Autism Rate is Irate!

http://www.nytimes.com/2012/04/08/sunday-review/the-autism-wars.html

Tomorrow's *New York Times* (Sunday, April 8) has an article in its Sunday Review section: "The Autism Wars" by Amy Harmon.

Here are some excerpts:

[begin excerpts]

THE report by the Centers for Disease Control and Prevention that one in 88 American children have an autism spectrum disorder has stoked a debate about why the condition's prevalence continues to rise.

The C.D.C. said it was possible that the increase could be entirely attributed to better detection by teachers and doctors, while holding out the possibility of unknown environmental factors.

But the report, released last month, also appears to be serving as a lightning rod for those who question the legitimacy of a diagnosis whose estimated prevalence has nearly doubled since 2007.

As one person commenting on The New York Times's online article about it put it, parents "want an 'out' for why little Johnny is a little hard to control."

Or, as another skeptic posted on a different Web site, "Just like how all of a sudden everyone had A.D.H.D. in the '90s, now everyone has autism."

The diagnosis criteria for autism spectrum disorders were broadened in the 1990s to encompass not just the most severely affected children, who might be intellectually disabled, nonverbal or prone to self-injury, but those with widely varying symptoms and intellectual abilities who shared a fundamental difficulty with social interaction.

As a result, the makeup of the autism population has shifted: only about a third of those identified by the C.D.C. as autistic last month had an intellectual disability, compared with about half a decade ago.

Thomas Frazier, director of research at the Cleveland Clinic Center for Autism, has argued for diagnostic criteria that would continue to include individuals whose impairments might be considered milder.

"Our world is such a social world," he said. "I don't care if you have a 150 I.Q., if you have a social problem, that's a real problem. You're going to have problems getting along with your boss, with your spouse, with friends."



Some parents bristle at the notion that their child's autism diagnosis is a reflection of the culture's tendency to pathologize natural variations in human behavior.

Difficulty in reading facial expressions, or knowing when to stop talking, or how to regulate emotions or adapt to changes in routine, while less visible than more classic autism symptoms, can nonetheless be profoundly impairing, they argue.

Children with what is sometimes called "high functioning" autism or Asperger syndrome, for instance, are more likely to be bullied than those who are more visibly affected, a recent study found -- precisely because they almost, but don't quite, fit in.



According to the C.D.C., what critics condemn as over-diagnosis is most likely the opposite.

Twenty percent of the 8-year-olds the agency's reviewers identified as having the traits of autism by reviewing their school and medical records had not received an actual diagnosis.

The sharpest increases appeared among Hispanic and black children, who historically have been less likely to receive an autism diagnosis.

In South Korea, a recent study found a prevalence rate of one in 38 children, and a study in England found autism at roughly the same rate -- 1 percent -- in adults as in children, implying that the condition had gone unidentified previously, rather than an actual increase in its incidence.

Those numbers are, of course, dependent on the definition of autism -- and the view of a diagnosis as desirable.

For John Elder Robison, whose memoir "Look Me in the Eye" describes his diagnosis in middle age, the realization that his social awkwardness was related to his brain wiring rather than a character flaw proved liberating.

"There's a whole generation of people who grew up lonelier and more isolated and less able to function than they might have been if we had taken steps to integrate them into society," he said.

Yet even some parents who find the construct of autism useful in understanding and helping children others might call quirky say that in an ideal world, autism as a mental health diagnosis would not be necessary.

"The term has become so diffuse in the public mind that people start to see it as a fad," said Emily Willingham, who is a co-editor of "The Thinking Person's Guide to Autism."

"If we could identify individual needs based on specific gaps, instead of considering autism itself as a disorder, that would be preferable.  We all have our gaps that need work."

[end excerpts]

IEP's and Autism Spectrum Disorder

I've just returned from my third IEP meeting this week. These IEP meetingss were for children, all in grades 4-8, with Autism Spectrum Disorder, all high functioning, two were students who would be better diagnosed with Asperger's Disorder.

