What Autism is Really Like

Q. My 6-year-old son, Jackson, was recently diagnosed with an autism spectrum disorder (ASD). To better his chances for a productive life, I signed him up for play therapy, occupational therapy, and speech therapy, as the developmental pediatrician suggested. However, despite all of the help and suggestions from the therapists, it is often hard to understand his perplexing and often difficult behaviors. Honestly, I wish I could know what is going on inside his head and what an ASD is really like for someone who has it. In a recent newsletter, you discussed ways to experience what it is like to have dementia. To truly understand my son and relate to him, I was wondering if there is any way to know what ASD is really like. Also, howdo you plan for someone with ASD?

A.  Autism is a complex disorder, and, as you probably know, no two children with ASD are completely alike. Every person with ASD has a unique set of needs. Below are some powerful resources that present what it feels like to have some of the symptoms of ASD, including sensory processing challenges, speech/language delays and impairments, social interaction issues, and some of the other ASD symptoms.

  • An interactive simulator, called Auti-Sim, aims to provide a hint at what it is like to experience the sensory overload someone with autism experiences.  The simulator takes the user through a playground as an autistic child with auditory sensitivities. To try the simulator, click here.
  • The video, Sensory Overloadcreated by Miguel Jironis part of the Interacting With Autism ProjectThe project is a government-sponsored effort to build an interactive, video-intensive website to focus on the best available treatments for autism.
  • The Atlantic Magazine recently ran a story entitled, “What it’s like on the Autism Spectrum,” which features thoughtful responses from readers who have experience with the disorder in their own lives or in their families, how the diagnosis has affected them, and what the changes in the DSM-V mean to them.
  • Temple Grandin, PhD, a famous author, speaker, and inventor with ASD wrote “Thinking in Pictures.” In the book, she describes how people with ASD are visual thinkers. Read a summary about the book, where she explains more about what it’s like living with ASD.
  • Pulitzer Prize-winning journalist Ron Suskind will publish a memoir “Life, Animated” on April 1. Suskind’s memoir follows his 20-year journey in connecting with his son Owen, who has ASD. Learn more and watch a New York Times video about Suskind and his son on the Autism Speaks website.

We’ll never be completely able to simulate autism properly, since as I mentioned previously, the symptoms are unique for every individual with ASD. However, the hope is that projects and resources such as those described above might help create empathy and provide at the very least a small degree of insight and understanding into what it must be like to live with ASD.

You asked about planning for your son with ASD. Parents of those with special needs are tasked with planning for their children throughout their lifetime, as many of them will outlive their parents but might not be able to support themselves and live independently.

As a parent or guardian, you want to ensure that your child with special needs will remain financially secure even when you are no longer there to provide support.  A Special Needs Trust is a vehicle that provides assets from which a disabled person can maintain his or her quality of life, while still remaining eligible for needs-based programs that will cover basic health and living expenses.

More than $13 billion a year is spent to care for individuals with ASD and other special needs.  For the average affected family, this translates to $30K per year. Fortunately, there are many ways to plan for the long-term care of a disabled child. As Jackson gets older, if he will likely need care for life, it’s important to provide legal protections for your child. The Fairfax and Fredericksburg Elder Law Firm of Evan H. Farr, P.C. can guide you through this process. Be sure to check out our dedicated Special Needs Website at http://VirginiaSpecialNeeds.com. If you have a loved one with special needs, call 703-691-1888 in Fairfax or 540-479-1435 in Fredericksburg to make an appointment for an introductory consultation.

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.

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