Transit Training / Travel Instruction

 

Monty coming home by himself, at night, from a trip to see his friend Vera, who proudly sent me the photo - not nervous at all.

 

Today’s post is a practical one, it is all about developing independent travel skills. This is all part of what is called “adaptive behavior,” which are the skills you need to function independently in life.

I still recall one mother’s reaction from years ago when a teenager with autism traveling by bus was mentioned:-

“I’d be petrified I’d never see him again”

Your success in mastering life skills matters much more than your IQ, or any academic results.

Depending on where you live, there may be free services available to teach both children and adults, with some kind of special need, how to safely use public transport. There may be group classes, but some even provide a 1:1 helper to ride with the learner to teach the travel route until they can manage unassisted. We followed this latter model with Monty, now aged 20.  It did not take so long, but we encountered many disruptions along the way that provided key learning opportunities – more of that later.

In North America it is the transit authority or school that may offer this training, whereas in the UK it seems to be the municipal authority.

 

 

Example from the UK – Essex County Council

 Transit training in Vancouver

 

There are video training courses and apps for smart phones.

It is apparent that a wide range of people, from low IQ to high IQ are using these services.  It is quite well known that some Aspies struggle with travel by plane, but others may not like sitting next to strangers on the bus.

As with all trainings, they range from the superficial, like how to buy the ticket, to the comprehensive where many of the possible disruptions are planned for.

This is very similar to learning how to buy food/groceries - there is more to it than just learning how to stand in line and pay for your shopping. 

In the jargon this is all part of “adaptive behavior.” I think it would be much clearer if it was called “adaptable behavior.” Many people with autism are not adaptable at all and when things change, or go wrong, they can fall apart.

 

When things go wrong  – it’s also called “life”

In my brief research I came across quite a lot from the US and just a small amount from the UK. Many of the anecdotes from the US are very upbeat, with parents happy that their child has achieved travel independence.  Some of the children / young adults do not appear very disabled, I should point out.

There remains the issue of what happens when things go wrong.

I always told Monty’s 1:1 school assistants not to worry if something went wrong – it’s when things go wrong that you actually learn something useful.  The same is true with independent travel, inevitably things are going to go wrong – more of that later.

Here is a comment I found on the UK’s National Autism Society’s website:-

 

                https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/3426/travel-training

“My local authority is reviewing the cost of providing specialised transport for disabled adults and children. This is quite a widely reported issue nationally, as it affects vital transport links for people on the spectrum, especially those having to travel long distances to use support services and day centres.

One clever wheeze my local council has come up with is that they are going to train people with learning disabilities or autism how to travel independently by bus or train.

Yep, if you haven't heard this idea before, if my council are pushing this, sure enough lots of councils will be trying the same thing.

Seems they haven't factored in change. If the bus route changes. If the train leaves late or there's a confusing on train announcement. If the driver of the bus doesn't understand the difficulty. 

So for local authorities to come up with the clever saving, oh we'll teach disabled people how to go by bus or train. It is truly tragic how badly served we are.”

 

Clearly there are some people who will never be able to safely travel independently.  If you cannot master being out as a pedestrian unaccompanied, you are not ready for public transport training.

Given how broadly autism is now diagnosed with 1 in 25 (four percent) of seven to 14 year old Australians now having an autism diagnosis, it is only a very small proportion who cannot be helped.  Many will not need any help at all.

 

Getting used to things going wrong

Things rarely go exactly to plan and it is these unexpected events that can be hard for some people with autism, or intellectual disability, to deal with.

How do you build resilience to change? By being exposed to it, not being hidden from it.

Many things can go wrong when traveling independently, some are quite predictable, like forgetting to get off the bus at the correct stop, some are not.

 

Bad news can be good news

Since starting independent travel a couple of years ago, Monty has experienced his share of surprises/upsets.