Oddly none of these IEP's mentioned an intervention for social cognitive deficits! None! There were concerns for behavioural issues (that's usually how I get asked to a meeting, because I specialize in behavioural disorders), academic problems and anxiety, two IEP's mentioned anxiety.

An IEP needs to FOCUS on the disorder which lead the child to be classified or designated ("coded" in BC schools) and bringing about the IEP.  At the team meeting I discovered the reason for this lack of focus on the student's social cognitive deficits: No properly trained staff to implement an intervention. Sad, but true!

Academic goals were the most common issues addressed in the IEP. Parents of course want their children to do well academically so they often go along with an IEP that addresses one academic goal after another. Who doesn't want their child to do well in reading or math? But the child is receiving support services for a deficit of social cognition - not an academic deficit. Why don't these IEP's address this issue?

Almost always there was this, "Tommy will learn to ....." Fill in the blank. Seldom did the IEP mention how he would "learn to...."  And seldom did it mention any issue in relationship to the psychoeducational assessment the student should have had prior to the IEP? (I can't tell you how often I go to schools in BC and find no real psychoeducational assessment for a child that is "coded." This is NOT suppose to happen,  but it does. )

The psychoeducational assessment should be on the table, literally on the table, at every team meeting. It contains valuable information on the student's strengths and weaknesses that can help us determine which interventions will be successful, and which will not be. Often the "list of strengths and weaknesses" is nothing more than a list of comments taken at the beginning of the meeting. Don't waste this valuable information! And every parent should review the psychoeducational assessment with the school psychologist to see how the real data (as compared to opinions) relates to the IEP.

If your child has autism spectrum disorder, Asperger's Syndrome or another related problem with social cues and communication his or her IEP needs to address that. The IEP needs to say what the deficit is, how it will be supported, what tools and techniques will be use, who will implement them, how often for how long (so important!) and how we will measure the outcome. How will we know things are getting better. It's as simple as that.

Here is a simple IEP outline I like:
http://trainland.tripod.com/sample.htm

Ontario's IEP can be found here:
http://www.ontariodirectors.ca/IEP-PEI/IEP-PEI_Eng_Downloads/autism%20-%20sec.pdf

What's important is to ask yourself, "Are the areas that had deficiencies during the assessment for my child's diagnosis addressed in the IEP?" (This means the original assessment for the autism diagnosis done at the hospital or by a private clinician - you were asked to supply this in order to get services, and the psychoeducational assessment that was either part of that or came later.)

This means sensory issues, social cognition/social reciprocity (NOT social skills!), communications, behaviour, motor issues. These must be covered!

Recently I spoke with a parent who told me that she didn't get a copy of her son's IEP, but the school would send it if she wanted it... I was rather surprised to say the least. I asked what services her son was getting. Remember, he has autism, has an IEP, his school gets specific funding to provide support. Her answer was: "They are keeping an eye of him." Regretfully I've heard this too many times. Keeping an eye on things means we will wait for failure, then act. That's not a plan.

A key issue to remember is this: Your child, no matter how high or low functioning he or she is, needs to develop a set of skills they can use to approach life with. These skills are best taught when things are going well. Not during a crisis. This is why I tell parents and teachers not to avoid the use of basic tools like visual supports - so often abandoned because "my child is more advanced..." Visual supports, anti-anxiety skills, relaxation skills.

An IEP is an important document. It's a contract between you and the school. Make sure it tells you enough to know what to expect as outcomes for this year ....and upon graduation. Take the IEP process serious. Look up sample IEP's on the web. Talk to other parents. See a psychologist and ask him or her to look over the IEP before you sign it. Bring someone to the IEP with you. Go to every meeting.

Autism Rate continue to Climb and Climb and Climb

The likelihood of a child’s being given a diagnosis of autism (ASD), Asperger's Syndrome or a related disorder seems to have increased more than 20 percent from 2006 to 2008. The New York Times and other major papers have proclaimed a definite rise.

