Victory Over Autism — Practical Help for Families Seeking Recovery
Originally published January 6, 2016, at www.thinkingmomsrevolution.com
Autism is so common these days (the latest estimate in the U.S. is 1 in 45 children) that the autism section of the bookstore or library doesn’t come close to resembling the autism section of 1975 when the autism rate was considered to be about 1 in 100,000. I know this for a fact because I actually read all the books in my local library back then; I don’t remember the exact number, but I’d say there were less than 10. In contrast, I checked for “autism” in the “books” category on Amazon today and got back 15,538 items.
Holy autism awareness, Batman!
So, yeah, it seems that everyone’s got something to say on the subject of autism. That being the case, how could anyone justify publishing yet another book on autism? Well, every once in a while someone covers territory that just hasn’t been covered before. And that’s the case for Mary Romaniec’s new book, Victory Over Autism: Practical Steps and Wisdom Toward Recovery for the Whole Family , which, though presold at the AutismOne Conference last May where Romaniec was speaking, makes its official debut today.
The subtitle might be a little misleading; if you’re looking to answer the question “how do I recover my kid from autism?” you might be disappointed that, beyond a few tantalizing hints, Romaniec doesn’t give any sort of advice as to what types of therapies or treatments might be helpful for your child. On the other hand, this just might be the single most valuable book you will come across in your child’s journey of recovery. You see, autism treatments abound, and there are any number of books that can tell you what they’re about and how to go about doing them (to understand the medical issues and create a treatment strategy, the best guide I’ve seen is Patricia Lemer’s Outsmarting Autism). But what I haven’t seen before is real, practical advice on how to keep your sanity, your marriage (if you have one) intact, and your unaffected children reasonably well-adjusted in the process. And that’s exactly what Romaniec’s book provides.
Romaniec starts with the assumption that when we have children, we all want our kids to be happy, healthy, and able to achieve what they want in life. For many people, a diagnosis of autism throws a tremendous monkey wrench into the wheel of life, often knocking it right off its axle. People react to the diagnosis in very different ways, but for most there is some sort of grieving process when it becomes clear that the “normal” life a parent envisioned for a child is not a likelihood. I would quibble with Romaniec’s assumption that grieving is “necessary” for the parent of a child with autism, because there are parents who don’t need to grieve in order to be effective advocates for their children – even some whose children are severely affected. But it is a fact that, for many people, there will be an adjustment period that looks very much like classic grief, complete with stages that Romaniec describes, similar to the stages the terminally ill go through that Elisabeth Kubler-Ross described in her seminal work On Death and Dying. Romaniec describes what to expect, how each of the stages played out in her own life, ways to survive them, and the dangers of getting stuck for too long in any one of them.
The heavy lifting of autism recovery doesn’t begin until the grieving parent arrives at what Romaniec calls the “resolve” stage, where the parent has returned to full functioning, ready to find the best way to help his or her child move forward. Romaniec considers this the “completion” of the grief process, but as a parent with more perhaps than my fair share of grief in my history, I know that it’s almost never as clean as that sounds. There are almost always residual feelings that can hijack a day or week or month if you let them, and there may even be events – often regressions or the development of serious medical conditions – that can plunge you straight back into the thick of grief. In any event, one does need to have the ability to think clearly and act accordingly in order to form a recovery action plan, and a parent often doesn’t truly get to that point until after going through some period of denial, anger, and bargaining.
Romaniec makes the case that if you are going to seek recovery for your child, you will need to possess or develop the attributes of a “bold parent”—a particular set of character traits that will enable you to ignore or transcend the negative messages you are sure to receive from parts of the medical, educational, and even autism communities.
The mainstream medical community simply hasn’t got a clue. You are likely to hear “Don’t try any of those diets; they’re dangerous and cruel, and they don’t do any good anyway” when the truth is that, for very many people with autism, digestive issues play a large part in both their autism and co-occurring medical conditions, and special diets may indeed have a tremendous beneficial impact.
The educational community has been conditioned to believe that autism is a “lifelong” “genetic” condition, and the best you can hope for is that with enough early intervention your child will “adapt” to his or her condition, when the truth is that, with appropriate medical interventions and therapies to suit the child, it is entirely possible for a correctly diagnosed child to lose the diagnosis of autism or at least significantly ameliorate its symptoms.
And many people in the autism community, especially “high-functioning” self-advocates would have you believe that, unless you proclaim that autism is awesome and that you don’t want to “change” anything about your child, you don’t love your child, when the truth is that love sets no limits on what our loved ones can accomplish.
As a bold parent, Romaniec encourages you to appoint yourself CEO of the “corporation” that is your child’s progress. It’s an apt analogy as there are many traits required in a CEO that will stand in good stead when wrangling therapists, medical doctors, IEP meetings, and teachers, but I prefer another analogy she uses, that of the captain of your child’s team.
Romaniec waxes indignant when she recounts how a school administrator told one parent at an IEP meeting that “The team has agreed that the child does not qualify for extended year services.” Romaniec stopped the school administrator right there, saying, “Excuse me, but we are a part of the team too, and we are not in agreement.” As Romaniec makes clear, no one in your child’s doctor’s office, or your child’s IEP meeting, or your child’s classroom is going to invest more in your child than you are. Twenty years from now, you will still be in your child’s life, but the likelihood is that their current therapists won’t be. You are the parent, the “captain” of your child’s team, and you are in charge.
