February 1, 2012
This 23-year old boy is a local boy, an only child of fiercely supportive and dedicated parents who still care for him at home when many families would have placed him in residential care due to his behavior challenges. I have followed Bobbie since he was 5 years old when he was referred because he was so disruptive in kindergarten.
Bobbie’s background is that of a normal, full-term birth without any complications, who seemed to have a normal infancy until he was 18 months old except he did not develop speech. He smiled, crawled and walked and liked people. However, around 18 months his social behavior fell apart and be became a cranky, irritable child who became very introverted, did not seek relationships, insisted on sameness, and was very difficult to please and hit or bit people when he got upset.
This pattern of apparently normal development followed by deterioration in social interest, and behavior and loss of language fits the pattern of what has been labeled ‘regressive autism’. His behavioral challenges were so severe that he did not go to nursery school and was basically raised at home by his mom whose major mission was to help prevent him from hurting himself or others.
After he started special education kindergarten I visited the school to observe Bobbie, where he was the only child with autism in a class of 12 other children, and found that he required the full attention of the teacher’s assistant to keep him out of trouble. Because his behavior was so difficult the school said he was uneducable and he was placed with a group of older retarded children. His parents and I tried to get individual behavior modification and language training for him, but were unable to do so because of the school’s ‘uneducable’ classification.
I still remember trying to convince the speech language people to try the teaching method called Picture Exchange Communication System (PECS). This wonderful approach teaches children to communicate by using pictures to request things. Because the evidence basis was not yet well developed and because speech language people believed that this kind of support, now established as “augmentative communication” would prevent him from talking, Bobbie got neither behavior nor language training.
Nowadays, this situation would have led to a lawsuit called “due process” against the school and Bobbie would have gotten trained. However, this was 1993, the year that the mother of another little girl named Jennifer Felix brought a class-action lawsuit against the Department of Education (DOE). Although the DOE made token efforts to meet the needs of handicapped children, a 2001 report by the Hawaii State auditor, stated, “the state’s response to the Felix Consent Decree has not achieved the expected results. The system of care focused more on procedural compliance rather than on an effective system to help the children. In addition, the system is largely based on treatments that cannot demonstrate effectiveness.” During the 8 years that the Felix decree was passed and finally implemented more effectively, Bobbie had now grown from a difficult 5 year old to an even more difficult 13 year old.
Because of the lack of behavioral treatments, the only thing that the parents and I could do was develop some sort of neuropsychiatric management program with medication which we did over the course of the next several years.
First we got a neurological evaluation, which found “irregular intermittent slowing over the right cortical hemisphere”, and started Bobbie on an anti-seizure medication. This helped to reduce his irritability somewhat, so I continued trying a variety of medications and finally found a combination of antipsychotics and mood modulators that helped Bobbie stay in better social control. However, he was still sensitive to unexpected change and reacted aggressively to frustration. Also, we had to watch constantly for worrisome medication side effects and try to control his weight gain.
Finally when Bobbie was entering high school, thanks the fact that the Felix Decree was being implemented, he was assigned a behavior analyst and the revamped speech language department began to use the PECS training. The results were dramatic. For the first time in Bobbie’s life, when he wanted something he could pull out one of the pictures he had learned and point to it!! It was a thrilling accomplishment for everyone involved, the frequency of aggression decreased markedly and Bobbie actually came to like being in school! So this got us through high school. The parents again had to fight the Department of Education to keep in school past the age of 18 years. Fortunately, the evidence of so many prior years of no service triumphed, and Bobbie stayed in school until he was 21 years old.
At this point responsibility for Bobbie’s care changed from the Department of Education back to the Departments of Health, and he was placed in what was called a day treatment program. Unfortunately, there was no one in the day treatment program who had ever worked with an autistic youth, so this placement did not last very long. Next, Bobbie was referred to the Division of Vocational Rehabilitation, but they also had no experience with young people like Bobbie, so this went nowhere. Residential placement was recommended by a number of people, but this was refused by the parents, both because they realistically felt that Bobbie would not be treated supportively by others, and because the care of Bobbie had become the major life occupation of the parents, especially the mom.
So the pattern was established that continues to the present. Bobbie lives at home, supported by two shifts of three personal assistants behavior (PAB) workers – morning and afternoon-evening. This is a total of 6 people plus a behavior specialist and a PAB supervisor and a Department of Health administrator. I have no idea of how much this costs the State of Hawaii, but it’s clearly a large sum of money, only partially reimbursed by federal funds.
MORAL: What this case illustrates, besides the disastrous results of the absence of early identification and behavior and language training, is the enormous future costs of care. Bobbie is now only 23 years old, so we can project that he will require state care for the next 50 years, given the fact that most autistic adults have normal life spans. Cost analysis studies of autism by others (Harvard School of Public Health) project that the average lifetime cost of one autistic person is $3.2 million, with the majority of the expenses occurring after school graduation. The math is scary!!
IN SUMMARY, Bobbie’s case history plus that of the earlier young man, Alan, dramatizes why it will be so important to greatly improve our care systems for autistic children and youth as rapidly as possible. Although his social adjustment is still not optimal, Alan does not cost the state a penny, and if/when he gets into a supportive job, he will be paying rather than using state taxes. By contrast, the costs for Bobbie are astronomical and lifelong. This is why we need to respond rapidly to this increase in numbers of autism spectrum conditions. To do otherwise is simply a violation of the Americans with Disabilities Act that will have huge future costs and overburden all our care systems.