About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Monday, April 7, 2008

"Autistic spectrum disorders"

In the comments sections here and here, I have been debating the merits of diagnosis with a member of the Late Talker community. I'm publishing the following exceprts from an article by Thomas Sowell, author of The Einstein Syndrome, in the hope of spurring a less destructive and more thoughtful dialogue. I invite anyone from the late talker to respond (or "set the record straight") and I will post the response as a post, rather than a comment.



The very definition of autism has been expanded in recent years to include what is called "the autism spectrum." What this means, among other things, is that there is now far more wiggle room for those whose diagnoses have proved to be wrong, who refuse to admit it, and who are now even more unaccountable than ever.

***

According to Professor Camarata, those children "with true autism" are "very difficult to treat and may never say 'mommy' or learn to take care of themselves without Herculean efforts by their parents and teachers."



***
We would see the dangers immediately if people who wear glasses were included on "the blindness spectrum" or people with harmless moles were included on "the cancer spectrum."

Blindness, cancer and autism are all too serious -- indeed, catastrophic -- to use loose definitions that fudge the difference between accurate and inaccurate diagnoses.



Sowell is not an official spokesperson for the group, but his books provide the foundation for the group's stated philosophy. In sum, the Late Talker group appears to reject the term "autistic spectrum disorder." And in the comments section here, Esthart appears to subscribe to this line of thinking. Hence, the individuals that the medical community regards as being on the mild end of the spectrum aren't autistic, according to the late talker community, because the spectrum itself doesn't exist.

The late talker group appears to stand against the entire medical community and a huge body of medical research in taking this position. Plus, if some one can be severely autistic, why does the late talker community believe some one can't be "a little autistic"? Is there something about autism that doesn't lend itself to gradations? The answer is: NO. An individual can absolutely have "mild" autism. I should know. I'm the mother of one such individual.



In the comments section, we have also been debating the merits of a quality evaluation. I agree with Esthart that a one hour evaluation (which is what Brad received) is inadequate. In Engaging Autism, Dr. Greenspan is similarly critical of evaluations that are too brief, and that don't allow the examiner to adequately observe the child with his or her parents.



However, in this blogger's subjective opinion, the group goes a step further and indirectly channels its members to a single doctor who rejects the idea of the autistic spectrum. And this is the basis for my belief that its members "have their heads in the sand" and are dodging the diagnosis.



And to those members, I say: if your child is just a little autistic, the truth will set you free. The genius versus idiot paradigm has been discredited. Your child can be "a little bit autistic," and the sky won't fall. You might even gain a better understanding of his condition. Autism is a developmental disorder, not a isolated language delay. There may be low grade sensory issues to consider. For example, the "perfect child" who never went through the terrible twos or didn't go through the terrible twos until age 3 may be under-reactive to sensory data. Likewise, the child who is prone to melting down at restaurants may be hypersensitive to sensory data. If you're avoiding developmental pediatricians that will diagnose mild autism (which is the bulk of the medical establishment), you're missing a very valuable perspective.

15 comments:

hschinske said...

I'd have a lot more respect for Sowell's opinion here if he gave concrete evidence of how a child *not* on the spectrum could be harmed by interventions aimed at children who are. *What* potentially "abusive" therapies is he talking about? And if they're as bad as all that, should we be complaining about them for *any* child?

I've read at least one of Sowell's books on the late-talking child (some time ago) and thought he had some good points. I too have a son who talked rather late and is otherwise developmentally quite ordinary (apart from a mild speech disfluency). But I don't get the hostility to the very idea of the autism spectrum, and I don't think his examples of "the blindness spectrum" and so forth hold up. There IS a blindness spectrum -- you can be totally blind, legally blind, legally partially sighted, have terrible vision that's mostly correctible, terrible vision that's completely correctable (that's me!), etc.

The reason the "blindness spectrum" is not a problem is that we have ACCURATE DIAGNOSIS of the degree of visual difficulties. I have no problem with Sowell railing all he likes against misdiagnosis of ASDs. I wouldn't be happy if my late-talking, early-reading child had been classified as possibly autistic and hyperlexic, either. But the concept of the spectrum is not what's the problem here.

Helen (not a member of the Late Talker community, by the way)

Estharth said...
This comment has been removed by the author.
Missy said...

I doubt you'll get much intelligent debate going with your post. You don't a single fact (and by fact I mean something with a SOURCE) in your post. And you don't seem to know much about Dr. Camarata's practice and credentials, either.