If that is a daunting prospect, you need to work on developing your “bold parent” traits. You will frequently encounter those who assume they know more than you do about your child because you’re “just a parent.” We at TMR would agree that it’s important not to buy into that for an instant. Or if you do, to let go of it as quickly as possible. You are the person who knows your child inside and out. If you listen to what your heart says your child needs and seek guidance with an optimistic attitude, you will find the next step for your child’s progress.
Useful as these chapters are, perhaps the most important chapters are the chapters where Romaniec emphasizes how crucial it is to keep in mind that, while you may be inclined to sprint toward the finish line of recovery – sacrificing all for your child’s progress – that inclination will not serve you in the long run. If you think of it as a sprint, you will be tempted to put everything into your child’s recovery, which can only mean that there will be nothing left for your spouse, your other children, or – most importantly – yourself. The stress will take a toll on every aspect of your life if you let it. (Note that parents are not always on the same page with respect to what actions to take, with the result that one parent may undermine the efforts of the other. Often that’s because one parent has not yet gotten through to the “resolve” stage, which is one reason why it’s important to be aware of the grieving process and to strive to work through it.)
The wiser course is to take a breath, make an action plan (Romaniec gives detailed suggestions on how to do this), and budget in time and energy spent on yourself and other family members. These are not negotiable “nice to haves,” these are necessary expenditures that will get you to your destination – whatever it is – in good enough shape to enjoy it when you get there, having also enjoyed the journey (otherwise known as your life). Otherwise, you could find yourself – like Romaniec did – with a recovered child but in the emergency room with a life-threatening illness and a pile of regrets. As Romaniec points out, it is easier to stay healthy than to regain your health once you’ve lost it.
I personally am delighted to see a book emphasize these points and illustrate them in such clear and direct prose. I don’t have a child with autism, but I have had some similar experiences and have watched friend after friend put themselves on the back burner while getting cutting-edge treatments and therapies for their children, only to find that their health, marriages, and/or other children have been severely compromised along the way. As Dr. Anju Usman says in her eloquent foreword, “In hindsight, I wish the tools and insights Mary provides in Victory Over Autism had been provided to me when I was dealing with my personal and professional struggles.”
Speaking of those “other children,” Victory Over Autism’s chapter on siblings is a compassionate and comprehensive explication of the important considerations for neurotypical siblings of children with autism. Often parents spend so much time in crisis mode dealing with their child or children with autism that they don’t notice the toll it’s taking on their other children. Romaniec elegantly lays out ways to keep your other children from ending up as collateral damage in your quest to recover your child with autism.
It’s rare for a non-fiction writer to save the best for last, but Romaniec’s final chapter, “Recovery is Achievable,” is the best writing in the book and probably the best all-around coverage of recovery I have yet to see. She defines the concept clearly, making sure that people know that “recovery” is not the same as “cure.” While many can and will lose the diagnosis of autism, there may be residual issues due to delayed development or medical issues such as immune system dysfunction or gastrointestinal dysfunction which may keep parents and child just as busy as before recovery for an indefinite period of time. In addition, she offers the perspective of Raun Kaufman, himself recovered from autism and currently CEO and Director of Global Education for the Autism Treatment Center of America:
“I consider someone fully recovered when they are not only free of outward symptoms but they are recovered on the inside too,” said Raun. “They don’t have to work extra hard in social situations and they are not secretly holding themselves back from repetitive behaviors.”
But Kaufman and Romaniec make it clear that full recovery is not the only end that can be declared “victory.” The key is not to accept or put limits upon your child’s health and development. As Kaufman says, “. . . there are no time limits on what a child or adult can do.” And we literally have no idea what the person in front of us may be capable of years down the road.Raun Kaufman
Romaniec quotes an NIH press release about an NIH-funded study that came out in January of 2013, “Otpimal Outcome in Individuals with a History of Autism,” that convinced even Thomas Insel, former head of the National Institute of Mental Health and the Interagency Autism Coordinating Committee, that recovery is a real phenomenon.
The study identified a population of children that had been diagnosed with autism, and as Romaniec relates, they were very strict as to the qualification for that. PDD-NOS was apparently not good enough. The researchers then investigated the children’s health histories to verify that they had indeed been correctly diagnosed in the first place and verified that none of them qualified for an autism diagnosis any longer.
The paper states that some of the children may have some residual social issues, which seems entirely understandable and even predictable to me. I have a nine-year-old son who had apraxia; he found talking extremely difficult as a toddler and preschooler, when children around him were chattering up a storm. Apraxia has long been a thing of the past, but he has “residual social issues” in that he is painfully shy and is reluctant to speak up in class. Obviously that doesn’t mean he has autism, nor does it mean the children in the study do.
Woven artfully throughout the recovery chapter are a number of extremely compelling stories. Not all of the children in these stories achieved full recovery, but all of them improved to a much greater extent than most of their doctors, teachers, therapists, and sometimes their parents themselves, thought possible. It’s hard not to be affected by story after story of children whom “experts” expected would be living in institutions or group homes by the time they were teenagers, only to be told that many of them went happily and healthily off to college.
When reading a book like this, it’s easy to get cynical and think the author may be exaggerating or, worse, making it all up as Janet Cooke did in her Pulitzer Prize-winning story in the Washington Post. I didn’t have that luxury, though, when reading Victory Over Autism as I know most of the parents mentioned personally (including Romaniec herself). I have no way of knowing whether this direct knowledge of the parents and children involved resulted in their stories having a greater or lesser impact on me; I can make a case for either one. But I can unequivocally say that I found them deeply moving and inspiring. I suspect you will too.