Click here to view the article from the NYT
http://www.nytimes.com/2012/03/30/health/rate-of-autism-diagnoses-has-climbed-study-finds.html

Reading the New York Times we see there is a new report from the US Center for Disease Control (CDC) which estimates that in 2008 one child in 88 received one of these diagnoses (by the age of 8), known as autism spectrum disorders or ASD, compared with about one in 110 diagnosed with ASD two years earlier. Does this indicate that we are seeing an epidemic of autism, as some have speculated, or is the issue one of changes in the way we diagnose autism, or that we (doctor, teachers, parents) now pay more attention to the symptoms and therefore notice and then diagnose more children? At this point, it's not clear.

As some have suggested, one possibility is that we are seeing the result of better detection rather than a real surge in autism. However, there are some striking parts of this new CDC study that again makes us wonder if there isn't really an increase in the number of cases.

One report notes, "The rate of autism increased by more than 45% from 2002 to 2008 in numerous sites. It was a larger and more consistent increase than from 2002 to 2006. The increase was also very uneven in terms of geography, gender, race and ethnicity. Some sites had nearly five times as many children with autism as others. In several sites, almost 1 in 33 8-year-old boys were diagnosed with autism. This seems difficult to believe, particularly when these sites had smaller samples and children with less severe intellectual disabilities. One wonders if some sites became part of the study because of a long-term commitment to autism services, and this had drawn certain families to live nearby, resulting in an increase in the frequency of diagnoses made by local medical centers or educational programs." In other words, people may move closer to some centres that study autism and therefore the local rates are, indeed, higher.

Also, since the children didn't just meet the CDC study criteria for autistic characteristics -- 80% of them had autistic diagnosis from community physicians -- it may be that there is truly a higher rate of autism. Granted, the children were not actually seen by CDC researchers, so it's possible that the methods of diagnosis varied among the sites. All of these variations make it difficult to really understand this data. Apples and oranges.

So, what are the implications of this new study?
The CDC researchers are aware that it's critical to identify the sources of variability in their data. For example, why were nearly twice as many children diagnosed with autism in Utah than in Colorado or Arizona? If the rates are really increasing, does it mean that many more children, particularly those from ethnic or racial minorities who are often missed, could have autism and we just don't know yet? If we do a better job of identifying children with autism, the rate will certainly continue to increase. How do we address this issue, which is not unique to autism?

Thomas Insel, director of the National Institute of Mental Health, commented that the most useful approach right now is to assume that there is an increase in autism and try to figure out why this is happening. He says, "Regardless of all the unanswered questions, we should keep in mind that autism is a common condition. More children need autism services than ever before. We need cost-effective ways to identify the disorder at early ages, provide adequate support and work with affected families to help their children transition to adulthood."

"For families concerned that their child might have autism, it's important to be persistent in seeking help. The study suggests that children with autism in some parts of the country are much more likely to be recognized than in other parts, so seek the best resources possible and do not give up until you are sure. It may be that your child does not have autism since the disorder overlaps with various other common conditions such as delayed language ability and attention deficit disorder. Far more children don't have autism than do."

So, lets sum this up:
That is apparently a relative increase of 23% from a previous analysis of data from the same network of clinics and doctors for 2006, when the estimated prevalence was one out of 111 children, and a 73% relative increase from 2002, according to a surveillance summary in Morbidity and Mortality Weekly Report.

Understanding this is tricky because of a lack of objective diagnostic markers and changes in clinical definitions over time, so it's unknown how much of the increase is real and how much is related to changing diagnostic criteria and better identification of cases. But here is the important point: If these children really meet the diagnostic criteria for autism spectrum disorder, new, previously missed, finally noticed doesn't matter as much as: Are we funding research properly? At a rate that is commiserate with the seriousness of this disorder? Have we wasted enough money, time, research effort on false theories like autism and vaccines already? Is it time to start a "war on autism" like the war on cancer? Time to devote a lot more money to both treatment and research into prevention? Those questions can be answered, and the answer is yes.