Autism: Spectrum of Beauty

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TWHOne average hot summer day, a 30-something woman and her 5-year-old boy entered a suburban public pool space. Brimming with youthful excitement, the child, who was unusually large for his age, awkwardly bounced around his mother’s legs in anticipation of a good swim. As the woman unloaded her bags, filled with toys, snacks, towels and other pool needs, onto an unoccupied reclining chair, the child approached a sunbathing adult and introduced himself.

[Photo Credit: Drink Hoist / Flickr]

[Photo Credit: Drink Hoist / Flickr]

“Hi. My name is Matt. I’m going to go swimming,” he said with a cheerful smile. Then, he proceeded to look through the stranger’s bag for pool toys. The mother quickly came over, redirected her son and apologized. Fear, desperation and helplessness were written into her face and underscored her apology.

“I’m sorry. He has autism,” she said and led him away. She had done this many times before. It was a common happening, and she was clearly exhausted. While that seemingly benign moment may have been a daily occurrence, it was not this particular type of interaction that had etched the many stress lines into her face and justified her daily caution. But her underlying fear and nervousness were justified only a few short hours later. 

On that hot Saturday afternoon, the small community pool had become increasingly crowded. Adults and children were everywhere, eating, talking, playing and listening to music stations. The stereo, from where the music came, sat high on a shelf in an open pool house and could be heard throughout the space. In the past, it was not uncommon for the stereo to be a source of tension as adults argued over station and volume. But on this particular day, the stereo became the catalyst for a much bigger and more difficult community battle.

The music had been upsetting Matt, the autistic child. Throughout the day, he repeatedly climbed onto a dangerously high counter top to shut the stereo off. In response, the mother had to retrieve him, expressing apologies, offering explanations and making repeated requests that the stereo be left silent. Many of the pool-goers had personal iPods or were reading books, so to her this seemed like a reasonable request. And, at first no one cared, but eventually, as more people arrived, that changed.

“You need to control your child,” said one newly arrived older man.

The rising tensions between the crowd and the family only worsened when a woman left the pool’s front gate open, while she went to smoke. The autistic child saw the opening and excitedly ran out into the parking lot. Once again, the exhausted mother quickly retrieved him, and then shut the gate. This angered the woman outside, who promptly returned, yelling at both the mother and her newly-arrived husband.

“You don’t belong here,” she screamed. “We are not going to change our rules for one child. You need to control him.”

By this point the father had had enough. He was yelling uncontrollably at this woman and her husband as well as the group wanting to control the radio; his pain and frustration seethed through his pores as he shouted profanities into the crowd. The mother was left cowering in a corner crying, and the entire pool deck was held hostage by a volatile situation, which only ended when the police arrived and escorted the family from the public space.

That is a true story. It is an extreme story, and one that didn’t need to end that way.* 

April is autism awareness month. It’s an opportunity to focus on the realities of living with an autism spectrum disorder, either as a parent or as an affected person. During this month, advocacy groups and individuals hope that communities will not only take a moment to become more educated about the limitations and needs of those with autism, but also recognize the unique beauty that emanates from these lives.

Autism-Awareness-2014

[Courtesy of BrightSong Pediatrics]

Vicky Bailey, a Pagan, Reiki master and poet, was recently diagnosed with Asperger’s syndrome. She said:

This diagnosis came as a blessing. It helped me to begin to make sense of my life experiences, and to appreciate who I am. As I teenager I was seldom interested in meeting up with friends and going shopping. I much preferred my own company, and that of my books. This withdrawal from social interactions allowed me to pursue my childhood fascination with ancient mythology and ancient cultural practices. […]I later learned that autistic children will often have an extremely obsessive fixation with a particular interest, and display a deep fascination and in-depth knowledge of the interest that appears beyond their years.

What exactly is autism or the autism spectrum disorders? The Center for Disease Control defines it as “a group of developmental disabilities that can cause significant social, communication and behavioral challenges.” The National Institute for Neurological Disorders and Stroke defines it as “a group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction. The symptoms are present from early childhood and affect daily functioning.”

These are simplistic clinical definitions, which define the conditions as “disorders.” But autism is far more than that. When you are part of a world affected by autism, you are forced to make difficult life adjustments, anticipate problems, find creative solutions, and equally appreciate the unique and brilliant qualities that can emerge.

