Adopting for Love

Ralph James Savarese's op-ed in yesterday's Los Angeles Times is so inspiring for its depiction of a parent's unyielding love for a child.

Savarese is the author of "Reasonable People: A Memoir of Autism and Adoption," coming out today from Other Press. The book tells the story of their son's rebirth after eight years in their care. The six-year-old they adopted had been diagnosed as autistic, abandoned by his mother and abused in foster care.

They had bonded with him when Savarese's wife, an autism expert, had attempted to help the mother. Their love for him was already too strong to let him slip away into a life of trauma.

He writes,

"Despite the stigma attached to "special-needs children," people do adopt these kids. And yet, many more Americans spend gobs of money on fertility treatments or travel to foreign countries to find their perfect little bundles. I'm haunted by something my son wrote after we taught him how to read and type on a computer: "I want you to be proud of me. I dream of that because in foster care I had no one." How many kids lie in bed at night and think something similar?"

His editorial is full of righteous anger at the callous way society looked at his son, and it's full of steady love. This should be a terrific feel-good book for all parents and a must-read for anyone who wants to have a child, biological or adopted, disabled or not.


The Next Autism Crisis

Kids with autism spectrum disorder need an immense amount of therapy, and local and national organizations are grappling with how to provide every family with resources and support. At the same time, more families are competing for those limited resources.

The Centers for Disease Control recently upped its estimate of the prevalence of autism spectrum disorders; one in 150 American children will be diagnosed with ASD.

What happens when these kids grow up?

Cathy Pratt, chair of the Autism Society of America, warned a group of researchers, clinicians and parents that autism lasts a lifetime. Speaking at the International Meeting for Autism Research in Seattle today, she said that 65 percent of the people on the spectrum who are out of school are unemployed. The average income of this group is just $6500 a year.

"We have individuals on the spectrum who are living in poverty, who are homeless, who do not have options," she said.

Parents worry about what will happen to their children, who may survive them by 40 or 50 years. There are few transitional services and little employment opportunities even for high-functioning people.

The Combating Autism Act is good legislation, Pratt said, but it wasn't funded. "We don't have the money," she said. "Every state is asking, 'How are we going to fund the need?'"

Pratt called autism an economic and social crisis. Every year, that crisis worsens. While screening is getting better, IMFAR 2007 makes it clear that there's no cure in sight.

For more information and help with ASD, visit www.AutismSociety.org.


The Elephant of Emotion

If you're looking for an article on the emotions of elephants, see this excellent story: An Elephant Crackup?

How can we understand our feelings when we can't really describe them? Neuroscientists, psychologists, anthropologists don't mean the same thing when they talk about fear or love. When we talk to each other, we borrow from these sciences, and even more from movies, books and music, but each of us has our own inchoate definition of each emotion. We're all of us -- academic and lay person -- blindly describing an elephant.

I'm in Los Angeles for Seven Dimensions of Emotion, a conference put on by the Foundation for Psychocultural Research, and there's a fascinating mix of scientists and academics talking often at cross-purposes about fear, disgust, empathy, grief, anger, love and hope.

I'm here to hear Sue Carter, Helen Fisher and Jaak Panksepp talk about love, and all of them have taken the neuroscience approach to understanding emotion. Their work has been revelatory to me not only because, combining it with Allan Schore's studies of how the brain develops after birth, it provides a framework makes sense of my own experience. Most important, Schore shows how this scientific understanding can be used to heal.

Panksepp's talk was the most exciting so far. He's working to prove that animals and humans share the same emotions. He said, "The nature of affect is the most important scientific question in emotion research." He said that in the 20th century, animals "lost their feelings to behavioral neuroscience." The behaviorists, in an attempt to be ultra-objective, reduce everything to stimulus and response; Panksepp called this an intellectual tragedy.

He studies play behavior in animals as one of the most universal and primary affects (or emotions). He's identified the sound of rats laughing!

