Autism: Getting Information Out

Imagine having lots to contribute but not being able to say it. This is the sheer frustration that some autistic people - including me - feel when they try to get information out of their head. The only way I can describe it is by saying it’s as though words themselves are like a foreign language. But you have no phrase book to help you.

This is a key problem for many autistic people, but it is hardly talked or written about.

This is not surprising.

For autistic people with this problem, it is extremely difficult to write a book or even an article about what your autism is like. For those looking on, how can you tell when someone has not understood or whether they want to tell you but can’t - or even if they have communicated something different to what they meant? This is very difficult.

There are guidelines for communicating with autistic people, but these are focused on ensuring the autistic person understands. Not on ensuring that they have managed to give you the answer they wanted to give. Not on ensuring that their frustration is not because they just cannot make you understand. They cannot find the right words, the right phrasing …

Causes

This kind of problem can be loosely divided into the below categories:

• Those for whom words just seem like a foreign language, or for whom words are somehow elusive.

• Those who struggle to get their thoughts into an order that helps people understand what they want to say. As a consequence, what they say is garbled and difficult to understand.

• Those who can’t manage to express what they want to say, but say something else instead.

• Those for whom information needs to be triggered before they can access it.

• Those for whom indirect questioning is overwhelming.

Of course, many autistic people struggle with combinations of these. They all often lead to frustration and misunderstandings.

There are several reasons as to why this might be the case and we discuss some below. Unfortunately, this can be a pretty intractable problem.

After many years, we are still trying to work out how to get all the knowledge and insights about autism out of my head so that other people can apply it. It is very frustrating, though we are now making progress.

Non-Linear Thinking

Non-linear thinking can cause issues with expressing what you want to say because there is a need to translate into the linear format required for words. So if someone thinks visually, or diagrammatically, the translation into words is not trivial. How can you work out what order the different aspects should go in? How do you communicate the various connections between different aspects without confusing everyone and creating misunderstandings?

The standard recommended technique of using mind mapping to organise thoughts falls well short in these circumstances and can add to the frustration. Diagramming software that allows more complex connections may help map out thoughts better, but the translation into the linear format of words is not obvious.

However, creating a diagram and then explaining it to someone can help unlock the information. Sometimes the interaction with another person asking questions can help.

Of course, these techniques do not work well when you are expected to communicate orally with someone on the spot and without time to prepare.

Inability to communicate what you want to say

Some autistic people struggle to say what they what to say and will say something else in response to a question. This is documented in autobiographies.

For example, non-speaking autistic author, Ido Kedar describes this experience and the frustration that it gave him. Can you imagine being asked what food you would like and saying what you don’t want - and then getting that very thing? His family had no idea this was a problem.

Ido was helped via facilitated communication and learnt to communicate his wishes accurately (and eventually to write books).

It is vitally important to not try ABA (Applied Behaviour Analysis), on children with this problem. In these circumstances, ABA will cause only harm.

Triggering

When someone’s thinking is in ‘wholes’, that is everything is kind of packaged up, they may not be able to access what they know. Some autistic people store up masses of information in this way. Their brain somehow manages to process and store various bits of information it receives over time, into coherent packages (without the person realising it).

Then when something happens to trigger the information, everyone including the autistic person is surprised by what comes out. But without that trigger, the information does not come out at all.

An example of how this works relates to the Leeds-based Boxing Day floods (‘Storm Eva’) of 2015 and later news about improving flood defences. I discovered that my brain had organised disparate snippets of information from various sources and over many years into a coherant whole and suddenly I found all this information coming out that I didn’t know I knew.

With this kind of thinking, simple questions such as: ‘How was your day/week?’ or ‘What needs doing?’ are unanswerable because the answer is inside a ‘package’. Instead you need to ask more specific questions to trigger the information.

Regarding what needs doing, it can difficult for the individual to access that information when it is time to complete everyday tasks. The mind just goes blank. Lists of tasks prepared in advance can help.

Brain storming with other people can act as a trigger where something that is said can unlock the information. Asking questions that come at the issue from different direction can have the same effect. After a while the informaiton will be triggered. I use this technique during workplace assessments and autism profiles to extract information. I also use indirect questions sometimes to deduce answers and sometimes because some autistic people struggle with direct questions.

Indirect Communication

Some autistic people cannot handle direct questions. Their mind goes blank and they cannot answer. Intead you have to obtain the information via indirect questioning.

For example, instead of asking what the individual thinks might help them, have some suggestions ready and discuss the pros and cons of each suggestion. That takes the focus off the individual and provides structure. During the conversation, they might come up with a better idea themselves, because the discussion has triggered this idea.

Or instead of asking what they think they are good at, ask them what they enjoy and give examples if necessary.

Somehow, I don’t think the problem of getting information out is restricted to autism. Many people find it difficult to write - and they may also require triggers to ensure they can better share what could be an absolute goldmine of information just waiting to be released.

What about you? I’d love to know if this is something that affects you, whether autistic or ‘non-autistic’?