Monday, April 28, 2008
Brad's SLP, my most trusted advisor in all things Brad, is going to sit in for one of Brad's Floortime sessions, administered by the "specialty provider", who is really an ABA provider (also referred to as a "BE"). The SLP is going to try to give the BE some gentle guidance on Floortime.
Who will be the victor?
Monday, April 21, 2008
When...behaviors are falsely characterized as unique symptoms of a tragic disorder, "severe autism," the repercussions are harmful to all autistics. Those with the Asperger's diagnosis may be denied access to services because of the mistaken view that they can have only mild problems.
Conversely, autistics who fall into other diagnostic categories are at risk of being written off as worthless burdens to society. And the prevalence of "severe autism" stereotypes, often perpetuated by nonprofit groups that drum up publicity for their fundraising activities by depicting autism in the most pathetic light imaginable, has caused many people to support eugenics research to eliminate the entire autistic population by means of prenatal testing and abortion.
Friday, April 18, 2008
Specifically, in an article entitled "The Truth About Autism: Scientists Reconsider What They Think They Know," Wired reports:
"One of the leading researchers...is Laurent Mottron, 55, a psychiatrist specializing in autism...By the mid-1990s, Mottron was a faculty member at the University of Montreal, where he began publishing papers on "atypicalities of perception" in autistic subjects. When performing certain mental tasks — especially when tapping visual, spatial, and auditory functions — autistics have shown superior performance compared with neurotypicals. Call it the upside of autism. Dozens of studies — Mottron's and others — have demonstrated that people with autism spectrum disorder have a number of strengths: a higher prevalence of perfect pitch, enhanced ability with 3-D drawing and pattern recognition, more accurate graphic recall, and various superior memory skills."
These strengths correlate to those identified by Sowell as typical of late talkers, but Sowell asserts that such strengths are proof positive that late talkers aren't in fact autistic. That and "he attended college!" And hundreds, if not thousands, of parents cling to the "Einstein Syndrome" based on this type of specious logic and anecdotal nonsense.
The icing on the cake: experts speculate that Albert Einstein, the beloved namesake for the "syndrome" Sowell coined, may have actually played for the other team. Ditto for Beethoven, Mozart, Hans Christian Andersen and Immanuel Kant.
Thursday, April 17, 2008
Brad's early intervention services have exceeded my expectations on many levels. Brad's speech language pathologist and occupational therapist are both trained in Floortime, and work the philosophy into the therapy. So they, along with the developmental specialist, are working in concert to foster his overall development, rather than focusing exclusively on their discrete specialties. The results have been incredibly positive. Brad's speech has exploded, he attends better, follows directions better, uses speech spontaneously, often seeks social praise and his muscle tone has greatly improved. We do OT exercises every day, which he seems to genuinely enjoy.
The "specialty service provider" is underwhelming. In theory, we're getting Floortime, but in practice, it's really ABA on the floor, minus the M&Ms. It's entirely instructor-led, not child-directed. Also, they appear to be using the same progress and evaluation system used for ABA, in that the daily notes aren't notes at all - they're plus and minus signs. For example, under the row heading "responds to name", there will be plus marks for when he responds and minus marks for when he doesn't. She's graphing it too. I'm not an expert, but I believe these working papers are the tools of the behavioral approach. Which is fine, but it's not what we signed up for.
Also, the therapist uses "prompts." For example, when Brad doesn't respond to his name, she touches his face. Well Brad doesn't like that. At all. Brad's speech language pathologist confirmed that such a prompt is inconsistent with a child-led approach.
I'm going to continue with the specialty provider through May 12, which is when I have my next visit with the developmental pediatrician. At that point, I'll have a better indication of his hearing as well. Unless my developmental pediatrician talks me out of it, I'm inclined to kick the specialty service provider to the curb.
Saturday, April 12, 2008
Esthart has copied and pasted the DSM-IV "autism" diagnosis here. The American Pediatrics Association indicates:
"Autistic disorder is the term used when a child meets all the necesary criteria listed in the DSM-IV. Children with autistic disorder have problems with language skills that are absent, delayed or abnormal; problems relating to others socially; and unusual or repetitive behaviors. While social symptoms are usually present in the first year of life, language problems show up in the second year and stereotypic behaviors show up later." [Emphasis added.]
Source: Understanding Autism Spectrum Disorders (ASDs)
The "autistic spectrum", which is almost universally adopted, is comprised by autism (as defined above), aspergers and "PDD-NOS". AAP describes PDD-NOS as follows:
Children with PDD-NOS or atypical autism show some signs of autism or other PDD, but don't meet the criteria to be diagnosed with one specific disorder.
Source: Understanding Autism Spectrum Disorders (ASDs)
I use the term "mild autism" to refer to PDD-NOS, and the term "classic autism" to refer to autism as defined above. I argue that the distinction between the two is one of degree or quantity, and not of quality. This is far from commonly accepted. Many object to the term "mild autism" because the connotation may be a lesser need for services, and many parents with children on the mild end of the spectrum embrace these services. However, I don't believe in diagnosing for services or adopting nomenclature to justify services. Rather, I believe in intellectually honesty above all.