I refuse to debate with you on this subject, but I couldn't go without comment. I hope you'll be come more informed before you continue to make these absurd sweeping statements about the LT community. It does nothing but tear down other people - what do you truly hope to accomplish?

My son would have been diagnosed when he was 24 months old with "mild autism" had we followed blindly the word of Early Intervention. Thankfully, we questioned the diagnosis, sought out legitimate doctors (pediatricians and speech pathologists). I saw on your blog how you cried and cried at the thought that your son might never say "I love you" or give you kisses. Well, guess what. We had to be patient, yes PATIENT, and our son gives us (and others) tons of kisses and hands out "I love yous" to us on a daily basis. He's 3.5 now and he is learning to communicate and he's a joy every single day. He's also attending a regular preschool and getting along splendidly.

Here's the kicker. If we had not "buried our head in the sand" as you like to put it, we would have obtained a wrong diagnosis. I realize you think there is no harm in this, but you are very, very sadly mistaken. Our son has been diagnosed with mixed expressive/receptive language disorder. Had we accepted the autism suggestion that was made, he would have received "services" that were the OPPOSITE of what he requires and likely would have been terribly detrimental to the progress he has made.

I know how trying it can be to deal with a child who is like our kids. It is not fun all the time. And you deal with folks every which way telling you what you're doing is wrong. Believe me, my heart truly goes out to you - I've walked that road. It's easy to follow the path of least resistance (whether that's saying your child is simply a late-talker or jumping head first into the autism awareness crowd). Trust me, I was tempted to throw in the towel when things got really rough, but I didn't. I don't care what your opinion is about how we've chosen to help our child. We know we're doing what's best for him. I don't care what your opinion is about the Late Talker crowd or Dr. Camarata. I do, however, care about YOU as the parent of a unique child. I really hope that you'll drop this debate of LT vs. Mild autism and just focus on your family and helping to build up other folks who are in the same boat as you regardless of what their diagnosis is or how they choose to accept said diagnosis.

Perhaps you can reach out to other parents of mildly autistic children rather than lashing out at those that have different opinions. Life's too short.

Best of luck to you,

Missy

Estharth said...

....I'd have a lot more respect for ....Sowell's opinion here if he gave concrete evidence of how a child *not* on the spectrum could be harmed by interventions aimed at children who are.....
Response :
We should not read Sowell's book as a medical study. It is not .
Researchers will tell you that.
It is a journalistic approach, asking questions at a time when people were ( and still are as one can see ) about whether all professionals are using scientific protocol in childhood evaluations. Many studies start this way, a question is asked, and not always the right suggestions for answers are made. His questions about procedure were certainly on target, but not all suggestions are.
If you like, I would be happy to provide people to comment regarding the question of misdiagnosis and appropriate treatment.
But, if one comes from a crazy position that anyone who does not learn exactly the same in speech, so therefore has to be clinical, it is useless to reason with these individuals.
Yes, there are children harmed by innapropriate therapies due to innacurate sloppy diagnostics.
The worst of it has been , ...autism diagnosis when children have had real medical problems that did not get treated.
I knew one child who had a serious medical condition of the brain slipping down below the skull , and it was missed because the focus was autism.
Countless times muscle impairments have been missed due to the focus being autism.
In the sixties, children were often seen as mentally retarded when they were not. I can personally tell you what it is like to not get the right education in the beginning because people assume you are retarded when you are not. The affect on a person can be for years.
More mild are children being forced to talk when they needed language exposure,....they took longer to talk as a result,( through studies this has been proven) for example ...... attitudes of therapists who treat the child as though they do not want to talk.....Instead of working with the child to get language.
Now the problem is, the entire fiasco of this blog is people who have provided reasonable responses to some author's rewritten definitions .

....But I don't get the hostility to the very idea of the autism spectrum, ....

