Autism: difference or disorder?

About 2 years ago, when the change in diagnostic criteria for Autism Spectrum Disorder proposed for DSM 5 was in the news, I wrote a blog post about the problem of giving children a diagnostic label in order to "get services covered" by insurance. An irate reader, himself a well know speaker and advocate for people with Autism and Asperger's, wrote a blog post in response, in which he said, "Dr.Gold simply does not understand that Autism is not a psychiatric disorder."

In the wake of the recent CDC statistics indicating that 1 in 68 children has autism, and the designation of April as autism awareness month, I have been thinking about this dilemma a great deal. For this young man and I were really exactly on the same page. Both of us were calling for a respect for and value of uniqueness and differentness.

This perspective was again beautifully articulated in a TED talk by Andrew Solomon, author of Far From the Tree. In an in-depth discussion of a range of entities including homosexuality, deafness, as well as autism, Solomon identifies the power of unconditional love in the context of complete acceptance of individual differences.

While I fundamentally agree with the perspective of these two men, my mind stumbles on these facts. The DSM 5 is the fifth version of the Diagnostic and Statistical Manual of Mental Disorders. The CDC is the Center for Disease Control. So much as we may want to think of autism as a celebration of individual differences, the prevailing view is that it is a disorder.

Solomon suggests that by hoping a child does not have autism, a parent is saying that she wishes this child did not exist and that she had a different child. I see the exact opposite. The parents I see who are in this position unconditionally love their child for who he is. They are motivated to make sense of his experience and give him space to grow in to himself.

While there is emerging evidence of the role genetic and neurobiological mechanisms in the behaviors collectively referred to as autism, it is not a know biological entity in the way, for example, diabetes is.

One little girl I worked with ran around in circles at preschool and repeated letters in nonsensical patterns. There was a strong family history of both anxiety and "quirky" behavior. She was easily overwhelmed by a range of sensory inputs.  Her mother would herself become overwhelmed in the face of her child's struggles as she recalled her own difficult childhood. Another little boy endlessly repeated whole scenes of dialogue from Disney movies. He ate only 3 different foods for the first 7 years of his life. His parents fought frequently about his challenging behavior, which usually caused it to escalate.

For both these children the diagnosis of autism was raised. But both sets of parents resisted. When they addressed the child's unique qualities as well as the environmental stresses that contributed to the problematic behavior, dramatic changes occurred. Both are now teenagers. The first is a talented actress, singer and musician. The second is a chef. Both have active and successful social lives. One view is that they "outgrew" autism. Another is that they were they given space and time to grow into themselves.

It the first five years of life there are major changes in the brain, changes that occur in the context of relationships.  We are now recognizing that changes occur not only in brain structure, but in genes and gene expression as well. It is a work in progress.

These children and families do benefit significantly from help. This may be in the form of a special preschool placement, occupational therapy, family therapy or other interventions that can set these children on a healthy path of development. In order to get these services, a diagnosis is often necessary. This is an example of the tail wagging the dog.

The massive rise in diagnosis of autism indicates that something is amiss. I wonder if that "something" is that in our fast-paced society we rarely take the time to listen to the story, to let meaning unfold. There is a need for an "answer." There is a lack of tolerance for uncertainty.

When a child is young, when his "true self" is emerging, supporting parents efforts to "hang in there" without the need to name, to label, to diagnose, may give these young children the best opportunity to transform what in early childhood may be challenges and vulnerabilities in to adaptive assets and strengths.

Did Electroconvulsive Therapy or Storytelling Cure Simon Winchester?

Joe Donahue, the brilliant host of WAMC's Roundtable recently interviewed Simon Winchester about his short e-book "The Man With the Electrified Brain. In the book Winchester describes his four-year experience as a young adult with an undiagnosed serious mental illness that was at the time apparently successfully treated with electroconvulsive therapy (ECT.) 

There is much speculation of the nature of the illness. Winchester himself, on discovering DSM (Diagnostic and Statistical Manual of Mental Disorders) IV many years later while writing The Professor and the Madman, diagnosed himself with a "dissociative disorder." A professor of psychiatry at Stonybrook who is a proponent of ECT, based on correspondence with Winchester,  has diagnosed him with "simple melancholia," an illness he recognizes is not in the DSM and attributes to "abnormal hormone functions."  A Psychology Today post entitled What Did Simon Winchester Really Have?" refers to "psychotic episodes."

In his introduction to the e-book Winchester explains his reasons for writing about this subject so many years later. He describes living with feelings of shame, and, following the death last year of both his parents, a desire to "come clean." He writes; 

My mother and father, tough old greatest-generation Britons who lived well on into their nineties, belonged to a time and class that disapproved mightily of any kind of mental infirmity...Stuff and nonsense, my father would bellow on hearing of my troubles. Damn tomfoolery was his only diagnosis, Pull yourself together his only prescription.

The answer to my question may be found at the end of Donahue's masterful interview. After covering the scope of Winchester's story, Donahue moves on to material that is most definitely not in the book. "Without getting overly psychological," sharing that he, like Winchester, had recently lost his parents, Donahue wonders about a wish to " fill in the blanks," about his history, and in particular his genetic history.

What follows is, in my opinion, the most fascinating and important part of the interview. Winchester tells of his elderly mother going with him to Buckingham Palace in 2006 when he became an OBE (Officer of the Order of the British Empire) He describes her getting tipsy on two glasses of sherry and telling "unbelievable stories about her life," stories of "espionage and affairs." Winchester tells of his father's history of being badly treated as a prisoner of war, and in the final weeks of his life, after suffering a stroke, beginning to open up about his own history. He speaks of his father's growing tolerance of talking about mental illness. Then, most poignantly, Winchester says, “It was brimming, I could feel a sense that this is all going to break, and then he died."

