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!