Tuesday, September 9, 2014

A Child's Stare

Children have many endearing qualities, not the least of which is their incredible curiosity and their wish to mimic us in whatever we're doing. We have the pleasure of not only encouraging them, but of basking in their littlest accomplishment. But this is not the case with parents or guardians who have children with Autistic Spectrum Disorder in their care.

These children stare without curiosity or the tiniest glimmer of interest in the object of their intense staring. It is a disheartening sight to see and an incredible burden for everyone involved, not just the parents or guardians, but those who so desperately want to help with innovative therapies and research approaches to this perplexing question. It's simply put: Why does this happen? If we can only find out why, then we can unlock potential for remediation before it's too late.

The quest for diagnosing any type of autism has always had one cardinal rule, which probably did more harm than good, and it was not to diagnose until age three. Now, the prevailing wisdom seems to indicate that waiting that long is too long. Interventions, whatever they may be, have to be initiated earlier in infancy and we must have some robust measurement devices to track progress.

The truly amazing thing to me is that there was a book written in 1976 (Son Rise) by two determined and dedicated parents (Barry and Samahria Kaufman) who worked out and actually began writing the script that would save their son. The professionals had advised them that they would have to wait until their son was three to be diagnosed and then, of course, it would be too late to do much. This was totally unacceptable to them and the dynamic duo decided that wouldn't happen. They read, tried stimulation methods worked tirelessly with their son and, in time, the professionals came to them to observe and learn.

Now there is a program the couple helped to develop for children who may have exhibited some of the early symptoms of autism and new research out today amplifies the importance of these types of early interventions. What might be the problem and how does the disorder develop?

The theories of autism development are multiple including early in utero exposure to flu virus and the latest theory is that these children, like all of us, have an overabundance of brain connections, known as synapses, at birth. The infant brain appears to come with excess wiring that may be needed or not. It's like having lots of spare parts.

During the normal developmental process from infant to toddler, however, the brain's activity prunes some connections and reinforces others. The process of reinforcement (aka learning) may be what causes the other links to be pruned off. The result of this extremely delicate brain dance is a brain that recognizes normal stimulation, develops interest, curiosity and connection to others.

How to best ameliorate the syndrome/disorder early before the damage takes hold and resists efforts to undo it is the prime question. This question now has two intriguing approaches and one may not be particularly appealing right now. The first technique is to begin helping the children via the parents in a program called "Infant Start." The second is to use medications to advance the pruning process. It would appear that approach is not going to be eagerly welcomed by anyone.

The research findings recently are based on a small pilot study of seven children that is primarily a 12-week training program for parents and subsequent follow-up with professionals serving as monitors. The focus of the program is to draw the infant's attention to the parent's face and voice, to direct the child to the parent's vocalization of what the child is verbalizing and mimic the child's actions, engage the child through the use of toys, and other activities that would enhance this mutual interaction between child and parent. The researchers were more than pleased with their results. I suspect they were overwhelmed with the changes seen in some of the children.

After six months of treatment, the researchers indicate that six of the seven children were exhibiting normal activity and engagement between the age of 2-3. Children as young as six to seven months would be the group that should be involved in programs of this type according to them. It's a matter of the earlier, the better.  I would see it as early intervention for brain template production. Sounds impressive and makes the point.

Considering the results, it is promising, but the researchers do not believe it should be the basis for wide changes in treatment since there were so few children involved. But even this small number, I'm sure, provided much-needed hope to the parents and guardians of children with Autism Spectrum Disorder.  I can only wonder what the Kaufmans are thinking at this moment.