After this comes an exchange where Winchester describes an uneasy sense that his illness may return, having been told by a number of people that the ECT, " didn't cure you."

I wonder if it is this very telling of the story, including his incomplete yet meaningful connection with his parents towards the end of their lives that will prove to be the “cure.” This telling of stories as cure is well known within the discipline of psychoanalysis. I describe it in a previous post Childhood Trauma: Stories that Must Be Told:

French psychoanalysts Francoise Davoine and Jean-Max Gaudilliere have an adage on the cover of their book, History Beyond Trauma; "Whereof one cannot speak, thereof one cannot stay silent." They argue that personal stories of war and societal trauma, if not told in words, emerge as symptoms, sometimes as mental illness, sometimes in subsequent generations. 

Of course I do not know if Winchester's family history had any relation to his illness. Yet I cant help but wonder, if this silence, this "British reserve" had a role to play, both in the illness and also in Winchester's chosen profession as a writer, or "storyteller." Perhaps it is his storytelling that was/is the cure.

We are currently in hot pursuit of the science of mental illness. This past Sunday, in an op ed in the New York Times, The New Science of the Mind,  Nobel Prize winning neuroscientist Eric Kandel writes about our growing ability to understand the biological basis of psychiatric disorders.

Listening to Winchester's story motivates me to again point to the need to attend to the relational and historical context of being human in our quest to understand mental illness. If we focus exclusively on the "biology" without attending to the way the brain grows and changes in the context of relationships, we miss what a colleague referred to as the "poetry" of human nature. 

I have great respect for the complexity of the kidney. But the way the proximal and distal tubules transport ions is likely not related to, for example, the owner of those kidneys' relationship with his mother, or his father's survival of the Holocaust. But the function of his brain/mind most certainly is.

My hope is that what we will take away from Simon Winchester's story, thanks to Joe Donahue's  interview, is that in our pursuit of the science of mental illness we must find a way to make room for storytelling.

ADHD: biology or environment?

When I write from my clinical experience as a behavioral pediatrician, I am careful to change identifying information to protect the privacy of my patients. It is rather freeing, therefore, to write  about characters in a novel. Left Neglected by Lisa Genova, who is also a neuroscientist (perhaps she took the story from some real cases) offers some important insights into this complex subject.

The story revolves around Sarah, a 37-year-old mother of three young children, who, distracted by her cell phone on her drive to her high-powered job, crashes her car and suffers a traumatic brain injury. In the days just before the accident, she and her husband are called in to see their seven-year-old son's teacher who says, in not so many words, that they should have him evaluated for ADHD and possibly medicated. During the time that Sarah is hospitalized, he is in fact diagnosed and started on Concerta.

But there is another relevant story line. We learn that when she was a child, Sarah's 6-year-old brother accidentally drowned in a neighbor's pool. When Sarah's mother comes to take care of her in the wake of her accident, we gain further insight into the havoc this event wreaked on their relationship. Her mother is holding her hand in the hospital. She writes:

After Nate died, at first she held my hand a little tighter. I'm seven, and my hand is in hers when we cross the street, when she leads me through a crowded parking lot, when she paints my nails. Her hands are confident and safe. And then I'm eight, and my hand must be too awkward to hold along with all that grief, so she just lets go. Now I'm thirty-seven, and my hand is in hers.

Sarah acknowledges that her intense drive to succeed has been at least in part powered by this double loss of her mother and brother. In her pre-accident life she is a master multitasker who works very long hours and is rarely home for in time dinner. She clearly adores her kids and is devoted to them, but is usually answering emails while getting them ready for school.

As she and her mother work to heal their relationship, we see a new kind of calm in Sarah (part of this is necessitated by the restrictions on her life imposed by her brain injury.)  In a lovely scene where she is helping her son with his homework, she is present with him in a way that she was not in her prior frenetic lifestyle. Together they figure out that he works better standing up. If they cut out the problems, he can do them individually and not be distracted by all of the questions on the page. Both are thrilled by his success.

Jubilant pride skips along every inch of his face. It strikes me that he looks like me.

I recognize that these are fictional characters. Yet I think that an assessment, as I do with real patients I see in my practice, can offer some insight into this complex question of the interaction between biology and environment.

There is likely a genetic vulnerability for attention problems in Sarah's family. Her brother's accidental death may have in part been due to an impulsivity that can go along with these traits. Sarah herself may have some attention problems, but her behavior is also in large part fueled by the loss of her brother and her troubled relationship with her mother.

Her son may have this same genetic vulnerability, but his symptoms are also tied to his mother's intense, driven behavior. She may have difficulty being emotionally present with him, particularly as he reaches the age her brother was when he died. As Sarah's relationship with her own mother is healed, in turn she is able to be more fully emotionally present with her son.

My hope for these fictional characters is that Sarah's process of grieving and healing with her mother will in turn help to lessen her son's symptoms of inattention and distractibility, and so support his healthy development.

Grief and loss are frequently present in the family history of children who have been diagnosed with ADHD. But often, as in this story, these losses go unacknowledged for many years, sometimes for generations. They may take the form of "family secrets."

As I was working on this post, I suddenly recognized the double meaning of the book's title. Left neglect is the name given to the disability that results from Sarah's injury. But Sarah was also left neglected by her mother's grief.  Ironically it takes the first to repair the second. My hope for real families confronting similar issues to this fictional one is that they can find a way to address these unmourned losses and heal relationships without needing a devastating life event to motivate them. 

Labor isnt starting or starts and stops?