When she was three years old, no one could have predicted that she would author books such as Animals Make Us Human: Creating the Best Life for Animals, and Humane Livestock Handling: Understanding Livestock Behavior and Building Facilities for Healthier Animals. No one would have predicted that she would have accomplished anything at all. In her speech yesterday, she said, “I would have ended up in an institution if mother hadn’t fought for me.” At the age of three she was non-verbal, and spent much of her day rocking back and forth and having tantrums, “full-blown symptoms of autism,” in her words.
People believed in her
In her talk, Grandin highlighted people in her life that made the difference for her between institutionalization and international acclaim. Among others, her mother, a nanny, a high school science teacher, a college professor, an engineer on a job site all believed in her, encouraged her in her gifts, and helped her navigate the challenging matter of understanding the mysterious world, to her, of human relationships.
For example, one day on a job site she told a welder that he did a poor job, and that his weld looked like “pigeon doo-doo.” The welder, understandably, was upset and told her supervisor about the incident. The supervisor went to Grandin and explained that such a blunt comment on someone else’s work was not appropriate. Instead of firing her or writing her off as stupid, crude, or hopeless, he told her that she needed to tell the welder that her words were rude and to apologize to him, which she did.
Because people like this supervisor believed in Temple Grandin and called out the best in her, the whole world is a better place. She looks at the world, and animals in particular, from a different perspective than most human beings. Thanks to Temple Grandin, animal handling and slaughter operations are much more humane than they used to be.
In her lecture, Grandin said that unlike most people, she thinks primarily in pictures and secondarily in words. She uses words to describe the pictures that are her preferred tool for thought. As a result, she has been able to provide extraordinary insight into animal thinking and behavior, so that she was able to articulate likely causes behind animal behavior in a way that no one had done before. She published her insights five years ago in her book, Animals in Translation: Using the Mysteries of Autism to Decode Animal Behaviour.
She applied her same unusual thinking style to herself and other people with autism and Asperger’s syndrome, and produced several other books about and for people including The Way I See It: A Personal Look at Autism and Asperger's, The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism, and Developing Talents: Careers For Individuals With Asperger Syndrome And High-functioning Autism.
What if . . .
Let’s do a little thought experiment. What if her mother, her science teacher, the engineer and all the others had not believed in her? What if these people had seen her odd behaviors (as others surely did) and concluded that she was intellectually impaired ? What if they assumed that she would not be able to make any contribution to society and that she would need to be cared for by others throughout her life?
What if . . . ? The answer seems easy. Grandin would have been one very frustrated woman. She would be unemployed or underemployed like the majority of people living with disabilities throughout the world. Furthermore, the world would be bereft of insights that she has given to us about animals and humans. Anyone who appreciates animals must acknowledge Temple Grandin’s contributions to humane treatment of our fellow mammals. Anyone who wants to know more about autism can look to her for insight.
Let’s do one more “what if . . . ” What if the young man with Down syndrome who goes to your church has no one who pays attention to him, encourages him, helps him find his gifts and use them well? What if the older woman who is now blind has no one to come along side her to find out what she can still do and loves to do?
The answer to these questions seems easy as well, because these “hypothetical” situations happen regularly. The result is that many, many people end up alone, isolated, frustrated, unemployed or underemployed, and often depressed.
I’m not saying that anyone with a disability is a Temple Grandin in the rough and will make contributions to life and society on a par with her. Almost no one in the world does that, disabled or not. What I’m saying is that each human being is uniquely gifted for the callings that God has given to them. People with disabilities, more than any other group of people in the world, are assumed to have nothing to contribute to life, society, or the church. They are most likely to be written off before they are given a chance. They are most likely to have all their abilities and gifts colored, in other people’s minds, by the disability.
As we wonder what might have been with Temple Grandin, we also need to wonder, what might God do in the lives of people with disabilities that we know if we give them some encouragement and appreciation? It's good to think about ramps and elevators and large print bulletins, but hospitality, welcome, and inclusion are mainly about relationships.
