Monty in Mardin – on the Silk Road with Autism

Mardin is a city in Southeastern Turkey on the overland Silk Road (in red)

Today’s post does not have any science.

Just after the new year Monty went to southeast Turkey to visit Mardin, an old city that was on the Silk Road linking Asia to Europe and then to see more of Istanbul.

Travel can be difficult for people with autism, even fully verbal people with above average IQ.  Some people with Asperger’s refuse to fly because they fear the plane is going to crash.  Exaggerations and distortions of normal perception are actually examples of psychotic behavior, in the extreme these are the "positive" symptoms of schizophrenia.  This loss of touch with reality does feature to varying degrees in some Aspies.

Monty started to fly while still a baby and, in spite of a few glitches along the way, has become quite a seasoned traveller for a 16 year old.  

The latest trip was a little off the beaten track for western tourists, in fact we did not see any other western tourists, just a few people visiting from Istanbul.

Mardin is an old town built up the side of a small mountain giving panoramic views across Mesopotamia.  All the old merchant’s houses have large terraces facing the same direction, so they could see incoming traffic from the Silk Road.

Mardin

            A merchant’s house in Mardin

The Front Door of the Deyrilzafaran Monastery

Midyat, a three-thousand-year-old city

Passing for Normal

The Holy Grail for treating someone born with severe autism is just passing for normal.

Passing for normal may not be politically correct, but it is practically correct in actual daily life.

Two recent events stand out in my mind. Walking around the narrow streets of Mardin we entered one of the most impressive old houses.  In the courtyard was a security office; it was clearly was some kind of official building. On the large upper terrace, with the stunning view over Mesopotamia, was a well-dressed man and we started a conversation in English.  He beckoned us to come up past the security guard and see the old house.  It is now used as a school for tourism and hotel/catering.  He offered us Turkish tea and was telling us all about the history of the building and the city.

At first, he thought Monty was a local boy acting as our guide, then later on he turned to Monty and said “what are you going to study later at University?”.  Instead of me having to explain that Monty has autism and so probably will not be going to University, Monty just answered “science”.   Bravo Monty.

The other recent event was the school’s poetry night, when they combine music recitals with poetry readings.  Monty went up on stage for his piano recital, bowed at the end and, as the school principal pointed out to me later, what you saw was just another quiet teenager with some musical talent, not the token one with a disability.  She has known him for 13 years and did not expect him to cope in high school, even with his assistant. Bravo again, Monty.

Unlike how autism is now portrayed in media, people with autism often do look very different and act very differently to other people.  The looking different part could be used to identify the underlying biological cause, but usually is not.  The acting different part is often the result of behaviors learned from their autistic peers and then reinforced by them.  This is a big disadvantage of special schools and group homes, “odd” behaviors get copied until everyone has them.

In a somewhat bizarre twist of nature, sometimes the unusual facial features show up instead on the sibling of the child with autism.  This was recently highlighted again in the research.

Back to Istanbul

Istanbul is one of the world’s great cities, with an amazing location on the Bosporus which connects the Black Sea to the Mediterranean.  It is full of interesting things to see and is great value.  The overland Silk Road ended in Constantinople, now called Istanbul; goods then moved west by sea to Venice.

Istanbul is a good place for people, like Monty, who like to eat fish and also all kinds of cakes and desserts.  Monty even acquired a taste for drinking Turkish tea in small glasses. There are some good, very child-friendly, museums, with parent-friendly admission prices.

Seagulls with the Dolmabahçe Palace on the European side of the Bosphorus in the background

The Rumeli Fortress in Europe and the third Bosphorus Bridge, leading to Asia

Life before the PolyPill

The summer before Monty started his autism Polypill in 2012, we went to Portugal. I still clearly remember having to pin him down in his seat with my arms and legs, as he went berserk in the plane. We had rented a car, but we could not leave Monty in the back with his older brother, because he would attack him.  That was travel with a 9-year-old with medically untreated severe autism.

