Wendy Chung: Autism, what we know (and what we don’t know yet)

In a 15-minute easy-flowing and succinct presentation (embedded in this article)  to a group of autism and medical professionals in Vancouver, British Columbia (filmed on TED Speaks), Ms. Chung takes us through the why, what, how … and the “what’s next” stages of Autism research and solution. It is honest, well-spoken, evenly-paced, and humbling.

She talks about hearing the same question from parents repeatedly — why? “Why does my child have autism?”

Autism she explains is not just one thing; it is a spectrum of disorders. And because of Autism Spectrum Disorder this, pinpointing the cause and effects of Autism has been a great challenge. Two child diagnosed with autism can have different reactions to the disorder.

She notes that while Justin, who is non-verbal, can’t speak, uses photos to communicate, and who when frustrated begins rocking and can bang his head until it bleeds, is quite different than Gabriel, who is quite gifted with mathematics (he can multiply a 3-digit number by 3-digit number with ease), but he can’t converse easily; when nervous he shuts down. Yet as different as they are, each shares the same condition, Autism Spectrum Disorder.

A graph presented illustrates that one in eight-eight children has autism. The graph also shows a tremendous spike in numbers between 1995 — 2002.

But is that because there are more people contacting it? Ms. Chung points out that in the late ’80s and early ’90s there was legislation passed that made more resources available — to educators, parents’ medical professionals and others — that has made awareness and recognition more prevalent. And this, she says — in addition to the disorder definition being widened — accounts for those numbers; that we don’t have an Autism epidemic.

But what causes Autism Spectrum Disorder? There is a wide misconception that Vaccines do not cause autism vaccines contribute to the cause. She very emphatically dismissed this: “vaccines DO NOT CAUSE AUTISM!” She points out that this has been proven to be fraudulent. The research paper that the initial claim was based on has since been proven to be fraudulent. In fact, the paper was retracted from the journal it was published in, and the author of the research paper has his medical license taken away. The Center for Disease Control and Institute of Medicine — after repeated investigations — has found no credible evidence to support to claim that vaccines caused autism. There was also a thought that Thimerosal caused Autism. However, this was discontinued and following that discontinuation there was no impact.

Conditions that have been identified to contribute to autism that are known to contribute to autism is the aging of the father at the time of conception, as well the use of Valproic Acid (for epilepsy) by expecting mothers.

Genes have been identified as a contributing factor. But what genes, or combination thereof? Science still doesn’t understand the 4 to 1 ratio of autism in males vs. females, for example. So they looked at the Concordance rate, meaning that if one child has it, how does it affect their siblings. How does family history contribute, if at all?

Siblings seem to share the disorder. In Identical Twins — where they share 100% of genetic information and shared the same intro-uterine environment –, autism appears 77% of time. In Paternal Twins — where they share 50% of genetic information and the same intro-uterine environment — it appeared 31% of the time, and in siblings — where they share 50% of genetic information but Not same intro-uterine environment — it appeared 22% of the time.

it is interesting though that in identical Twins the concordance rate is not 100%. So genes, while certainly a factor, are not the sole indicator; but the findings show that it does play a larger role than other disorders and diseases, such as cancer.

But the experts still don’t know what genes or combination of genes is the cause.

To confuse things further, while it could be genetic, the finding so far does not suggest that it is hereditary.

In a study of 2400 families with no autism present in their family history, they were able to identify the genetic changes in 24% of those with autism; leaving 77% of those affected still a mystery.

As an analogy, they equated genetics as a volume of 46 books, which Ms. Chung admitted  was a bit old school in today’s world of Wikipedia. In some cases they found that in one autistic child a volume was missing; in others a paragraph of a page, and yet others a single letter within a word.

However, she notes, there is a pattern slowly emerging, a pathway of sense that they’re identifying and putting together.

They have found methods to use bio-markers to discover infants at risk.
So they can now get to them earlier to intervene. But how? remains a question.

How will they augment help to the areas of the brain where help is needed during a child formative years? This will be addressed in different ways for different infants — in accordance with that child’s brain synapse and the way that brains learns. It is expected that for medications will be effective, while for others education strategies are the answer to address and adapt to individuals brain function. Google Glass was even mentioned as a potential aid in social skills.

She stresses that the solution to deal with Autism is going to come from a collective effort, from the young to the old, across the spectrum. And not just in discovery and research, but also implementation.

For those interested in the on-going research of Autism Spectrum Disorder, there is now a community [working towards a solution] called The Interactive Autism Network located at IANCOMMUNITY.org

Watch Wendy Chung speak about Autism Spectrum Disorder on TED Below

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