We spoke to two Pagan parents who are raising children “on the spectrum,” as it is termed. Allyson Szabo is a White Winds Wiccan living in Jaffrey, New Hampshire. She is a licensed minister and is self-employed. Szabo is the “step-mum” of four children on the spectrum, as well as living with a husband on the spectrum. Pauline Kennedy, better known as Potia, is a Polytheist Druid, and member of the Druid Network living in Glasgow, Scotland. She is part-time university administrator and the mother of two children on the spectrum.

Szabo talked specifically about her two sons Dale (22) and Mike (10), who both have formal diagnoses. Because the family had already been through the process with Dale prior to Mike being diagnosed, they were somewhat prepared. Szabo said, “It was stressful, as any ‘deviation from the norm’ is stressful. You want your children to be ‘like everyone else’ because it just makes things easier. But it didn’t phase [sic] us, and we all worked to make sure that Mike got everything he needed to be successful at whatever he tried.”

Kennedy’s two children, Rose (8) and Rowan (14), were both diagnosed at age six. She said, “My initial reaction on having the diagnosis confirmed in both cases was complex.” She first gathered all the data and information that she could. But emotionally she said that she “felt a combination of relief and a form of grief.” The relief was in the confirmation of her suspicions and her ability to move forward in helping her children. The grief was in the letting go of the many “dreams and aspirations” that she had for them. She added, “Being a Polytheist was helpful in reminding me that there are many ways and many paths.”

"The Autistic way to play" [Photo Credit: By Kevinfruet via Wikimedia]

“Autistic way to play” [Photo Credit: By Kevinfruet via Wikimedia]

Parents of children on the spectrum must learn an entirely new language, so to speak, to help their children interpret a world that was not made for them. And vice versa, they also have to help the world understand their child. Bailey explained:

For me, as is for most autistic people, human beings are an enigma. At times speaking to another person is like having a conversation in two separate languages. I cannot recognize certain types of humor, and often have trouble detecting sarcasm. I also take terms and phrases literally. For example if someone said to me ‘If we don’t finish this in time we’re done for.’ I would panic. Feeling as if the whole world would end.

Most autistic people must learn how to communicate and cope with the world through non-autistic parents and educators. Szabo’s son Mike had an advantage. She explained, “[Mike] learned how to deal with the world by watching [an autistic] parent.” She said that he doesn’t feel “set apart” from his family, and added, “The worst thing he’s had to deal with is sometimes we have to say, ‘Hey, let’s go talk to Daddy, ’cause I’m not getting what you’re saying and Daddy translates from autism to norm pretty well.” Now, her son will often go directly to his father for communication help.

The personal and family challenges abound as adjustments are made to living with an autism spectrum disorder. Kennedy said, “This is my life; this is our life as a family. You grow, you change, you adapt. I can’t really compare it to anything else as this is what it is for us.”

One of these adjustments, common to any family, is the decision when and how to introduce spiritual traditions and religious teachings to the child. That is no different for autistic children. Both Szabo and Kennedy have exposed and included their children in many aspects of their personal practice. As an interfaith minister, Szabo celebrates many religious holy days in her own home and also runs a small coven. She said that Mike has “grown up knowing a great tolerance for all religions and rituals.” However, she said the only thing that “has stuck that is even remotely Pagan” is meditation. And Szabo believes these technique, which Mike now uses on his own, have helped him better cope with the world.

Like Szabo, Kennedy is also open about her practice and emphasizes religious tolerance. She said, “My son has never shown much interest in spiritual matters. My daughter has chosen to join me in some of my home based devotions, in particular she enjoys taking part in devotions to Brigantia and Maponos […] She helps me arrange libations and offerings and usually dances around me while I sing songs of love and praise.”

But neither Szabo or Kennedy feels comfortable taking their autistic children to public Pagan events. Although they both feel their Pagan communities are compassionate and tolerant, they don’t feel these crowded forums are healthy for the children. Kennedy said, “My son has problems meeting new people […] My daughter loves meeting new people but it would currently still be very difficult to manage the level of disruption that would result in her running around, aggressively hugging everyone and her need for a high level of attention.”

It is common for autistic children to have difficulty understanding personal boundaries, making public situations all the more trying. Bailey has experienced this as a adult. She said:

While many pagans attend social gatherings or are part of a coven. I have never been able to do these things because of my lack of social understanding. I would not know where to begin For this reason,  I walked my path without human company for many years, and for a while that was OK. I have never craved social interaction, yet I could not shake feeling of loneliness.