Comments
I am very interested in Temple Grandin's story. It is very inspirational. I am jealous of the people who invested in her, and wish the same experience for my daughter, who suffers from bipolar disorder. I think mental illness is the new misunderstood and feared illness. But I suppose anyone who loves someone who is suffering and seems "stuck" would probably feel the same way, whatever the diagnosis.
Yes, and even no diagnosis. Don't all of us who are parents wish and pray for encouragers for each of our children? I think that's why it's so important that each of us be encouragers to other people. After all, everyone is someone's child. Dr. James Kok and others have written many helpful articles on being an encourager in the Care Capsule which is part of Kok's Simple Acts of Care and Kindness website which has sections for kids, parents, and teachers.
This article was written in 2011. It is now 2018. Not one comment was posted. Why?
The article is, in part, about an invisible population -- about people who live with autism spectrum disorder (ASD). This article may have been before its time.
The Centers for Disease Control and Prevention (CDC) reported in 2007 the prevalence of children diagnosed with autism to be 1 in 150. In 2009, the Autism and Developmental Disabilities Monitoring (ADDM) Network, the sub-committee of the CDC responsible for tracking ASD, reported the statistical prevalence of ASD among children as 1 in 110. In 2006, the rate was 1 in 88. In 2014 the ADDM confirmed the ASD prevalence as 1 in 68 children. This roughly represents a 123% increase in identified children who are on the autism spectrum. Most of this increase likely accounts for the increased awareness to this pathophysiological disorder and updated diagnostic criteria.
No wonder there were no comments to Mark Stephenson’s 2011 article, featuring the iconic Dr. Temple Grandin. People like Temple did not show up in our churches. Or do they showing up, and nobody notices.
April is “Autism Awareness Month”. So I am posting today at Mark’s article in honor of the occasion.
Where are most of the children today who were, before the CDC tracked statistics in 2002 and since, identified having some form of autism? They are the "invisibles", the shy and socially awkward. They are invisible because they are high functioning enough that their inabilities do not require a ramp into the sanctuary. They are easily overlooked, ignored, and avoided.
Adults with an ASD are represented in another set of difficult statistics. Ninety percent of these adults are unemployed or under-employed. They are also socially isolated and struggle with depression and anxiety as a result. They would like to have relationships and community, but there are too few, if any, social ramps to give them access.
I am referring here, by saying “social ramps”, to another article written by Mark Stephenson in 2016, entitled “Build the Ramp for the People Who CAN Walk”. That article had two posted comments. Is Mark, again, ahead of his time?
We have a 1-in-68, and growing, population of people who have no “ramp” access to authentic community in the church or, for the most part, anywhere else in our society. Does anybody in the worshipping community see this?
This blog site has another encouraging article, entitled "Rethinking the Church’s Social Practices", by Jeff McNair, professor of special education, California Baptist University (2014). Another article by same author was referred. Its title is “Universal Design and the Christian Church” (2008).
Oops, sorry, Nelly Sinclair on March 12, 2011. I did not see your post before I post mine. - Joe
Joe, thanks for digging back through the archives to find this blog. The tide of public neglect and fear toward people who have autism and other disabilities is turning, but it takes a long, long time, and it takes people working together and continuing to speak up. There are people in society and among God's people who are catching on. Thanks for adding your voice.
Mark, it does take a long time to change dominate opinions and cultural biases.
I agreed to help a 40-year-old man find a church where he might find community, a faith community that is open to people who have awkward social presentations due to disabilities. He lives with autism. My middle-aged companion is currently a member of another church for 25 years. His current membership church knows nothing about social ramps and seems unable to learn. He is ready to move on.
We visited a church last Sunday. The visit holds promise. I am positively impressed with the fact that many individuals among the Sunday worship participants appear neuro-atypical with corresponding social awkwardness.
