"The IACC needs to hold a session on inpatient and outpatient care options for the severely autistic who can no longer live safely at home"

Many public comments to the IACC stress the crisis in crisis care

Families endure years of trauma and desperation, with little support

By Julie Fackrell

My name is Julie Fackrell and I am the parent of an adult with ASD.

Our autism family lives in a constant state of crisis. And when we seek help, we find there are limited programs to serve our son.

[Son’s] ASD symptoms were somewhat mild as he was growing up. When presenting these symptoms to his pediatricians over the years, the common response was “he will grow out of it.” [Son] did not grow out of these symptoms and in fact, they progressed and became much more severe limiting his ability to finish high school with his class. After a couple years of many different doctors, therapists, and psychiatrists we were at a loss. Our community in the Dallas/Ft. Worth vicinity did not offer any services or supports and I, his mother was forced to leave my full-time job to care for him. This left our family desperate for financial support on top of the need for ASD support almost losing our home to foreclosure at one point.

After making the difficult decision to move out of state to California where services and supports were more readily available, we found some relief. And while we continue to live a more stable life here, [Son’s] prospects of gaining any type of employment or leading an independent life are despairing.

As a family, we have experienced many frightening situations over the years that will affect us for the rest of our lives. We have all been victims of severe verbal lashings that at times include being spat on and threatened. We have had numerous holes put in the walls, televisions being broken, and other miscellaneous household items being broken including priceless mementos from ancestors. My daughter who is now 17 has hidden in closets, under beds and behind doors. She has been attacked while sitting in the back seat of the car next to him at the young age of 10. While most of these incidents have not been physically abusive, the mental and emotional trauma sustained continues to harm us and has evolved into serious physical illnesses for me, his mother.

[Son] has been hospitalized in several psychiatric facilities. I have come to learn this is not a treatment of any sort but rather a short break for the family at a very high cost.

I worked hard and put myself through school to be able to have a career and pursue my goals and dreams. I no longer have the ability to accomplish any of these things. I have mounting student loans due to interest I cannot pay and will not use the degree earned.

I love my son with all my heart, and both my children come before anything else. I am committed to living the rest of my life as his mother and caregiver, however long that may be. Considering my failing health at such a young age, I’m afraid I will leave this life not knowing how he will survive.

This is an acute, growing problem around our country. The IACC needs to hold a session on inpatient and outpatient care options for the severely autistic who can no longer live safely at home, and also long-term residential care. We also need more research on interventions that prevent aggression, self-injury, and property destruction. It is these behaviors that keep our severely affected children from being able to access care and services.

Thank you for your consideration.

This statement was submitted to the IACC as a public comment.