Minds in Depth

On the surface, sociologist and social psychologist, Damian Milton, via his ‘Double Empathy Problem' (2012), describes what was already a well-known issue: autistic people find communicating with non-autistic people hard. The same can be said for non-autistic people when it comes to communication with autistic people.

We thought this was all there was to it until various people asked us what we thought about the 'Double Empathy Problem'. Then we thought it might be a good idea to read the original paper.

Upon reading it, it was clear that Milton wants to replace the diagnostic criteria of 'deficits in social interaction and communication' with his 'Double Empathy Problem', which places communication issues equally on both parties. However, Milton does not explain what he means by 'empathy'. This is not discussed at all in the paper. In addition, Milton provides no evidence that the issue between autistic and non-autistic communication has anything to do with empathy, while dismissing evidence-based scientific work on autism as 'ideology'.

The concepts of autistic 'community' and 'culture' are vital for this concept to apply to autism. But the huge range of different presentations of autism makes the development of a true autistic community and culture impossible. Autistic people do not develop an alternative set of cultural norms.

Milton frames his ‘double empathy’ concept relating to interpersonal communication as issues relating to ‘different dispositional outlooks’, and ‘personal conceptual understandings’. We translate this as meaning issues relating to personality, worldview, mindset, and culture. But there is no mention of empathy in this. This is about personality, social norms, and how different people relate to and think about the world.

In reality, empathy creates a point of connection between people - even when there are significant differences and communication is extremely difficult. This means it can't be that issues to do with empathy that are causing the communication difficulties.

The thing is, autistic people experience barriers (including processing and sensory issues) that prevent them learning social interaction like everyone else. While these barriers may affect the expression of empathy, this does not mean that it is difficulty with empathy that causes problems with social interaction and social communication for autistic people.

Read more over on our sister site Aspiedent CIC https://aspiedent.com/blog/double-empathy-problem/

Imagine having lots to contribute but not being able to say it. This is the level of frustration that some autistic people - including our founder, Elizabeth - feel when they try to get information out of their head. The only way we 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.

It's a key problem for many autistic people but it is hardly talked or written about, which is not surprising

For autistic people with this problem, it is extremely difficult to write a book or even write 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 something but can't.

There are guidelines for communicating with autistic people, but these are based 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.

People with this issue can be split into different categories; these include:

- 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.

Many people struggle with combinations of these. They all often lead to frustration and misunderstandings.

We discuss some of the reasons why this might be the case, including non-linear thinking, the need for triggering, the need for indirect communication, and difficulties with saying what you did not want to say.

Some autistic people can find that 'triggers' can better help them get the information out. This can happen via events, discussing with someone, or via questioning.

Somehow, we don't think the problem of getting information out is restricted to autism. Find out more over on our sister site Aspiedent CIC https://aspiedent.com/blog/getting-information-out/

Is autism a 'difference' or a 'deficit'? Or perhaps neither work well and it is something else.

The Medical and Social Models of Disability are extreme and neither works well when referring to the condition or the challenges experienced by those with autism. The medical model, with its focus on deficits, rarely captures the whole of an autistic individual.

The ‘neurodiversity’ movement completely rejects the medical model and applies the Social Model of Disability. This claims autism is a ‘difference’ and that autistic people are ‘disabled by society’, rather than by their autism.

This movement hates diagnoses, as a diagnosis classes autism as a ‘disorder’ with ‘deficits’. This creates contradictions because the movement needs diagnoses and allows self-diagnoses.

A key problem with saying autism is a ‘difference’ is that funders then think that it doesn’t require funding for support. This, understandably, impacts those who really need support to help their child.

Neither deficits nor differences capture autism. In fact, both demonstrate a lack of understanding of what autism really is.

So is there a viable alternative?

Well, we could look at autism from a cognitive perspective.

The key diagnostic 'deficit' for autism is deficits in social interaction and communication. There are barriers that prevent autistic people developing communication skills to the expected level:
- A 'gestalt' way of processing language, which works from phrases and scripts rather than individual words
- Lack of ability when it comes to social emotional reciprocity. This causes social chit chat to be uninteresting and boring.
- Processing issues of varying kinds.