However, nobody greeted us as we navigated our way to the sanctuary. We sat in the sanctuary twenty minutes before the start of the service. Several older men were talking across the center aisle and slightly behind us. One older gentleman talked as though he had a hear impairment. He said, “Look, another stranger.” We were the only ones in the sanctuary. I thought the comment was ironically funny, given the speaker’s own impairments. My companion was hurt. We will need to work this through. We have two more churches to visit.
We do not need a church that has ready-made social ramps, just a worshiping community with open hearts and a willingness to learn about social ramps. My companion has about 40 more years to his life span. I wish this social shift to happen sooner, better yet, led by the faith community.
Joe, it must be very frustrating for you and your friend to visit different churches and not find the kind of welcome that all of us long for. When Martin Luther King Jr. was jailed in Birmingham, he received a letter from several other clergy in which they opposed segregation and urged him to be patient, but as I recall he responded that the time for patience was over. I can imagine that you and your friend feel the same way, but the challenge for you is that the tools that King and his followers used won't work. Your hope is to connect and find belonging, not use non-violent protest to fight for your companion's rights. As difficult as the fight for civil rights is, it seems that the longing and desire for belonging is even more difficult because one cannot fight for these, they must be offered by the other as gifts. Like you, I hope and pray that you and your companion can find a congregation that will offer these gifts with joy.
Martin Luther King Jr and Agnes Gonxha, aka “Mother Teresa”, are examples of contemporary saints who God gave to the church when God wanted to get across to us important corrections. They felt strongly for the cause of their callings. They both represent for me passion, patience, and love as they allowed God to spend their lives as messages to the rest of us. You are right that I would want to emulate the way they loved the Lord and the church. Thank you for the gentle reminder and encouragement.
Today is Sunday, April 15. This post is a continuation of my journey with a 40-year-old man who lives with autism and who wants to find a church home. The journey started with a visit to a church as posted on April 9.
Today we visited another church. Like the previous church, this church had a pipe organ. My friend knows a lot about pipe organs. He has his own 25-foot paddle, two-manual organ in his bungalow home. He personally played several of the largest pipe organs in town. This organ’s base sound and the organist’s skill met his approval.
This is a friendly church. Between being met at the door by a friendly greeter who opened the door for us and finding a seat in the sanctuary, we were warmly welcomed a half-dozen times by gracious church members. I could tell that my friend was getting uncomfortable. Remember he has autism. Direct encounters trigger anxiety, even very friendly and gracious ones. He seemed alright with one or two, but he was starting to shut down and flap his hands as a mean to self-soothing.
He liked that the sanctuary acoustics. Sounds and voices were muted compared to churches that assembled to gym or performance architectures. He seemed to relax.
The congregation reassembled in a large welcoming room following the worship service. Cake and lemonade were available. I wondered how this hospitable “chaos” would work for him. He was ready to leave as soon as he consumed his piece of cake. I bid good-bye to an acquaintance with whom I briefly socialized.
We ride in the car. I ask for his assessment. Here are his highlights:
A man, about his age, greeted my friend in the welcome center while eating cake. The man never made eye contact. The handshake was limp. The greeting welcome was brief, to the point, and ended. My friend was delighted. He believed the other young man was autistic. They shared an understanding without complication. This is a positive mark for that church.
The pipe organ is in tune. That is a major plus.
However, there is little evidence of anybody else in the congregation who lives with a disability. The church has a lot of nice people who will have a hard time understanding what it is like.
The score is:
Church One = 3 (Many people with disabilities. A decent pipe organ. A quiet sanctuary.)
Church Two = 2.5 (Nice organ. Quiet sanctuary. One member might have autism.)
I wonder if church growth experts know about these key criteria.
Next week we visit another church.
This is the continuing adventure of finding a church community for a 40-year man who lives with autism. The previous week I listed a visit to a second church on April 15.
Sunday, April 22, we visit a third church. Fifteen minutes before the posted start time of the worship service, we easily slip through the front door, through the narthex, and into the sanctuary unnoticed. If not for a pianist and three guitarists practicing a piece, I would think we have the time wrong. Soon others trickle in, eventually a total attendance of about 40 people. We have an entire pew to ourselves.
