Note: Yesterday was an IACC meeting. If you listened or participated, please give us your thoughts in the comments. Below is a post from Katie Wright on the previous meeting held on July 8. We'll have a summary of yesterday's meeting soon. Thanks.
By Katie Wright
For so long, parents like myself have been frustrated by numerous and endless IACC meetings dedicated to the discussion of common genetic variants, Fragile X, de novo variants, the genome, early intervention….but today, finally, regression, a huge issue affecting 40% of those with autism, was center stage. Thank you to Susan Daniels and her team for arranging the terrific IACC meeting addressing autistic regression.
In 2014 autistic regression should be discussed as matter of fact and with urgency. This issue affects 40% of those with ASD! Yet still, sadly, autistic regression is often approached with timidity and fear. When Dr. Audrey Thrum started to speak about regression she immediately couched what she was about to say (which was extremely tame!) by describing regression as a “loaded topic.” What? Is apraxia a “loaded topic? Are sleep disorders a “loaded topic?” Is echolalia is “loaded topic?” No Dr. Thurm these are REAL issues, not “loaded” topics. For goodness sake Dr. Thrum, of you are going to research autistic regression stop being scared of what others think and represent these children.
And yes, yes, yes, Kanner, described regression 50 yrs ago…we get it, we get it… But these researchers never add that the Kanner children who regressed had parents working with dangerous, potentially neurotoxic chemicals. Important detail always omitted. But please, take it from a Mom of a regressive child who has obsessively researched regression (I am also talking to you John Elder Robison) for 11 years there has been a miniscule amount of solid research on this subject.
Since 2004 I have read hundreds book on autism that. I was up at night; for years- Christian was awake anyways so I read books on autism. I could barely find a child whose autism resembled that is my son’s in these volumes. Either the books doubted regression was real or if it indeed happened it was not serious, or regression did not actually occur but parents “missed the signs and “were looking for something to blame.” One of the reasons my parents started Autism Speaks was that, despite visiting some of the best hospitals and pediatric neurologists in the country, no doctor at Cleveland Clinic, Mass General, Kennedy Krieger, Columbia Presbyterian Hospitals had any idea why my son had a catastrophic regression. Few of the doctors we meet with even seemed familiar with severe autistic regression and none knew what to do about it.
So back to Dr. Thurm. Thurm prefaced her talk by stating she has a nephew with autism and cares about this topic. Ok, but how on earth could she be so apprehensive about talking about regression and not be more curious about why it is even happening?
Interestingly (and not surprising to most of you reading this) Thrum found most regressions happen at 12 months and 18 months. Hmmmm…..what happens to every American infant at 12 months and 18 months? Oh what oh what could it be?
Next we heard from Dr, Rebecca Landa from Kennedy Krieger. Dr. Landa expressed surprise that she had found that regression was both widespread and vastly heterogeneous in nature.
I get so frustrated when researchers say to me, “well Katie, we are working hard, but science is slow.” No people are slow. Science can be fast if one has the political will to get the right work done.
In 2004 Dr. Landa came to my house after my son had a severe regression. It was a disaster. Read here.
I was pleased, however, to hear Dr. Landa state that 6-month evaluations for autism are unreliable. Lately there has been all kind of silly talk about the soon to come magical ability to diagnose all kids for autism by 6 months. Then we can do ABA on 6 month olds and cure them of autism. This is such a naïve and harebrained idea.
Finally Landa cites new research that by age 3 there has been a massive loss of fine motor skills among the regressive ASD population. Yes, my son went from being the king of the playground, up and down ladders, slides, chasing other toddlers to being unable to climb steps or use slides and swings in any way. Instead of using playground equipment he just wanted to walk in circles.
Too may of these professional early intervention researchers fail to realize that half of ASD kids who later develop autism are Not autistic at 6 months of age. It is like diagnosing someone with a broken leg 6 months before the person actually breaks his leg. All this misguided and expensive early detection work in infants misses half the ASD population. Researchers need to focus on the reality of autism, not the neat and tidy “it is all prenatal,” or detectable in infancy world they want it to be.
Guess what else Dr. Landa found? There is a huge spike for regressions at 18 months. Hmmmm….there it is again. Remind me what happens at 18 month? Is there something, a medical procedure perhaps, that happens with all American 18 months olds?
Finally we heard from Dr. Cathy Lord. Dr. Lord, too seem shocked at how common she found regression to be among kids with ASD.
I went to below average suburban public school that literally shut down the day my class graduated. Most of the teachers were on the verge of retirement. To say that the classes were not stimulating would be kind. To be fair, I put in minimal effort studies and instead became adept at appearing as if I were listening to lectures while mentally checked out, thinking about “important” teenage like who could give me a ride home so I would not have to take the bus.
My fake listening skills became well honed. I thought I was pretty good at it but I can see I am just amateur compared to the real masters of “checked out listening,” in the autism research community!
How many decades have parents been talking about their kids regressing into autism? We get a lot of nods and “I sees,” from doctors but years later there is shock and surprise that so much regression is actually occurring. Listen, my career in fake listening ended when I went to college. People working on urgent children’s health issues need to fully pay attention to their patients. I am speaking to the whole of the mainstream autism research community as well as IACC members. Why not show a real commitment to the issue of regressive autism by designating some meaningful research dollars to this subject. Display a sense of concern, urgency towards preventing and treating regressive autism.
You know that excitement most researchers display about Fragile X studies – try applying that to regressive autism! Come join us in reality – in the here and now! Rather than obsessing about rare chromosomal variants of autism, which rarely relate to more typical; autism, why not try studying a common version of autism, like regressive ASD, right now!
Dr. Cathy Lord re-iterated how awful regressive autism is but continually undercut her point by stating how rare severe regression is. If only! Dr. Lord showed a video of a toddler who regressed into autism. It was good footage but sister, I have film, as well do about 25% of my peers, which make that regression look small time. Just as these researchers were wrong for so long that regression was happening, they are wrong to minimize the prevalence of serious regressions in the ASD community.
OK, so in summary: Dr. Thurm, Dr. Landa and Dr. Lord all found autistic regression most prevalent around the 18 to 24-month period. Interesting timing, right?
Katie Wright is a Contributing Editor to Age of Autism.