Big Hand Dave

April is Autism Awareness Month! Across the United States and beyond, the autism community is celebrating its members, holding special events to raise awareness, and raising money for research. This month, I’ll be highlighting as many national and local events as I can — so please feel free to send me information about autism events in your area!

Autism Speaks was founded just a few years ago by Bob Wright, CEO of NBC and grandfather to an autistic child. Last year, it merged with the National Alliance for Autism Research (NAAR). With strong ties to Hollywood and the media, Autism Speaks is VERY busy this month.

Some of the highlights of the Autism Speaks agenda this month projects include a new Public Service Announcement to be launched nationally; special fundraising programs with Build-a-Bear and TJ Maxx, and, most importantly, NAAR’s annual walkathons across the country to raise money for autism research.
[credit: Lisa Jo Rudy from about.com]

Here are 10 questions that most people ask when talking about Autism.
[credit: webmd.com]

1. What causes autism?
   This is the biggie. Once we understand the causes of autism, some smart person can come up with a cure. In our current understanding, autism appears to be due to a complex interaction of nature and nurture, of genes that make a child susceptible to autism and something in the environment that allows those genes to be expressed.
2. Is there a cure for autism?
   So far, I am very sorry to say (irresponsible claims by some notwithstanding), the answer is NO. Our treatments are educational and habilitative, not curative. They are intended to train the brain to circumvent its aberrant wiring, which is not a cure. The good news for all of you parents out there with an autistic child is that a ton of research is being done in this area and the hope of a cure in your young child’s lifetime is both real and realistic.Perhaps, for example, one day we will be able to recognize how the brain is altered in the womb and give medications or hormones to normalize the architecture of the autistic brain as it is developing. Or perhaps a medication will be discovered that will generate nerve connections that overcome the current autistic circuitry after birth. Or perhaps some sort of intensive skills/educational training, done in just the right way at the right time, will have a major effect. I have no doubt a cure (or close to it) is in our future — the question is when.
3. What genes are associated with autism?
   It’s no surprise that genes are associated with autism. We know, for example, that if one identical twin is autistic, the other has a 70-90% chance of also being autistic. We know if one child has autism, there is an increased risk in his/her siblings (about 6%) of autism.The good news and the bad news is that genes are being discovered almost daily that are associated with autism. It’s good news because an understanding of the genetic basis of autism will allow for prenatal testing and a better understanding of how the autistic brain differs from the typical one and what we might do about it.The bad news is that there does not appear to be a single, simple genetic cause for autism. Instead, there seem to be many different genes and gene combinations that increase the risk of autism. Likely there are multiple pathways to autism (and perhaps multiple kinds of autism), based on different genetic differences. It would have been easier if there were the same genetic problem in all (as, for example, with sickle cell anemia). This makes the promise of gene therapy someday much more difficult.
4. Are there environmental triggers to autism?
   Here’s where there is currently so much heat and so little light. If you believe (as I do) that the prevalence of autism has increased significantly in the past decades, then the question is: why? It can’t be due to changes in our genes — that’s way too fast for our DNA to have been altered. Therefore, it must be due to something (or some things) in the environment that triggers autism in a susceptible child.But what? Of course, you are aware of the immunizations and thimerosal theories, but evidence points strongly against those being the culprits. An infection of some sort? Some sort of environment pollutant? Something in the diet? Allergies? The fact is we don’t know. I know that’s a bitter pill for parents who want definitive answers and cures. I do too, who doesn’t?But that strong need for answers has lead to a cottage industry of true believers, zealots who contend - despite a lack of credible medical evidence — that they know the cause. Why is that a problem? Aside from the fact that extraordinary theories require extraordinary proof, the misguided fear of immunizations, for example, has lead to some children tragically contracting infectious diseases (like measles) they could have and should have avoided.

   And I can’t tell you how many disappointed parents I know whose child didn’t respond to the latest cure (sometimes at great expense). Finally, holding on to one’s beliefs in the face of conflicting medical evidence prevents resources from being directed at other possible causes. As far as I’m concerned, every dollar spent on still trying to prove MMR vaccine causes autism (which it pretty clearly does not) is a dollar NOT spent on finding the true environmental trigger. (For more on this see the posts here and here.)

5. What is the prevalence of autism?
   In the 1980s the prevalence of autism was reported at about 1 in 2,000-3,000 children. In the 1990s it was about 1 in a 1,000. Currently the figure is about 1 in 150.
6. Is autism really on the rise?
   Some believe the apparent increase in autism is not real. They argue, quite reasonably, that we are now a lot more aware of autism and so diagnose it more readily and at an earlier age than we did before. Additionally, we never used to diagnose “high functioning” autistic children and now we do, which has added to their ranks.On the other hand, others (like me) believe there has been a true rise, that we never missed it all that much in the past, and that even including higher functioning children can’t explain the 15 fold increase in prevalence. Perhaps someone will come up with a definitive answer to this controversy soon. Stay tuned.
7. What is the best educational program for an autistic child?
   This is another area where there is disappointingly little research upon which to base an opinion. In my town of Boston, for example, an autistic child might receive “ABA therapy” or “floor time” or “cognitive therapy” or “exercise” therapy, depending on the program s/he attends and its philosophical bent. But, do they work?Other unanswered questions include: How young do we need to start services? What is the optimal intensity of treatment? No one really knows. We desperately need more research on the effectiveness of autism treatments.Without knowing for certain, here’s my take. Autism is clearly a significant disorder of the brain. For any treatment to work, it will need to be incredibly intensive (some estimate 25 hours/week) and started as early as feasible. And, perhaps, talented teachers who can tailor their interventions to the specific needs and learning style of the child trump the exact kind of intervention they might use anyway.
8. Where does being a “quirky child” end and the “autism spectrum” begin?
   When a child is very autistic, all professional agree about the diagnosis. However, what about the child who is “high functioning,” i.e., quite verbal and smart, makes reasonable eye contact, etc? Then, even experienced professionals disagree about whether that child should be assigned to the “autism spectrum” or not.It tends to come down to this question: Are you a “lumper” or a “splitter”? That is, if a child has some quirky traits but not enough to seem fully autistic, is it better for them (in the short and long runs) to carry a label of autism or is it preferable to be called a “quirky kid” whose essence is not really captured by any label? Personally, I tend to be a “splitter,” but without a formal diagnosis of “autism” most children can’t access the degree of special education services that a child with “autism” receives.
9. How can parents best help their autistic child?
   To me, that’s an easy one: be his/her parent. Some parents chose to devote their lives to the education and habilitation of their autistic children. Others seek to find the best services and advocate for the child. However, you play it; the one essential parenting role that is inevitably underestimated is that of being a loving parent. You can find teachers and PTs and classes and doctors to help your child. But no one else can serve as your child’s loving parent, providing a strong emotional bond and link to the real world. And that is the true gold.
10. What is the best way to make an early diagnosis?
    How early can autism be recognized? There is ongoing research to see if we can do better in detecting autism at an early age, with the hope that early detection –> earlier treatment –> better long term outcomes.Studies of the young siblings of autistic children (at ages 6, 12, 24 and 36 months) may provide clues in children as early as 12 months (e.g., not responding to their names being called, fewer communicative gestures like pointing, quicker head growth). This will continue to be major research effort in the next year and should serve to allow us to better recognize autistic kids at an earlier stage of their development.