Gather and Confer Part 2

By Day Two of the Autism New Jersey conference, I had a better idea of where I was going, and I have to say, the organizers did a really fantastic job. The talks began and ended on time, the speakers were crisp and well prepared, and the conference center itself was a pleasant place to spend the day.

I didn’t have the beans left to visit the booths again, but I did talk a little with some of the speakers. Drs. Melissa Gonzalez and Peter Girolami of the Kennedy Krieger Institute in Baltimore gave a very down to earth and encouraging talk called “Pediatric Feeding Disorders: Food Selectivity in ASD.” Since feeding A has been such a journey, I was interested in finding out whether there is more we can be doing, or bad habits we can try to unlearn. A nicer pair of feeding specialists would be hard to encounter. They combined research and experience with a great understanding of how families truly function in daily life, and were so generous with their time when I had way too many questions afterward. I hadn’t realized how much baggage I had been carrying about A’s health, how much the well meaning but wound-inflicting comments of other people had left their mark, but attending this talk greatly helped me untangle some of that mess, and also showed me where we have been slacking. Onward with our food adventures!

Next up was a presentation by Dr Walter Zahorodny of the Rutgers-New Jersey Medical School called “Autism Prevalence: New Jersey and US Trends 2000-2012.” We can all admit to a great curiosity about whether it is anecdotal or really true that autism diagnoses are on the rise, and what the numbers really look like. That’s why the room was so packed, heh.

It wasn’t very heartening to know that the statistics do show a marked increase in autism. Dr Zahorodny explained the scope and parameters of his study very well, and had so much to present that we were racing to keep up. Despite the fact that, compared to other states, New Jersey does a more comprehensive job of gathering data–mining both education as well as health records, and making the reporting of cases mandatory–and despite the fact that meeting the diagnostic criteria of his study is so difficult, the actual numbers still show an upswing. His 2012 findings show that 1 in 41 children now meet the criteria, as opposed to earlier numbers of 1 in 99. The study confirmed some of the factoids that are often thrown around by laypeople–more boys are diagnosed than girls; and the children diagnosed tend to have a reasonably high IQ. And it also debunked some of the assumptions that we commonly hold as true–for example, people often think that rates of autism are artificially increased because so many people move to New Jersey for the excellent services. However, findings showed that 85% of the children in the study were born in-state. If you want to see some of these numbers for yourself, do poke around on the Autism New Jersey website. Dr Z mentioned that he would put his presentation up on their site.

In the same session, Dr Sandra Howell explained the New Jersey Department of Health’s Autism Registry. Basically, all healthcare professionals in the state are required to report cases of autism to the state. I am not much of a conspiracy theorist, but their unapologetic stance about mandatory reporting with no familial consent required was rather discomfiting. On the one hand, yay for consistent data followed up by offering needed services, but on the other, not so nice to know how much information about us and our kids is mined freely. We do have the choice to opt out of providing personal information, but otherwise, they seem pretty fine with using the term “surveillance.” I want to be on the side of science, I really really do, so I won’t say more than EEEEK.

Interestingly, there was more debunking of commonly held assumptions. Genetic factors are not as significant as people think, for instance. The factors that seem to be significant are–multiple births; low birth weight; being preterm; and the maternal age being over 35. Honestly, A and I didn’t meet any of those criteria, and I’m sure many of you didn’t either, but what can you do. Autism is still not well understood, and sometimes we don’t get any answers, but you never know what might emerge from all the mining of data.

South Asians might be glad to know that we have the highest rate of reporting symptoms early. I always knew our keen observational skills aka general nosiness would catapult us to fame! 😉

I very much enjoyed the third talk of the day that I attended, which was “Independent Evaluations: What are they and when do you need them?” that was given by Glenn Sloman, Rory Panter, and Elena Zaklis of Behavior Therapy Associates. This is a group with a good reputation and we have worked a little with them, so I was not surprised that their presentation was so polished and informative. Whether for the sake of providing an informed look at IEP goals, to work on a behavioral plan, to assess social skills, to evaluate a child psychologically, or to determine eligibility for disability, an independent evaluation can be the logical solution for those moments when you just hit a roadblock in figuring out the next step for a child who is struggling, or for when you don’t know if you are signing off on a proper plan for your kid’s education.

