Improved diagnosis or real change?

Real change

Testimony to the House Government Reform Committee by Bernard Rimland, Ph.D

Some supposed experts will tell you that the increase reflects only greater awareness.  That is nonsense.  Any pediatrician, teacher or school official with 20 or more years experience will confirm what the studies tell us:  there is a real increase in autism and the numbers are huge and growing.  The epidemic is serious and world-wide.

Autism figures soar in America

Figures have risen steeply since the reporting of autism became mandatory in American schools in 1991. At first the increase was attributed to better reporting of the condition but after nine years some experts argue that the consistent rise must demonstrate an actual rise in autism rates.  

Autism:  Present Challenges, Future Needs - Why the Increased Rates? - Congressional Hearings

When asked about the increased rates in autism, many will immediately discount that there even is an increase.  Even though the latest statistics from the Department of Education show increased rates in every state. Others will say the increase is due to better diagnostic skills.  Others will say it is because the diagnostic category was expanded.

California has reported a 273% increase in children with autism since 1988.  As for this increase, twenty-one percent of all autistic children in California live in the 29th district.

Florida has reported a 571% increase in autism.  Maryland has reported a 513% increase between 1993 and 1998.  You can't attribute all of that to better diagnostic skills.

In 1999, there are 2,462 children ages 3 to 21 in Indiana diagnosed with autism.  That is one-fourth of one percent of all the school children in Indiana or 1 in 400.  Twenty-three percent of these children live in the 6th district.  This increase is not just better counting.

Secrets and lies: Is the astonishing rise in autism a medical mystery or a pharmaceutical shame?

When I read statistics from the Department of Education that said autism in school-age children had increased 556 percent in five years, skyrocketing past any other disability, I was shocked and horrified. But I trusted what my doctors told me: that the increase was due to better diagnostic skills, not to any real increase in autism.

It took two years for that trust to erode, chipped away by increasing evidence that business motives had mandated my child's health.

Any changes in prevalence of autism must be determined

Rigorous methods are especially important because of a controversial current hypothesis.² Fombonne has argued that despite reported increases in the prevalence of autism in many countries, the true incidence has remained constant. The impression of an increase, he argues, arises only because of increased rates of detection.

There is no hard evidence to support this hypothesis. The only studies that have explored the question have failed to find a "hidden horde" of autistic children. Burd et al conducted a prevalence study of autism in North Dakota.³ They found a prevalence of 3.26 per 10 000 among a cohort of children born between 1967 and 1983. A 12 year follow up survey of the same cohort showed that the original prevalence study had found 98% of the autistic children in the area; only one child had been overlooked.⁴

Nylander and Gillberg screened adult psychiatric outpatients for evidence of undiagnosed autistic spectrum disorders.⁵ This population had not been screened for autism previously. The authors hypothesised that they would find high rates of undiagnosed autism. The screening procedure located 19 adults with autistic spectrum disorders who had not received a prior diagnosis. However, the prevalence in this group was only 2.7 per 10 000, a finding that provides little support for a hidden horde hypothesis. The authors note this point reluctantly, claiming that the observed prevalences "should be regarded as an absolute minimum."

Many scientists and health professionals are uncomfortable about the data regarding recent increases in rates of autism. A few have developed extravagant theories as an expression of their discomfort. Nevertheless, the simplest interpretation of the record supports the conclusion that the incidence of autism has increased.

To avoid the consequences of complacency the burden of proof should lie with those who seek to dismiss decades of epidemiological research as flawed. Yet we are now offered focus groups as a new research tool. I am surprised that the BMJ would dignify such efforts. Good science demands that we face the real data, no matter how inconvenient the implications may be.

What I have learned: Four and a half decades as a parent and researcher

During the past few years the Autism Research Institute has been flooded with an upsurge of pleas for help from parents throughout the world, from wherever the World Health Organization Vaccine Guidelines are followed.

Despite the very obvious and extremely severe epidemic of autism, mainstream medicine continues to insist that there really is no epidemic at all, that it’s merely an illusion that we parents have succumbed to because of greater awareness of autism, and if there were an epidemic, it couldn’t possibly be caused by the vaccines, despite the fact that many contain grossly excessive amounts of mercury, one of the most poisonous substances on earth.

Mainstream medicine’s totally inappropriate response to the epidemic of autism we are now experiencing is typical of mainstream medicine’s response to the problem of autism, and is very characteristic of what has been going on for the nearly five decades I have been involved with autism.