Panksepp says his work has potential for helping kids with autistic spectrum disorder or attention deficit or hyperactivity disorder (ADHD). In dogs, blocking the activity of opioids, the brain's natural morphine, makes them more interested in social contact, as evidenced by increased tail-wagging and licking the faces of humans. He says about 40 percent of autistic kids also respond to opioids-blocking by increased social behavior -- but only when they're in a rich social environment.

He thinks that the vast majority of kids diagnosed with ADHD are really play-deprived. "ADHD is largely a cultural disease," he said.

Play needs to be free and self-directed, Panksepp said, and it needs to involve plenty of rough-and-tumble activity. Such play is about pushing limits, and, inevitably, there comes a moment of complaint, when one kid becomes uncomfortable with what's happening. Such moments are opportunities for dramatic social learning, he says, because it forces kids to learn to negotiate on the spot.

"Kids aren't given enough free play," Panksepp said, "and I think many of them don't know how to renegotiate that moment."

Now, think of the modern play date, where kids' activities are closely monitored by moms or nannies. Each monitor is hypervigilant that their kid neither gives cause for complaint nor becomes a target. They're so quick to jump in and deliver controlling commands. "Seth, give the truck back." The children are under a microscope and may feel that they're more of the adults' surrogates than self-directed individuals free to follow their joy.

All this has nothing to do with oxytocin nor with my book. Which brings me back to the elephant of emotion. Panksepp told an illustrative anecdote. Speaking about grief, he said that he himself had experienced great grief, that is very strong when he's alone. When he's with another person, no matter what they talk about, the grief dissipates somewhat. He attributed the lessening of his grief to his shift from activity in the limbic system, the subsystem of the brain that processes emotion, to the cortex, the part of the brain that handles higher reasoning.

But what about the oxytocin response? Social contact, especially but not only with those we trust, causes the brain to release oxytocin, which calms us and makes us feel more at peace. Grief could be defined as pain caused by loss of social contact; social contact can help ease that grief.

Opioids but not oxytocin are part of Panksepp's emotional elephant; both opioids and oxytocin are involved in social bonding, especially that state that we somewhat randomly call love.

See also Prairie Voles and Me (and You),


The Time is Right for "Holding Time"

It's time for another look at an 18-year-old book on repairing the attachment between mother and child.

When Martha G. Welch wrote Holding Time in 1989, the idea of attachment -- the bond between mother and baby -- was something intuitively understood, but not scientifically proven. Since then, studies of rodents, mammals and humans using functional MRI have begun to show how early nurturing shapes the brain, and how the lack of it harms brain development.

Welch treats attachment disorder using holding therapy at her treatment centers in New York City, Chautauqua and Greenwich, Conn. She's a psychiatrist at Columbia University's Department of Neuroscience, and she's studying both the role of oxytocin and secretin in autism and possible therapeutics using these two peptides. (Secretin is a gastric hormone that prompts the pancreas, stomach and liver to release digestive enzymes.)

Welch's method aims to repair the bond between mother and child. A baby's nervous system and brain aren't fully formed at birth, and development takes place in response to interactions with her mother.

Holding, nursing and nurturing develop the oxytocin response and they seem to determine the amount and sensitivity of oxytocin receptors in the brain, especially the parts of the brain that deal with social interaction. Oxytocin also is critical in moderating the fight-or-flight response.

If a baby experiences fear or abuse, she develops a strong and oversensitive stress response. If she is neglected, or doesn't get enough holding and attention, her brain won't learn to release oxytocin when she does have physical contact -- and contact, even soft nurturing, may seem intense and scary to her deprived body.

The diagnosis of reactive attachment disorder is a catchall similar to autism spectrum disorder. But, no matter the symptoms, its roots are trauma, neglect and the lack of a secure bond with a mother. (I'm using mother here to describe a role; anyone who is the primary caregiver and nurturer of a baby is acting as her mother.)

