was a “measles infection in xyr gut” condition nor a mercury toxicity situation. I just thought xe had an autoimmine reaction. I reported xyr vaccines to the FDA in 1996, and I filed a lawsuit as an individual in 199#. Jeff Bradstreet asked me why he was not asked to submit any evidence in xyr lawsuit. I did not want his name on my child’s case.
I appreciate the time and energy you take to expose what should be obvious.
I worked very hard for what I thought would benefit my child. I travelled all over the US with xyr to see doctors and have medical tests done. I brought in experts to evaluate xyr. I hired attorneys for xyr IEPs. I quit my job and focused on xyr and xyr health and education. Part of that was research that led me to walk away from DAN! and all that it offers. I chose not to chelate xyr. I chose no IVIG treatments.
My child is still severely autistic.
So I am offended at comments about parents leading their children down a path to institutionalization. I am offended that parents believe they rescued their children from a life of head-banging and middle of the night laughter. Because as parents and grandparents of autistic children, they should be more sensitive to children who are autistic and display these behaviors. Do not all autistic children deserve to be valued? Are they telling me that my child is less because xe was not “saved”?
“Real children’s lives are consumed” was the battle cry this weekend from Mark Blaxill. What hypocracy. DAN! doctors are experimenting on autistic children everyday.
I don’t post to your website because I don’t write well. But, here is a final comment.
In 1995 my child at age 2 started at a pre-school for autistic children. After a few months, xe was transferred to another classroom because xe was not making the progress of the other children. Those boys were succeeding at picture exchange, following one-step commands, showing skill in expressive language.
The DAN! protocol wasn’t around in 1995. How did those boys make that progress?
Here in the US there is a British writer for The Atlantic – Andrew Sullivan – who has made it his quest to expose Sarah Palin for the absurd fraud that she is. Right now, that is how I feel about Kim Stagliano.
Many years ago I was on the front lines of the anti-vaxers. I would go to DAN! conferences and hang out with Mark Blaxill, Jane El-Dahr, Holly Bortfeld et-al. I called the vaccination program “government mandated child abuse”. Okay, I was excited at the time. But Kevin, I do think the assembly line approach to immunizing children has gotten out of hand. When I lived in Florida, the pediatrician and I agreed after serious consideration that my now 13 year-old child could go without immunizations. He signed all waivers. That was a medical decision between me and a physician. Why does it have to be so regulated and administered by school districts and health departments? (Note this was also 2 years before the hysteria of Wakefield’s paper).
I did believe then, and at times I still believe that my child had a reaction to xyr vaccinations when xe was 12 months old. I have a report dated 1998 from Michael Chez MD stating he is impressed with xyr reaction to the MMR because it could have cause an autoimmune reaction and breakdown of the blood brain barrier. I have always been interested in more research into the autoimmune reaction of vaccination – like that being done by Dr Bonnie Dunbar in Houston. But her work was overshadowed by the discovery of thimerosal in vaccines.
I never believed my child had measles in xyr gut. I never thought xe had mercury in xyr brain.
I met a lot up parents up to 1999 that said their child regressed post MMR. In 1999, I saw a lot of their stories change to meet symptoms of mercury toxicity from Hep B. I saw a lot of parents that did not believe there was a vaccine injury become convinced that there was a vaccine injury.
I heard a lot of parents swear that it was child abuse to give your kids gluten. I read the science that showed the opioid excess theory is total and complete BS.
I’ve had enough of all things DAN!
The Chicago Tribune writes a responsible piece saying that there is no scientific evidence that IVIG works on neuroinflammation. Instead of providing scientific evidence that IVIG works on neuroinflammation the DAN! zealots attack in every direction they can.
Left Brain Right Brain 
This woman’s views echo how I am starting to feel about our situation. Now, just a few months in to my son’s diagnosis.
From what I have seen, there is a growing number of parent voices of this same strain, of parents who have gone into DAN!, have stood convinced, and then have found the evidence behind DAN! to be lacking.
I applaud each and every one of you who have decided to speak up and share your stories. Thank you very much for doing so.
~Corina
Autistic adult
Thanks for this guest post.
I think this is a very thoughtful parent. It is possible to believe that a vaccine triggered the autism without being a loon. This is proof.
That said, the reason the vaccinations are regulated by the schools, is because schools are full of children, and having even an small percentage of unvaccinated children can be dangerous.
