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
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.
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.