Sunday, March 11, 2012

Autism: What Did We Know and When Did We Know It?

Parents, teachers and various therapists often ask why we know so little about autism.  “Why” they ask, “after all of this money that has been spent, do we know hardly anything about autism’s cause or effective treatment?”  That’s a little like asking when you stopped beating your wife.  Problem is the premise is dead wrong.  We have learned an enormous amount that is literally making new lives possible for many thousands of children with autism.

Autism was first mentioned clinically by Leo Kanner in 1944.  The first behavioral study to teach children with autism was 7 years later in 1961.  In the 1970s and 80s only 1-2% of individuals with autism had good outcomes, most the rest spent their lives languishing in institutions or in sequestered “group homes,” which were custodial residences. 

In 1980s most people believed nothing could be done to improve the lives of children and older people with autism. They were referred to as “incurable.”  

The first major treatment follow-up study published by Ivar Lovaas in 1987 showed that half of the children with autism were be able to attend public school along side their typical peers instead of 1-2%, after 3 years 40 per hours of week of treatment.  That was just 43 years after Kanner’s first article.  Scientists concluded autism wasn’t caused by cold neglectful mothering as claimed by Bettleheim,  but by something that had gone awry during brain development.

The first advance in genetic technology making recombinant DNA research possible was published in 1972, and PCR, the technique permitting researchers to capture a tiny piece of DNA and make many copies so they could study in detail the error, was published in 1983.  The first study showing autism was more common in twins than unrelated people, the first strong evidence of heritability was published in 1977.

The World Health Organization first included autism in the ICD9 in 1975 and the American Psychiatric Association first included autism in DSM3 in 1980.

The first evidence of brain tissue differences in autism was in 1985. The first evidence that autism was linked to specific brain genes related to the brain chemical serotonin was published in 1997 and the first evidence that Chromosome 15 carried autism genes was published in 1996. One of the first studies using brain imagining demonstrated several specific structures that were dysfunctional in brain tissue of individuals with autism when looking at faces and judging emotions in 1999

The first widely accepted diagnostic test, the ADOS, was published in 1989 when it was discovered many more children had mild autism than was previously recognized.  The first evidence autism may be present as young as 18 months of age was published in 1992.

The first compelling use of a functional analysis method to evaluate behavior challenges in autism was published in 1994. Along with the Picture Exchange augmentative communication system. 

In 2001 an expert panel of the National Research Council reviewed all available evidence and concluded early intensive behavioral intervention was effective in producing sustained improvements of core autism systems with 25 hours per week of intervention over several years.

In 2005 Michael Rutter published a definitive article showing increased autism prevalence was due to better case identification and had nothing to do with immunization.

In 2008 a group at Harvard University headed by Christopher Walsh demonstrated within some types of autism the basic defect is failure to form brain connections due to specific gene errors, which can in part become overcome by intensive early experience which promotes new synapses.

Pivotal Response Training, an effective incidental teaching method for autism was described in 1993.  In 2006 and 2010 it was shown that other intensive behavioral interventions SCERTS and Denver Early Start can effectively improve core autism skills.
 The first evidence it was possible to teach children with autism to discriminate and express emotions was reported in 1996 and the first evidence that it was possible to teach empathy to children with autism was published in 2010.

Today throughout the US many hundreds of thousands of children are benefiting from various forms of early intensive behavioral intervention and about half are succeeding in regular education and the rest are making gains in special education settings.  Individuals with autism no longer live in institutions.

How do advances in autism research compare with other major health problems?

Cancer was described by Hippocrates in 400BC and various medical scientists over the centuries proposed treatments, none effective.  Toxic nitrogen mustard was used to treat cancer in the 1940s. Radiation was considered a “last hope” in the 1950s.  The first effective treatment was in 1989, mastectomy. 

Or consider heart disease.  Though various natural substances had been used during angina attacks for more than a century, it wasn’t until 1934 that the first cholesterol test was introduced.  In 1948 it was shown that plaque in blood vessels related to diet was shown to be related to heart disease.  In 1950 the role of LDL and HDL cholesterol became known.  In 1951 it was found that in low fat countries heart disease is rare.  In 1960 the blood test for insulin was introduced. The role of triglycerides found in 1971.  By 1984 millions of Americans are taking cholesterol lowering drugs.  By 1987 first statin drugs introduced.

In 30 years the field of autism research has gone from most individuals with more severe autism living in institutions or group homes, to half being mainstreamed in school.... truly remarkable gains. We now know most autism is genetically caused, there are several subtypes of autism, that specific types of brain dysfunction are the root causes of autism, and that for affected children many of their challenges can be overcome by intensive early behavioral treatment.  We also know there is no silver bullet, no magic pill, diet or other “biological treatment” that will “cure’ autism, such as hyperbaric oxygen or chelation.  But we know how to enable the majority of children with autism to live their lives at home and in their community alongside their brothers and sisters and peers.  Many graduate from high school and attend post high school education and job training .

While there is a great deal more to be done,  this is a story of remarkable progress.