Vaccines do have side effects, and there are some children with medical conditions that prevent them from taking vaccines. There are some children whose families have religious convictions regarding vaccines. The children who fall outside such areas need to be vaccinated to protect both themselves, and the children who cannot be vaccinated.
Personally, I don’t think vaccines caused my son’s autism. Personally, the only way I see a vaccine can feasibly have caused it is this: vaccine causes fever. fever causes seizure. seizure triggers autistic symptoms. The rate of seizures in vaccines is 1/3000. So an even smaller percentage than that could have a vaccine-triggered symptoms, if and only if, seizures cause autism. I honestly know nothing of autoimmune disorders, so I could make no hypotheses about that. The reason I contemplate the possibility of seizures causing it is twofold: 1) The same hypothesis is brought forward in Autistic Spectrum Disorders by Walts (2002). 2) Seizure = occurs in brain & not fully understood. Autism = neurological difference & not fully understood.
Again, it’s not something I think happened with my son, but I figure it’s possible with other peoples kids. (my son doesn’t have a comorbid seizure disorder that we know of)
There is evidence of multiple medical conditions being triggered from vaccination, who is to blame, no action has ever been taken by any government against these crooks so are they all involved!
Vaccines cause a autoimmune reaction and then inflammation which can cause epilepsy or autism or a host of related conditions.
This is a world wide issue, someone wants children to be dumb.
There has been a change in human DNA and children are being born with a higher IQ. Some people for their vested interest do not want intelligent children. The dumb can be easily manipulated.
Similar vies are on cidpusa.org
Granted, many seizures are much more subtle than the grand mal and petit mal I was taught about as a child.
In fact I didn’t know about the vast range of seizures until I was in touch with a young woman around the end of 2001. Some years later she had a massive car accident.
It seems to be all about how the parents become convinced that something is happening. Confirmation bias? And big effects require big causes?
And the writer gives us some background on Jeff Bradstreet.
I firmly believe outside factors not just gene’s cause autism. I finally had someone confirm that thought – the school psychometrist – when I told him about our 5 days, high bp, heart rate drops, stopped moving mess…. before the younger was born. The Ped told me it was impossible. Therefore, I believe there are those that have had vaccine reactions, but like my own situation, how do you prove it. Personally, one day I want an MRI for my son… I want to see if his brain has the autistic wiring or that of someone who’s brain has been damamged… curiousity only.
I have never used DAN Dr’s. I did read Karyn Serroussi’s book when the elder was dx’d. We were looking for more than family stories but ideas. We were handed a dx and no suggestions on getting help. We did do the dairy/gluten thing. But with a family history of IBS, his cronic diahhrea/nightmares/terrors should have been flagged instead of being told constantly it was teething or “some autistic children are like that”. It was dairy he was intolerant to and 7.5yrs later has been VERY slowly weaned back onto it. It wasn’t a cure, but IMO how can you learn if you’re sick??? So, yes, it played a roll in the speed that he has learned.
Until gov’t’s regular the Neuropathy industry as they are going to do in Ontario, until gov’t’s ban certain treatments for diseases/age levels, I refuse to judge others. If proof of harm is done and nothing is done to stop it… that is wrong. If no harm is done, gains are made within current laws/regulations… then I’ll worry about my own first.
I have an 8yr old that over the next 6mths will be forcing the school system to do what it is suppose to… It shouldn’t be this way…. But it won’t stop me from doing what is necessary for me and mine, so why would I expect differently from other parents.
you refuse to judge others?!?
Wow, that is ironic.
Seizures also happen in the absence of vaccines, and even fevers. Sometimes they just happen. No cause was ever found for my son’s first set of seizures, though his last set of seizures were thought to be caused to a now vaccine-preventable illness (and even that is not certain!).
I don’t think anyone is telling you your child is less because he/she is not saved. I would suggest that you keep trying and NEVER give up. Have you tried the Geiers’ protocal? A lot of success to be had there.
And…when you directly site friends of mine, as having been on the “front lines” with them, but refuse to identify yourself, I have serious reservations as to the sincerity of you, your story and your actual idenity. Just saying…..
Best wishes and good luck nonetheless.
Lin:
Have you actually read much of this website?
“Have you tried the Geiers’ protocal? ”
No. It would take a court order.
Then they would have to send out the search team to find where I took my kid underground.
