The roles and responsibilities of parents of children with autism shift as the child ages, matures, and moves through different developmental stages of life. While there are many factors that influence a parent’s amount and manner of involvement (e.g., level of functioning, communication skills, adaptive skills, independence, and availability of effective services), there are common threads across these and other factors.
Parents of adults realize (or sometimes, need to realize) that their role should be as a guide and facilitator to help their adult child self-advocate as much as possible. Parents are well aware of their own diminishing strength and energy and the ability to be “on-call” 24/7. It’s a realization that others are inevitably going to assume some supervisory or other supportive roles in the future of their sons and daughters. Helping your adult child to communicate their choices and decisions—no matter how small and whether or not they show good judgment—becomes the focus for parents.
The roles and responsibilities of parents will evolve over time, whether you like it or not. What we as parents can do in the meantime is be proactive, define the wants and needs of the individual, and be there for them. The planning process is time well used!
Two Valuable Tools
Person Centered Planning and Essential Lifestyle Plans are two valuable tools that individuals with autism, their families, parents, and guardians will certainly benefit from. A plan offers a path to follow that will help address the concerns, wants, and needs of the person with autism. UPDATE! I would suggest putting life to your Person Centered Plan to film! I have recently created a 4 Part Series for my son. The impetus for this was the process of onboarding a few new direction support providers and the complexity of Michael supports. The series starts with:
- PART IWhat are the characteristics of Autism and How Does Michael Personally Experience Them?
- PART IIAll Behavior is Communication, Functional Behavior Assessment and Positive Behavior Support
- PART III:Supports that Work! Evidence Based Strategies that Michael has been Using, Successfully for nearly three decades.
- PART IV:Known Medical or other Biological Factors and His High Acuity Support Needs.
So, you have a plan in place—what’s next?
All too often, families begin exploring community living options based solely on what services are currently available. While availability matters, it shouldn’t be the sole measure by which you assess housing or support arrangements for a person with autism. Instead, return to the foundation: your individualized plan.
If your plan aligns with an existing living option—wonderful. Move forward. But as you do, it’s essential to equip the new agency or provider with the detailed information that will ensure continuity of care. This includes support strategies that work, critical medical information, and onboarding guidance for new staff.
I was reminded of how fragile this continuity can be when one of my son Michael’s longtime Direct Support Providers (DSP) resigned after over seven years of dedicated service. With that departure, the depth of knowledge, routines, and nuanced understanding that had been built over time were suddenly gone.
I quickly learned that new staff—often led by a new house supervisor—may begin onboarding using their own standard procedures, with little understanding of the complexities that had been carefully implemented by prior DSPs. The result can be devastating, especially when the person receiving care has high-acuity medical needs, as Michael does.
Michael lives with Intractable Partial Complex Seizure Disorder, including frequent atonic seizures that have caused broken bones and multiple concussions. These medical challenges are deeply intertwined with his social and emotional experiences. For Michael, the mere presence of an unfamiliar person can trigger anxiety, which in turn increases seizure activity. This creates a dangerous cycle: stress fuels seizures, seizures increase stress, and the loop continues.
Unfortunately, a lack of informed transition planning led to the implementation of supports that were not appropriate for his condition—compromising his health and safety. I found myself feeling like I was in a race car—no seat, no brakes—and Michael was in the backseat.
That crisis was the catalyst for this work.
To ensure that Michael’s needs would be understood and honored going forward, I created a four-part visual training series. This tool is designed to support onboarding, promote consistency, and prioritize health and safety through clear, individualized information. It reflects what all families deserve: a process that is not just reactive, but proactive, person-centered, and trauma-informed.
Disability is a Consequence of the Wrong Environment
Trying to fit a person with autism into an available residential option can frequently be counterintuitive. By nature of the industry, service systems are constructed on a “risk-management” basis; and not always considering the human component that can only be reached through relationship development.
The focus should be on meeting the social, emotional, communication and sensory needs of a person, not a slot, bed or space. What happens in this situation is that the “autism” doesn’t fit the environment, and the person with autism is constantly being measured by how they don’t fit. Crisis situations are not good time to contemplate a move.
Keys to Service & Support
It would be misleading to tell you that community residential services are ready, willing and able to meet the needs of your son or daughter. Here are some KEY issues to consider:
Structural and Location issues
- Able to live with a roommate or prefers to be the only person with a disability living in the house
- Location: urban, suburban, rural
- House, apartment, townhouse, etc.
- Open concept or segmented/defined living areas
- Fenced yard
- Community with a sidewalk
- Near a park
- Within a short walk or drive to stores, community recreation, employment, etc.
- Pet friendly
- Heating and cooling; forced air, heat pump, fireplace-wood or gas, air conditioned
- Window locations
Staff or Agency Support
- Will your son or daughter need support staff? If so, what do they need assistance with: menu planning, organizing, bill paying, etc.? Male/female? Allow for change and/or rotation of staff; daily shifts, weekly, bi-monthly
- Community contracted agency? Private provider?
- Training and understanding of autism; documentation and examples
- Support staff’s ability to work as a team member and follow the Person Centered Plan, provide feedback, and openness to learning
Training Needs
- Understand that all behavior is communication
- Will participate in assessing a behavior using a competing behavior diagram
- Trained or willing to be trained on evidence-research based autism support strategies that enhances the ability to communicate choice.
- Prepare a structured and predictable household
- Prepare community access with activities based on resident’s interests
- Willing to expand prospects of the resident through structured opportunities, resulting in experience and choice
- Respect employment and volunteerism through “work-ready” supports to independence
Achieving a Positive Community Living Experience
Ensuring a positive community living experience for an individual with autism, will only be accomplished through the continuous advocacy and resolve that the individual, family, and/or guardian that will deliver!