Expect the unexpected

As our reader Tanya, recently commented, life with autism is always full of surprises, to be overcome.  It is perhaps an adventure you would rather not be on, like a trip with Bear Grylls.  

We still encounter some travel issues, but they are now trivial.  Monty’s ears do not pop when the plane lands and then they hurt and this affects behavior.  The first solution was his idea, jump deep down into a swimming pool.  Ears pop and the problem is solved.

Recently this developed into not swallowing after the plane has landed.  Mouth fills up with saliva, so you cannot talk and also your face bulges and the automatic face recognition at passport control does not work.

I did earlier have Monty’s ears checked and the ENT doctor found nothing, but suggested using the Dymista allergy nose spray containing Azelastine and the steroid Fluticasone. We already have this and it does not help ears pop.

The solution I came up with is to bring a sports-type water bottle on the plane, the type you have to suck to get the water.  During the last 10 minutes of the flight, suck the water, swallow, then squeeze your nose tightly and try to swallow several times.  It works, one problem solved and now we await the next one.

Autism flare-ups, sudden onset vocal or motor tics have all come, been figured out and then been overcome.

Autism and vacations in the literature

Researchers even publish papers about holidays/vacations taken by people with autism.  In short, autism families rarely have holidays and when they do it can be quite stressful for everyone.

The key to happy holidays is medically treating severe autism. 

Holiday, What Holiday? Vacation Experiences of Children with Autism and Their Families

This work aims at identifying the types of holiday experienced by families of children with autism spectrum disorder (ASD). 35 families of ASD children and 25 control families of children with Down’s Syndrome (DS) living in Scotland took part in a small scale semi-qualitative study to explore their experiences on holiday. In both groups, a significant proportion of the families had not taken any holiday away from home more than once in the last 3 years and there was limited use of children holiday centers. Families of ASD children who had been on holiday expressed overall less positive impressions of their experiences and showed limited use of public places such as restaurants, cafes, cinemas and hotels normally accessed by typical families whilst on vacation. Five areas were identified as influencing the quality of their experiences: 1-child’s disability, particularly with regard to behavior, 2-lack of suitable holiday structures, 3-financial limitation of the family, 4-lack of empathy from surrounding communities towards the disabled child and his or her family, 5- general state of exhaustion of the parents. The paper further describes two pilot holiday community experiences organised with 10 families with ASD children in an attempt to address some of the issues hereby identified. A retrospective analysis of these experiences and surveys suggests that amongst all five identified barriers, the issue of the child’s behavior is the most significant difficulty encountered by these families. Supporting families in understanding and improving their child’s’ behavior is needed to enable families to maximise their experience on holiday. Increasing the understanding of the condition, improving access to leisure activities and some financial aid would equally be beneficial

  

Tourism and autism: Journeys of mixed emotions

There is an evolving tourism literature around psychological wellbeing, social exclusion and disability. This paper advances tourism knowledge into the terrain of psychological health and developmental complexities, and psychological distress. It draws on a phenomenological position to understand the lived experiences of mothers of children with developmental difficulties, in this case diagnosed with autism spectrum disorder (ASD). It discusses the emotional and everyday challenges of caring for a child diagnosed with ASD on holiday, discusses the perceived benefits holidays offer and outlines care-giving strategies adopted by mothers to manage their children’s tourism experiences. The paper discusses the uniqueness of the context of autism and problematizes popular discourses, which predominantly frame tourism as pleasurable settings of escape, stimulation, novelty and relaxation.