Then they would have to shoot me before they could pull my kid out of my arms to give to the Geier team.
That after having read over and over the details of the Geier junk science and the dangers of lupron. I am extremely well informed on this subject.
By the way, Lin,
Don’t ever suggest that I have given up on my kid. Ever.
I chose to avoid the Geiers because I am well informed, not because I have “given up on my kid”.
Lin,
My child does not need to be “SAVED” from anything. I think it is absolutely ridiculous to apply that term to autism. I have some serious reservations about you as well. Anyone who would premote chemical castration of children to treat autism has some real problems. Just saying…
Lin
our anonymous guest blogger does not believe their child is mercury poisoned so why suggest the Geier’s brand of quackery? They do believe that an adverse reaction to vaccines caused neuroinflammation resulting in autism. This is consistent with the decisions in the US Court of Federal Claims where individual claims have been upheld but general causation theories concerning thiomersal and vaccine strain measles have been dismissed.
And if you think that anonymous comments are not to be trusted why not introduce yourself? You are promoting the Geiers. Do you have an undeclared conflict of interest? Just saying …
Lin, this epitomises the problem with you curebies, i.e. you feel helpless unless you are ‘doing something’, even if that means abusing your children and offering them up as lab rats for revolting medical experimentation. Heck, lab rats have more oversight than the Geier’s subjects.
Lame. The guest blogger has a right to privacy and certainly understandable given the intimidation tactics your ilk like to engage in. Anyone calling someone’s identity into question who has not identified themselves is an argument fail.
“Then they would have to shoot me before they could pull my kid out of my arms to give to the Geier team.”
If it came to that, I say shoot the Geiers!
In all seriousness, I think the Geiers can and should be prosecuted as child abusers, if not outright sex offenders, for their use of the “Lupron protocol”. I judge incarceration for the entirety of their lives to be the only lawful means to stop them from killing patients.
Psycho rant: “This is a world wide issue, someone wants children to be dumb.
There has been a change in human DNA and children are being born with a higher IQ. Some people for their vested interest do not want intelligent children. The dumb can be easily manipulated.”
Dude, the black helicopter… it’s hovering over you and your crack team of DNA experts.
But Sullivan, what if that court order actually happened? When the young man in Cleveland had aggression that led to the death of his mother, the comments at Age of Autism suggested people take up a fund to have him evaluated by Geier or Buie or Krigsman. They care about the young man. They just don’t care about his civil rights or his human rights. Justice was protected by Kim S who nixed the idea because it wouldn’t be fair to those who are already on the waitlists for those docs.
Not even as a joke. There are people being seriously threatened, and AoA cherry picks comments to make it seem like they are facing real intimidation.
An AoA regular is making comments about putting Autism News Beat in the hospital. Is that a real threat or a joke?
cs–
there is a father in Texas tring to get a court order to override his wife’s wishes. The father wants ThoughtfulHouse to do IV chelation on their kid.
Lin – the last time we had a furore here about ‘anonymous’ bloggers , one person who was very firmly in the biomed camp took it upon herself to collate and mass-distribute personally identifying information – including photo and work address – of one of her ‘opponents’ across multiple sites.
There’s a very good reason why many of us stay anonymous. Although you and your small circle of friends may think you’re all reasonable people, there are definetly elements in the anti-allopathic/pro-biomed movement who are fully willing to personalise opposition to the extent where they openly make threats, accusations and nuisances of themselves.
I suppose the better way to state my point is a motto I came up with for a fictional group of characters called the finbacks:
“The best way to stop a bullet is to shoot the other man first.”
In other words, the principle I have in mind is to shut down the Geiers’ practice before they can force matters to extremities.
Also, as far as that goes, even “extralegal” actions can be carried out by means which do not threaten human lives.
There are several people I personally know of, with classic autism and with Asperger Syndrome, who’ve also regressed after their MMR vaccines.
Asperger syndrome is not regressive. I know several people who developed cancer after a trip to the movies.
There are plenty people I personally knew of who developed acne after they started junior high.
Do you think that junior high caused their acne, Jake?
“I know several people who developed cancer after a trip to the movies.”
Maybe there was asbestos in the movie theater.
Jake Crosby,
do you have any idea how much you are stretching here? I am assuming it is a weak attempt at a joke.
I know people who regressed and were diagnosed with Asperger Syndrome.
