Tommy and Henry Stevens are identical twins who were born slightly premature and met their milestones later than others their age. As they became toddlers, they still didn’t say a word. Doctors explained to their mother that there was nothing to worry about, that perhaps they were “late bloomers.”
By the time they reached their fourth birthday, they still only said a few words and something just didn’t feel right to their mother, Caroline. She brought them to a specialist and after a day of testing, they were both given a diagnosis of autism spectrum disorder (ASD). That day, Caroline was given reassurance from the doctors, specialists, and therapists that her twins could have full and meaningful lives, similar to Greta Thunberg and Steve Jobs and other famous artists and Silicone Valley success stories. Caroline still worried about their futures and wondered where the genes for her children’s ASD came from.
ASD is a Complex Disorder
ASD is a brain disorder that affects social skills, communication, and behavior control. In the United States, ASD affects one in 59 children, according to the U.S. Centers for Disease Control and Prevention.
Scientists believe that ASD is likely caused by both genetic and environmental factors. In fact, a recent study of about 2 million people, estimated that genes account for 80% of the risk of ASD. As a “spectrum disorder,” ASD represents a large range of symptoms and behaviors, all of which makes teasing apart the genes involved quite challenging. With better genetic sequencing technologies now available, more research, including the extensive study that I will describe below, can be done on the role of different genes in causing ASD.
102 Genes are Now Associated with ASD
In a study published on January 23rd, 2020, in the journal Cell, researchers led by Joseph Buxbaum, director of the Seaver Autism Center for Research and Treatment at Mount Sinai, took advantage of one of the largest databases of DNA samples (35,000 samples) from people with ASD to identify 102 genes associated with the disorder. Thirty of these genes had never before been connected with the condition. The larger sample size of the study allowed the research team to increase the number of key genes from 65 in 2015 to 102 today. The study also distinguished the genes more closely associated with autism from those that might also contribute to other neurodevelopmental disorders including intellectual and motor disabilities. The research team strongly believes there to be as many as 300 genes that may be involved in causing autism, some yet to be discovered.
Professor Buxbaum, a world-renowned psychiatrist, said: “This is a landmark study, both for its size and for the large international collaborative effort it required. He also said, “(k)nowing the genes involved in ASD will help researchers better understand the causes and possibly develop new drug therapies for children with severe impairments.”
If Your Loved One Has Mild ASD
Similar to the advice given to Caroline in our example, many people with ”mild” ASD are able to lead relatively normal lives while others may require support throughout their lives. Those with the condition often find it difficult to socialize and communicate with others, but by treating the symptoms throughout a loved one’s lifetime with various therapies and perhaps certain drugs, you can maximize your loved one’s chances of having a neurotypical life.
A person with “mild ASD” may have advanced communication skills and academic abilities, but have very delayed social skills, severe sensory issues, and/or extreme difficulties with organizational skills. As a result, the individual with mild ASD may find public school or work settings more challenging than an individual with greater language challenges but fewer sensory or social problems.
If Your Loved One Has Severe ASD
An estimated 30% of people with autistic have a severe form of the condition — typically distinguished by a low intelligence quotient, limited speech, and difficulty performing everyday tasks. To qualify for an autism spectrum diagnosis, a person must have symptoms significant enough to impair daily life. Those challenges rise to a very different level for people with “severe ASD.”
People with severe ASD are often non-verbal and intellectually disabled, and may have very challenging behaviors. Severe autism can be much more debilitating and challenging than other types of autism. This is because people with severe ASD (1) have many of the same issues as anyone else on the spectrum, but to a much greater degree; and (2) often have major symptoms that are relatively rare in higher functioning autism. These two sets of issues can make it virtually impossible for a person with severe autism (or his/her family) to function well in typical settings ranging from school to the grocery store to the doctor’s office, making help necessary throughout the person’s lifetime.
Planning for a Loved One with Special Needs
If you or a loved one is on the autism spectrum or has some other type of special need, it is wise to consider creating a special needs trust. A special needs trust is an essential tool to protect the financial future of an individual with special needs. Also known as “a supplemental needs trust,” this type of trust preserves eligibility for federal and state benefits by keeping assets out of the name of the person with special needs, while still allowing the trust funds to be used to benefit the person with special needs. Special Needs Trusts fall generally into these main categories:
• Third-Party SNTs where one person creates and funds for the benefit of someone else.
• First-Party SNTs which are created by or for the person with special needs using that person’s own money.
• Pooled trusts are an alternative to setting up your own special needs trust if you can’t come up with a good choice for trustee or if you are only putting a small amount of money into the trust. There are both third-party and first-party pooled trusts.
Special Needs Planning at the Farr Law Firm
If you have a loved one with special needs and you want to ensure your loved one is provided for throughout his or her lifetime, a special needs trust is a wise idea. Most commonly, a third-party special needs trust is done by parents when they do their own estate planning, directing an appropriate share of the parents’ living trust into a special needs trust. When it comes to special needs planning, the attorneys at the Farr Law Firm can guide you through this process. Please contact us to make an appointment for an initial consultation:
Special Needs Attorney Fairfax: 703-691-1888
Special Needs Attorney Fredericksburg: 540-479-1435
Special Needs Attorney Rockville: 301-519-8041
Special Needs Attorney DC: 202-587-2797
About Evan H Farr, CELA, CAP
