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.
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