A personal look at autism, its effects, prevention, treatments and public policies.
The first time I heard the word “autism” was while watching the movie “Rain Man.” I was only seventeen, so the tragedy of autism didn’t really sink in. Yes, I saw how Dustin Hoffman’s hero was shackled from within, unable to cope with the outside world, but his savant qualities stole the limelight. Counting spilled matches in a restaurant or cards in Vegas, remembering all kind of obscure statistics – that was a fascinating demonstration of the limitless grandeur of the human mind, even if it was limited in many other ways.
Autism wasn’t the only thing my self-consumed, sex-crazed seventeen-year-old self couldn’t understand at the time. Some things can not be explained by movies – you must live them to understand. Maybe some day, mankind will discover how to teach life’s painful lessons by giving a quick and relatively painless shot, but until then we are stuck learning through the School of Hard Knocks. The harder things get, the more we change, and if we don’t break – usually to the better. Maybe the job of our guardian angels is not to keep us out of trouble? Maybe, like good fitness trainers, they make sure that we learn all we can during our short span on this Earth without getting broken? It was this belief that kept me afloat, when twenty years after watching “Rain Man,” I discovered that my son had autism. It came very close to breaking me – I suppose my guardian angel used to be a particularly tough football coach…
Most autistic children share the same tale. At a certain age (usually 2 or 3 years old) normal development suddenly stops, often followed by regression. Symptoms include serious language delays, no eye contact, shrieking, strange behavior (like walking in circles or rocking), and so on. This often happens right after the MMR vaccine, which is why many parents blame the vaccination. Parents usually go through the denial phase (“he is just a little bit behind”), followed by a desperate search for a cure, from physicians and developmental therapists down to quacks and healing patches. There’s lot of explicit and implicit blame (“it is in your genes” or “it is because you took that medication”). Then come years of tears, the draining of family finances and the constant terrifying, nightmarish thought that your child may be non-verbal and peeing his pants at the age of 17. Normal children learn by emulating, mimicking others, but the autistic child won’t even attempt to hold a spoon or repeat any sounds without hours of therapy. If there is one thing worse than death, it is having existed without quite having lived. And that’s just what severe autism does to a child.
Some form of autism affects 1 child out of 88, a hundredfold (!) increase from two generations ago. Yes, there are many “different autisms,” and this number includes both the severe, nonfunctional patients (who cannot even talk), as well as the highly functioning patients. You may have an interesting conversation with someone labeled as “autistic” and then wonder “why is everyone so scared?” The scary thing is that the number of severe cases with nonverbal, nonfunctional kids has also gone up many times (more than tenfold). We are not at the top of the pandemic, we are only at its beginning; the cases we have today, both severe and borderline, are just the people who seem to be more vulnerable than others to some environmental factor (or factors). Back in the old days, miners used to take caged canaries to the mines because birds are more sensitive to poisonous gases (like carbon monoxide and methane). If the birds started dropping dead, miners knew they should run for dear life. Many people believe that people with autism are “the canaries in the coal mine,” showing that there is something deeply wrong in the environment. And unless we find out what it is, in a couple of decades we may very well be looking at tens of millions of disabled children who will live into their 80s. Not only will they be missing out on their own lives and wrecking the lives of those around them, but they will also cost society hundreds of billions of dollars and break the system of social care, which is already busting at the seams. Does this sounds scarier than climate change, West Nile virus and Jerry Sandusky combined? Well, I hope it does, because it is!
So, what can be done about autism, considering that we don’t know all the causes behind this affliction? Quite a lot, actually, including prevention, treatment and research. Some of these things can be done on the individual level, some at the state level, and some we can do only as a country.
An ounce of prevention is worth a pound of cure, and parents can do a lot to reduce the risk of autism in their children. Anecdotal evidence shows that autism happens when genetic vulnerability (usually related to the immune system) is triggered by one or more environmental factors. If one or both of the spouses have allergies, psoriasis, asthma or other immune issues and if the child is a boy (risk for girls is several times lower), they are in the risk group. I hope that sounds scary, because it usually takes fear to make the necessary lifestyle changes that eliminate these “environmental factors” out of a child’s life.
