"GAO Expert Panel: Youth with Autism transitioning to Adulthood"
On March 4, 2016 Lisa Parles was in Washington, D.C. to testify before the United States Government Accountability Office (GAO) on the "GAO Expert Panel: Youth with Autism transitioning to Adulthood." Lisa was one of twelve experts from across the country invited to engage in debate and provide information to the GAO on the needs of individuals with autism as they move from adolescence to adulthood.
Statement of Lisa McCauley Parles, Esq.
I am Lisa Parles. Thank you for giving me the opportunity to share my family’s story and to discuss the critical needs of individuals with autism who exhibit maladaptive and often dangerous behaviors.
I am a partner in Parles Rekem, a New Jersey law firm representing individuals with disabilities and their families. I am also the mother of Andrew, a 25 year old non-verbal young man with autism and challenging behaviors. There are many, many “Andrew’s” and their stories are not being told. Today I will share my family’s struggle for effective services on behalf of Andrew and others who cannot speak and whose families suffer in unimaginable isolation while their loved ones engage in self-injury, PICA, aggression and elopement. In my law practice I have met families whose loved ones have:
Ingested batteries and other inedible objects
Jumped from moving cars
Eaten surgical dressings and pulled out stitches
Fractured limbs and skulls
Extracted their own teeth
Becoming aggressive to parents, siblings, teachers and tutors.
One client’s child at 16 began to smash light bulbs if not watched every second and tried to eat the shattered pieces.
Turning to my son, since his diagnosis in 1993 he has received services in four different states and our family has moved eight times. When he was in pre-school he was fortunate to get a coveted spot in an intensive, home-based data driven ABA program. He responded immediately. His receptive language increased dramatically, he began to speak with single words and short phrases. He spent some time in a typical pre-school with a shadow. After a few years of running a school “for one” out of our home we realized he would need specialized services beyond the pre-school years and moved again so he could attend Alpine Learning Group, a renowned ABA autism school. In the thirteen years he attended Alpine he blossomed. His language remained limited and he continued to need to be painstakingly taught skills step by step. But he learned to:
Ride his bike
Tie his shoes
As a teen he watered plants at the Y, helped gather recyclables and did grocery shopping for homebound seniors.
At 19 he suffered a regression as so many individuals with autism do in their teens and early adult years. The regression can only be described as an assault on his brain that was both biological and neurological. He lost his language, did not sleep for days at a time, lost 100 pounds in three months and tragically began to engage in self-injury by hitting his ears and the sides of his head, sometimes as often as 100 times a day. We adjusted our goals and our dreams but not our drive to get him what he needed.
We had the resources to add staff around the clock but staffing our home proved impossible. I began to be able to predict who would not return to our home by the look of fear on their face when Andrew hurt himself. There were times when we were on our own, exhausted and fearful for our younger son’s safety who often slept at a friend’s house or in a hotel with his grandparents.
During one terrifying stretch Andrew was awake for four days straight and his self-injury intensified. The first ER we went to would not allow him to take a protective helmet into the unit. We returned home but by the afternoon we knew it was a dangerous, life threatening situation so we went to a second ER who determined they could not help him given his autism and behaviors. They called a hospital that had a specialized unit for individuals with autism who were in crisis. We were relieved to hear there was a bed available but the ambulance could not take him until insurance approved a transfer which took through the night and well into the next day.
Researchers have found and countless families report their children with autism with challenging behaviors being turned away at hospitals. After months of searching for an appropriate residential program, fighting for funding and pleading with Admissions Directors, one year after his crisis began he finally went to a campus based, behavioral medical program. It was in Florida. He would be over 1000 miles away from us for 15 months. Eventually, he got a spot at Bancroft’s Lakeside program in New Jersey. He stabilized, began to sleep and eat, began to rebuild skills. Then, we discovered, after noticing that his pupil was cloudy that he had a traumatic cataract and detached retinas in both eyes. The surgeon believed the injuries were from some time ago. Since losing his language he used his iPad to communicate so his sight was his voice. With the help of a team of behavior analysts, high staff ratios, almost immediate crisis responds and on site nursing at Lakeside we got him through three surgeries and the almost impossible post-surgical recovery periods where he not only couldn’t he hit his head, he could not touch his eyes which because of stiches felt like a foreign body was in them.
Since his sight was restored, and with the support Bancroft gives, he has stabilized further and is back on the path of skill building and success.
It is deeply troubling and actually terrifying that a vocal minority of inclusion zealots seek to close effective programs like Lakeside. Limiting choice and an array of services is a dangerous and offensive path. Due to this outstanding data based, structured program , on good days Andrew volunteers at a food bank, spends time in a community based hydroponic greenhouse and goes to the local post office. On days he hasn’t slept or when he is agitated, uncomfortable or distressed and it is unsafe for him to go in the community he stays productive at the campus greenhouse or in the calming, tranquil sensory room. With essential supports he is again cooperating with getting his hair cut and sitting for dental visits. He successfully goes to restaurants, concerts and museums.
Researchers have studied families who are unable to access quality services where efficacy is measured in real, observable changes in behavior. These families experience isolation, exhaustion, safety concerns and the real fear of injury or death.
The panels yesterday and today have identified the laudable and important goals of employment, independent living and access to higher education.
In closing I would like to suggest an additional valued, critical goal – safety– or in more descriptive terms, the reduction of suffering. I look forward to sharing with you information about model programs which, unfortunately, are far too scarce and available to only a few. Thank you.