“I know people who regressed and were diagnosed with Asperger Syndrome.”
Well done Jake.
Care to break routine and actually get round to telling us why this is of relevance?
Guest Blogger, thank you for sharing your story. It takes guts to say what you said, knowing who you associated with and their mindset.
“Asperger syndrome is not regressive.”
Nor is anything else that is on the autism spectrum. If it involves regression, then it’s either Rett’s syndrome (girls only) or Heller’s syndrome. These are classed as problems of cognitive decline; in autism cases, there is no loss of skills… no regression. It does not represent a cognitive decline.
I think Jake is a fraud. If he had Asperger’s and holds forth about these things, one would have to presume that he would know that, by definition, Asperger’s is not regressive. He would at least have taken the time to find that out.
(David: I don’t think you’re quite right. Heller’s is a disorder of slightly later onset, and generally with a much worse outcome. There are children with autism who go through identifiable regression, although the numbers fall with advances in diagnostic skill).
As for Jake, and his “I know people who regressed into Asperger’s after MMR etc”. It’s all bullshit. It only goes to show what clowns are behind the whole thing. Just idiots, who know nothing, but talk a lot. They aren’t now, and never have been, worth the time of the proverbial bucket of warm spit.
The MMR issue is over. Silly anti-vaxxers like Jake can blog, and plot and fret and fume for the rest of their lives. But it’s all over. “MMR” these days is the Maternal Mortality Rate, and the Mumbai Metropolitan Region.
The moving finger writes, and having writ, moves on.
Visitor,
Please don’t question the diagnoses of others on this blog. Diagnosing people and undiagnosing people is just not possible on the net. It is also the wrong thing to do, as many have demonstrated quite clearly.
“(David: I don’t think you’re quite right. Heller’s is a disorder of slightly later onset, and generally with a much worse outcome. There are children with autism who go through identifiable regression, although the numbers fall with advances in diagnostic skill)”
Hmm… I think I’m pretty right, having been involved in studying this sort of issue for the last ten years. The diagnostic category descriptions are very clear on this matter: autism does not involve a regression – it involves extreme deference in developmental trajectory… skills either develop by different paths or they don’t develop to a statistically “age-appropriate” level. Heller’s and Rett’s involve “apparently/entirely” typical development, signifying a different set of processes happening in the brain and how it develops.
Might want to actually compare-
F84.0 – Childhood autism
A type of pervasive developmental disorder that is defined by:
(a) the presence of abnormal or impaired development that is manifest before the age of three years, and
(b) the characteristic type of abnormal functioning in all the three areas of psychopathology: reciprocal social interaction, communication, and restricted, stereotyped, repetitive behaviour.
F84.3 – Other childhood disintegrative disorder
A type of pervasive developmental disorder that is defined by a period of entirely normal development before the onset of the disorder, followed by a definite loss of previously acquired skills in several areas of development over the course of a few months. Typically, this is accompanied by a general loss of interest in the environment, by stereotyped, repetitive motor mannerisms, and by autistic-like abnormalities in social interaction and communication.
(my italics in both extracts)
Pretty clear from these two extracts that any loss of skills (regression) places the diagnosis in F84.3 rather than in F84.0 (or even F84.1). The key question in making this via differential diagnosis is this: was development always at odds with typical development, or was development typical until a point at which skills were lost and/or at which curiosity about the immediate environment disappears?
Without asking that question, a lot of error gets into the process, and stuff like this whole bloody MMR thing happens. And we can’t afford to forget that the whole ‘regressive autism’ thing seemingly came about as a result of that Wakefield paper; that paper originally was investigating the relationship between virus particles in the gut and – guess what – childhood disintegrative disorder, otherwise known as Heller’s syndrome.
David,
Nah, you’re still not right. Your extracts are missing the age issue. You’ll find a substantial body of literature, including DSM IV, setting out Heller’s/CDD is being after at least two years of normal development. This wouldn’t generally be true for childhood autism/autistic disorder, which usually manifests in the second year or before. You need to read the differential diagnoses section of the document at F84.0.
With regard to regressive autism, this goes back decades before Wakefield. The fact that it isn’t included in the DSM is because regression isn’t diagnostic of autism, but it is of Heller’s/CDD.
I hope that helps.
Visitor…
You did your psychology degree … where?
David,
Given your last silly comment, I can’t be bothered to take the books off the shelf for you.
