Travel as a Mode of responding to Autism Spectrum Disorder: One Family’s Journey

Autism spectrum disorder (ASD) is a neuro-developmental disorder, characterized by behavioral deficits. To receive a diagnosis of ASD, individuals must exhibit two of the four following symptoms: (1) excessively repetitive motor movements, object use, and speech; (2) insistence on sameness, inflexible routines, or ritualized behavior; (3) abnormally intense interests, or interests marked by an unusual focus; (4) a hyper- or hypo-sensitivity to sensory stimuli (american Psychiatric Association 2013; World Health Organization 2018). My son Hayden, now a nine-year-old chinese boy, was diagnosed with ASD and moderate intellectual disability five years ago, and our odyssey for intervention has continued since. According to Zhou et al. (2021), early diagnosis and treatment of ASD proves problematic in China due to the following four challenges: scarcity of child psychiatrists and pediatricians, lack of early screening, insufficient awareness of ASD among the general public, and the economic imbalance between the rural and urban areas. Admittedly, here in mainland China, parents find themselves catching at straws to secure support and resources. Fighting the odds, I have poured my energy into acquiring Applied Behavior analysis (ABA) skills via reading, attending lectures, and experimenting with Hayden. To give him respite from his daily routine and broaden his horizons, I began to take Hayden exploring, hoping to show him the world through a variety of lenses.

Bringing Hayden out into the world instilled me with a conviction that individuals with ASD ought not to be confined within the home, as they cannot, for example, absorb social norms while deprived of opportunities to explore the outer world. Still, it is easy to see why parents hesitate to expose them to the wider world, as they tend to be unpredictable, and their behaviors frequently break social norms. As a matter of fact, outbursts can easily provoke reprimands from those not furnished with an understanding of a child’s condition. In fact, only after travelling did I fully understand how important it is for Hayden to access the more complicated social norms outside his home and local community. Prior to Hayden’s first major travelling experience, we were obliged to strategize for all imaginable circumstances. The plan we formulated fell into four parts as follows: familiarizing our child with a novel environment and routine; providing him with comfort and support; responding to sensory needs and challenges; and coping with sudden changes. Our strategy to acclimatize Hayden with the new environment and routine is related in the following as a reference and possible approach for those aspiring to assist their child in a similar fashion.

Familiarizing the Child with a Novel Environment and New Routine

• Prior to setting out, we familiarized Hayden with the airport through exposing him to photos and relevant storybooks, while providing adequate information concerning the boarding process.

• We made a trip to the airport before the departure date, and we introduced him to the public environment. As noises from the intercom and crowds can be triggers, we imagined the unexpected and made relevant preparations. We observed how our child reacted in the environment and identified effective reinforcers (reinforcing preferred items or activities), which could come in handy on a “real” trip.

• Using a visual itinerary, a highly beneficial resource for children with ASD, we acquainted our child with the 5W1H (Who, When, Where, What, Why, and How) of the traveling plan. In addition, as guardians, we have found that maintaining a sense of calm and remaining mentally prepared for the unexpected were essential to reducing our child’s anxiety.

Providing the Child with Comfort and Support

• A toolkit of soothing devices was readied, including snacks, an empty water bottle, a comforting toy or blanket, and headphones to eliminate unpleasant sounds.

• Due to the fact that internet service is not necessarily provided on the plane, or under certain circumstances, the internet connection may be slow and unstable, we downloaded our child’s favorite songs and videos.

• Our reinforcement schedule was based chiefly on a Continuous Reinforcement Frequency (CRF), which indicates reinforcement provided on each occasion, subsequent to the desired behavior, in continuous schedules (Cooper et al., 2020). Another highly useful tool is constituted by Differential Reinforcement (DR), in other words, the process of reinforcing a specific response in a particular context while refraining from reinforcing or extinguishing other responses (Boone, 2018). Ultimately, the reinforcement scheme proves more flexible in the natural setting: we employ various reinforcers in rotation, resulting in opportunities to furnish positive “surprises”, awarded for better performance. For example, upon completing the token board, our child usually receives a snack, or access to the video games on the smartphone, or the opportunity to participate in an activity he enjoys. The philosophy involved is to catch him when he is modeling the preferred behavior, thus generalizing skills acquired in classroom settings, therapy or from home.

• During the trip, visual support was provided. For example, a visual diary concluded the day.

• In carrying out this part of the plan, we printed the photos we took in the daytime and reflected on what we had done. In Hayden’s case, due to his difficulties in writing full sentences, I would narrate aloud and jot down vocabulary, an exchange in which the quality of interaction surpasses the quantity of words.

Dealing with Sensory Needs and Challenges of the Child

• When available, we utilized toilets designated for individuals with special needs. For many children with autism, using public restrooms proves highly challenging due to their sensory issues. For Hayden, choosing a better-equipped washroom with fewer stimulants greatly reduced stress levels.

• Wearing masks at the airport and on the plane, obligatory during the COVID-19 pandemic, present a new challenge for many children with autism. As a result, we approach the wearing of masks with mindfulness, as it could represent a trigger to high anxiety and consequent behaviors.

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Coping with Sudden Changes

• As parents, in order to address phases of acting-out behaviors, we found it helpful to use the De-escalation Cycle (Colvin & Sheehan, 2012). Generally, stages of behavior escalation for individuals with ASD include calm, trigger, agitation, peak, de-escalation, and recovery. We provide different areas of focus and intervention tips for different stages (see Table 1).