I don't use the label "HFA" or high functioning autistic. While I endorse the notion that autism exists in gradations or degrees, I don't believe that we have to measure degree by reference to function. My son is generally pre-verbal and is still in diapers. He certainly doesn't qualify as "high functioning." Yet, he is distinguishable from other autistics in terms of degree. Hence, my preferred terms "a little bit autistic" and "mild autism." "High functioning autism" is an analytical void, from my son's perspective.
What then do I mean when I write, for example, "my son is autistic"? I don't mean that he has classic autism. Instead, I mean he's on the autistic spectrum.
Now, lets loop back to the central assertion that is causing the members of the late talker group so much consternation. Namely, that late talkers are per se mildly autistic. Again, I'm not
suggesting that any of the late talkers have classic autism.
As summarized above, children with PDD-NOS or mild autism present with symptoms from three general categories: language, social and behaviors. Late talkers, by definition, have a significant language delay. Socially, by definition, most late talkers present as aloof or, as Sowell euphemestically puts it "strong willed." Sowell further concedes that these children often have difficulty sustaining eye contact and responding to their name. These "traits", in the aggregate, are generally enough to implicate social impairment for PDD-NOS diagnostic purposes.
The remaining category, behaviors, is nebulous when it comes to late talkers and mild autism, especially in the preschool years. Toddlers - neurotypical and autistic alike - tend to cling to nonfunctional routines, and engage in repetitive behaviors such as lining up blocks. Dr. Greenspan describes this category as secondary, and includes within its scope the tendancy to: "persevate (for example, lining up objects repetitively), flap hands, or self stimulate (for example, staring at a fan, rubbing a particular spot on the floor, and so forth)." (Source: Engaging Autism. ) Hence, this category is related to sensory dysfunction. With respect to mild autism, if the sensory dysfunction is mild, then so too will the resulting symptoms, if any.
In sum, my sweeping generalization - that late talkers by definition are mildly autistic - isn't a leap in logic at all. And that is why Sowell argues that the spectrum itself doesn't exist, rather than arguing that late talkers don't meet the diagnostic criteria.
Now lets explore differential diagnosis. SarahGepp invited me to weigh in on this issue (here):
"[W]hat is the true difference between HFA and a speech delay that includes other subtle developmental issues such as sensory disorders?"
If it's just speech delay and mild sensory issues, I wouldn't say it's mild autism unless there were also a social impairment. She describes her son as follows:
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." [Emphasis added.]
It's not my place to ascribe a diagnosis to any particular child. I would follow my instinct, if I were you. Just don't be afraid of doctors. That's my message. The issue of eye contact is interest to me. Brad makes good eye contact too. When he was evaluated, however, they said he didn't use it to regularly "check in", the way a neurotypical child does. It's subtle, but detectable. In terms of the sensory issues, I recommend that you read the book, The Out of Sync Child.
Friday, April 11, 2008
The purpose of this blog is to provide a firsthand account of my journey. At the time, I believed the myth that autistic children are incapable of feeling or expressing love. In Engaging Autism, Dr. Greenspan dispels this myth. Of a group of parents he studied, Dr. Greenspan writes:
Almost all the parents tell us about wonderful, warm, intimate moments with their children at home, and say they would like more of these moments and wish their child could verabalize love and warmth. We show the parents how to create such moments by helping the child communicate his emotions more effectively.
(Props to Judith at Autismville for loaning me the book.)
Now a quick recap of where I've been and where I am - the stages of autism acceptance, if you will:
Stage One: Anger and denial
Stage Two: Emotional despair
Stage Three: Curiosity
Stage Four: Hope
Thomas Sowell argues that the mild autism diagnosis causes unnecessary alarm. I concede that the diagnosis was alarming and very scary. But it's only because the media and, sadly groups such as Autism Speaks, perpetuate the myth of Big Scary Autism. The answer shouldn't be to spare parents alarm by not diagnosing the children properly; the answer has to be to dispel the myth.
1. Outstanding and precocious analytical and/or musical abilities
2. Outstanding memories
3. Strong wills
4. Highly selective interests,leading to unusual achievements in some areas and disinterest and ineptness in others
5. Delayed Toilet Training
6. Precocious ability to read and/or use numbers and/or use computers
7. Close relatives in occupations requiring outstanding analytical and /or musical abilities
8. Unusual concentration and absorption in what they are doing.
In The Einstein Syndrome, Sowell acknowledges that many of these individuals have difficulty sustaining eye contact and responding to their names.
To clarify, when I use the term "late talker", I'm referring a late talker as described by Sowell, and not an individual who just has a speech delay.
Monday, April 7, 2008
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.
Saturday, April 5, 2008
Babble, the ubiquitous mommyblog, delves into the mild side of autism. "My autistic son doesn't need to be fixed," writes Kerry Cohen.
My thoughts exactly when I met with a representative from an agency that specializes in ABA. "My son is on the mild side," I informed her. "Why wouldn't I start with a therapy like Floortime?" I asked. "Because ABA will normalize your son," she responded knowingly. And that's when I started to run in the opposite direction. The literature she left behind was peppered with similar promises to "normalize" my son.
Thursday, April 3, 2008
Farewell late talker group. A few parting thoughts: educating myself about autism has been quite liberating. I don't live in fear of a label. I encourage anyone who is contemplating dodging the diagnosis to learn more about the neuroscience of atypical development. It's fascinating. If you're looking for hope and optimism, you don't need to duck your head in the sand.