This past weekend my wife and I participated in a parents’ retreat at our son’s high school. His school’s focus is on learning challenges for kids with significant social challenges. There are lots of kids with AD/HD and high functioning autism spectrum disorders at this school. The retreat was like an extended CHADD support group meeting-–focused on a half dozen important areas with experts and a lot of sharing and some tears.
One of the things all the families and their children had in common was that we were victims of a public educational “fail-first” approach. We each came to this school because the public school either completely failed our children or the school’s interventions were too little, too late. At least we found a learning environment where our kids are happy, academically successful, and learning good social skills. But it is such a societal shame that the educational system is designed to allow children to fail before anything can be done to help them.
CHADD is fighting against another fail-first policy dictated by many health plans. There are health-plan policies that will not pay for medications that effectively treat an individual’s AD/HD until that person has tried and failed to see any results on the plan’s medication of choice. We know from the Surgeon General's Report on Mental Health, that stimulant medications are highly effective for 75 percent to 90 percent of children. But the reverse is that the medication either has no effect or has significant side effects in roughly 10 percent to 25 percent of children.
Why do we allow health plans to institutionalize failure with 10 percent to 25 percent of persons with AD/HD? Think about it – we have designed a system that, in order to save a few dollars, puts persons with special health care needs at risk of failure before allowing a prescribing physician and the individuals or their family to use an FDA-approved medication of their choice.
FDA Announces Medication Safety Warning for AD/HD Medications
On February 21, the FDA announced that all manufacturers of medications to treat AD/HD must develop “Patient Medication Guides” to alert patients and their families to possible cardiovascular risks and risks of adverse psychiatric symptoms associated with the medicines.
What a quandary for adults with AD/HD and their families. Each family must weigh the benefits and risks in making decisions about medications. For most individuals with a correctly diagnosed condition of AD/HD, we know that medications, in combination with “multimodal treatment,” help reduce the symptoms of AD/HD and enhance functioning in everyday life. We also know the negative consequences of untreated AD/HD. But we have to recognize that for some individuals the side-effects may be negative.
We all must make these decisions based on our comfort level and in consultation with prescribing medical professionals. It is the obligation of each person with AD/HD, their family members, and prescribing professionals to closely monitor and report any changes in their wellbeing to reinforce the benefits and guard against the negatives. My 16-year-old son is fortunate in that he has been on AD/HD medications since he was 7 years old and has no health problems. But everyone has to make his or her own decision and be closely attuned to negative consequences.
One disturbing side-effect of the FDA announcement is that the “anti-psychiatry” crowd (those who deny the existence of childhood and other mental disorders) and the anti-pharmaceutical crowd (those who argue that medication is merely a marketing ploy to sell drugs for made-up problems) will widely use the FDA announcement to scare people against getting a medical assessment for AD/HD and related disorders and to scare people against using medications. Again, each of us needs to make informed decisions with our prescribing medical professional about the risks and benefits of using medication. I wish you success in making these difficult decisions.
The Importance of Social Skills
At our parents’ retreat, we learned that “the overwhelming majority of students with special needs fail at jobs because of a lack of effective interpersonal skills and/or social competencies.” While everyone needs academic proficiency to get a job, it is an individual’s social skills that will determine their tenure and success on the job. The school my son attends focuses on social skill development, positive social experiences, and promoting independence through personal responsibility.
We learned that poor language skills and poor or limited understanding of social cues in interpersonal communication contributes to problems in the workplace. We also learned that not understanding instructions, not attending well to tasks, and an inadequate sense of time contribute to job failure. We need to strive to find supports for ourselves and our loved ones to enhance their skills in a world full of demands, pressures, and fail-first policies.
May you find the support, patience, and peace that will help you succeed first and always!