Good question. The best analogy is,
Disagreeing with 2 plus 2 equaling 5 is not an action of hostility but disagreement.
There is a reasonable question to relying on an invented spectrum as an absolute scientific reality in which almost all behaviors and personality become clinical.
The reaction is not hostility, but questioning.( of course one author will read this and will go on with her delusional fantasies about people's intent anyway, and will say its hostility)
There is perfect reasoning to question extremes to any approach, such as the blog author's redefinition of late talking .
Synesthesia ( if one was to look it up ) does not put one on an autism spectrum. But, more people with autism have synesthesia.Does this put every single person with synesthesia on a spectrum ?
Lack of facial recognition is definitely more prevelant within the autism community, but there are people who lack facial recongition who are not autistic - no symptoms at all. So late talking as an automatic autism diagnosis is just plain absurd.
These issues must be looked at scientifically , and not hysterically through a blog screaming accusations at group lists who are not necessarily accurate at every moment.
These are parents who on the most part , in their gut know that the wrong procedures are being used on their child.
They might not know exactly why, but they are asking questions and they should.
Some have children who result in autism diagnosis, medical issues, some cases of apraxia, some spontaneous language acquisition, some receptive language issues, and some simple expressive language issues.
Isn't it interesting that one would get hysterical about that ?
The original author seems to feel that no one is allowed to question a professional.
Its almost a type of Stockhom syndrome.I have seen this strange pattern before.

Missy said...

Oops - wanted to clarify -
when I said "We had to be patient, yes PATIENT, and our son gives us (and others) tons of kisses and hands out "I love yous" to us on a daily basis" I meant to point out that he did NOT do this at 24 months and he's doing it now. :)

sarahgepp said...

aI first have to say that I have enjoyed your blog. I really like the term "a little bit autistic" and think that it describes the idea that autism is, in fact, a spectrum disorder. I am also a new member of the LT group and find most of the information there valuable as well. I do think that there is a tendency in that group for some members to avoid considering an autism diagnosis when their child has many glaring symptoms of autsim. That being said, my question would be: what is the true difference between HFA and a speech delay that includes other subtle developmental issues such as sensory disorders? I am still really unclear on this and will use my son as an example to help better illuminate my point. He is 43 months and is in ST. He can talk in full sentences but is not able to carry on a conversation. My 6 year old son was also speech delayed but quickly caught up to his peers and did not have some of the other behaviors that my youngest has. My three year old is very friendly, intelligent, and engaged but there are some things he does that have me wondering. He scripts more frequently than most kids his age, for instance. He also loves fans and turning on and off light switches which I think goes beyond just a normal curiosity with cause and effect. He also has some sensory issues (both sensory seeking and sensory avoiding). Also, since the minute he could get around he has tried to escape. (In the autistic community this is referred to as elopement and often is tied into sensory issues.) He does not have some of what people might consider the more "common" behaviors you see with kids with ASDs. He does not flap or spin or line things up, for instance. He has good eye contact, seeks social contact (although he get overwhelmed in groups) and he does not have atypical meltdowns. He is also is in a Montessori school with NT children and does well. That does not, however, clear him from being a child who would benefit from some of the therapies geared towards autistic children. Much of what I observe about him is just a "feeling" that something is not right. He has an incredible memory and with probably turn out to be an early reader, but I think that these traits go beyond just being exceptionally intelligent. When I interact with him it is just obvious to me that he is not your NT kid. Am I going to run out and get a diagnosis? Not at this point but I do think that there are some therapies that are widely used with autistic kids that would work really well for my son. Dr. Greenspan's books, for instance, have been especially helpful.
Missy, I happen to think that this is a very interesting and worthwhile debate because, in the end, we could all learn alot from each other. We are all here to do what is best for out children. I have learned much from the LT group, especially in the resources section, but I have also found the discussions on various autisim boards enlightening as well.

hschinske said...

Laura, you may be interested in the comments thread at http://www.autismvox.com/thomas-sowell-on-false-diagnosis-and-genuine-autism/

Estharth said...

Yes, you can already see from the article there are misundestandings about what Sowell says, and also what he represents in this whole world of diagnostics.
Just as we have the hysterical fanatics who are convinced that late talking is autism, as well, you can have the other extreme of those who "avoid" a diagnosis or any evaluation -( no by the way, now are those examples another kind of spectrum ? ) To judge parents along these lines alone also creates its own illusion - the results are obvious here - in the slandering .
The point is you have people in both arenas.
Both are equally harmfull, but there is a middle group looking for reasoning.
The people who hysterically scream that all and everything is autism, and all parents are idiots with their heads in the sand and must listen to the great gods of evaluation no matter how poorly or carelessly done, are just as counter productive as those who don't bother with finding anything out about their child.
Both groups are harmful because they use sloppy thinking and reasoning.
The bottm line is label is only as far insurances purposes and pcychological control, whereas - *diagnosis* with appropriate therapy is really what parents should be seeking if they are using any responsibilty at all.
If one was to watch and listen to the autism awareness networks carefully, one would realize they are telling you exactly just that...... the "screenings" are not a diagnosis, but merely an aid to further exploration and full evaluation that is supposed to be done on a child.
What this means is they don't necessarily advocate sloppy diagnostics either - when asked closely, they as well recommend a full impartial evaluation. I watched the CNN program, and watching closely, they are very careful - in general they are not advocating the crazy hysterical bandwagon some are promoting.
Estharth

Missy said...
This comment has been removed by the author.
Missy said...

