by William Van Ornum, Ph.D. on
By Dr. William Van Ornum
When I was a psychology graduate student at Loyola University of Chicago, my introduction to autism involved observing and learning about a nine-year-old girl who constantly banged her head against hard objects, to the point of bleeding and perhaps even concussion. The saddest part was seeing that nothing seemed to work. The parents had to place her in a program, an excellent one. Even caring staff and medical professionals couldn’t discover how to stop the headbanging. Medicines didn’t work. Behavior therapy, looking for things in the environment that might have contributed to this self-abuse, was ineffective. When staff had to intervene physically in as appropriate and gentle manner as possible, the headbanging became even more severe. Yet how could anyone allow her to keep hitting her head without any intervention, to the point of her hair being matted with blood? (I worked on this placement only for three months and don’t know how things turned out.)
Autism is heartbreaking. While working in a day-treatment program, I saw dedicated and gifted staff that provided a loving and caring environment for young children with mild-to-severe autism. The energy of youth, including my own, brought us together as a working team and we celebrated small successes, such as a child making more eye contact or sitting for a longer period of time.
Skilled helpers can make a difference.
Trying never to give advice, I listened to parents. I learned about the heartbreak of devoting one’s entire life to a child and not seeing fruits of this devotion. I learned that any small action that makes a small difference in the child’s life is precious. A little bit of hope can go a long way. Yet I also learned that false hope can be as destructive as no hope.
We need a balance of real hope and acknowledgment of limitations that might never go away.
Many helpers, family members, or neighbors and friends often don’t realize the incredible level of emotional bonding that occurs between a child who has autism and his or her parents. When a parent is so involved 24/7 with a child that is so needy, it is natural that this relationship will fill one’s entire life.
It is difficult if not seemingly impossible to find substitute helpers one can really trust.
Be careful when offering “helpful” advice such as, “You need to get out for a night.”
When doing psychological testing with young children displaying autism, I learned to avoid any jargon and to talk simply of strengths and weaknesses. I learned that psychologists, when testing, need to see the child and family more than once, and also in the classroom and at home. In fact, it is now the law that preschool evaluations occur in the place where the child is most comfortable. Getting help early is a very effective intervention.
Encourage early assessment and intervention, and always go over the report carefully with the parents.
Not being a physician, geneticist, vitamin specialist, virologist, or similar, I know that I am not qualified to opine about vitamins, vaccinations, or other specialized treatments. I also cannot believe it when professionals or paraprofessionals offer “immediate good advice,” for example “a residential placement would be such a good thing for your child.” Except in rare cases, this is a decision parents must make, and yes, parents usually are aware of residential programs, but must come to this decision in their own way and on their own time line.
Do not preach. Listen.
Behavior therapy, when done by specialists, can be highly effective. In many instances, either at home or in school, behavior therapies with “reinforcement” do not work because the reinforcement is given in large time intervals such as fifteen minutes or thirty minutes rather than inn tiny intervals. Lovaas is one of the best authorities on autism; Applied Behavior Analysis is a proven treatment for changing certain behaviors. Two books by Foxx and Azrin (Increasing the Behaviors of Severely Retarded an Autistic Children; Decreasing the Behaviors of Severely Retarded and Autistic People) are classics and reading them can help any professional or parent.
Know what truly works. I hope these thoughts can be helpful.