In Welch's method, the mother takes the child into her lap and attempts to make and keep eye contact. Welch's holding therapy typically goes through three stages: confrontation, rejection and reconciliation. In the first stage, holding often means restraining the child on her lap. In the second stage, the child may reject not only being held but also his mother, telling her he hates her, she smells, she's bad. The mother may express her own feelings, saying, "It makes me feel bad that you won't look at me," for example.

Finally, all the negative feelings having been expressed, the child and mother feel peaceful and can connect lovingly. According to Welch, this process is a more expressive version of the gentle cycling between arousal and calm that ideally happens when a mother interacts with her newborn. Being restrained on Mommy's lap gets the child's adrenaline going; that leads to the expression of rage, fear and sorrow, leading to release of those feelings and a new kind of arousal, that of pleasure in being close to Mommy.

Welch writes, "As the struggle continues, the child usually experiences a whole range of emotions but in the safety of his mother's arms. This time the state of arousal is associated with being held lovingly, resolutely, and closely."

It's important for the mother to also be able to release some of her frustration and anger, Welch believes. She writes, "Holding time allows both of you to discharge your pent-up aggression in a safe way."

Welch's method has much in common with Theraplay: The child being controlled and kept in therapist's or mother's lap; the therapist or mother taking charge of the interaction (designed to let the child know there is an adult in control); the goal of mutual gazing and intimacy; and the theory of consciously recreating the experiences that lead to healthy brain development in the infant.

While Theraplay uses activities to distract the child from her distress and engage her less directly with therapist or parent, the holding time method asks mother and child to stay with their feelings and work through them.

The book and Welch's treatment have come in for criticism because of the enforced holding, especially in light of the horrible cases where RAD kids have died during different types of holding therapy, when they were covered in blankets of grownups laid on top of them.

But her work makes sense in light of attachment theory. Children who aren't well attached to their mothers may be either anxious -- desperately craving attention -- or avoidant. Avoidant kids have learned that being close to Mommy means being hurt -- either being rejected or being yelled at. So, they've decided the safest course is to cut themselves off from anyone else.

I grew up avoidant. I still remember the moment when I consciously decided, "I'm not going to let them hurt me anymore." I still craved love and connection, but when it was offered to me, I froze. I desperately needed someone to break through the ice, take hold of me and love me. I kept waiting for someone to do that, but of course, since I couldn't reach out or ask for it, no one ever did.

From my own experience, I think holding therapy may be just what an avoidant kid needs.
Holding Time explains how to use this method; however, I'm not so sure parents should try it without training. The key to holding therapy is that the mother accept the child's rage, letting him know she loves him no matter what. This is easier said than done.

In the examples in the book, the mothers always respond by expressing their needs or feelings in non-judgmental ways. "I know you are angry at me, but I still love you." "I feel upset when you scream and fight. I am going to hold you until we both feel better."

This kind of response is tough for any of us to do; and, to be brutally honest, if this kind of interaction comes naturally to a mom, her kid is not likely to be in need of holding time. (In the book, Welch doesn't discuss the special needs of adopted children, who may have been traumatized or deprived before being adopted; this was before adoption became as widespread as it is today.)

A parent who hasn't been trained in how to respond could end up damaging the child more. As one Amazon.com reviewer, a self-described survivor of forced hugging, put it, "I found it punitive and abhorred it. Who wants to be yelled at and told to look at somebody while being subdued by force?! Who wants to be the recipient of false accusations with no recourse or defense?!"

If the mother hasn't learned how to give love, if she uses holding time to express herself in ways that frighten or hurt her kid, it will damage the bond even worse, by denying the child the one defense he has: withdrawal.

But if mother and child learn to do this with the support and guidance of a therapist, it could be that revelation that Welch promises: "a closer, more satisfying and truly wonderful relationship with your child."

Theraplay to Shape a Child's Brain

Interview: Dafna Lender, Theraplay Institute


Phase 2 Trial of Oxytocin for Autism within 12 Mos.

Nastech, the biotech company that has proprietary technology for intranasal drug delivery,  plans to launch phase 2 clinical trials of  a synthetic oxytocin treatment for autism within 12 months.