Just use Google. Maybe try “disintegrative disorder” “differential diagnosis” and “regressive autism” “fombonne”, or probably any noted autism researcher’s name.
It’s a new information system where you just type in the words of interest and hit the return key. You’ll pick it up.
Visitor, I asked about credentials. Maybe you don’t have them.
It’s just that I was trained in assessment and diagnosis, not just to clinical standard but to research standard (which is actually more strict than clinical practice would allow).
“Just use google”
What? Oh – I see. You’re a Google U. student, are you?
Hmmm…
Yes, I’ve read about Fombonne and others such as Klin. However, the papers I read do not convince me that “regressive autism” is autism: it looks awfully like Heller’s! Now… I don’t know if you have that sort of training (I’m going to assume, given your pathetic response to my question, that you don’t), but I do.
“It’s a new information system where you just type in the words of interest and hit the return key. You’ll pick it up.”
Want to cut the fucking sarcasm out of your comments? I might show you some respect that – up until now – you don’t convince me that you deserve.
Who knew, eh?
A Google U student thinks he know more than a post-Mag.
Sounds like a case of Dunning-Kruger to me.
Sullivan,
I haven’t diagnosed anybody. If you can see me diagnosing anybody, please tell me where I’ve done that. David has given quite wrong information, and I corrected him, courteously. He then became insulting towards me, and suggests that his qualification entitle him to belittle my courteous comments, but also the DSM IV (and ICD-10):
“Periods of developmental regression may be observed in normal development, but these are neither as severe or as prolonged as in Austic Disorder… Childhood Disintegrative Disorder, which has a distinctive pattern of developmental regression following at least 2 years of normal development.” (page 71, DSM IV)
“Disintegrative disorder (or Heller’s disease) occurs when normally developing children suddenly or over a period of several months show marked behaviour changes and developmental regression after age 2, often in association with some loss of coordination and bowel or bladder function”. (Lord & Rutter, in Rutter & Taylor (eds), Child & Adolescent Psychiatry, 3rd ed, page 581)
So the American Psychiatric Association and Professor Sir Michael Rutter FRS appear to be on board with my comments. David may feel he’s better qualified to judge.
In fact, the number of cases of CDD is very small, and many specialists in childhood developmental disorders may never see one in their careers.
I think you may find the relevant numbers on the CDC or WHO websites.
In any event, David, I’m unimpressed by your qualifications, and would suggest you desist from belittling others on that basis.
Visitor,
I was basing my comment on this statement:
“I think Jake is a fraud. If he had Asperger’s and holds forth about these things, one would have to presume that he would know that, by definition, Asperger’s is not regressive. He would at least have taken the time to find that out.”
I do not accept the use of the term “fraud” or the questioning a diagnosis. It hasn’t happened, but if the person were clearly a troll and were using claims of a diagnosis to disrupt the site, I would merely ban the poster.
While Mr. Crosby shows definite troll characteristics, I have no reason to doubt his diagnosis.
Mr. Crosby’s diagnosis has nothing to do with whether he can make accurate statements about the diagnosis, so I don’t see that it matters one way or the other in this discussion.
I apologise. You are quite right. I was wrong.
“In any event, David, I’m unimpressed by your qualifications, and would suggest you desist from belittling others on that basis.”
Mot as much as I’m unimpressed by someone who won’t put name or credentials to what they say.
Deal with being wrong on more than Sullivan pulled you up on.
Besides… I looked up Fombonne… and others, and they don’t say what you seem to think they say… but it takes a trained professional to know this.
Obviously, you aren’t one.
“David has given quite wrong information”
Prove it.
“Nor is anything else that is on the autism spectrum. If it involves regression, then it’s either Rett’s syndrome (girls only) or Heller’s syndrome. These are classed as problems of cognitive decline; in autism cases, there is no loss of skills… no regression. It does not represent a cognitive decline.”
Not to be contentious David, but I would like some clarification on this point. My older daughter (who I apparently now have no justification to call autistic?) regressed after 16 months (normal development, 50 words, down to 0 words at 24 months). I’m trying to grasp the concept that either A) you beleive that she lost interest in her environs and stopped progressing and stopped interacting which made her ‘appear to regress; or B) is something other than autistic.
