November 22, 2017
An Introduction to the Legal Challenges of Autism
BY: Michael A. Williams
It is estimated that one in 120 families in the U.S. has a child who displays some symptoms of autism. For families in the U.S. Military, the estimate is one in every 78 families. As the study of autism progresses, experts speculate these numbers may be conservative. The cost of autism to our society runs in the billions of dollars annually.
Autism spectrum disorder is a developmental disability that can cause significant social, communication and behavioral challenges. Speech and nonverbal communication are frequently affected and individuals may have other medical conditions. Globally, autism afflicts all races and economic groups. It is 4.5 times more common among boys than girls.
Being a spectrum, the range of autism’s affects may be mild or severe. Some individuals affected by autism may be able to care for themselves and meet many of their basic daily needs. Others are unable to do so and are in need of assistance in their daily lives. They constitute a protected class under federal, state and local laws and regulations; raising a cluster of challenges for lawyers, courts and their communities. Our medical, dental and law schools do not offer courses on autism, leaving their graduates to fend for themselves when they enter practice.
Autism Speaks, a visible non-profit organization, teamed with Google for a collaboration they named MSSNG, with the goal of creating the world’s largest genomic database on autism. The plan is to fully sequence the DNA of over 10,000 families affected by autism. They recently reported completing the sequencing of over 7,000 autism-related genomes.
They also reported that, by analyzing more than 5,000 genomes “from families affected by autism,” they have “identified an additional 18 gene variations that appear to increase the risk of autism.” Adding these to the previous discoveries, raised the number of autism-linked genes to 61. There has been a decade of intense research in the area, so identifying 18 new genes is an exciting result. MSSNG plans to make the DNA sequencing information available, and accessible for free, to researchers across the globe.
They believe each new gene discovery should help scientists explain more cases of autism. Many of the genes are also associated with other medical concerns.
The majority of all autism-related genes affect a small group of biological pathways in the human brain, affecting development of brain cells and communications between cells. Relating genes to pathways may help scientists target certain types of treatments to individuals with the identified gene variation. Hopefully, the new knowledge will lead to more effective treatments.
So it appears, even with the strides made in autism research during the last several years, the overall research is still in its relatively early stages. Current treatment programs are costly, with results that are far from assured.
We can let others debate whether the incidence of autism is rising or if it is that advances in science and diagnostic techniques have swollen the number of individuals diagnosed. The large number of people affected makes autism important to all sections of the legal community—judges, police agencies, lawyers, and social services. For example, trained and perceptive police officers may be able to recognize unusual behaviors as symptoms of autism rather than possibly confusing the actions as dangerous conduct and resulting in injury.
Lawyers can play an important role in ensuring and safeguarding the rights of millions of Americans who fall within the autism spectrum. Some high functioning individuals in the workforce may need legal help claiming accommodations so they can hold their jobs. Other times, a family will be looking to a lawyer for help applying for or protecting public benefits—such as for medical care, education, life skills training, or housing—or planning their estates to provide for the autistic child after the parents are gone.
There is a role for law schools too. They might include one or two class periods training students to recognize the legal issues that autism gives rise to and how to address them. The autism community is still under-recognized and underserved.
EDITOR’S NOTE: The Diversity Conference was a co-sponsor of the Autism and the Practice of Law CLE presentation at the 2017 Annual Meeting. If you are a disability or special needs attorney and wish to collaborate with the Diversity Conference on a legal educational programs focused on disability law or the disability community at large, please contact Chair Carole H. Capsalis, at [email protected].