The plan is to use carbetocin, a synthetic used to control bleeding after  labor and delivery, to control the core  symptoms  of autism, such as repetitive behavior and lack of sociability.

The company uses what it calls "tight junction biology" to squeeze molecules through cells in order to deliver larger molecules, such as the peptide oxytocin, and deliver them to the central nervous system via the epithelial membranes inside the nose.

In the company's earnings call today, CEO Steven Quay said Nastech has entered into an exclusive license of the intellectual property of Eric Hollander of the Seaver and New York Autism Center of Excellence. Hollander recently reported that he and colleague Jennifer Bartz had reduced some of the symptoms in adults with autism spectrum disorder with intravenous oxytocin.

Nastech's inhalant technology removes the needle barrier in oxytocin therapy.

Quay said, "We think current the scientific evidence provides useful insights: Autistic children have lower levels of oxytocin than normal children. In theory, we may be able to overcome this deficit through a nasal spray that uses our tight junction technology."

Nastech will work with Hollander on clinical trials. The plan is to conduct studies on dosage this year, and then, in 12 months, move into stage 2 trials with adults with ASD. Hollander will conduct the studies.

I recently spoke to Sue Carter of the University of Illinois' Brain Body Center. She is one of the foremost oxytocin researchers, and she's written extensively about the possible role of oxytocin and vasopressin in ASD.

She thinks we're moving too fast with oxytocin therapies. She pointed out several issues with dosing humans with oxytocin. First, it's not clear how much relation there is between serum levels of oxytocin and levels in the central nervous system. Second, it's possible that the problem with ASD is related to vasopressin rather than oxytocin. Finally, she said that with any hormone, there is an optimal level and a balance with other chemicals in the body. We don't know whether increasing the level of oxytocin will throw other things out of balance, or cause a shut-down in the body's natural production.

But, as Quay said during the call, so far there is no drug approved to treat the core symptoms of autism -- and one that worked could be a blockbuster. The CDC recently announced that the rate of autism in children was higher than its previous estimate: One in 150 kids will be diagnosed as on the spectrum.

For more on Drs. Hollander and Bartz's work, see "Oxytocin Therapy for Autism Gets Closer." See also "Love in a Whiff" and "Another Oxytocin Patent."


Are We an Autistic Society?

Donna Williams, a self-described "mad, autistic artist" -- as well as a teacher, author and consultant -- wrote an article for American Chronicle that boldly questions whether our technology-oriented, individualistic society is creating more infants with reactive attachment disorder and autism.

She writes,

Is possible that we’re living in an age where some pregnant mothers being so busy with cerebral, passive interactions with technology and its related increase in time use that they don’t have the range of movements, emotional experience, that it’d be conceivable some don’t develop the same full prenatal bonding with their child that may have been more common before the 80s and 90s?

I'd answer yes to that. But I don't think that technology, and specifically our reliance on computers, is completely to blame. I think that the medicalization of childbirth, cutting mothers off from the biggest oxytocin rush a human will ever get and from the opportunity to bond immediately and bodily with their newborn babies, may be the biggest factor.

Add to that the necessity for most mothers to work, being away from their children for most of the day, and our reliance on television as a surrogate for human interaction, and you have a recipe for isolation and thwarted empathy.

Williams asks,

what if society is improving upon detachment, passivity, being more cerebral than emotional and physical, and progressively then mistrusting and fearing unexercised real interaction with ’strangers out there’?

We are all, already, becoming more ‘autistic’ and the ‘geek syndrome’ generally associated with Asperger’s Syndrome is so widespread that mild cases are not even worth diagnosing lest we end up losing sight of any measuring stick of ‘normality’ (which is all relative anyway).

Williams raises the spectre of the "refrigerator mother," the idea in the 1940s that some women were intrinsically not motherly enough, thereby causing their kids' autism. The pendulum has swung away from blaming the parents -- which is a very good thing. But it may have swung too far.