While Szabo hasn’t taken her son Mike to big events, he has been around her small coven. She said, “I think that there is a lot more acceptance of spectrum people in the Pagan community, at least around me. I’ve never had complaints from anyone, and I’m always told Mike’s a joy to be around.” She added that her coven mates are also “understanding of her husband.”

But Szabo did have one recommendation for event organizers. She said that it would be beneficial to have a “low sensory input” area. These places ideally would not be filled with the typical drumming, talking, incense, color, music and fire. She said, “Knowing there’s a place quiet and less overwhelming can be a real help to people on the spectrum, and we parents as well.”

Edinburgh's Beltane Fire Festival. Photo by Paul R Seftel.

Edinburgh’s Beltane Fire Festival. [Photo by P. Seftel]

Despite the limitations and the hurdles, the three women with whom we spoke, continually remarked on the beauty, intelligence and love that emanates from the people affected by what the medical community has called a “disorder.” Bailey spoke of how her own condition has led to a unique ability to spiritually engage with the faery realm. She said:

I have an inherited gift for communicating with other realms. I am a natural medium, and am fortunate enough to have been made aware of the Faeries that exist in a realm parallel to our own. When I speak with them I have no difficulty understanding their meanings at all. Unlike humans, they seem to get right to the point, and if they cannot make themselves understood with words they are able to use mental images, and the transference of ’feelings’ and sensations to make themselves understood.

Bailey attributes this gift of communication directly to her autism, and also thanks her partner, who also is affected by Asperger’s syndrome, for helping her “discover and appreciate” her gifts.

Szabo and Kennedy speak of their children’s compassion, intelligence and fascination with various difficult and complex subject matters. Kennedy said, “Autism is an integral part of them both but it does not define them.” Szabo said, “Our children have grown up knowing that autism is a super power, and that one has to use it for good or evil, just like any other super power.”

All three women also stressed that the biggest hurdle for them, going forward, is simply awareness. That includes awareness within Pagan communities as well as within society in general. According to the Center for Disease Control and Prevention, 1.5 percent of the American population (1 percent of the entire world) is affected with the condition, and they do not know at this time whether that rate is still increasing or if it has leveled off.

Szabo said, “I think tolerance is the greatest thing we offer our children.” She believes that her own religious journey has helped her become more tolerant, and has made it easier to adapt to and appreciate the unique worldviews of her autistic family members. “In Paganism, we should find it technically easier, because we’re wanting tolerance for ourselves and therefore should be practicing it at home.”

She added, “Please understand that when my kid walks away while you’re talking to him, it’s not because he wants to be rude.” He is just overwhelmed. She added that autistic children need more time, respect and understanding. She also stressed that, when they do want to talk, “it’s just as important to let [them] get their ideas out. Often times, you’ll learn more from them by listening, than normal children will learn by your teaching.”

Similarly Kennedy emphasized the need to educate ourselves. She said, “How do we improve things? By asking what we can do to help and more importantly listening to those in our communities who are autistic themselves, willing and able to explain their challenges and to those who care for an autistic friend or family member.” And she added that we need to “accept and value our differences.”

There are many organizations out there working to foster awareness and breed tolerance. In the U.K., Kennedy recommends the National Autistic Society and Autism Triage Scotland. And, she added, “as a self-diagnosed adult autistic woman, I’m also a member of the Scottish Women’s Autism Network (SWAN).” In the U.S., there are organizations such as the National Autism Association and many more. But Szabo’s family steers clear from big organizations. She feels that they are more interested in a “fix” than growing acceptance. Instead, Szabo recommends becoming involved in local play groups and small, community-based organizations that are run by people affected by autism and that provide concrete family support and safe spaces for education.

Bailey, who has since become a published poet and embraced her condition, concluded by saying, “I feel that [autism] has had a distinctive impact on my journey as a Witch, be it for better and or worse, although overwhelmingly I believe that it the impact has been positive. It is a part of me, my strength and my weakness. Everyone has both inside them – strength and weakness, light and darkness. We are after all only human, and the trials we face both as Witches and as people help to make us who, and what, we are today.”

* This incident took place July 2015. Names have been changed or omitted for privacy sake.