The forgotten child

In America’s current zeal to bring attention to autism spectrum disorders, other childhood disabilities have consequently become overshadowed and virtually ignored.
A national and regional media blitz on behalf of autism related disorders has helped bring the topic to the fore; but at the cost of other equally severe disabilities, the awareness of which has consequently suffered.
I see the public service announcements all the time on television. The television news reports on autism frequently—almost to an exhausting degree. There is a designated autism awareness month now. And some of the loudest voices in government lobbies are autism advocates and activists.
Here in Nevada there is as great a push for autism awareness, diagnostic and treatment services as there is nationwide. There has been coverage ad nauseum of emotional testimony of parents of autistic children in the wake of statewide budget cuts.
Please do not take this the wrong way: I am not against autism awareness campaigns, fundraisers, or research, diagnostic or treatment services. Certainly the prevalence of autism, as well as its pervasive impact on the lives of children and families afflicted with the disorder, is cause for concern.
But there are other serious and severe childhood disabilities that are being conveniently ignored by the public zeal over autism.
Specifically, I speak on behalf of thousands of children born nationwide each year, and hundreds here in Nevada, with fetal alcohol or fetal drug spectrum disorders. The rate of children born with at least fetal drug or fetal alcohol exposure is as alarming as the 1:110 to 1:150 rate of children born with an autism spectrum disorder.
The prevalence of autism among live births represents a little less than one percent of the total number of children born nationwide each year.
FASD and FDSD birth rates are comparatively smaller at about two to five cases per one thousand births on average. That’s only about half of one percent. However, prevalence of FASD and FDSD can vary significantly according to population and demographics.
Among American Indian tribes, for instance, the prevalence of full-blown Fetal Alcohol Syndrome, or FAS, jumps exponentially to just under six cases per thousand births.
FASD and FDSD include the full-blown diagnoses of FAS and FDS, as well as fetal alcohol and/or drug effects, and fetal alcohol and/or drug exposure; the latter two of which are statistically more common than the former.
Still, children born with any form of FASD or FDSD can face myriad developmental challenges, which are lifelong. From cognitive, to behavioral and social limitations, children born with alcohol and/or drug-related disabilities have an organic deficiency to their brains that will never get better and never improve. There will always be a part of the brain which remains damaged or missing.
Unlike autism, which studies have shown to actually improve in some cases with treatment and age, FASD and FDSD disabilities are with a child for life. Limitations are permanent. Much like mental retardation, there is hope neither for improvement nor a cure.
In fact, FASD and FDSD are more difficult to diagnose early on than even autism, because most limitations that FASD or FDSD cause aren’t evident until a child becomes school-aged.
While many children afflicted with FASD and/or FDSD are born with developmental delays, they can often overcome these deficiencies with appropriate early intervention. In many cases, they can appear developmentally normal by the time they have reached toddler age, and this can be both misleading and dangerous.
That’s why early diagnosis is critical to the treatment of FASD and FDSD. By establishing developmental criteria of infants, FASD and FDSD can be detected early. Unfortunately, this only braces parents and treatment providers for what is to come. There is little anyone can do until those signs and symptoms of cognitive, behavioral and/or social limitations become manifest.
That is what makes living with these disabilities so difficult for parents. There exist feelings of helplessness and anxiety, which are difficult to deal with when one knows that one’s child will one day be significantly impaired.
The only consolation that advocates of FASD and FDSD have is knowing that these disabilities can easily and clearly be prevented. All it takes is for expecting mothers to abstain from using substances while pregnant. Abstinence is the only method of prevention. There is no safe consumption during pregnancy.
But, alarmingly, drug and/or alcohol use among pregnant women is significant. For instance, approximately 12 percent of pregnant women nationwide continue to drink alcohol during pregnancy, and that means 1:8 unborn children nationally are thus exposed and placed at risk for FASDs. Likewise, about five percent of women nationally use illicit drugs while pregnant, making fetal drug exposure about 1:20.
In Nevada, roughly 26 percent of children are born exposed to alcohol and four percent of mothers continue using alcohol even after they learn they are pregnant.
Approximately one percent of children are born affected by alcohol each year, including 40,000 in the United States and 200 in Nevada.
In fact, it is estimated that an alcohol or drug exposed infant is born every 90 seconds. This represents a growing problem both here in Nevada and nationwide.
Founding father Benjamin Franklin is credited to have said that an ounce of prevention is worth a pound of cure.
Nothing could be more true about FASD and FDSD.
Prevention—and, therefore, awareness—is the key to curing these afflictions. Without it, there is no cure, and the problem will remain a chronic epidemic.
The state of Nevada funds diagnostic clinics for FASD and FDSD. But there appear to be woefully inadequate funds for the treatment of these disabilities. Unlike autism, FASD and FDSD get grossly and routinely overlooked when it comes to funding treatment programs.
While there is no cure or much hope for improvement, treatment for FASD and FDSD is focused on helping individuals afflicted with these disorders maintain some level of function and productivity. As with MR, that is about all we can do to treat FASD and FDSD effectively.
Without funds for treatment, the only practical solution is to increase community education, which, in turn, spreads awareness and, hopefully, consciousness.
But these children, left in the dust of an autism blitz and forgotten by a frenzy of media campaigns, need the help of those charged with responsibility for bringing the issue and its awareness to the fore; just as the advocates and activists promoting autism awareness have succeeded in doing.
This means that parents and family members, medical and other treatment professionals, social service advocates, journalists and lawmakers all have a fiduciary responsibility to speak for the children who cannot speak for themselves. We have a duty to be proactive in the fight to end a disability that is not only highly preventable, but that ought not even reasonably exist.
The spread of this disability, caused by the negligence of others, should be prevented at all costs. The fact that there are children born to mothers who exposed them to dangerous substances is unreasonable and unacceptable.
In contrast to autism, the cause and prevention of FASD and FDSD are crystal clear. We know what causes these disorders and we know how to prevent them. But we seem too busy studying autism to care that an ounce of simple education and awareness can produce a pound of prevention.
I make this public appeal in the hopes of bringing this topic back to the surface where it belongs; alongside, and not below, autism.
Please, let us not forget the other children.