Of course I’m not anywhere near a psychological authority, but I would opt for a C) The critera is written without complete understanding and further information will find more subgroups or will not care and roll them into larger groups. Admittedly, I never actually looked at the ICD-10 in detail, it’s intriguing, do they consider F84-3 CDD on the spectrum or not?
“I would like some clarification on this point.”
Sure.
“My older daughter (who I apparently now have no justification to call autistic?) regressed after 16 months (normal development, 50 words, down to 0 words at 24 months). I’m trying to grasp the concept that either A) you beleive that she lost interest in her environs and stopped progressing and stopped interacting which made her ‘appear to regress; or B) is something other than autistic.”
According to both of the standard sets of criteria, if the child’s current state is better explained/described by one set then that and only that set should lead to the diagnosis given. If something looks otherwise like autism but involves the loss of previously held skills, then autism is not to be diagnosed, because the criteria for autism do not include the loss of skills – whereas both sets for Rett’s and Heller’s syndromes do. For that reason, a diagnostician must diagnose something that looks like autism but involves regression (loss of skills, etc) as either one of the alternatives rather than autism. Like it or not, it’s how diagnosis works – at least at the standard of research diagnosis. In ICD 10, criterion C is clear on this point: “The clinical picture is not attributable to the other varieties of pervasive developmental disorders; specific development disorder of receptive language (F80.2) with secondary socio-emotional problems, reactive attachment disorder (F94.1) or disinhibited attachment disorder (F94.2); mental retardation (F70-F72) with some associated emotional or behavioral disorders; schizophrenia (F20.-) of unusually early onset; and Rett’s Syndrome (F84.12); my italics)”. This is – or should be – clear enough about what’s going on; DSM IV-TR have a similar provision for diagnostic accuracy.
“The criteria is written without complete understanding and further information will find more subgroups or will not care and roll them into larger groups.”
You may wish to believe that but the criteria have been getting clearer over time rather than muddier, so that option is very likely to be wishful thinking. As to whether CDD/HS is autism or not, the issue of regression is the thing that the argument swings on. Is there definitely a “regressive” autism”? Does that term even make diagnostic sense when we have two other categories perfectly adequately delineated for the purpose of taking regression into account (neither of which are autism – ‘classic’ or atypical – or Asperger syndrome)? Having familiarised myself over the last ten years with the literature and the ways in which the term “regressive autism” came into use (e. g., its use by Wakefield in the published version of his paper, as a substitution term for CDD/Heller’s; and other ideas – such as one prominent researcher’s description of CDD as “regressive autism” and another’s view that what might appear to be a regression is just a point at which the child has stopped imitating a handful of words learned up till that point), I’m not convinced that there is such a thing as “regressive autism” that looks any different from CDD/Heller’s – and if it looks like CDD/Heller’s rather than looking like autism (i. e., if there is a definite regression – loss of skills, etc., gained/maintained up until that point) then the diagnosis is not autism, but CDD/Heller’s syndrome (unless there are specific reasons why one should diagnose Rett’s instead). This isn’t a matter of me wanting to piss people off: this is how the diagnostic manual is written and therefore how the diagnosis has to be made.
As for your daughter’s diagnostic status, that’s for you to talk to your clinician about. But that clinician is bound to make his/her diagnosis strictly according to the criteria in either DSM IV-TR or in ICD 10. Which means that – if that person has not accounted for regression in the criteria used (and a regression has been noted in your daughter’s development) – then the diagnosis is wrong, according to the criteria as written in either of these two manuals.
If regression is not mentioned in the criteria for autism but is mentioned in those for CDD/Heller’s, then CDD/Heller’s is the diagnosis when a regression – a loss of skills/interests/etc. – is clearly evident in the child’s developmental trajectory; autism can only be diagnosed if there is not a regression.
“Admittedly, I never actually looked at the ICD-10 in detail, it’s intriguing, do they consider F84-3 CDD on the spectrum or not?”
The only categories they list as having characteristics typifying autism are autism (including atypical) and Asperger syndrome. CDD/Heller’s syndrome is not seen as typifying, but they say that there are ‘autistic-like’ characteristics after the regression; but since these are not present during early development, they cannot be said to typify autism in the way that the characteristics in F84.0, F84.1 and F84.5 do… because in F84.3, they occur after a definite regression, and in the others, they’re always there.