Early on in his bus training he was getting used to traveling by himself on a small local bus and we had his former school assistant following in her car. He was supposed to go from near our house to the park. A lady riding in the bus, who had previously seen Monty practising with his assistant, thought he must have forgotten to get off and so she led him off the bus in what was the middle of his planned journey.  We had not expected that, but no harm done.

A bigger issue occurred recently when Monty took his regular two bus journey to his “work” – about an hour door to door. After getting off the first bus as usual and walking to another bus stop, the second bus had its route modified, due to a road closure, and Monty ended up at a big shopping mall.  He then headed off back towards his work on another bus, but again got stuck because of the road closure.  He could not fully explain what was going on by telephone, so I told him to go to a specific McDonalds, buy a cheeseburger and fries and wait for Dad.  This clearly was a stressful experience, but it is important to complete your activity, so after he finished eating I took him to his work by car.

Fortunately, with a tracking app on your smartphone, you cannot really lose your adult child. I use Google’s Family Link app.

You do need to always pack your phone, remember to charge it and not turn the ringer volume down to zero. Being able to answer your phone and use it to make calls have to be already mastered. Many children with autism hate the sound of a phone ringing and so just turn it off. If your house has poor cell phone coverage you need to teach calling via WhatsApp as well as by phone.

Monty has been taught "if you have a problem, call Dad" and call me he does. At every stage of his bus travels he calls to update me, so the tracking App is really just for emergencies. 

  

The broader concept of Adaptive Behavior, for those interested

Adaptive behavior is the technical term used for daily living skills.

 You might wonder why it is called adaptive behavior. The term "adaptive behavior" is used because it emphasizes the ability of individuals to adapt to their environment and meet the demands of everyday life. It goes beyond simply having basic skills like walking, talking, and eating; it encompasses the ability to learn, solve problems, interact with others, and manage one's personal life.

The word "adaptive" highlights the dynamic nature of these skills, as they are constantly being modified and refined to fit the changing circumstances of an individual's life. As we grow and develop, we learn new ways of coping with challenges, navigating relationships, and achieving our goals.

In addition, the term "behavior" emphasizes the active and intentional nature of these skills. It's not just about having the potential to perform certain actions; it's about actually using those skills in a functional and purposeful way.

Overall, the term "adaptive behavior" captures the essence of what it means to be able to function effectively in the world around us. It's about having the skills and abilities to adapt to new situations, solve problems, and build meaningful relationships, all of which are essential for a fulfilling and independent life.

Adaptive behavior is the collection of conceptual, social, and practical skills that all people learn in order to function in their daily lives. It encompasses a wide range of abilities, from basic self-care skills to more complex problem-solving and social interaction skills. Adaptive behavior is essential for individuals to live independently and to participate fully in their communities.

Conceptual skills are the ability to understand and apply information and concepts. They include:

• Literacy: The ability to read and write at a level that is appropriate for one's age and environment.
• Self-direction: The ability to set goals, make decisions, and manage one's own time and behavior.
• Concepts of number, money, and time: The ability to understand and use basic mathematical concepts, to handle money responsibly, and to manage one's time effectively.

Social skills are the ability to interact with others in a positive and productive way. They include:

• Interpersonal skills: The ability to communicate effectively, build relationships, and resolve conflict.
• Social responsibility: The ability to follow rules, be considerate of others, and contribute to the community.
• Self-esteem: A positive sense of self-worth and value.
• Gullibility or naïveté: The ability to recognize and avoid being taken advantage of.
• Social problem-solving: The ability to identify and solve social problems in a constructive way.
• Following rules: The ability to understand and follow rules and expectations.
• Obeying laws: The ability to understand and obey laws and regulations.
• Avoiding being victimized: The ability to protect oneself from harm or exploitation.