Deleted previous post b/c my links didn't work.

~~Missy, I happen to think that this is a very interesting and worthwhile debate because, in the end, we could all learn alot from each other. We are all here to do what is best for out children. I have learned much from the LT group, especially in the resources section, but I have also found the discussions on various autisim boards enlightening as well.~~

Sarah - you make a valid point. However, I wasn't arguing that this is not a valid debate. I was arguing that the original poster's stance is disrespectful toward people who have different viewpoints

~~ex. "And to those members, I say: if your child is just a little autistic, the truth will set you free." ~~

and also that she doesn't use factual data (at least that she has provided a source for) and therefore her post doesn't provide a very valid foundation for a good, old-fashioned debate.

~ex. "The late talker group appears to stand against the entire medical community and a huge body of medical research in taking this position."~~

~Incorrect information example: "However, in this blogger's subjective opinion, the group goes a step further and indirectly channels its members to a single doctor who rejects the idea of the autistic spectrum."~~ Do you even know anything about Dr. Camarata?!

Dr. C interview transcript (note the end of the interview when he talks about the autism spectrum)
More about Dr. C's work


It's not edifying in the least to have a debate with someone who says "you are in denial, you're burying your head in the sand." I can't learn much (if anything) from someone who shows such blatant disrespect for my beliefs.

Laura said...

Thank you so much for the thoughtful replies. You've given me a lot to think about! I'm traveling right now, and using a public hotel computer. Will post on Friday.

Laura said...

Helen - thanks for the link!

Sarah - hi, and thanks for chiming in! You wrote: "what is the true difference between HFA and a speech delay that includes other subtle developmental issues such as sensory disorders?" I don't think there is a difference. Mild autism is defined as some one who has specified communication and social impairements, and who displays certain behaviors. The last prong is linked to the sensory issues, in that childen on the spectrum present with certain behaviors because they have difficulty self-regulating. In a child on the mild end, that sensory challenge may be difficult to detect, and it may manifest itself in something like toileting. For example, a child who is underreactive to sensory data will have trouble holding in pee, not because he doesn't understand or have the muscle control, but simply because he's not aware that he's wetting himself. Or why a child on the mild end of the spectrum doesn't respond to his name. By contrast, a child on the severe end of the spectrum will do things like flapping arms and rocking to self regulate or "stim". ps I'm eventually going to turn this discussion into a post.

Estharth said...

Here is a redefinition of the DSM IV on this blog, below :
....Mild autism is defined as some one who has specified communication and social impairements, and who displays certain behaviors. The last prong is linked to the sensory issues, in that childen on the spectrum present with certain behaviors because they have difficulty self-regulating.....

If one reads the real definition - the above statement is incorrect, and is a far cry from what is written in the DSM IV .
I suggest to anyone out there to make sure they go to medical sources before reading a blog on what someone "thinks" autism is.
There is a spectrum of autism diagnosis - that spectrum exists *within* the spectrum of autism itself.
Hearing problems are not autism.
Difficulty in learning language is *not* autism - not even on the "milder" end.
Apraxia is not autism.
Cognitively challenged or MR is not autism - in that also exists difficulty in learning language.
These are all different areas within the DSM IV.
Even with my stating this still always check with the sources- that is where the dependable information is.
People can misinform all they want, but any parent out there really needs to be sure they are getting their information directly from professionals , DSM IV , and not amatuers.
This is why some discussion groups make it a point to be sure there are competant professionals on their list for advice.
The DSM IV in some form, used to be readily available online, and is not anymore in its entirety, and has increased some of the misinformation on the internet.
It is still subjective, but certainly more objective than amatuerish stretched fantasies.

Estharth said...

