As a parent, the journey of raising a child with autism can be profoundly challenging. Take, for example, Lucas, who bursts through the door after a long day, clutching his fast food bag and soda. As he drops his backpack onto the floor, I approach him for a hug, which he reluctantly reciprocates. Sundays are our family days, and my partner, Mark, and I have five children, with Lucas being the middle child among them. He is also a twin, born second in a set of boy/girl twins. Lucas possesses large, strong hands and an endearing, albeit rare, dimpled smile.
When he turned 17, we faced an emotionally taxing decision to place him in an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID), often referred to as a group home.
In the year leading up to his move, Lucas exhibited concerning behaviors, including aggression and destructive tendencies. Reflecting on that time, I realize now that I should have sought placement much sooner, both for his well-being and for the safety of our other children, as well as for my own mental health and that of Mark. Lucas has been diagnosed with Autism Spectrum Disorder, Level 3, commonly recognized as severe autism. While he can articulate a few words, most of his communication is nonverbal. He also struggles with pica, necessitating constant supervision to prevent him from ingesting harmful substances. Despite numerous attempts at toilet training, he still requires diapers.
His adolescent growth spurt only intensified his already volatile behavior, making the home environment feel increasingly perilous. The intensity of Lucas’s disruptive actions escalated to a point where our household felt like a battlefield.
One particularly distressing episode involved waking Lucas only to discover that he had removed his diaper and smeared feces on himself and his bedding. In these moments, as his primary caregiver, I had to suppress overwhelming disgust to clean him and his surroundings. This left me feeling a mix of sadness and anger, and I often found myself attempting to detach emotionally, referring to myself in the third person as if that could provide some distance from the situation.
Daily violent incidents became a norm. Mark often took the brunt of Lucas’s aggression, though I, too, was not spared from physical harm. More often than not, Mark could restrain Lucas without causing him injury, but there were occasions when Lucas emerged with bruises from being held back.
Occasionally, brief moments of levity would surface, like when Mark, in a moment of inspiration, playfully exclaimed “Not today, Zurg!” while preventing Lucas from attacking his siblings, prompting a fit of laughter from Lucas that momentarily distracted him. However, such light-hearted instances were fleeting.
After Lucas’s placement, I found myself in the grocery store, overwhelmed with emotion as I realized we no longer purchased lactose-free milk or his favorite snacks. For the first six months post-placement, I cried at the mere sight of him. The weight of guilt, anxiety about his well-being, and a deep sense of longing choked me with grief.
On Sundays, as Lucas arrives, I mentally check off a list of concerns: Has his hair been cut? Is he clean? Are his fingernails well-groomed? Is he in need of a change? Despite my critical observations, the truth is that the care team at the group home provides around-the-clock supervision—something we struggled to achieve while managing our other four children and full-time jobs. This arrangement is undoubtedly in the best interest of both Lucas and our family, yet I grapple with guilt over feeling relieved.
Lucas has been on a waiting list for funding to support home care for nearly a decade. While I hope his name will rise to the top of that list soon, I am determined to decline the opportunity for home support, understanding that the current situation is more beneficial for everyone involved.
In closing, the decision to transition an autistic teen to independent living is fraught with emotional complexity. It requires weighing the needs of the child against those of the family unit, ultimately prioritizing safety and well-being.
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Summary:
Transitioning an autistic teen to independent living is a deeply personal and often necessary decision for families. This involves recognizing the child’s needs, the family’s dynamics, and the overall safety and well-being of everyone involved.
Keyphrase: Transitioning Autistic Teen to Independent Living
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