Social Skills for Social Media

While social media offers opportunities for parents of special needs children to share information and support, this modern convenience also can allow people to be hurt by intentionally or unintentionally unkind comments. When parents of children with autism make rude remarks, I wonder if they, like their children, may be on the autism spectrum themselves and have difficulty with social skills. Others may be sleep-deprived from taking care of children who stay awake all night, and others are likely understandably upset by the stress of their circumstances. Nonetheless, in order to help each other, we need to remember the power of words and strive to be kind and helpful in what we say to others.

Over the years, I have participated in various online support groups for parents of children with autism. A great deal of what I have learned about autism and parenting children with special needs has come from those wise and caring parents who were willing to share what they have learned from their experiences. Remembering the thoughtfulness of those parents who helped me through the early years of autism, I strive to offer the same support and information I received to other parents of children with autism. However, I’m sometimes surprised when parents of young children with autism deem themselves experts and fail to value advice given by veteran parents. Nonetheless, many of us still share our experiences, hoping to help others.

Last week, a parent shared serious concerns about a child with members of an online support group and asked valid questions while seeking information. Instead of offering sympathy or empathy to a parent in crisis, some seemed more intent on critiquing parenting skills. Perhaps if they couldn’t be nice, they should have been quiet instead. One person kept asking nosy question after nosy question, more like an investigative reporter than a supportive presence. In a sense, this interrogator seemed to be trying to gain all the attention by asking irrelevant questions. At one point, I was waiting for this person to ask the silly question from the movie The Breakfast Club: “Can you describe the ruckus?” After all those questions, this person, who is not a parent, had nothing helpful to offer, which confirmed my suspicion of simply seeking attention.

Another issue that arose in this online conversation was the topic of medications, which is a touchy subject in autism. Certainly, many parents would prefer not to medicate their children. However, for some with autism, medication proves essential to well-being and safety, addressing depression, anxiety, and aggression. Some parents of younger children with autism eschew the use of medication, yet they don’t realize the need until their children get physically bigger and stronger, becoming more difficult to handle when they have meltdowns. Those who tout only using behavioral therapy need to remember that therapy takes time to have positive effects. I know this because Alex has been in behavioral therapy for more than six years with a fantastic therapist; the benefits take time to achieve. Moreover, some parents are on long waiting lists for therapists and cannot get the help they need immediately. Therapy may only be one piece of the puzzle.

Later, some caring parents brought compassion to the discussion. Addressing the parent by name, offering not only good, specific suggestions but also sharing their own experiences and empathy, these parents provided what the parent in crisis was seeking: understanding and guidance. Perhaps these parents reflected upon their own situations and remembered what they wanted to know in similar situations and what had been helpful to them. By being gracious instead of critical, they offered the support that should always be present in a social media support group. Responding to their kindness, the parent in crisis was equally gracious, thanking everyone for the advice and support.

Last week, the Indiana Resource Center for Autism at Indiana University posted one of their terrific social stories on their Facebook page. Written by Kristi A. Jordan, these short stories intended for children with autism provide helpful tips regarding how to interact with others. For Valentine’s Day, the social story suggested, “It is nice to make a card for every person, even if you do not like them. If you do not like someone, remember that is a secret. You should think it, but don’t say it. Keep that thought a secret.” Perhaps, all of us, not just children with autism, should heed that advice. As Alex’s behavioral therapist reminds him in a useful handout: “Before you say something, THINK: Is it true, helpful, informative, necessary, and kind? If not, keep it to yourself.”

Addressing the issue of how to deal with rude people on social media, especially trolls, autism mom Cathy Jameson recently wrote an outstanding essay for Age of Autism. [To read this essay, please click here.] While she specifically mentions the heated debate regarding vaccines, she offers good suggestions for handling any topics of contention. These provided good advice for me at a time I was ready to straighten someone out on social media for making comments I saw as hurtful and unfounded. Instead, I chose discretion and opted not to engage in the debate. As Cathy Jameson advises: “Sometimes it’s best to just walk away and let it go.”

However, she also offers helpful recommendations when engaging in dialogue with others: “When you do say something, I’d suggest doing so without emotion and name calling. When one resorts to name calling, the chance to politely prove a point is immediately lost.” Moreover, she offers a valuable tenet for dealing with others online that also applies in real life: “Encourage people. It’s simple and what we prefer to do.” We may not always agree on every topic, but we can be agreeable in how we treat others.

