Rima Regas

There currently is a new wave of reviews of books written by so-called warrior moms. Do you know the kind I mean? The ones who obsess about finding a cure for their child, and the ones who claim their child is recovered. These reviews are generally critical of these moms’ obsessiveness over the treatment of their children’s medical and behavioral issues, and while their writing style is complimented, the content is viewed as damaging – a roadmap to the ruination of one’s life, were one to choose that path.  Another common criticism is that people who follow the DAN movement are intolerant of anyone who doesn’t follow their beliefs.

One particular review I would like to acknowledge here is Lisa Jo Rudy’s on Autism.About.com. I have nothing but the utmost of respect and admiration for Lisa, whose columns I read religiously, even though I sometimes find myself in opposition to some of her opinions. I appreciate her writings and often urge new parents in my Yahoo support group to browse through the wealth of information on her blog.

Back to intolerance and obsession… I’ll start with the easiest of the charges: intolerance. It is true enough that intolerance abounds as equally in parts of the DAN movement, as it does in the anti-anti-vaccine movements. In my view, Karyn Seroussi (whom I thank for getting us started down our path) is not any more intolerant than, say, Christina Chew, Paul Offit, or Jenny McCarthy. There are others, namely Holly Robinson Peete, who are more muted, and are therefore perceived as more balanced in their approach.

In our society, people who are on either extreme of an argument are intolerant of the other side. We see this in our politics, views on nutrition, education, and just about every aspect of our lives. Religion, in this country, has been a very contentious subject, with the various sides battling it out in the courts and in the political arena, with astronomical sums of money involved in waging these wars. We’ve lost our ability to respect each other’s choices while living and letting live. Instead, we find ways to force the other side into submission through various means that invariably end up pushing one side or the other into the margins. The Autism community is as polarized as the religious and secular communities. It’s a shame. In the absence of certainty of the causes or definitive treatments, unity, tolerance, and understanding seem a far better choice for our children than the discord and recriminations that are currently going on.

As humans, we are no less obsessive about parenting than any animal. While some animals kill or abandon their young if they can’t feed them or if they have a birth defect, humans nurture their young, regardless of their ability. It is our mission to ensure that our offspring are equipped to stand on their own when they reach adulthood. How equipped a parent thinks their child needs to be in relation to where they are right now, and in relation to where their peers are at the moment, is a very subjective, individual decision based on factors that are individual to the child and their parent’s view of that child’s potential. How much potential should a parent see in their child? Who’s to say? Who is to limit that vision? Are sacrifice and possible financial ruin justified in the face of eventual success? How about the knowledge that one has done all one could?

The difficulties in assessing which combinations of medical, behavioral and other therapies are going to be the right ones for any given child are many. Thus far, because there are no set protocols for each type of Autistic child, there is no way other than trial and error, to figure out what will work. There is a subset of children whose issues are intermingled with specific types of illnesses. Treating the illnesses, more often than not, brings a high degree of improvement on the behavior end of things. Unfortunately, getting to a diagnosis of the illnesses takes finding doctors who are not only sympathetic, but most importantly, knowledgeable about how to diagnose and treat them. In some cases, the symptoms of certain illnesses remain undiscovered until the child is 9 or 10 years old, or are chalked up to something else.

For most parents of these types of children, the average pediatrician is neither equipped nor willing to look into these children’s issues. It takes a very high level of open-mindedness to accept certain precepts – all in a society that, at least for now, is polarized on just about every level. How many of us have heard our pediatricians tell us not to worry, that every child develops at different rates, or that digestive issues are due to an immature system – that our child will grow out of it. How many of us have watched our children remain in the same situation and not grow out of it until very intensive action was taken? How many of us have had to unlearn truths which we thought were universal? These notions apply equally to what it is we all *have* to eat in order to thrive, how we educate our children, motivate, discipline, reward, punish, and many others all the way down the line. How many adjustments have we had to make in our thinking since the birth of our children? How different is nurturing an Autistic child?

The emerging truths seem to be that each person’s Autism type is different enough from the next that successful treatment will probably not come from one generic prescription for services and interventions. Some children will benefit more from ABA than they will from RDI, or will need ABA for at least a couple of years before they can move on to RDI. Other children will benefit from Floortime and, later, RDI and not benefit at all from ABA. On the biomedical intervention end, some may find that their child responds very well to taking Vitamin B12, while others respond to high doses of Vitamin B6, or a combination of vitamins and amino acids. Others will need some of the above with more involved medical intervention – depending on what other medical conditions they may or may not have. The same is true of all of the other interventions commonly used in Autism. How do you choose if not through trial and error, in the absence of some genetic or other testing that can tell you which way to go? How do you know you have any choices at all, if your pediatrician or other clinician doesn’t believe in these interventions and never puts them in front of you in the first place?

How unnatural is it for a parent to become very proactive when faced with the news that their child has Autism? How about when they hear from their doctor that there is not a whole lot they can do for their child? How unnatural is it for a parent to immerse themselves in the care of their child? How much effort is worthwhile? Objectively, who, other than the parent, is to determine how much effort any parent should put into their child? How about money? How about campaigning against the lack of research? The high cost of medical and behavioral services? The refusal of insurance companies to cover the treatment of Autism-related issues? How about the games played back and forth with the schools and state agencies to obtain eligibility for services? For most parents whose children attend public schools, obtaining special education services and ensuring that they are implemented is a career all on its own. What about those parents who choose to homeschool? Are they obsessed too?

In order to succeed in all of these fronts, it takes being an obsessed parent. The obsession is not in which paths a parent chooses. It lies in the circumstance Autism places us all in as parents, and also as siblings.  Those siblings know, either consciously or by deduction, that they will ultimately become their brother’s caregivers.

Parents who read books such as Karyn Seroussi’s can choose to take from it as much or as little as they want. They can choose to take the knowledge they gain from it to their doctor, or go to another doctor and discuss the notions and treatment approaches she presents in it. Parents can also choose one or two interventions and try them for themselves. They can also choose to read books written by medical doctors like Drs. Jacquelyn McCandless, Doris Rapp, researchers like the late Dr. Bernard Rimland, and many others who  dedicate their careers to the treatment of children with developmental disorders. Most of these parents seek out doctors who are aligned with these professionals’ way of treating certain underlying conditions. In the end, most parents who choose to implement alternative methods of treatment do so with the guidance of a medical professional, and stay with those approaches that yield measurable results.

By nature, the accepted behavioral therapies all are intensive. To the uninitiated, 25-40 hours of ABA therapy for one child would seem obsessive, and even damaging. However, the data collected from ABA therapy over the years shows that that range of hours are what’s needed in order to yield the desired results. One could say that behavior therapy is obsessively intensive. What if, as a complement to behavior therapy, biomedical treatment yields additional progress? What if what it takes is a combination of many approaches? What if a child can go from moderate to mild through a concentrated approach? Is an obsessive dedication to that child worth it then?

What is most striking to me in this debate is that people who use the term “special needs,” think nothing of calling parents who proactively attend to them “obsessive.” Just what is one supposed to do when they have a child with “special needs?” How do you help your obsessive child be the best they can be, if not care for them faithfully and untiringly? Are we supposed to just “sit there?” If that’s obsessing, then I too am guilty and will make no apologies.

It’s time we start learning from each other. What works from one may not work for all, but whatever we can find we have in common surely will be for the common good and advancement in the Autism and other communities. No one owns the truth. Not yet.