Mothering matters more than anything else in our lives. Without mother love when we're babies, our brains don't develop the oxytocin response -- as well as many other systems and responses we need to successfully navigate the world.

Williams writes,

If so, if today’s generation benefit from, enjoy or are addicted to those causes, and if voracious consumer economy feeds, encourages and entrenches those addictions through increasingly consumed media, will we ever wake up? Will we be ‘allowed’ to? And in a dog-eat dog society of stone throwing tabloid press, witch hunts and bitching public forums, can we ever calmly look at even hints of the refrigerator mother yet empathically envision ourselves in their shoes?



Another Oxytocin Patent

The race is on to set patent claims on oxytocin therapies.

The latest is a patent application filed by Steven Quay of Nastech on using oxytocin to treat the symptoms of autism spectrum disorder, as well as similar maladies.

According to the application, oxytocin is effective in reducing social withdrawal, eye contact avoidance, repetitive  behaviors, anxiety, attention deficit, hyperactivity, depression, loss of  speech, verbal communication difficulties, aversion to touch, visual difficulties, comprehension difficulties, and sound and light  sensitivity.

Nastech, which assigned the patent to Atossa Healthcare, a related company, has another application in the works for a long-acting oxytocin nasal spray. (See the "Oxytocin Therapies" category for more.)


Interview: Dafna Lender, Theraplay Institute

Dafna Lender is training director and clinical coordinator for the Theraplay Institute, an organization that trains teachers, social workers and psychotherapists. Theraplay provides a structure for activities that help heal kids' attachment problems.

HUG: First, tell me how you got involved with Theraplay.

Lender: My involvement began when I was working in a foster care agency that had a residential component. Most kids had been adopted previously or been in a nuclear family, and their history of abuse, neglect, separation, loss and trauma had caused them to disrupt the place they had been in.

We found these kids were still unprepared after two years with us to go into a family. We were looking for some sort of method or therapy model that would help. I was sold from the beginning, and it was transformative for me, too. I felt I had hit on what I needed for the clients I was working with.

HUG: I've been hearing more in the news about reactive attachment disorder, and about failed adoptions. Is this problem increasing, or is there simply more awareness?

Lender: We have had a huge influx of parents who call us with these problems in the last ten or fifteen years, as societal problems get worse, and funding for social services diminishes -- and foreign adoptions become more common. There also is increased awareness of attachment issues. I definitely think it's a phenomenon that's increasing in size with not enough resources.

HUG: I've been distressed by some parents' accounts of adoptions that didn't work out. The parents seem not to understand how deeply messed up these kids are.

Lender: Parents do try very hard, and the lack of resources and support from the child welfare system or adopting agency can leave adoptive parents really depressed, resentful or despairing. They may feel like they're going crazy. An attachment therapist would help the parent put the child's behavior's into context so that the parent does not feel that they have gone crazy or are bad people. The attempt in the attachment community is to say it's not all the child's fault, but not the parents' fault either.

The child is projecting all this non-conscious trauma onto the parent. Most trauma that happens to kids is out of their awareness, because either it happened before they were verbal and therefore have no recollection of it, or they're defended against it, because it was such a horrible experience.

The only way for a parent or therapist to interact or give healing to these kids is to not to take it personally. That's a very difficult feat and requires a great deal of work on the parents' part and a great deal of support from a therapist. If parents sound callous, it could be because they have not received this help.

HUG: Do you buy the diagnosis of reactive attachment disorder, or RAD? There's no mention of this disorder on the Theraplay website.

Lender: There are a lot of problems with the diagnosis. There's a lot of overlap with other diagnoses, and no criteria that are discreet from others. Other people have talked clinically about attachment issues in terms of both severity and features that are more on a continuum, and that is more helpful clinically.

HUG: You work with both mother and father, if available. What about the idea that mother is primary regulator of brain and affect development in the first years?