"Do you have the gift of speaking? Then speak as though God Himself were speaking through you. Do you have the gift of helping others? Do it with all the strength and energy that God supplies. Then everything you do will bring glory to God through Jesus Christ. All glory and power to Him forever and ever! Amen." 1 Peter 4:11

Communicating Kindness

Like many people with autism, social skills do not come naturally to Alex. With difficulties in communication and sensory issues, he can find dealing with others somewhat overwhelming. Nonetheless, he likes interacting with people, so he is willing to be taught the social graces that most people learn more easily. Even at age twenty-six, Alex often needs reminders to say “Hello” and “Goodbye” to people as well as cues to say “Please” and “Thank you.” As a major part of behavioral therapy, his therapist works with him to develop social skills, and Ed and I reinforce these skills many times every day.

Among the social skills his behavioral therapist has taught Alex is reciprocal conversation, that is, learning how to have a give-and-take conversation with another person. She often models the behavior by asking Alex questions and then has him ask her similar questions. With time and practice, he is getting better at making conversation, but he still relies upon prompts. Last week, his music therapist was telling about a recent family vacation. I then asked Alex to come up with two questions he could ask about that vacation. Immediately, Alex asked him the name of the town they visited and how far the drive was to get there. While this shows Alex’s areas of interest––geography and statistics––those were still good questions to show interest in his therapist’s trip.

Perhaps because I have been working on reciprocal conversation with Alex, I am more aware of how people who don’t struggle with autism make conversation. Sometimes, I am surprised by how some typical people run monologues instead of dialogues. As a person who cares about others and asks questions about their families, I’m disappointed and even hurt when they fail to ask about Alex after I have shown interest in them by asking about their children. Unlike me, who takes things like that personally, Ed overlooks the omission and cuts others slack, assuming that they don’t know what to ask about Alex because he has autism. Maybe people are fearful that we would tell upsetting anecdotes, but no matter how things are going, we would always assure people that we are “fine.” However, it’s always nice to be asked anyway.

Recently, one of my favorite autism mom bloggers, Cathy Jameson, posted a terrific article on the Age of Autism website titled “Befriending Autism” regarding the discomfort others may feel about being around someone with autism. [To read this essay, please click here.] Noting that some people aren’t sure what to do or say when they see her son who has autism, she doesn’t want to make them feel more uncomfortable. Instead, she offers, “I thought of a few things they, and others in similar situations, might want to try when they see us next.”

The first four suggestions are simple and direct: wave, say hi, ask (how she’s doing and how her son is doing), and listen to her. As someone who likes mnemonic devices to remember concepts, I would use the acronym LAWS (listen/ask/wave/say hi). Her fifth suggestion may require more effort: “Be you.” She goes on to explain that she wants to catch up with the other person’s news, but she would also appreciate the other person talking to her son, even though he can’t respond verbally. However, as she explains, he can hear and see and recognize whether people are genuine or not. More importantly, she states, “When you shower him with kindness, you shower all of us with kindness.”

Because we have been blessed with people in our lives who have shown Alex special kindness––even some of whom we barely know––we have seen that the tips Cathy Jameson offers work wonders. Few things please Ed and me more than when coworkers or friends ask us how Alex is doing and make it even sweeter by asking us to say hello to him for them. Parents like to be asked about their kids, and autism parents are no exception.

From having observed kind people interacting positively with Alex, I can make a few suggestions about how someone might talk to a person with autism.

1. Call people by name first to help get their attention. Alex is often overwhelmed by all the sensory stimuli around him, but his ears perk up when he hears his name.

2.  Realize that the person may appear to be ignoring you, especially because eye contact is often difficult for people with autism, but they are probably paying more attention than you would ever think.

3.  Find out from parents what the child’s current interest is so that you know what questions you could ask. For example, one of the ladies who works at a nearby fast food restaurant shares Alex’s love of the Chicago Cubs, so she asks him what time the next game is, knowing this is something he’s happy to tell her.

4.  Offer a sincere compliment. “I like your shirt.” “You have a great smile.” “You’re being so patient.” “I’m so happy to see you.” Not only did these nice comments please Alex, but they made his parents proud, too.

5.  Give the person plenty of time to respond to a question. Alex takes time to process what is said to him and more time to come up with an answer. Sometimes parents may intervene by repeating or rephrasing the question or by cueing the child to answer.

While interacting with children and adults who have autism may be uncomfortable, even simple gestures, such as waving or saying hello, can mean a great deal to people with autism and their families. For one thing, these situations enable people with autism to practice their social skills. Certainly, those who make the effort will likely find themselves endeared to the parents of the child with autism. Those who engage Alex in conversation may witness the shudder of joy, in which puts his hands between his knees as he grins and shudders, trying to contain how happy he is. In addition, those sweet souls may become part of Alex’s nightly prayer list. I have to think that, indeed, God will bless those whom Alex names, knowing that their kind gestures touched the heart of a young man with autism.

“Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness, and patience.” Colossians 3:12

Kind Words in an Unkind World

 

“Maybe it’s the movies, maybe it’s the books.

Maybe it’s the government and all the other crooks.

Maybe it’s the drugs, maybe it’s the parents.