Table 1.

Stages of Behavior Escalation for Individuals with Autism Spectrum Disorders (ASDs) and/or Developmental Disabilities (Colvin & Sheehan, 2012)

Behavior Escalation Stage	Description	Area(s) of Focus	Intervention Tips
1. Calm	An Individual is relatively calm and cooperative.	Maintaining a clear, consistent, productive environment and building rapport with individual	Establish a consistent environment Use visual supports to clarify expectations Address sensory issues Teach other ways to communicate feelings, wants, and needs Pre-correct problem situations
2. Trigger	An Individual experiences unresolved conflicts that trigger behavior to escalate.	Preventing and redirecting the individual’s behavior	Remove the trigger If not feasible to remove, weaken the trigger’s impact by adjusting it or preparing the individual for how to handle it Guide and support the children with ASD to use alternative replacement behaviors
3. Agitation	An Individual is increasingly unfocused/upset, may exhibit avoidance, or may exhibit a loss of rationality.	Reducing the individual’s anxiety and increasing predictability in the individual’s environment	Use non-confrontational non-verbal behavior Break down directions into smaller steps Give “start”, instead of “stop” directions Use short phrases and allow processing time Remind the individual to use replacement skills
4. Peak	An Individual is out of control and may have temporarily lost the ability to think rationally or may exhibit severe behavior.	Maintaining a safe environment for the individual in crisis and people around	Isolate the individual by removing the audience Call for help if needed Provide calming sensory input or allow the individual to use relaxation techniques Do not chastise/threaten consequences at this point in the escalation
5. De-Escalation	The severity of an individual’s behavior subsides, and there is a drop in the individual’s energy level after a crisis.	Helping the individual regain emotional control and demonstrate cooperation with neutral requests	Allow the individual enough time to regain calm Provide calming sensory input and allow the individual to employ relaxation techniques Ensure that the individual has regained control before proceeding; look for a less tense appearance, regular breathing, and willingness to comply with small requests
6. Recovery	Individuals may feel shame, sorrow, fear, or regret and may not verbalize feelings or reflect details of outbursts.	Debriefing or solving problem and then transitioning individual back to the task at hand	Allow the individual to return to a familiar task Try not to eliminate the original request, limit, or consequence so the outburst is not reinforced Problem solve and develop a plan for better future behavior

According to our experience, this cycle is crucial, as it better pinpoints certain situations and timing, increases the possibilities of our tactics working, and it can make the trip more accessible and more enjoyable for both the parents and the child.

• Although we did our utmost to be fully prepared, upon occasion, the acting-out behavior is simply destined to take place; in these cases, the disturbing or even disruptive behavior is better handled privately: we usually take Hayden to a quiet place and use the toolkit to help him calm down. In those instances when the behavior cannot be dealt with in a quiet and private location, we may inform people in proximity that the child has autism and feels anxious at the moment, which usually garners understanding and support. As an added measure, we turn to the Antecedent-Behavior-Consequence (ABC) Analytical Method in order to analyze Hayden’s reasons for uneasiness and anxiety(Cooper et al., 2020). Antecedent refers to the circumstance preceding the behavior, with respect to which, we usually pay attention to the following elements: subject, demand, individuals at hand, instruction, and so on. “Behavior” refers to what the specific behavior looked like and how long it lasted. Consequence focuses on what happened following the behavior.

• Last but not least, we have discovered that, as parents, we must do our utmost to remain calm and relaxed, as children are easily affected by parental emotions, and calmness proves equally as contagious as fear or panic.

As of now, since the age of four, Hayden has traveled to more than ten cities in China and to six other countries, a possibility beyond imagining during our first 40-minute car trip to a neighboring city at the start of our journey of acquainting Hayden with the wider world. At present, he can abide a 10-hour flight, which means that he can experience countries halfway around the globe. I learned that acclimatizing our child to varying means of public transportation and learning how to adjust behavior to the rules is vital, a steppingstone to opening up the outside world to our child. During trips, I continually encourage Hayden to participate in all kinds of activities: taking a helicopter ride, working on a farm, parasailing, trying roller-coaster rides, and adventuring in water parks. ABA enables me to understand the uneasiness he goes through and the intolerance sometimes spurred by these activities. Indeed, by diversifying the tasks and providing sufficient scaffolding, Hayden has taken on such challenges. In terms of level of enjoyment, his experience may not approximate that of other children, yet I fully understand that he gives his best and deserves encouragement and praise. Hayden’s case demonstrates that, given understanding and support, children with autism can achieve their potentials, which enables them to gain increased confidence.

It should be pointed out that, unfortunately, raising a child with ASD can entail significant costs, which may present tremendous challenges for many families. Nonetheless, I hasten to point out that the coping strategies described above may be applied flexibly, functioning equally well for local travel and outings, ranging from going camping to picnicking in a nearby park.

From our perspective as parents, we wish to embrace the full adventure of life, and we accept the reality of autism, but we felt that ought not to prevent us from introducing our child to the world. Thus, the journey continues, and we remain ready for the unexpected along the way.

Compliance with Ethical Standards

Conflict of Interest

There were no conflicts of interest in this study.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.