Tag Archives: asperger

For Diana

Posted on by findingmykid
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Last week, in response to my “Journey” post, I received this comment:

I read your blog from time to time. We have had a few exchanges, where I argued against the idea of “recovery” and said we just need to support our kids to be successful. You said you thought that was mincing words and we both want the same things. I’m really glad to read that Martin is doing well and progressing. I’m sad to hear you are still trying to “recover” him. Some day he may read what you have written. And he will want to tell you that he wasn’t lost, just different. Keep helping him, of course, but maybe this holiday season there is a moment to see that he is not lost? It is a big job, I know, but it is tough on a kid when “fixing” him becomes his mother’s project. That is a lot to put on you both. I wish you well.

The comment comes from a woman I’ll call “Diana.” I don’t know her, except insofar as she is also a lawyer in the New York City area (that’s what I am), and insofar as she has a son with Asperger Syndrome, who I believe must be 10 or 11 years old now. Diana and I exchanged some comments on this blog in April and May 2012, and again in January 2013; we were respectful of each other’s positions on handling autism, and as is evident in the comment I’ve pasted above, she continues to be positive and respectful. I appreciate that, and I thought that, rather than tuck my response into the less-read comments, I would post it front and center.

Diana, this is for you—

Two and a half years ago, you wrote to me skeptical of the concept of ASD recovery. About your son, you said, “I want him to be proud of who he is and how he is. It is a hard balancing act, because I also want to improve his social skills and give him the most options, so to some extent I am working always to decrease how his ASD presents.” When I engaged you in discussion, you elaborated:

I do remain skeptical of recovery as a concept, but how to approach treatment is up to each parent and there are no clear answers. But the larger question, I guess, is that I don’t want to return my son to full neurotypicality because I don’t see him as having been in a certain place and then having regressed or changed. I don’t perceive an assault on who he is by ASD.

Eight months after that comment, in response to a post I wrote about Adam Lanza, the Newtown gunman, you said this:

. . . I don’t understand how the language and idea of ‘cure’ and ‘recovery’ is consistent with teaching our kids to love and accept themselves as they are. I don’t doubt your sincerity. But for me, I want to help my kid but not cure him. I really think autism is a big part of who he is. For me, lots of therapies are great and work well—but they are seeking to assist and not to fundamentally alter my kid. I like my son autistic and I like other family members of mine autistic. I would encourage you to check out grasp.org and watch the video there—it is a very smart introduction to how functioning autistic adults feel about this question. If we want our kids to be happy adults, I think we need to listen to these adult voices first and foremost. My hopes are the same as yours and I know we are all just trying to do the best by our kids.

We are all trying to do the best by our kids. I believe that, and I appreciate your recognizing and acknowledging it. Still, to be honest, I don’t think, at least not now, that we are undertaking the same goal and just mincing words. Our hopes are not the same: You hope to raise an autistic son whose behaviors are typical enough that he can function in society. I hope to raise a son who has no trouble functioning in society because he is typical.

Autism spectrum disorders do not just happen. They are not random behavioral conditions. Autism is not an individualized Weltanschauung, like the way my brother Eddie is super laid-back and my friend Stacey is Type A. Autism spectrum disorders are the manifest symptoms of health problems, most usually compromised immune function. We continue to debate the extent to which these health issues result more from genetics (MTHFR mutations, &c.), or more from environmental triggers (vaccines, GMO’s, toxins like synthetic chemicals, &c.). What is no longer up for debate, unless you ignore all current science, is that if your child has an autism spectrum disorder, he has some combination of underlying conditions affecting his health, and those conditions are resulting in neural misfires.

Your approach—and I invite correction if I am wrong—seems to leave the health conditions that result in Asperger’s uninvestigated and untreated. Instead, you rely on behavioral therapies “to improve his social skills and give him the most options,” because you are “working always to decrease how his ASD presents.”

You “remain skeptical of recovery as a concept.” I will say that I, personally, within my own circle, know three boys, ages 19, 15, and 12, who have recovered from autism. These are not children whom I have “heard of” or “read about.” They are boys whom I know. I can, and do, talk to them and their parents. Each of the three was diagnosed with autism, from mild to moderate, at age two. They recovered fully, by their parents’ estimation, at ages 8, 12, and six. They are not “quirky.” They no longer have rough edges or trouble with social skills. They are, for every purpose I can see, restored to typical neurofunctioning. They reached this point because their families treated their underlying health conditions, as I am doing with Martin. I know that every child is a puzzle, that not every child who is treated biomedically will recover (at least not with what we know today), and that Martin’s “autism” symptoms may, to whatever extent, persist his whole life. But if you need to know what “recovery as a concept” means, it means this: restoring a child’s immune function and overall health, which in turn alleviates autistic behaviors symptomatic of compromised health.