Maybe it’s the gangs or the colors that we’re wearin'.

Maybe it’s the high schools, maybe it’s the teachers.

Tattoos, pipe bombs underneath the bleachers.

Maybe it’s the music, maybe it’s the crack.

Maybe it’s the Bible, or could it be the lack?

Come on people now.

Smile on your brother.

Everybody get together.

Try to love one another right now.”

“Right Now” by Cheryl Wheeler and Chet Powers

In a recent speech on vaccines and autism at Duke University, vaccine scientist and patent holder Dr. Peter Hotez made a rather bold and vindictive statement regarding organizations that question the safety and effectiveness of vaccines. Describing these groups, he is quoted as saying that they “camouflage themselves as a political group, but I call them for what they really are: a hate group. They are a hate group that hates their family and hates their children.”

Since many parents of children with autism believe that vaccines played a harmful role in our children’s health, he has falsely accused us of hating our children. Clearly, he believes vaccines play no role in autism, as he has written a book about his own daughter who has autism: Vaccines Did Not Cause Rachel’s Autism. Certainly, he is entitled to his opinions regarding the cause of autism in his own child, but casting aspersions on other parents is not necessary.

One of the problems in dealing with the autism crisis is the strong division between the factions who each firmly believe they know the true cause. Moreover, those who believe that vaccines play no role in autism often are dismissive of those who have witnessed first-hand vaccine reactions in their children and patients. Until a definitive cause (or causes) can be established, autism researchers need to work together to find potential triggers of the disorder so that autism can be prevented and cured.

Adding to the confusion surrounding how best to treat autism is the concept of “neurodiversity” in which high functioning people with autism tout the virtues of autism and insist that parents of children with autism should not try to cure them because they are fine the way they are. However, many parents recognize that our children have medical issues, such as seizures, allergies, and gut dysbiosis, that must be addressed. In trying to make our children healthy, parents are again unfairly made into villains who despise our children.

Considering the current climate of hatefulness in the mainstream media and social media, where people feel free to call names and demean anyone who does not share their views, this schism in the autism community is not surprising. The mentality of “Us vs. Them” pervades our society, and it’s easier to assign blame and make nasty remarks than to try and see the other position. Nonetheless, this divisiveness––whatever the controversial issue discussed––does nothing to solve the problems of our society. Until everyone is willing to listen respectfully to others and try to work together, not only will conflicts continue, but also societal issues will remain that could be resolved with cooperative efforts.

Last week, as I eavesdropped on Alex’s behavioral therapy session, his therapist was explaining to him the importance of keeping certain thoughts and comments to himself. With autism, social skills often must be taught, but this lesson seems to have value for everyone. As she explained that some words could be hurtful to people, Alex seemed to grasp the old adage, “If you don’t have something nice to say, don’t say anything at all.” Their conversation reminded me of a poster I had hanging in the middle school classroom where I taught for many years that advised, “Is it true? Is it kind? Is it necessary? If the answer to any of these questions is no, then keep it to yourself.” If Alex with his autism-impaired social skills and my middle school students could comprehend the concept of using restraint in making unkind remarks, adults should be able to do the same. Certainly, we should try to keep our cruel comments to ourselves to avoid hurting others, especially in this negative social climate.

A few days ago, I stopped by the pharmacy to pick up a prescription. As I was chatting with the pharmacist, I heard another pharmacist ask me if I was Alex’s mom. When I looked over, I recognized her as the pharmacist who had been especially helpful in December when we were having trouble getting one of Alex’s medications. [I wrote about this incident in my post “All Is Calm; All is Bright” on December 24, 2017.] Because she had sympathetically listened to my concerns and diligently worked to solve the problem by tracking down the medication, I had written her a thank you note expressing my gratitude for her kindness as well as her time and effort to help me.

A little surprised that she recognized me, I told her that I was Alex’s mom and remembered her from our conversation several weeks ago. She explained that she appreciated my note, which she said had “made her cry because it was so sweet.” She went on to tell me that she has saved the note and pulls it out anytime she is having a bad day. Explaining that pharmacists often take verbal abuse from customers, she appreciated my kind words. Of course, I was pleased that my simple note had meant so much to her, but I was also reminded of the power of words and how we can bless or curse others with them.

For those like Dr. Hotez and the neurodiversity movement who mistakenly believe that parents like me “hate” our children, I can assure you that I love my son unconditionally and will move heaven and earth to make sure he reaches his full potential. With the help of God, therapists, doctors, and pharmacists who care about Alex’s well-being, Ed and I will continue working to restore Alex’s health so that he can enjoy life to the fullest. Moreover, we will strive to teach him by example the importance of kindness so others can see the pure heart and sweet spirit God has given him.

“Kind words are like honey––sweet to the soul and healthy for the body.” Proverbs 16:24