First comes eliminating factors related to the immune system. Try not to get sick during pregnancy; antibiotics may increase the risk. That may be achieved with surprising ease by washing hands obsessively, every 30 minutes (the most effective prevention method!). Also wear a mask at work if there are people sneezing around you. It’s better for them to laugh than for you to cry. Your child should be breastfed until he is at least 6 months of age or even longer. Breastfeeding has been shown to help build a strong immune system. Also, do only those immunization shots that you must, and do them as late as possible. Many doctors will probably crucify me for saying this, but immunization shots remain on the list of possible contributing factors to autism. Despite the discredited Wakefield’s study, which tried to link the MMR vaccine to autism, there are other studies that show that the volume of immunization shots (not just MMR) and their timing may still be a contributing factor. You will definitely want tetanus and diphtheria shots, but maybe at 8 months instead of 2 months when the child’s immune system is a bit stronger and he is more likely to need protection from the pathogens. The Hepatitis-B shot needs to be done in the hospital only if you carry the virus, otherwise you may put it off till later, (perhaps even years later). At any rate, until the CDC does the definitive study on vaccines and autism, it is up to you to balance the risk from not receiving some immunization shots with the risk from receiving them.
Second – environmental factors. Kids put toys into their mouth, and these toys may contain chemicals. The only thing my son ever chewed was a Fisher Price toy with lead in its paint. He ended up with elevated levels of lead in his system – clearly one of the contributing factors to autism. Don’t buy cheap toys. Buy expensive toys manufactured in places where people are much more conscious of what goes into their products (like Japan, Europe and the U.S.). It is better not to buy a toy rather than buy something that will make your child sick. In fact, that goes for everything you buy, from pens and pencils to food! Talking about food – try to eat organic meat and milk during pregnancy and breastfeeding. Hormones and antibiotics that are fed to cows and chickens end up in you and in your child. It will definitely not make your child healthier and may be the contributing factor in overwhelming your child’s body. Check yourself for heavy metals – if your levels are elevated, probably your child’s are too. Also, your grandma’s advice about eating vegetables and cutting down on snacks and sweets may be more important than we think. High-fructose corn syrup has been shown to reduce the body’s ability to expel heavy metals from the body and to be a factor in inflammatory processes in the body – both long-known factors for autism.
To add to the list of environmental factors, there have been some studies linking autism and industrial pollution (like mercury from coal-firing power plants). Maybe those crazy environmentalists are onto something? According to some studies, the yearly cost of autism in the U.S. is around 126 billion dollars, so being cautious about the environment makes not only moral, but also economic sense. At the very least, it deserves some serious studies with some serious funding. After all, neither you nor I can conduct such studies on our own.
Dr. Linda Nathanson-Lippitt, one of the leading autism specialists in Atlanta, said that “There are many different autisms.” There are several known biomedical problems that are linked to autism. Thus, if the child falls behind in language development, doesn’t play with toys, rocks back and forth or walks in circles – act quickly. You cannot afford to be complacent, even if your physician is. There are many good places that list known conditions and treatments with links to autism, e.g. Autism Society (http://www.autism.com/pdf/providers/adams_biomed_summary.pdf) and so on. These biomedical conditions may include sensitivity to certain foods, intestinal yeast infections, metabolic problems which require certain supplements (e.g. certain forms of vitamin B6 and B12), elevated levels of heavy metals, and so on. Most researchers think that autism is a problem of the body, not just the mind.