For visitor:
“In Autistic Disorder, developmental abnormalities are usually noted within the first year of life. When information on early development is unavailable or when it is not possible to document the required period of normal development, the diagnosis of Autistic Disorder should be made.”
About the same page as your lifted quote from DSM IV.
The quote you used would suggest to me that regressive autism cannot exist as a subtype of autism (F84.0, F84.1 or F84.5), since skills come in and out of use as others are learned and replace them. This is not, however, the sort of regression that is seen in what gets called “regressive autism” is that which is described in Heller’s syndrome.
Mr Andrews,
I’ve cited DSM-IV, Fombonne and Professor Sir Michael Rutter FRS (the “father of child psychiatry”). In contrast, you are not a clinician, and I doubt very much whether you have ever seen, or even know of, a case of Heller’s Disease. Plenty more can be Googled. This is a very serious diagnosis indeed, of devastating import to the child involved and his/her family. I only bother here with this because passing visitors may be misinformed by you. Particularly those with a child with regressive autism, who may be concerned that their own certain knowledge is dismissed at this website. You are free to have your opinions, but, in the meantime, I’ll stick with what I said, and leave you with pediatric neurologist Max Wiznitzer, MD, on Day Seven of Cedillo:
Q Do you believe that there is a phenotype of
7 autism that would be described as regressive autism?
8 A Yes.
9 Q What percentage of the autistic population
10 do you believe has regressive autism?
11 A The traditional numbers that people provide
12 is let’s say 15 maybe 20 percent. I think some of
13 those numbers are clouded by historical issues in
14 terms of families giving an inaccurate history.
15 It’s not the family’s fault. They’re
16 basically giving a history where enough information is
17 not gleaned, probably in the 15-to-20 percent range.
18 Q That 15-to-20 percent range, as far as you
19 know, has that percentage remained constant over time,
20 or has it changed?
21 A I think more recently we’ve been trying to
22 get good, accurate numbers. The numbers we’ve had in
23 the past were not that accurate, so there’s no good
24 answer to your question.
“In contrast, you are not a clinician, and I doubt very much whether you have ever seen, or even know of, a case of Heller’s Disease.”
Actually, you’re wrong. At this point I work in adult psychiatry. I was trained in assessment and diagnosis in educational and developmental psychology. My not being a medical practitioner does not mean that I do not get to make the diagnosis. As for having seen or not seen Heller’s – that’s totally immaterial to knowing how to diagnose it. Or are you going to be crass enough to say that somehow you know better than I do because I may not have seen a case of Heller’s? And how would you know that I haven’t? Statistically speaking – since Heller’s is currently understood to be considerably more rare than autism (per F84.0) – I might not have seen a Heller’s case; but the chances are that I have. I used to work in special education in the 1990s, and I came into contact with a lot of rather handicapped and disabled people, many of whom were in the “rareties” section. So that sends the chances up. Chances are – given what I know of the students we had in our school – I have seen a case of Heller’s.
Your problem is that you can’t stand being wrong. I’ve given you the reasons why I’m not convinced that there is a “regressive autism” and you are still saying you know better, and mis-quoting other people in order to support yourself on it. I go by the diagnostic criteria, and my professional training. That is something you don’t seem to have.
“I only bother here with this because passing visitors may be misinformed by you.”
Idiot. You’ve just made yourself look like a troll. Which is probably what you are. Let’s face it, you’ve already tried to undiagnose Jake Crosby by calling him a fraud— this is behaviour we’re all very aware of on this blog as being typical of a troll. Usually a concern troll, but any troll really.
Another thing, Visitor:
“The traditional numbers that people provide is let’s say 15 maybe 20 percent. I think some of those numbers are clouded by historical issues in terms of families giving an inaccurate history.”
Wiznitzer is not claiming that there is such a thing as “regressive autism”; he’s giving statistics – he’s saying he believes there is, and giving statistics that are the traditionally stated statistics. That’s up to him, but he’s a neurologist, not a psychologist. So he doesn’t think from the perspective of a psychologist who considers more factors in what brings behaviour about than a medical practitioner is trained to.
