This week, the Journal of the American Medical Association published a study from the US and UK that documented a cost of (US$)1.4 million over a lifetime, if there was no intellectual disability. That’s seventeen thousand extra per child per year - 1/2 of the US median income. Add another 1 million dollars if mental problems persisted (46% in one study).’
Of course, I’m preaching to the choir here. Families are well aware of the financial burdens. The problem seems to be that the medical profession is clueless. Parents are told to get therapies that are very expensive, and even if they are ‘covered’ by insurance, the co-pays can be prohibitive. And, if the child fails to meet intellectual milestones? More therapy.
In 1987, Dr. Louvaas reported, “Follow-up data from an intensive, long-term experimental treatment group (n = 19) showed that 47% achieved normal intellectual and educational functioning, with normal-range IQ scores and successful first grade performance in public schools. Another 40% were mildly retarded and assigned to special classes for the language delayed, and only 10% were profoundly retarded and assigned to classes for the autistic/retarded. In contrast, only 2% of the control-group children (n = 40) achieved normal educational and intellectual functioning; 45% were mildly retarded and placed in language-delayed classes, and 53% were severely retarded and placed in autistic/retarded classes.“
Regardless of the exact diagnosis, the reasons for increasing numbers, and questions about ‘recovery’, the lifetime costs of caring for more than half of the patients with ASD are considerable.
The commentary in that aforementioned issue of JAMA was entitled Autism – Moving Toward an Innovation and Investment Mindset. The Drexel University professors wrote, “…We wish to reflect further on the conceptual and measurement advances needed to reach a point where we can meaningfully link investments in services to life course outcomes…”
This is an indication that conventional medicine will be forced into evaluating the epidemic from the financial side, even as science fails to provide data supporting flawed theories. “… This accomplishment is especially remarkable given the challenge presented by a profound lack of infrastructure for routinely monitoring costs and outcomes in people with autism spectrum disorders.”
An important finding in the study was that the second highest cost of autism was lost productivity to family members who must care for an affected patient. That means that earlier diagnosis, with prevention of long-term disability, and the amelioration of intellectual disabilities, will have the greatest effect on decreasing costs.
I am not qualified to offer financial planning advice. There are experts on that side of the equation. Given the present state of our understanding about the cause(s) and useful autism treatment(s), such assistance in assuring your child’s future may prove valuable.
Protocols provided by MAPS physicians are certain to impact these tremendous expenses. At The Child Development Center, we have been very successful at achieving neuro-typical educational status by 1st to 3rd grade in the majority of infants and toddlers. That is a tall statement to make, and it is not offered lightly. Biomedical protocols involve a great deal of work by the families and counseling by the staff. Traditional therapies, such as behavioral, physical, occupational, and speech are a necessary accompaniment to assure improvement.
As noted in the editorial, “We need to recognize innovations that are already occurring in community settings and establish ways to learn from them about what works for whom. Accumulating practice-based evidence will require mutually beneficial partnerships between researchers and community health care… This approach would foster active learning from experience.“
As in other medical conditions, such as hypertension-arteriosclerosis-heart disease or the HIV epidemic, a sizable cost savings may be the initial driving force to accurate diagnosis and effective treatment. If that is the impetus resulting in better medical care for autism, that’s OK, as well.