You “like [your] son autistic and … like other family members of [yours] autistic.” I adore my child. I will adore him whoever he is and however he behaves, a fact that I impart to him daily. But I do not “like” his being autistic, because his being autistic means his health is compromised. If I were to learn today that no biomedical intervention would ever change Martin’s behavior in any way, I would still continue with his special diet and homeopathy and supplements because I want to restore his health. I cannot think of another condition that I would leave untreated, so why would I stop treating his gut-flora imbalance, candida overgrowth, or mitochondrial processing disorder?

You encourage me to consider the experience of autistic adults when determining what course to pursue with Martin. I do. I have read at length about how demoralizing traditional behavioral therapies can be for persons with autism, about how ABA can frustrate and even humiliate its subjects. (Not all ABA. Some practitioners who begin with ABA and find their way to a gentle approach.) I referred above to a 15-year-old I know who reached recovery around age 12. His mother reduced his behavioral therapies after he protested, “Mom, they want to change everything about me!” By contrast, the family continued and even increased biomedical treatment, which by the end of his recovery process, the boy was requesting because of the way it made him feel better.

When Martin asks about why he cannot eat Goldfish® crackers, I explain, “Oh my goodness! If you eat those crackers, you will get those funny poopies, and the ingredients will make it hard to pay attention in school. Remember how that happens sometimes?” The culprits in this equation are the processed crackers, and how they affect Martin inside. When your son asks why you want to “improve his social skills” and “decrease how his ASD presents,” how can you respond? Is the culprit crackers and firm bowel movements, or does the culprit seem like him?

Martin does not know he has autism. He has never heard that diagnosis. He knows that he eats a restricted diet because some foods “hurt his belly” or “make his tummy do funny things.” He knows that the drops and supplements he takes are like Mommy’s vitamins and probiotics, a good idea for almost anyone. We don’t do traditional behavioral therapies. I have found that most traditional therapies—ABA, speech, even to some extent occupational and physical therapy—come with the theme, “Don’t [sit, rock, behave, chant, stim, &c.] that way. That is unacceptable. Try to fit in.” I don’t want Martin to hear that he needs “some work around the edges” (your phrase, from a comment on 23 April 2012). Martin’s behavior isn’t what needs work. His behavior naturally adjusts as his health improves.

(Note: Martin receives traditional OT and PT at school, because they are on his IEP. In that regard, I am grateful that he attends a self-contained special education school, where every student participates in OT and PT, so that they seem like a standard part of the curriculum rather than something directed at changing Martin.)

At your request, I checked out grasp.org; it presents testimonies similar to others I have read, from autistic teens and adults. In return, let me point you toward stories like What Is My Mother Doing to Me?, which was written by a 14-year-old in gratitude for his recovery. I hope that Martin will not have to tell anyone what it is like to be an autistic adult, because he will never know. And if he reaches neurotypicality, I don’t think either of us will regret the result. As I have written before, in all my experience communicating and working with other ASD families, I am yet to hear from anyone who regained his/her health biomedically and subsequently says, “I wish we hadn’t done this. I prefer being autistic to being neurotypical.” (My sample size is not restricted to the three aforementioned recovered boys whom I know personally. I know of dozens of recovered persons, on-line or otherwise.)

You seem to worry that Martin will one day read what I write on my blog. To that I say, he’d better. In part, I write this blog for Martin. I don’t think he is “lost” or that his personhood needs “fixing.” I’m not sure why you use those words. Two weeks ago, when I got socked with a virus and ended up in the hospital, I wasn’t “lost” (except maybe insofar as I passed in and out of consciousness…!). My immune system needed help fighting a health condition, and when I received that help, I recovered. My son’s immune system needs help. I’m struggling to give him that help. I look forward to the day when he understands what I’ve written here, when he receives confirmation that he is so precious and so loved that Adrian and I would scour every corner of God’s green earth to give him every advantage we can.

So that’s it. Your and my disagreement lies in whether it is preferable to treat the health conditions that underlie autism, and let the behavior do as it will, or whether it is preferable to leave the health problems untreated and try to “smooth” the resulting behavior. I’ve phrased the question in a biased way, of course. I’ve done so because I believe it is preferable to treat “autism” biomedically. You take a different approach, and that is fine. We’re cool. I don’t have all the answers.

I do hope you’ll stick with the blog, though, and continue to comment. I feel invested in your son and your journey. I pray that it leads you both to a place of contentment.

Martin in action at the trampoline gymnasium. Not lost. Just getting healthier.

Martin in action at the trampoline gymnasium. Not lost. Just getting healthier.

Diagnosis

Posted on by findingmykid
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Last year Adrian read Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity, a book about children who are profoundly “different” from their parents. Solomon profiles families affected by mental illness, Down syndrome, deafness, dwarfism, gender identity, autism, along with parents whose children were conceived in rape or grew up to commit mass murder.

Andrew Solomon also has an article titled “The Reckoning” in this week’s New Yorker, based on interviews he conducted with Peter Lanza, the estranged father of Adam Lanza.

Adam Lanza was the 20-year-old man who, on 14 December 2012, killed his mother, then 20 young children and six teachers at Sandy Hook Elementary School in Newtown, Connecticut, and then himself. I blogged here about the fact that Adam was diagnosed with Asperger’s Syndrome.

