Autism War Story: PTSD, Enemy Invasion, Friendly Fire, Special Forces and a Bill Cosby Breakfast

PTSD

I really don’t mean to be flip, but at least military veterans suffering from Post Traumatic Stress Disorder (PTSD) don’t have to worry that they will open their front door and find themselves back in Iraq or Afghanistan. I don’t doubt that sometimes they imagine this is true, but it blessedly is not. Studies have shown that parents of children with autism sometimes suffer from PTSD and part of that, I am certain, is that we do indeed find ourselves right back in battles we thought we fought and won years ago. When I open a door – bathroom, bedroom, car, store, or school – I can tell you for sure I don’t know what I will encounter. About 90% of the time all that greets me is sweetness and light, but that other 10% is a real killer. The the invasion is invisible until the collateral damage is done, my boy the innocent victim of a war inside his body and brain.

And it isn’t just a child’s distress that triggers the trauma. Doctors, teachers, social workers – they can suddenly bail on us and make us think that we are crazy. They only half listen to the data, so convinced are they that none of a child’s previous experience is valid as we relive these moments and seek help to solve the problem yet again. Condescension has no expiration date.

Enemy Invasion

So without going into graphic detail, my boy has digestive issues that defy simple explanation but his inexplicably weak immune system leaves him vulnerable to invaders of all kinds. He easily avoids the common cold but his gut manages to attract all sorts of problems. The process of obtaining the necessary samples was what triggered the PTSD for me (but not for him, thankfully) – suffice to say that I had multi-sensory proof that there was something in my son that did not belong there.

We have learned over the years that he does not feel or react to pain in the same way the rest of us do – in 2007, he did not feel the pain of appendicitis until it was nearly too late. So when he came to me a few weeks ago and said his stomach was killing him, we knew it was trouble. He was already on more than one medication to ease digestive discomfort that was diagnosed through tests him telling us he was in pain. Photos showed his stomach muscles tied up in knots, even when it was empty. Feeling we could not wait to track down his specialist, we went to the pediatrician, who ordered tests.

Friendly Fire

When the pediatrician’s office returned my call about test results I was told – by an MD who was not our regular pediatrician – that there was indeed something amiss and that it was treatable but that she was “reluctant to treat it because it is asymptomatic in most people.” Even though the other tests came back fine (whew) and my son who does not feel pain was walking bent over from pain, she determined that it was “risky” to treat it. I said that given his immunodeficiency it was my view that it should be treated, but that I would consult the specialist and she agreed that when I got clearance from him she would write the prescription. I looked up the offender found in his sample on WebMD and even this cursory set of clicks told me that 80% of the people who encounter it suffer from abdominal pain. Asymptomatic in most people … or maybe not.

Lucky for us, the following day that we had a routine neurology appointment at the Lurie Center, a Massachusetts General Hospital-affiliated practice which specializes in serving families with developmental disabilities, and autism in particular. Our gastroenterologist is based there also, so I knew I would at least be able to speak with his nurse. I asked the pediatrician’s office to send our test results there ahead of us. During the drive to the Center my cell phone rang. It was our regular pediatrician calling to confirm that I had heard the test results and to say that they had faxed them to the Lurie Center. I preface this exchange with the fact that we really do love our pediatrician, who, in the past, has been collaborative with us as we navigated our son’s health maze.

He told me, “We really would prefer that you have the Lurie Center write this prescription because, well, it’s very controversial.”

“I think it is a good idea to consult them but I don’t understand why it is controversial to treat the only thing that the tests found wrong with him, especially knowing that he is vulnerable to such things,” I noted.

“Well, we would really prefer that they handle it.”

“I’ll let you know what they say. Thank you for sending the test results.” I hung up, confused and angry. I spent the rest of the drive wondering what I would have done if I didn’t have a team of specialists 30 minutes from our house.