Whether or not the problem with the body is identified and treated, the most effective treatment for the autistic mind remains behavioral therapy (ABA, Floor Time and so on). In many cases, this therapy has been successful in reducing (or even eliminating) symptoms of autism even when used just by itself, without any other therapies. The earlier and more intensive this therapy is, the more chances the child has for a normal life. The good news is that early intensive behavioral therapy does work. The bad news is that this therapy is expensive (at least $20/hr, usually much more), the child needs a lot of it (30 hr/week for at least a year, usually more) and most parents are poorly suited to conduct this therapy themselves (I know, I have tried!). The typical cost is 40-80 thousand dollars per year, which most families cannot afford. More bad news – many states don’t include this type of therapy in insurance coverage. As we know, unless it is regulated, most insurance companies are unlikely to include coverage voluntarily. Even when we put aside the moral side of this equation, there remains the pure economics of it: the cost that an autistic patient may incur over his lifetime could reach 3 million dollars. Thus, the therapy that may significantly reduce this cost to society, or possibly eliminate it completely, is definitely worth the up-front investment.
The Affordable Care Act of 2010 had its share of negativity, but I will risk saying something positive here. This law lists behavioral therapy as a mandatory part of the insurance coverage (thanks to the amendment by Senator Bob Menendez of New Jersey, see section 1302 of the law). Many states that started covering this therapy started doing so only after or just before passage of this law. You may find more information about the costs of coverage to the states and the list of states providing it from the presentation by Stuart Spielman of Autism Speaks. You may also find our interview with Stuart in this issue of our magazine. Autism Speaks is the biggest organization lobbying for insurance coverage both on the state and federal level, among many other things they do.
Autism is a severe disability. If it is not a disability, it is not autism. Children with autism may be pretty happy – it is everyone around them who suffers. These children often grow into 17 year olds who are 6’ 2’’, 200+ pounds, whose tantrums become dangerous to everyone around them, including their parents and siblings. They often have to spend decades locked up in institutions, and then no one is happy.
We already know that some things work with autism, but we don’t really know what the culprit is. It is important to understand that autism is as serious as a heart attack and requires as much research. It needs a fundamental understanding and a fundamental cure. In addition to the moral reason, there is also a clear economic one. The heart attack is over in several minutes (one way or another); autism lasts for decades.
Unfortunately neither you nor I can find the cause or cure for autism. It requires significant joint (and very expensive) effort from many private and public institutions. At this time, federal spending on autism research is driven by the Combating Autism Reauthorization Act (CARA) signed by President Obama in 2011, which is itself an extension of a 2006 law. This law allocates $22 million per year for research programs, $48 million per year for early detection programs, and $161 million for “certain other programs” directed by the Interagency Autism Coordinating Committee. This brings the total to $231 million. This amount is three times less than the amount spent on Alzheimer’s research ($600+ million in 2013 per the National Alzheimer’s Project Act), four times less than obesity research ($823 million in 2011) and thirty times less than research on cancer ($6+ billion plus additional funding per each specific cancer type).
By comparison, a private organization, Simon Foundation, has provided $200+ million dollars in grants for autism research since 2007. Autism Speaks is another serious contributor towards the research, as well as many other organizations. The cause of autism is one of the rare areas of bi-partisan work, where republicans and democrats have come together. Congress has an Autism Caucus, founded by a Republican from New Jersey, Chris Smith, and Democrat from Pennsylvania, Mike Doyle. It is interesting that out of 20 physicians in Congress, only Republicans Michael Burgess of Texas, Phil Gingrey of Georgia and Democrat Donna Christensen of Virginia are participating. I imagined that doctors would be more interested in solving one of the most serious long-term medical problems in our country.
There are some problems that cannot be resolved by the individual and must be resolved by society as a whole. The only way any one of us can help to cure autism is by supporting one of these serious research foundations and asking our Congress and Senate representatives to join the Autism Caucus and increase the funding for Autism research.
In conclusion of this overview, I would like to repeat that autism is pandemic. Unless checked, it will get much, much worse. What we do now, both as individuals and as a society, will define all of our lives for decades to come (considering the rate of growth of autism cases). Some of us are already dealing with this tragedy, but none of us who think of ever having children or grandchildren can afford to look away and do nothing. Autism may soon be at everyone’s gates.