On NPR’s Fresh Air program this week, host Terry Gross interviewed Andrew Solomon about “The Reckoning.” Solomon made a point that also appears in the article, a point about diagnosis: According to Peter Lanza, receiving a diagnosis—Asperger’s Syndrome, now regarded as high-functioning autism—enabled him and his ex-wife, Nancy (Adam’s mother), to ignore signs of more troubling developments in their son. As Adam became isolated, and prone to obsessive-compulsive behaviors, and fascinated with violence, including violence against children, his parents attributed the oddities to Asperger’s. Adam has Asperger’s Syndrome, they thought. Asperger’s makes him behave strangely.

I didn’t think, in the weeks after 14 December 2012, and I don’t think now, that Adam Lanza’s parents were culpable in what happened at Sandy Hook. That’s a ridiculous notion. They talked. They tried. They sought the advice of specialists. Nancy Lanza appeared to believe, genuinely, that coddling Adam and his increasingly disturbing whims was the best means of supporting her son. The burden we place on parents today is too great even without attributing to them their children’s reprehensible violence.

Without in any way blaming Peter or Nancy Lanza, I appreciate Peter Lanza’s recognition (and Andrew Solomon’s explanation) that a diagnosis is broad and easy to hide behind.

To that substantive point, I will add one more: A diagnosis of autism, while it may be comforting, is largely meaningless.

Martin does not “have autism.” Martin has a variety of conditions, linked by autoimmune disorder, that result in symptoms labeled as autism.

It is minimally probative when doctors label symptoms as disease. Suppose that a man goes to the doctor and is diagnosed with “wheezing.” Suppose that the doctor tells this man that many helpful therapies exist to alleviate wheezing, including throat lozenges, tea with honey, breathing exercises, and even CPAP masks. Suppose the doctor suggests that the man eliminate smoking from his routine, because smoking is known to exacerbate wheezing. Suppose the doctor goes so far as to prescribe a drug that relaxes the airwaves, so that the man can walk about with his wheezing less evident.

Would you think the doctor had been thorough? That he had done his job?

Or would you fault the doctor for addressing the symptoms but failing to diagnose lung cancer, the disease that caused the wheezing?

When Martin was diagnosed with PDD-NOS, and then with autism, I cried. A lot. Even Adrian cried. Autism is treated like a death sentence. Parents are coached to grieve for the child who once was but will not be again.

I wonder now what the days surrounding Martin’s diagnosis would have been like if the team of “experts” we paid had said something like this:

Your son has a complicated autoimmune disorder. His gut, where most of the immune system subsists, doesn’t have the right balance of beneficial flora, and therefore he can’t digest nutrients properly or respond to intruders like parasites, harmful germs, unchecked proprionic acid. On a related note, your son has a mitochondrial processing disorder, which is causing low muscle tone and lethargy. Several genetic abnormalities are contributing to the injuries. The totality of these disorders is resulting in systemic inflammation as a subpar immune response, and that inflammation, which persists even in the brain, is causing “misfires” within the neural synapses. These misfires result in the symptoms you’re witnessing: repetitive behaviors, lack of eye contact, social awkwardness, inattention, drifting, and speech skills that lag behind your son’s cognitive ability.

I imagine that, if three years ago we had been told all that, we would have cried less and got to work sooner. We would have asked questions like how to re-balance the gut flora, how to resolve the mitochondrial processing failures, and whether the genetic abnormalities can be addressed.

(We might also have asked how this autoimmune disorder arose, and whether it had anything to do with the hospital threatening us, placing our healthy son in the NICU, and pumping him full of antibiotics, after the unplanned C-section robbed him of the protective effects of his mother’s vaginal microbes. That’s a topic for another post.)

I won’t deny that I take comfort in the existence of an “autism community.” (Solomon makes the point that Adam Lanza rejected his Asperger’s diagnosis, and refused to consider himself part of the Asperger’s community.) I do, however, argue that the autism diagnosis is an impediment to recovery. “Autism” sounds impossibly untreatable. The health conditions underlying autism? Not so untreatable. Those we can roll up our sleeves and tackle.

Andrew Solomon, who is public about his own battle with depression, lamented in the Fresh Air interview that Adam Lanza’s depression might have been treatable, had it been recognized as depression instead of hidden within Asperger’s. I ask: Would the depression have been hidden if Adam’s parents had realized that Asperger’s Syndrome is a symptom of an underlying condition? Or might they have suspected that the depression arose, in whatever measure, from the same underlying condition? Might they have had the tools to roll up their sleeves with more success?

Adrian reports that he found Far From the Tree (emotionally) difficult. He put it down for a while after reading that courts tend to issue mild sentences for parents who kill their special-needs children. Some forms of filicide, it appears, are considered forgivable. Would the filicide be so forgivable if those parents had children with diabetes or leukemia or renal failure or any other condition that, with medical and dietary and lifestyle attention, might be kept at bay?

Autism is the symptoms of a treatable medical problem. Diagnosis matters.