God places the lonely in families; he sets the prisoners free and gives them joy. But he makes the rebellious live in a sun-scorched land. Ps. 68:6
I think one of the worst feelings in the world is feeling lonely when you are surrounded by people. Feeling lonely and isolated is a horrible feeling by itself. But there is an added pain to loneliness when you are feeling it in the midst of a community of people. What I am writing today is a sermon I am preaching to myself. I make no pretense of claiming that this is a lesson I am sharing because I have overcome. I abide in the beauty of grace. Praise God for such a gift. May we work together, as a universal community of believers to be the friends of the challenged, who climb to the roof just to lower those who need it most into the healing presence of Jesus. (Luke 5)
“Most families already feel a great sense of isolation,” Dr. Whitney Loring shared as we sat at lunch. “It can be a lonesome existence.” The loneliness of living with and supporting invisible diseases is very real. It does not stem from a lack of community or even a lack of love, but instead a lack of awareness and understanding. If you don’t know, you just don’t know. But within the context of faith, to love well those who need the most love, we, who practice that faith, must proactively seek to understand those within our community and serve them well. When it comes to those who are living on or supporting those who are living on the Autism Spectrum, the simple act of attending a worship service can be more than overwhelming. It can be the most stressful and discouraging part of their week. This seems counter to the purposes of coming together with a community of faith. “Most faith communities are not equipped to meet the needs of those with an ASD diagnosis, which in turn makes those families who are living isolated lives, feel all the more isolated.”
“I know that the intentions and motives are good,” she said quietly, “but the things most parents know to be true for their own children, just is not what is needed for mine.” The mother of multiplex, or more than one child with ASD diagnoses, children on the spectrum shared. (In order to protect the privacy of the children, I will be using fictional names.) Susan William’s children love God and love their church, but that does not mean it is easy to make it a weekly part of their lives. Children who thrive on routine and anticipated activities, while struggling with language and social interactions can sometimes feel like they are stepping into their own personal nightmare as they walk into the building. “I think sometimes God allowed me to have Autism because I can see things in a way that others can’t,” Susan’s oldest daughter, Sam, aged 13, shared. “I just don’t like feeling different, even though I know I am.”
Sam and her sister, Josie, both have an ASD diagnosis, but are the perfect example of the extreme differences found on the spectrum. Josie was diagnosed with Asperger’s Syndrome as a toddler. Children can be diagnosed as early as 18 months old. Josie is intellectually gifted and is in need of fewer interventions and therapies than her sister. Sam struggles with the social interactions that church services require. “My mom says I am like a fly on the wall. Instead of living my life, I am just sitting to the side watching everyone else live theirs.” Part of an active teen group at their church, there are many activities the girls are unable to participate in. “Camps and revival weekends are out of the question,” Susan stated. “We already are in trouble by getting them off of routine, but to add lack of sleep, different food, that light might make a strange sound, the air condition may blow right on them. It just would be senses overload. We just can’t see that it is an option for us.”
Sam shared, “I really want to be more involved with my youth group. I struggle with talking to people. I know I am just as much to blame, but I can’t help but wish the girls who are talking with each other would try to talk to me, too. I just really want to have a friend.”
A 2018 study conducted by Clemson University Sociologist, Andrew Whitehead, has found children with autism, as well as their families are twice as likely not to attend church or religious activities. Many churches are far behind the cultural curve for disability accessibility. The study found several factors to contribute to the move away from participation. The challenges of getting to the services are the first barrier. The second is once they climb the mountain of difficulties to get there, the environment is rife with triggers. Mothers of children, who end up sitting in the hallways dealing with children who are overwhelmed are likely to reconsider what they are getting out of being there. Finally, autistic children can be seen as a problem to those who have rigid standards of acceptable behavior within the worship services. Again, well meaning, but uninformed fellow believers can leave the parents of children on the Spectrum feeling, at best judged, but unfortunately shamed by their child’s behavior. DeAnna Gibson, who struggles to make church a weekly part of her life states in her blog, “Jesus and His church is as much for (her son) as it is for me, and I also felt that the church misses out on something God has for them by not having special needs people in it.”
So how does a congregation begin to nurture the spiritual needs of those with ASD? Likely, the first step is education. To meet the needs of the children and families within the church, the church population needs to understand with clarity what these families are facing. “I believe when we witness families, especially children struggling through the process of church service, our first reaction should be one of compassion,” Dr. Loring shared. “In my career, I have learned when seeing a child struggle with a social interaction, to first assume the child is struggling because of something they can not control. In that mindset, I suspend any judgement of the child or their family. Without judgement, I then seek how I can help, not share what I think they should do.”
Parents may feel excluded and isolated from faith communities because the congregation does not know how to work with and through the sensory and interrupting symptoms of ASD. Simple solutions like being sure florescent lights are not flickering, that there is warning of loud, unexpected noises or notice of changes in the normal routine can be easily implemented. Listing the events of the schedule of the day in time for parents to prepare their children or have a map of the building on the website to help visiting families give their child a sense of familiarity could be a good start in creating a welcome and inclusive environment. Simultaneously congregants can extend great grace and patience to those who may struggle with extended sitting or to those who might make noises, even loud outcries, during the services.
Great options for teachers and staff who are facilitating Bible classes are having activities which can soothe and help not only children on the spectrum, but could also be beneficial for all children. Simple solutions such as clear expectations, stated plans, having an assistant watchful for struggle, using clear and concise language and offering an area to rest from the social interactions of the class.
A great ministry every church can offer is that of offering parents who are living in the challenges of parenting children with invisible and visible disabilities a time of rest in worship. The best way to make this happen is to ask how you can be helpful. Stepping in and trying to offer help without understanding a child’s struggle, could be little help and more harmful, even if offered with the best intentions. Many parents would benefit most from acknowledgement of the struggle and encouragement. In the midst of meltdowns and hard days, an honest offering of, “You are an amazing Mom and you are loving your child well” could be the very salve that mother’s heart needs.
We as a universal people of faith are to be known by the way we love one another. Over and over in the scriptures that love is defined by the demonstration of bearing each other’s burdens, interceding on the behalf of each other and living in knowledge of one another. Our faith is secured in the belief of a Savior who encouraged the little children to come to Him. We as the church have not known better and acted in that lack of knowledge, but now we do know and must act accordingly. Because while we will be known by how we love each other, more importantly, He will be known.