He hasn’t mentioned anything about the lack of a clear diagnostic category for anyone who regresses (i. e., loses skills, etc.) as opposed to those whose developmental trajectory does not include the development of those skills in a typical manner. Despite the fact that Heller was writing about this dementia infantilis back in 1908, we didn’t see its inclusion in the diagnostic manuals until DSM IV and ICD 10… until those came out, everything was lumped under ‘autism’; and now that it has its own category we have to get out of that way of thinking that there’s a “regressive autism” that isn’t Heller’s syndrome. I’m not convinced that Heller’s is autism per se, and that thing that gets called ‘regressive autism’ has been seen by at least one prominent researcher as being Heller’s syndrome which is really not clearing the matter up.
If all you can do is misquote, you’re certainly nowhere near understanding the issues involved. And I don’t see much evidence of you actually understanding much on this case.
I think, in conclusion, David, my view is that your overtly abusive language; your evident lack of knowledge of DSM-IV and ICD-10 criteria; your refusal to accept the judgments of professionals of international repute, who I think anyone would be bound to accept to be your betters in this matter; and your minor qualifications, would raise real questions about your suitability to diagnose children with developmental disorders, or, indeed, be involved with children at all.
That’s just my view. Whether parents who cross your path think the same, and whether management feel it appropriate to make inquiries into your “diagnoses” would be a matter for them.
I merely take you back to your woefully wrong start on this:
““Asperger syndrome is not regressive.”
“Nor is anything else that is on the autism spectrum. If it involves regression, then it’s either Rett’s syndrome (girls only) or Heller’s syndrome. These are classed as problems of cognitive decline; in autism cases, there is no loss of skills… no regression. It does not represent a cognitive decline.”
If you know of no children with autism who experienced regression and cognitive decline, I have to wonder just what you do.
Hello friends –
Semantic jockeying and absolute adherence to the fickle nature of the DSM aside, this is the point that David doesn’t seem to understand; his eloquently written elaboration on regression doesn’t conform, at all, with the experiences of anyone who knows many kids with autism.
I know about twenty families with kids with autism; well, they have autistic behaviors, and have been given either an educational, or medical diagnosis of autism; and their loss of either skills or language is around 50% from the parents I know well. I know zero children who have a diagnosis of Hellers / CDD. Do they all have Hellers? Should I believe that everyone who is diagnosing for autism at all of the elementary schools, and the university CARD center, and the state of Florida, all have it wrong, in all of these cases?
And if they all have been misdiagnosed, then what? So what? We aren’t here because we have an interest in diagnostic minutiae, but rather, because we care deeply about children whose behaviors are disabling, and are trying to determine the best way to help them navigate the world. At this point, the label is completely insignificant.
– pD
Interesting to learn more about Hellers though, and its apparent non controversial association with:
“Subacute sclerosing panencephalitis. This chronic infection of the brain is caused by a form of the measles virus that results in brain inflammation and the death of nerve cells. ”
http://www.mayoclinic.com/health/childhood-disintegrative-disorder%20/DS00801/DSECTION=causes
So, I have a child that has symptoms typical of many hundreds if not many thousands of other children (normal development with regression before the age of 2).. it is not Hellers; not atypical, not ‘Other PDD’ not ‘PDD unspecified’, but Other CDD. Speaking purely from a layman’s standpoint, I don’t have a lot of faith in neither the seemingly etheral terminologies, nor in the fact that they have not gotten around to better classifications.
Heap on to the pile the subjectivity of the parents and the health care providors (as well as the potential for ‘labels’ driving services and conversely the lack of specific services driven by them) and we have the morass we are in today.
And I’m better off with the ICD-10 criterea; with the DSM-IV, apparently my child does not have a diagnostic home…
To put my own HO on the subject at hand, I too have given up on the whole ‘we don’t know, so try everything’ mindset that is DAN…there are so many things that are a crapshoot in the therapies and treatment of ASD (sorry PDD acording to ICD-10), that I fail to see why such an ill defined dartboard created by DAN should be the preferred one to throw at…
“I think, in conclusion, David, my view is that your overtly abusive language; your evident lack of knowledge of DSM-IV and ICD-10 criteria; your refusal to accept the judgments of professionals of international repute, who I think anyone would be bound to accept to be your betters in this matter; and your minor qualifications, would raise real questions about your suitability to diagnose children with developmental disorders, or, indeed, be involved with children at all.”
Cheeky sod, aren’t you? Troll.
You’re not worth responding to.
“That’s just my view.”
Yeh. Yours. Only yours. And you don’t matter.
The University likes what I do, to the point that I was the person they asked to review the course materials for the specialist courses in autism and suggest revisions. That’s good enough for me.