Conclusion The mothers in this study navigated the emotional dimensions of their family holidays through a range of strategies. Firstly, they chose destinations and accommodation, which provided detailed information on all aspects of the holiday to prepare their child in advance. Secondly, they selected quiet destinations and accommodation and thirdly, they packed familiar possessions that are important to the child’s daily routine and ensured that the accommodation could provide for their child’s needs (e.g. Wi-Fi and television). Some mothers also carried an identification card or official document from health or psychology services for their child to deal with public censure if the child’s behaviour became too extreme or to confirm his entitlement to preferential attention, such as in theme park queues. Such strategies could be employed by other parents and, if we can appreciate the coping approaches of parents of children with a disability, these may ‘‘provide valuable insight for other families and parents” (Dodd et al., 2009, p.266). Tourism researchers have much to do to provide such insight and to adequately connect disability, psychological health, distress and the family. This paper has contributed to the unfolding work on this area and, in focusing on developmental difficulties and psychological distress, has widened the scope of an evolving tourism literature exploring wellbeing and psychological health. The area of psychological distress in general, and specifically in tourism, requires much more investigation since studies on disability too often assume that the ‘‘obstacles, barriers and constraints which face disabled people are identical across all people with a disability” (Blichfeldt & Nicolaisen, 2011, p.83). Our research has highlighted the unique context of autism and the challenges faced by mothers of children diagnosed with ASD, illuminating their complex care-giving responsibilities and the impact these have on family holiday experiences, including those of siblings. Whilst all the mothers we spoke with identified benefits to holiday-taking, they balance these against the disruption to routines and exposure to sensory-stimulating environments (Bellini, 2004), which make holidays a challenging experience for both them and their child or children. In addition, expectations to conform to certain behaviours and public reactions to their child’s behaviour can exacerbate the difficulties of holidaying and make them an isolating experience. In this, families with children diagnosed with ASD share common ground with other groups who experience stressful travel encounters in an unaccommodating world (Small & Harris, 2012). Embodiment, attitude, behaviours and stigma are common across disability groups and tourism’s gaze of discipline and surveillance, which causes such stress to many people with disabilities (Eichhorn et al., 2013) and to parents of young children in general, bears further scrutiny. This leads us to perhaps the most thought-provoking contribution of our study. It illustrates the ways in which tourism experiences are journeys of mixed emotions: far from the binary of pleasure and apprehension, they are indeed multifaceted, complex, interlinked and intersubjective (Williams & Aaker, 2002). We need to know more in this area. We also require further explorations of the multiple, complex and nuanced meanings of ‘the holiday’; especially ones that investigate what constitutes a holiday for individuals and families who fall outside of our world’s increasingly unforgiving expectations and norms. Conceptualisations of the holiday have focused on its benefits and on its opportunities for positive transformation and renewal (e.g. Reisinger, 2013). Holidays also entail considerable ‘work’, anxiety and emotional labour (Dieffendorff et al., 2005), especially for care-givers, and particularly as here, for mothers of children diagnosed with ASD. At each stage of the holiday and planning process, the women invested significant time, energy and emotional labour to facilitate trips for their families, in which they themselves experienced both stress and escapism. Indeed, different holiday practices (e.g. air transport, visiting resorts) evoke a series of different emotions and emotional labour depending on the life-world of our participants. With the consequences of emotional labour often resulting in psychological distress (Strazdins & Broom, 2004), we suggest more attention should be given to this area in future tourism research, alongside a more comprehensive account of gender and the lived experience of care-givers in the tourism context.

Conclusion

The target for people with autism should be to live independently.  You may not achieve this, but the closer you get, the better life will be.

Traveling is a good way to learn some of the important life skills you are going to need later.

You can strive to make accommodations for the disability of autism with special autism-friendly periods in shops, theatre, cinemas, etc. There can even be disabled parking privileges for parents, although most people with autism can walk just fine.

The other extreme is tough love, where you always push for being “normal” and fitting in, over acceptance of being different and then just excluding yourself.

What works best for you is determined by how severely disabled the person really is.  Only 15-20% of modern autism is severely disabling; those people really need a lot of help, and indeed personalized medicine.  The majority of those with autism in 2020 are starting from a point (level 1 and 2 in DSM5), not so far away from normal.

Away from the bubble of social media, the real world has changed little.  Strangers on the street did not get more tolerant; kids at school did not stop bullying the odd one out; best to be as "normal" as you can.

Whether you chose travel, sport, music or something else, better to broaden horizons and ambitions with actions, rather than tweet about all the problems.