My friend seems comfortable with the white, well-lit ambiance. There is a pipe organ. That is a plus. However, there is no organist.
One older, smiling gentleman maneuvers gracefully about in a motorized chair --- another plus, a sign of good physical accessibility. Everybody else seems well within the 70% distribution cure of normal population.
This Sunday is Communion Sunday. Great! We can join with this congregation in the spiritual nourishment. I am feeling hungry for the blessing in the body of Christ. I alert my friend of the opportunity by drawing his attention to the bread and cup on display up front. He is immediately concerned and asks not to participate. Why? He answers, “I don’t want to touch the same bread that everybody else touches.” I forgot about the obsessive-compulsive, contamination anxiety.
“That’s okay.” I whisper assurance, “You do not have to do something that is uncomfortable. You will be just fine sitting here as I go up.”
The bulletin announced the provision for anybody who needed gluten-free bread. I see the small stand holding the plate of cut bread portions and another chalice. God provides! I whisper to my friend the alternative. All he needs to do is follow my example. He starts up his hand flapping to self-soothe. I take a share of the gluten-free bread and proceed. Looking back, I see my friend is paralyzed at the stand with the pastor whispering to him, I assume, “The body of Christ for you.” Oh, dear! I go back to him to reassure him that he is fine to take a piece of bread and dip it into the grape juice.
The score is:
Church One = 3
Church Two = 2.5
Church Three = 2 (Pipe organ, nice sanctuary)
Did we visit enough churches? Since my friend likes pipe organs, we could visit a couple other churches that are known for their pipe organs and worship excellence. However, the gap between the social norms of any church culture of this order and my friend’s social inabilities may be too difficult to bridge with any well intended social ramp.
I hope to hear from him this week about what he would like to do. Perhaps he would be ready to explore the goodness-of-fit at “church one” for the potential of social ramps he needs to become part of the life and community of that congregation.
Joe, thanks so much for posting your reflections on looking for a new church with your friend. I'm learning so much by reading what the two of you are experiencing. It's challenging for anyone to find a new congregation, and your reflections show that the challenges can increase for some people. I'm hearing in what you are writing a call to churches to redouble our work in becoming hospitable and safe communities.
Mark, thank you for letting me know that what I post here is offering a window for better understanding. As you know, I post for my own sake to primarily help sort out my own thoughts and next steps. It is nice to know that something more of value is being had in the process.
This experience reminds me again that when you get to know a person with autism you know only one person with autism. That is to say, although there are common elements among people who live with autism, each person has an idiosyncratic experience and expression of having to live with the autism. Social ramp creation can never be standardized like wheelchair ramps. If any church wants to enfold a person who needs accommodations because of the autism, getting to know and understand the individual is required. There is no shortcut to creating the social ramp because the ramp will be uniquely specific to the person if that person will have an opportunity to be included in the life of the congregation. It is not likely to have two autistic individuals accommodated by the same social ramp specifications. Each person with autism will have to become known and understood.
Here is an interesting excerpt of an email my friend received yesterday from a pastor of a church outside of the Greater Grand Rapids area. The pastor asked my friend to play a musical piece in the worship service to illustrate a sermon message about God’s tuning process in each of us. The pastor must have heard my friend play the church’s grand piano upon completing a piano maintenance service. The pastor is aware of the autism.
“Thank you so much for your willingness to come and bless us with your music, it means a lot to us!
We will make sure to make you feel as comfortable as we possibly can. I’ll let the leaders know your request, and I’ll make sure that they communicate this to the congregation, and please feel free to play the classical piece. We will love that!
I’m thinking to have you play towards the beginning of the service before the sermon.
A couple of ideas I had, and please let me know what you think about this:
1. Would it be ok for us to communicate with the congregation on Sunday morning your request to leave without engaging in conversation and a little of the why?
2. Also, just wanted to make sure to let you know that you are also welcome to leave early if you think that would help with your anxiety. Of course, you are more than welcome to stay through the entire service, but I just thought this mention it.