This should help -
Autism FAQ - Definition of Autism

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The following is from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM IV):

DIAGNOSTIC CRITERIA FOR 299.00 AUTISTIC DISORDER
A. A total of six (or more) items from (1), (2), and (3), with at
least two from (1), and one each from (2) and (3)

(1) qualitative impairment in social interaction, as manifested by
at least two of the following:

a) marked impairments in the use of multiple nonverbal behaviors
such as eye-to-eye gaze, facial expression, body posture, and
gestures to regulate social interaction

b) failure to develop peer relationships appropriate to
developmental level

c) a lack of spontaneous seeking to share enjoyment, interests, or
achievements with other people, (e.g., by a lack of showing,
bringing, or pointing out objects of interest to other people)

d) lack of social or emotional reciprocity ( note: in the
description, it gives the following as examples: not actively
participating in simple social play or games, preferring solitary
activities, or involving others in activities only as tools or
"mechanical" aids )

(2) qualitative impairments in communication as manifested by at
least one of the following:

a) delay in, or total lack of, the development of spoken language
(not accompanied by an attempt to compensate through alternative
modes of communication such as gesture or mime)

b) in individuals with adequate speech, marked impairment in the
ability to initiate or sustain a conversation with others

c) stereotyped and repetitive use of language or idiosyncratic
language

d) lack of varied, spontaneous make-believe play or social
imitative play appropriate to developmental level

(3) restricted repetitive and stereotyped patterns of behavior,
interests and activities, as manifested by at least two of the
following:

a) encompassing preoccupation with one or more stereotyped and
restricted patterns of interest that is abnormal either in
intensity or focus

b) apparently inflexible adherence to specific, nonfunctional
routines or rituals

c) stereotyped and repetitive motor mannerisms (e.g hand or finger
flapping or twisting, or complex whole-body movements)

d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following
areas, with onset prior to age 3 years:

(1) social interaction

(2) language as used in social communication

(3) symbolic or imaginative play

C. The disturbance is not better accounted for by Rett's Disorder
or Childhood Disintegrative Disorder


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The following definition is from the Autism Society of America:

AUTISM is a severely incapacitating lifelong developmental disability that typically appears during the first three years of life. It occurs in approximately fifteen out of every 10,000 births and is four times more common in boys than girls. It has been found throughout the world in families of all racial, ethnic and social backgrounds. No known factors in the psychological environment of a child have been shown to cause autism.

The symptoms are caused by physical disorders of the brain. They include:

Disturbances in the rate of appearance of physical, social and language skills.
Abnormal responses to sensations. Any one or a combination of senses or responses are affected: sight, hearing, touch, pain, balance, smell, taste, and the way a child holds his body.
Speech and language are absent or delayed while specific thinking capabilities might be present.
Abnormal ways of relating to people, objects and events.
Autism occurs by itself or in association with other disorders which affect the function of the brain such as viral infections, metabolic disturbances, and epilepsy. It is important to distinguish autism from retardation or mental disorders since diagnostic confusion may result in referral to inappropriate and ineffective treatment techniques. The severe form of the syndrome may include extreme self-injurious, repetitive, highly unusual and aggressive behavior. Special educational programs using behavioral methods have proven to be the most helpful treatment.

AUTISM IS TREATABLE -- Early diagnosis and intervention are vital to the future development of the child.


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Note: an example of a dictionary-definition of autism is: "absorption in fantasy as escape from reality". Obviously there is a big difference between the traditional definition documented by dictionaries and the syndrome this memo addresses. The difference stems from changes in word usage: in the 30s and 40s, psychologists first observed a number of children with the above symptoms and called it "early infantile autism", borrowing the word "autism" which had already been applied by psychologists to describe people who try to escape from reality. Today, most discussion of autism (at least in the USA) centers on children diagnosed as having "early infantile autism" and everyone refers to it simply as "autism". But occasionally there is confusion when someone who means "early infantile autism" talks to someone who is thinking of the original definition. In this document, we will use the term "autism" in the sense of "early infantile autism" and refer explicitly to "early infantile autism" only when discussing both senses of the word.

The definition of the syndrome listed above is oriented to children, but note that such children do not outgrow their autism. Much of the literature on autism deals with children because educating them is such a big issue that more research, education, and writing on autism is about children than adults.

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Parag said...

The majority of the children can be selfish but autistic children might seem rude, mean and inconsiderate with other kids around them. They do not share toys with other kids in short they are very selfish. Mostly they prefer to play with the same toys and the same manner of play they used to.

Autism spectrum disorder