Practical skills are the ability to perform the tasks of everyday living. They include:

• Activities of daily living (personal care): The ability to take care of oneself, such as bathing, dressing, eating, and using the toilet.
• Occupational skills: The ability to perform the tasks of a job or other productive activity.
• Use of money: The ability to manage money responsibly, including budgeting, saving, and spending.
• Safety: The ability to stay safe from harm, including fire, traffic, and other hazards.
• Health care: The ability to manage one's health, including taking medication, seeing a doctor, and understanding one's health conditions.
• Travel/transportation: The ability to travel from place to place safely and independently.
• Schedules/routines: The ability to manage one's time and follow schedules and routines.
• Use of the telephone: The ability to use a telephone to communicate with others.

Adaptive behavior skills develop gradually over time, from infancy to adulthood. Children with disabilities may develop these skills more slowly or with more difficulty than children without disabilities. However, with appropriate intervention and support, children can learn to develop the adaptive behavior skills they need to succeed in life.

  

Conclusion - creating dependence vs creating independence

A recuring theme in dealing with a child who has special needs is to what extent you accommodate those needs, versus trying to overcome them.

If your child struggles at the dentist, do you simply resort to sedation for every visit? or at least try and learn how to be treated like a typical patient?

It is fashionable these days to exaggerate smaller problems to try and get some benefits, or maybe some ADHD meds. A case in point is in Australia with a ballooning budget for those with a disability. In order to access financial support via their NDIS (National Disability Insurance Scheme), some clinicians have been exaggerating the severity of autism, only level 2 and 3 gets you financial benefits.  The end result will be a completely unaffordable scheme and some children/adults held back by a diagnosis they do not warrant. Ultimately there will be insufficient money to support those that need it the most.

In Australia a record 11.5 per cent of boys aged between five and seven are now receiving funding from the NDIS.  Not surprisingly this has put immense pressure on the program’s $42 billion annual budget.

 

Save money on specialist transport by investing in transit training!

A problem the Aussies have is that once someone joins their NDIS disability scheme, they apparently are likely never to leave it. So most of those 5-7 years olds will still likely be on it in 10, 20 and 50 years’ time. The average recipient receives over $30,000 a year.

We recently learnt from the US that about a third of children diagnosed with autism before 36 months of age no longer have symptoms qualifying for an autism diagnosis by the age of 7 years.

 

Persistence of Autism Spectrum Disorder From Early Childhood Through School Age

Key Points

Question:  What is the frequency with which children diagnosed clinically with autism spectrum disorder (ASD) at 12 to 36 months of age continue to meet criteria for ASD based on functioning at 5 to 7 years of age, and what factors are associated with ASD persistence?

Findings:  Of the 213 children in this cohort study, 79 (37%) had nonpersistent ASD. Higher baseline adaptive functioning and female sex were associated with nonpersistent ASD.

Meaning:  These findings suggest that an ASD diagnosis in a child younger than 3 years may not persist, and child-specific factors may be associated with persistence.

 

A big shake up will have to occur down under, or they will go broke.

 

IQ vs Adaptive Behavior as predictors for success

The interesting thing is that plenty of people with low IQ travel by bus every day, with no need for transit training.  Some higher IQ autistic teens and adults seem to struggle and many of them are fully verbal.

Adaptive behavior is the predictor of future independence/semi-independence.

You may well need your IQ to do some kind of office job, but without some adaptive behavior you will not be able to get to and from it.

If you are lucky, adaptive behavior is taught at school, but for many it will have to learnt outside school.

What about those unable to move towards transit training because they cannot safely cross a road? Try and raise IQ pharmacologically where possible, so that basic concepts of danger and self-preservation can be mastered.  Remarkable success is possible if you persist.

 

“I’d be petrified I’d never see him again”

This undoubtedly is a concern many parents of an adult or child with special needs will have.

Plenty of people thought Monty couldn't, or shouldn't, travel independently. There are always a hundred good reasons not to. It's too hot, it's too cold, it might rain, what if he gets lost, what if someone mistreats him ... and the list goes on. 

At least the training option already exists in many countries to move towards travel independence. Perhaps there should be courses for nervous parents too!

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.