Special Forces

In the context of the neurology appointment, I explained our dilemma and we went over the test results. This wonderful doctor typed up the whole story as we talked, took the test results, and said she would track down our gastroenterologist, who, it should be noted, is so in demand that he is nearly impossible to find on short notice. The man – so delightful in every way, a joy to work with – is a whirling dervish. But the intrepid neurologist returned a mere ten minutes later with marching orders.

“How did you find him so fast?” I asked.

She smiled at me over her half glasses, “It took three hospitals. I never give up. It’s a good thing I did find him. He says to treat immediately because this is known to trigger colitis and once it does it can’t really be reversed.” She called in the prescription for the same medication the pediatrician’s office had demurred on.

Within 48 hours, the pain was gone. Still, based on what I see now I can’t be sure we avoided the colitis, but we’ll have to wait until the treatment is complete.

I have many stories like this one, and I have been reluctant to tell them because they involve arguments with doctors, whom people want to trust, and my winning the argument, which sounds smug and self congratulatory. Also, most of them happened years ago and I didn’t really want to relive those chapters in our lives. I shared our story with Dr. Martha Herbert for her book, The Autism Revolution and told myself that I was done. But here it is, 2012, and we’re living it again. We are still fighting the same battles inside and outside my son’s body. I had begun to think that mainstream medicine was catching up with us, taking the journey with us and developing an understanding of how complicated autism can be. But here we had symptoms, conducted tests and an identified a pathogen and treating it was still considered controversial because my child is autistic. This isn’t even the full story but suffice to say that I shudder to think what might have happened if we had not had a team of specialists (that took me ten years to build, one doctor at a time) to back us up and get to the problem and treat it quickly.

And when the dust settles we will need to rethink the future and life plans in light of the reality that he may never truly be healthy enough to be as independent and high functioning as we know he can be when he feels good.

The Bill Cosby Breakfast

Meanwhile, the rest of my family had not lost their appetite the way I did and were, understandably, interested in eating. By that Friday we were pretty much out of food for breakfast – no bread, no cereal, no time for eggs. My younger boy usually eats whole wheat bread toast with Nutella on it. A quick read of the Nutella label reveals that aside from containing nominal protein it is mostly sugar. I remembered the Bill Cosby routine from the 1980s where he gave his kids chocolate cake for breakfast because it has milk and eggs in it and decided to roll with his logic. I served French Vanilla ice cream for breakfast. Given all of the detailed explaining he had to witness as we helped his brother, it seemed like the least, and most, I could do.

Did We Do Something Right?

The lesson learned every day? That we don’t take the blame for what goes wrong and we can’t take credit for what goes right. We tried to accept a long time ago that most of what happens in life is out of our hands – and yet…years of data collection and analysis have forced us to look at evidence and then try to predict outcomes. We are compelled to try and control whatever is within our grasp, no matter how slippery.

So now we have this explosion of language and introspection and creativity and we cannot resist the urge to ask, “Did we do something to make this happen?” Maybe. Somewhere out of the many new situations that life gave our boy, a window opened, a breeze blew through and the seeds of success landed and took root. We created some of the circumstances (camp) and others decidedly not (the loss of JM) but at this moment we see a sense of strengthening purpose and engagement and the hope it brings leaves us blinking in the sunlight.

We know it might not last in its current state – I don’t think we will ever be free from regression. And we all regress sometimes, learning from those same mistakes again and again (Why did I eat that? Why did I say that? Why did I drink so much of that?). But when fundamental skills – like speaking in paragraphs instead of phrases – ebb and flow we find we will do anything to keep that window open and the breezes flowing knowing full well we could wake up one morning to find it closed. The prospect of losing something so hard won triggers every possible human response: hope, fear, optimism, cynicism, love, faith, superstition, luck, magic, and faith – all tempered by what can only be called PTSD. The shock and awe of those early years can return in an instant when he looks at me and his eyes are blank and he is seeing only what is inside his head.

But thinking about it now won’t make it happen – and it won’t fix it when it does – so I will be thankful for the gifts we have today and have faith that they will still be there when we wake up tomorrow.