Lender: That's definitely the case, but we don't work with kids during that period of time. Parents typically bring kids in toward the end of their second year, or before they start preschool. After the first year, the father is important typically -- although this is a stereotype -- in providing high levels of positive affect. This is important in being able to regulate high arousal, enjoyment, joy, interest and excitement. A child needs that just as much, so he doesn’t go berserk if he's waiting in line for the playground, for example. It also wards against depression and creates a great bond. So we love to focus on both parents.

HUG: There's an emphasis in Theraplay on certain special moments of connection that lead to change. Can you talk a little bit about this?

Lender: Those are called "now moments" or "moments of meeting" in the psychotherapy literature. It has to do with when two people are spontaneously sharing an idea, and they know that. It's an expansive moment, when we shared something that was meaningful. For example, when we're playing bubbles, and it pops right on the tip of the child's nose. There's a moment where he's startled, and then thinks it's funny, and I laugh too, and it's amplified. It's not something planned by me, it has to just happen.

HUG: Theraplay was developed for the Head Start program. Is there a change in the client base in the past few years?

Lender: In the last few years, there's been an increase in the severity of the abuse and neglect, the number of placements, and the rising awareness of the effects of drugs and alcohol in utero. On a parallel stream, there's also more and more focus on autism and early diagnosis, and we're known for that, as well.

Theraplay is a registered service mark of The Theraplay Institute, 3330 Old Glenview Rd, Wilmette, IL, www.theraplay.org


Special Needs for Friendship

This story from Be the Best That You Can Be shows how much offering friendship and emotional support benefits the giver as well as the recipient.

Friendship Circle pairs teen-aged volunteers with kids who have special needs. They spend an hour or two a week hanging out. According to the story,

As one teen volunteer phrases it, "When I am with these children I feel calm and soothed. I know there are no judgments being passed. I know they don't care what I look like...together we live in the moment, enjoying each second of each other's company".

That calm, soothed feeling comes from the release of oxytocin. When we engage in comforting, nurturing behavior, our brains release oxytocin. It's the same mechanism that releases oxytocin to a mother's body while she breastfeeds, but it's something anyone can enjoy.

According to John, Friendship Circle is a project of "the Chabad-Lubavitc, "a branch of Hasidic Judaism with a strong emphasis on emotional connection, community interaction, and the integration of good acts with spiritual observance."

This shows the way that spirituality can connect with the body to provide real-world experiences of joy.


Oxytocin Therapy for Autism Gets Closer

This press release from the American College of Neuropsychopharmacology's Annual Meeting is, to my knowledge, the first official, public announcement if something that oxytocin researchers have been saying among themselves for a long time: Oxytocin may prove to be a very helpful therapy for symptoms of autism spectrum disorder.

At the conference, Eric Hollander and Jennifer Bartz of the Seaver and New York Autism Center of Excellence presented the results of their studies administering oxytocin to adults with autism spectrum disorder. They administered litocin, a synthetic form of oxytocin, over a four-hour period and watched for signs of repetitive behavior, one of the symptoms of the disorder.

According to the press release,

"Studies with animals have found that oxytocin plays a role in a variety of behaviors, including parent-child and adult-to-adult pair bonding, social memory, social cognition, anxiety reduction and repetitive behaviors," explained Dr. Bartz. "However," adds Dr. Hollander, "we have only recently considered that administration of oxytocin can have behavioral effects. Autism is a particularly ripe neuropsychiatric disorder for studying this approach because it presents with the types of symptoms that have been found to be associated with the oxytocin system."

Study participants showed a significant decrease in repetitive behavior during the four hours. They also did better at picking up on the emotional tone of recorded speech. People receiving pitocin were compared to others receiving only distilled water; two weeks later, the groups were switched.

Interestingly, those who received oxytocin the first week retained their improvement in assigning emotional meaning to the recorded speech even when they were tested again two weeks later after receiving the placebo. This is important because the effects of administered oxytocin are considered not to last more than a few minutes.

Now, Hollander and Bartz are doing a new study administering oxytocin via a nasal spray over a six-week period.