Thank you again for your amazing ministry! And for your willingness to be outside your comfort zone, we really appreciate that.
Blessings!”
This pastor’s inquiry and exploration is a great example of social ramp creation. We are looking for a church community that is willing to learn to create the needed social ramps for my friend.
Joe, yes, this pastor's communication shows a wonderful sensitivity to this man, and shows a desire to teach the congregation how better to understand and interact with him both with the invitation to the man to exit the service before talking with anyone and with the request for permission to explain to the congregation why this man needs to do that. Loving hospitality isn't rocket science, but it does take some willingness to learn and engage in new ways of interacting.
A lot happened since my last post on April 25. The following is a brief chronology.
May 6:
My friend decides to visit church #1 a second time. The experience is like watching God’s hand in real time. It includes a cast of characters that no movie director, but God, could assemble.
We are greeted immediately upon entering the door. Crystal (not her name, but something like it) quickly assesses how my friend looks away and reluctantly responds with his usual “dead fish” handshake. She says, “I am so glad you came! Let me find you a good seat!” Her warmth and enthusiasm are genuinely attractive, but seem overwhelming to my friend.
As she seats us, I notice how she unobtrusively whispers sometime into the ear of the older gentleman sitting in front of me. The choreography is perfect. At the right moment, Frank turns around, introduces himself, and welcomes the two of us. He is gentle, kind, and understated. My friend smiles. I feel calm. At the close of the worship service, Frank turns to us again and offers a prayer of peace and blessing.
As we walk the main aisle to exist, another church member nudges my friend on the shoulder and pronounces charismatically another prayer for courage and inner peace. I thought my friend would run, but he did not. He asks me in the car why these people prayed for him. He seemed, although admittedly uncomfortable at the moment, at peace after the fact.
Tom, a leader for the Friendship Ministry, introduces himself calmly and graciously and explaines the ways people of all levels of ability have a place to connect and serve in this church.
Steve exuberantly interrupted Tom. Steve clearly make up for his cognitive challenges and social awkwardness with his infectious enthusiasm. My friend is delighted about Steve because Steve deflects eye contact, avoids touching, and is socially awkward. Great!
My friend wants to visit next Sunday.
I wonder sometimes if it would be helpful to offer color coded names tags for everybody that could be especially helpful for people who live with autism. Red means, “I prefer you not greet me directly. Do not initiate contact. Give me lots of personal space.” Yellow means, “Please do not initiate contact. Let me lead the interaction. If I initiate, be yourself. I am ready for you. Green means, “I am very open for interaction. Please initiate contact with me as is your custom. I like to talk.” The person could, at each meeting, pick their preferred color for that time.
May 13:
My friend is willing to sit behind Frank again. It’s like we fit here because we know somebody and are recognized by name. That’s nice.
My friend points something out printed on the church bulletin. It reads, “Equipping disciples to become neighbors, Inviting neighbors to become disciples.” He anxiously asks, “Does this mean I have to witness and disciple people to go to this church?”
I come up with a quick explanation, not sure it is theologically sound. “That is a neurotypical way is saying that this church has a purpose. It does not mean you have to do this in a neurotypical way. You would do just fine being kind, true, and helpful, being who God makes you to be.” That explanation seems to work for him.
We see Tom again. Nice to see a familiar face. This time he had specific ideas for participating in meaningful, hands-on ministry projects. This is this the first time in my friend’s church experience that he hears about something he could do that did not involve reading, talking in groups, or having to be social.
Exuberant Steve is here again. It seems to me that of all the people my friend meets he is most comfortable being around Steve. Perhaps they could become friends.
The pastor and preacher introduced himself and welcomed us. He sees we are in good hands with Tom.
My friend wants to learn more about becoming a part of this church.
May 20 and May 27:
My friend wants to go to the church without me. Each time I ask how it went he says he really likes the organ. He explains in detail about its base capacity and that this organ is especially well equipped for the size of church building.
There you have it. The adventure of church shopping with a person who lives with autism.
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