Do you remember the discussion of the ethical dilemma of Huntington’s disease you probably participated in during medical school? The question was whether you would want to know that you were at risk for a chronic debilitating condition that would develop at some later age if there was nothing that could be done about it. In that discussion, you also may have heard about individuals who, after hearing about their risk status, become depressed or suicidal, depending on the story line.
Some pediatricians seem to have taken this example too far in arguing that there is no point in screening for issues of development, autism, maternal depression, or child mental health because “there are no services” available to treat them.
Despair is understandable. Physicians’ lack of knowledge about resources in the community is often a sore point among local agencies, parents, and even pediatricians themselves. In spite of United Way, state 3-1-1 programs ,and the occasionally available social worker, the resources with which we are familiar sometimes come from hard-working parents telling us about a program they found on their own. It also seems that, just when we hit upon a valuable resource, it runs out of funding, changes eligibility requirements, or loses key staff. Worse yet, we may rely on resources we know about because of our own children’s problems, activities, or friends. While the Internet is an increasingly valuable method of finding resources, there is no filter of the evidence-basis of the care provided, and the process of searching, vetting, and informing your patients is extremely time consuming, and often the patient is not eligible or has a long waiting period after all that.
There are important reasons not to succumb to throwing up one’s hands about service availability. And more important reasons to still screen even if you do not know where to refer.
Screening using validated tools is recommended by the American Academy of Pediatrics because parent concern and even clinical observation are not adequately sensitive to detect significant problems of development and mental health, even when done by experienced physicians who know families well. The process of screening sends an important message to the parents – that you care about the child’s progress and are using proven methods to ensure that it is going well and consider it part of complete medical care.
And families often already think that their child may have a problem, even when they don’t bring it up. Perhaps deep down they are afraid that somehow raising the question of autism will make it true. They may be in denial, are feeling guilty, or are under pressure from their spouse, relatives, or friends not to worry, that “he will grow out” of it, that better discipline will fix the problem, etc. They may even care so much about your positive regard that they do not want to seem overly anxious, obsessive, or be regarded as a failure for having a “defective” child. They, like you, also may be in despair about finding effective help.
But there can be serious consequences to not screening, even when you are not sure what you will do with the results. The family may push the child with delays or mental health problems beyond his abilities, and even become negative and punitive in trying to make him succeed, in the process promoting unnecessary behavior problems, discouragement, and even defiance in the child. Failure to detect also means failure to list the child on a registry for follow-up to determine progress or refer when resources become available. Some problems of development or mental health that are detected by screening may have medical causes that you can treat, even though counseling or therapy interventions are not available. Examples include hearing or vision deficits causing delays or anemia, sleep apnea, or hypothyroidism or maternal depression or attention-deficit/hyperactivity disorder (ADHD). For issues with a genetic basis, siblings may be born with same problem during the period of delay in making a diagnosis, a prime example being Fragile X. In untold cases, the family loses trust in you and in the medical system for not acknowledging a problem.
In many cases, your acknowledgment, explanation, sympathy, and advice can help enormously. Families can cope better, garner support from family or friends, deal with the child’s behavior better, and find steps to take to help their child in their own ways, even without formal services, once told that their child has a specific problem.
On a system level, it is important to realize that how services are established and maintained is far less rational than might be imagined. State programs, schools, hospitals, and insurers all have legal requirements to provide services within a certain time frame once referred. Even if the services are not there to help a your child or family right now, the referral itself adds to the data used to determine if services are adequate and to plan for additional service types or capacity. The Autism Waiver is one such example where waits are years long, but getting on the list is crucial to the future of the program.