The speakers were very thorough in describing the different types of evaluations, and gave very targeted answers to what were also impressive audience questions. I’m glad to say, I learned a lot from my fellow attendees too. Their different areas of expertise sharpened the depth and breadth of the discussions, and gave me insight into what issues are faced by educators and other professionals who work with our kids.

And finally, also from the Kennedy Krieger Institute, Dr Eric Levey presented on “Gastrointestinal and Nutritional Issues in Children with ASD.” Looking over my notes, he really was very clear and thorough, but in the end, I felt like he was basically saying, “There is no real cause we can find that links gut problems to autism, and inept parents don’t know how to tackle the behavior issues that lead to feeding disorders.” While that made me feel all prickly, I also took comfort from the fact that if institutes have been built to study this stuff, and grants are available for this research, and so much effort and expense are put into this field of study and application, then IT REALLY ISN’T THAT EASY TO DO WHAT WE DO. Phew. That felt good to get out. That said, I found his talk to be enlightening, and of the debunking-of-assumptions order of things.

Lots of people do tend to think that there is a “leaky gut syndrome” that causes autism symptoms. Dr Levey said that the greatest barrier to recognizing and characterizing the symptoms is the communication difficulties presented by autism, but in general, they have identified reflux, vomiting, bloating, gas, diarrhea, constipation, and abdominal pain. It is our greatest dread as parents of a child with a history of GI issues and nonverbal autism that he might be living with pain that he cannot talk about. Dr Levey listed so many possible causes of GI trouble, but some of the causes that apply to autism are food selectivity; exaggerated sensory response; and behavioral factors such as a hyper response to taste and texture.

He delved a little into the idea that autistic kids’ GI tracts may have an increased permeability to inflammation, thus altering the gut bacteria, a theory we hear so much about, with so many suggestions for elimination diets in the world of the Internet. But there are some specific indicators that lead to them implementing an evaluation, and the empiric treatment depends on the symptoms they are able to glean, with diagnostic tools such as endoscopy being used if needed.

There followed a very gross and enlightening ode to why some kids have both diarrhea and constipation at the same time. Poor kids. In the words of Dr Levey, the bowels leak around a big block of stool. OH MY.

There is little evidence of the gut link to autism, is the long story made short. There is also no proof that elimination diets achieve anything, unless very stringent criteria are used. If autistic kids have any nutrient deficiencies, it is usually due to food selectivity, and consumption of comfort foods that may be junky, rather than innate lack. And vitamin cocktails will not decrease autism symptoms.

In treating feeding disorders such as selectivity, delayed feeding skills, dysphagia and pica, behavioral strategies tend to be more effective than anything else. I can get behind that. But I do want to say that I disagree that parental helicoptering or anxiety is the catch-all issue here. In my experience, the issue is that we actually need to learn from scratch how to power past the obsessive behaviors that our kids display because they are afraid to eat. If we fed G successfully, it’s not like we lost all our skills with A. But he brought such a hypervigilance and terror to the act of eating that instinct and patience were not enough weaponry to bring to the battlefield, and I’m very grateful for the judgment-free help we received in this arena of parenting.

At this point, the conference was officially over. I said goodbye to my new friends, then took myself off to the spa downstairs for a wonderful foot treatment. I was a little tired of the smoky casino, loud music, and dog friendly interior of the hotel, but I am very glad to have had the opportunity to listen to such well informed speakers. There are so many facets to developing an understanding of autism, and it was good to put my own life on hold for a couple of days so that I could take in some new insights. There is no way I could have attended such a plethora of talks, but I did pick the ones that had relevance to us, and feel good about what I learned. A big thank you to Autism New Jersey, to A’s school principal who said we should go, and to all the speakers. And a shout out to all the autism professionals and fellow parents I met there. As Amy Smith, the Information Director of Autism New Jersey said in her IEP talk (when she quoted Mary Beth Walsh of Mom2Mom), “Parents should practice the virtue of gratitude because the professionals working with their children chose to do this work. Professionals should practice the virtue of compassion because parents did not choose this path.”

I want to add a third element: we should all practice the virtue of respect for these children, who trust us because they have to.

Radha.