California Autism Update from Rick Rollens

With no changes in the diagnostic criteria for many years, and in a system that has been ascertaining autism since 1970, the California Department of Developmental Services (DDS) recently released the following data on the number of new cases of fully diagnosed DSM IV (Level One) AUTISM (NOT including other autism spectrum disorder such as PDD, NOS, or Asperger's, or other rare "autism like" genetic diseases):

1. An all time one year (1970-2001) record number of cases (2,725) were added to California's system in 2001. This number represents a 20% increase in one year over the previous record year of 2000. The just completed 4th Quarter of 2001 (Oct. 4, 2001 to Jan. 3, 2002) also set an all time record for numbers of new cases for any 4th Quarter in the history of the system. During 2001, each of the four quarters posted all time record setting increases. THERE WERE MORE CASES OF LEVEL ONE AUTISM ADDED IN 2001 THEN IN ALL OF 1994, 1995, AND 1996 COMBINED.

2. In 2001, for the first time ever in California's history, level one autism became the number one disability entering California's system...accounting for an astonishing 35% of all new intakes in 2001. A percentage that has exploded from historic levels of 3%. AUTISM HAS SURPASSED MENTAL RETARDATION, CEREBRAL PALSY, EPILEPSY, AND ALL OTHER CONDITIONS SIMILAR TO MENTAL RETARDATION AS THE NUMBER ONE DISABILITY ENTERING CALIFORNIA'S DEVELOPMENTAL SERVICES SYSTEM. 

3. California now has 16, 802 persons with level one autism in it's system. IT TOOK 25 YEARS (1970-1995) TO ADD 6,527 CASES. UNBELIEVABLY, IT HAS TAKEN ONLY 3 YEARS (1999-2001) TO ADD AN ADDITIONAL 6,596 NEW CASES. SIMPLY PUT, WHAT USE TO TAKE 25 YEARS NOW TAKES THREE. 

4. According to DDS, of the 16,802 persons with level one autism in it's system: 82% are male, 56% have NO mental retardation, and 80% were born after 1980...  the beginning of the autism epidemic. AMAZINGLY, OF THE TOTAL NUMBER OF PERSONS IN THE SYSTEM (16,802).... 11,104 OR TWO OUT OF EVERY THREE PERSONS (66%) ARE CHILDREN BETWEEN THE AGE 0 TO 13 YEARS OLD. 

Autism figures in Press Release from Ray Gallup, President, Autism Autoimmunity Project

There is a myth out in the public that autism is not increasing but it is due to better diagnosis. Parents and Educators know otherwise and can cite their own schools as examples. In our son's school in New Jersey, there were 20 children with autism attending the school in 1992. Today, in 2002, there are over 100 children and 80% of them are younger than our son.

Another Independent Scientist Falls Victim over Findings Against MMR Vaccine

Can the dramatic increase in autism be attributed to a change in diagnostic practice, Wakefield asked? Data from California Office of Developmental Services show a dramatic parallel to data from north-east London. Identical temporal trends are shown, with the rise in autism from a steady baseline value, coinciding with the introduction of MMR vaccine in both countries.

"In 1998 the expected numbers of newly diagnosed autistic children in California should have been 105-263 cases,.....the actual figure was 1685 new cases. The temporal trend in north-west London is almost identical, although the rise is delayed by about 10 years. The two countries use the same diagnostic criteria. The sequential trends are consistent with the timing of introdution of MMR to both regions."

Improved diagnosis

With rates rising, researchers race to find the cause of autism and better treatment

Autism activists have a word for what's happening: epidemic.

But is it? Like almost everything else about autism, indisputable facts about the disease are scarce. At least some of the increase is likely due to improved techniques for diagnosing the disease and a greater social willingness to do so.

Autism May Be More Common Than Once Thought: Study  

While there have been conflicting reports on whether autism rates are on the rise, a new UK study indicates that pervasive developmental disorders (PDDs) like autism and Asperger syndrome are more common than previously believed.

“PDD is not as rare as once thought. Thirty years ago, we had a narrow view of autism, and we estimated the rate to be four or five children out of every 10,000 children,” lead researcher Dr. Eric Frombonne of King’s College in London told Reuters Health.

Another Independent Scientist Falls Victim over Findings Against MMR Vaccine

But this too, was construed as evidence against MMR being linked to autism, because in the same period, the vaccination rate was said to be constant at 95%. This paper was criticised, rightly, to be too simplistic. The vaccination rate was almost certainly not constant, as in the early years of introduction, the coverage could fall well short of 95%. Furthermore, there was delayed diagnosis in 40% of the early cases, and increasing awareness of the condition among pediatricians in later years. Another factor that may have contributed to further increases in autism cases was a trend towards earlier vaccinations that could have given rise to more cases [11].

Any changes in prevalence of autism must be determined

Rigorous methods are especially important because of a controversial current hypothesis.² Fombonne has argued that despite reported increases in the prevalence of autism in many countries, the true incidence has remained constant. The impression of an increase, he argues, arises only because of increased rates of detection. (Note: This author is merely reporting what Fombonne has said.  In the letter above, he disputes Fombonne's point.)