Presume competence? Presume incompetence? Or just stretch boundaries?

I had a strange experience recently: for the very first time, a stranger asked me if my 21-year-old son has autism.

We were on holiday in Northern Spain, staying at a tiny hotel with just 6 rooms. The hotel was in a tiny village near San Sebastian that happened to be on the Camino del Norte, or Northern Way, which is a well known hiking route. The route was originally a pilgrimage to the city of Santiago de Compostella. The route seems to be popular with older Americans and British.

At breakfast there was one long table and so strangers were almost inevitably going to talk to each other. For Americans this is normal behaviour, but much less so for Europeans.

Monty was wearing a new replacement set of wireless headphones, which we had not quite figured out how to reliably connect to all his devices. As a result, he did look like the classic person with autism – wearing ear defenders and looking anxious.

“Excuse me, is he autistic?”, queried a guest who was walking the Camino del Norte with a friend.

It turned out that this fellow guest at the hotel had an adult son with autism, now in his 30s. His son is still doing ABA and does not get taken on holidays. “I'm impressed you take him with you,” he commented.

We felt it necessary to explain that Monty can do a lot: he completed mainstream school, passed his exams like the typical students, and now travels alone by public transport to “work” twice a week. He has been to China, Japan, South America and most of Europe. He can ski down black slopes, play the piano …

Our fellow guest told us how once his son had eloped and a police helicopter had been needed to find him, not surprisingly near an expanse of water. He did not attend school, due to his sensory issues.

This got me thinking about how we presume competence, or indeed incompetence.

These concepts have become quite a topic in the field of inclusive education. They have been rather stretched by the DEI people, but they are worth evaluating.

Most people assume that a person who behaves typically and is fully verbal must have full mental competence. We are surprised when that assumption proves false. For instance, Harvard University has introduced remedial math classes for some students; you wonder how that is possible. Similarly, some high school students in the U.S. cannot read analog clocks. Social media is awash with videos of young adults asking high school aged kids basic questions like "what is 33 divided by 3?" and having them unable to even make a reasonable guess. There is even a meme of teenage American girls being asked "in what country is Alaska?" and one answers Mississippi.

When we see a person who is not fully fluent verbally, most people tend to presume incompetence.

Last night, as Monty and I were completing our evening uphill “rucking” (fast walking with weights), I decided to check something. An out of breath Peter said “Mont, what is 33 divided by 3?” Without hesitation, he replied “eleven.” OK, I can use that example.   

   

Stretching boundaries

I did explain in Spain how we got to the point of travel independence. It was a step-by-step process and did not happen overnight, or by itself. I was asked how far away I was during this process. I did explain that with modern GPS tracking available on phones and air tags, it is now very much safer and easier. But things can and will go wrong – that is life. People learn by making mistakes – best make small ones, whilst you are still young!

I am a proponent of constantly stretching boundaries on the basis that taking many small steps forward can take you a long way. Just as it does for those older folk walking along the Camino del Norte.

Constantly stretching boundaries and gradually extending your comfort zone seems a good approach to autism. 

 

Mission Impossible in 4D

Monty’s big brother took me and Monty to see the new Mission Impossible film last week.  As we were about to buy the tickets, big brother said “Oh no, it's in 4D”. Watching movies in 4D is like being on a plane in severe turbulence. “No problem, he will enjoy it” was my response.

This was an example of presuming competence.

It was a great film to see in 4D, it really is a compelling experience. 100 times better than films in 3D.

Monty loved it.

 

What about those who are never competent?

For the DEI (i.e. not realistic) version of competence, here is a link to the TACA site.

 

Presuming Competence in Autism

Presuming competence means valuing all people, including those with autism, as whole individuals with the right to express their thoughts, feelings, and opinions. For individuals with autism, this includes the right to communicate, the right to be treated their age, to have their views and feelings respected, and to be involved in decisions about their lives, large or small. This article covers ways and things to consider when presuming competence in your loved one with autism. 

Speak Directly to the Person and in an Age-Appropriate Manner

Presume that everyone can understand what is being said.

Do not talk down to people with autism.

Do not use baby talk or a baby voice. 

Etc … 

The problem is that some people have impaired cognition, not just impaired verbal communications skills. They may never be able to safely cross a road independently, and some will grow up to be like a toddler in an adult’s body.

However, some young children diagnosed with level 3 autism have made such great strides in the early years that they have left their greatest challenges behind them. They should no longer be considered at level 3.

The Lancet Commission has wisely stated that you need to wait until the age of 8 before you can reliably diagnose profound autism. For these children, stretching boundaries seems a better and safer approach than presuming competence.