This enables a more nuanced look at the issues of social communication in autism, and aids communication with an autistic individual without resorting to stereotypes. Best of all, it explains what can be a confusing mix of inability and ability, where, for example, someone can partake in emotional reciprocity but not be able to engage in conversation.

There is a myth that autistic people lack empathy. This idea was widespread until parents of autistic children started talking about how empathetic their children are.

There are two key explanations for this:
1. They have not managed to learn how to express that empathy in ways that those who don't know them understand. In other words, their lack of knowledge and understanding of social interaction has prevented them from learning 'cognitive empathy'.
2. They are not able to process for empathy in real time. So they might realise someone was upset several days later, by which time it is generally too late to show empathy.

Neither describing autism via deficits nor differences captures autism. Instead, a cognitive approach is much better. Once you know how the individual 'ticks', you can work out how to help them.

What do you think? Read our latest blog over on our sister site Aspiedent CIC and let us know below...

https://aspiedent.com/blog/autism-difference-deficit/

Sensory and processing issues are common for those with autism. While it is tempting to believe that sensory issues lead to processing issues, this is not the case.

Some autistic people experience just sensory issues, but no processing issues; while others have significant processing issues, but no discernible sensory issues. However, a combination of sensory and processing issues is common in autism.

In general, senses produce consistent information, even if it is blurred, bits are missing, or if it is distorted in some way. When information from a sense is not consistent, the autistic individual will tend to rely on other senses. This information from the senses is connected to the real world. Due to this 'requirement' to connect the senses to real world experiences, further conclusions will therefore still be connected to the real world, or rather, the autistic person's experience of it.

Additional processing from the senses seems to involve incorporating a separate step, using different areas of the brain. This can also not work as efficiently as it should.

Further processing includes, amongst other things:

- Processing for the deeper meaning behind what has been said or written.

- Integrating information from different senses to work out what is going on around you.

- Processing for implied emotion, beyond the literal meaning (for example, upsetting bad news).

- Being unable to process an unexpected change or situation and decide on a way forward.

All of these can be difficult to a greater or lesser extent for people with processing issues.

The presentations of both these different types of autism – primarily sensory, primarily processing - vary widely. When issues are severe, both all types historically were (mis-) labeled as mentally re****ed and unable to learn.

Of course, some people's autism consists of a mixture of both and there are other factors that cause the symptoms of autism.

Read more in our latest blog post 'Autism: Sensory Vs Processing Issues' over on our sister site Aspiedent CIC - https://aspiedent.com/blog/sensory-and-processing-issues/

Autism is generally believed to be cognitive based, but the autism diagnostic criteria (DSM 5) are behaviour based. The diagnostic criteria set out three, behaviour-based levels of severity of the condition.

However, biographies written by autistic people tend to focus on the cognitive aspects of autism. Cognition is the explanation for what other people observe. It should therefore be possible to describe levels of autism in terms of cognition.

We propose three Cognitive Levels of Autism:

Cognitive Level 1 is characterised by a combination of sensory and processing issues sufficiently severe to cause barriers with fully understanding and participating in social interaction. Some autistic people at this level complain about the effort of masking but don't realise that masking tends to make them fall into the 'uncanny valley'.

Cognitive Level 2 is generally caused by one or more processing issues, sensory issues, tunnel focus, gestalt hearing, and gestalt thinking. At this level, autism cannot be hidden. Masking is not possible. Difficulties with social interaction are obvious, and difficulties with unexpected changes or unfamiliar circumstances are due to cognitive issues such as processing issues.

Cognitive Level 3 is characterised by severe sensory and sensory processing issues. Some people at this level are cognitively intact and very intelligent but do not have sufficient control of their body to be able to communicate what they know. Others have a combination of sensory issues combined with issues found at Cognitive Level 2, sometimes more severely. At this level, independent living is generally not possible.

We would expect that an understanding of the cognitive factors that underpin autism will lead to more accurate diagnoses with fewer misdiagnoses. The cognitive approach constrains the levels so that it is not possible to have good social skills combined with severe difficulty with change, for example.

Of these levels, Cognitive Level 2 is the least understood. This group is generally not good at self-advocacy, and are not represented by the neurodiversity movement. This means that their voice is not heard.

Read the full article over on our sister site Aspiedent CIC to discover more about the three cognitive levels of autism...

https://aspiedent.com/blog/cognitive-levels-of-autism/

At the beginning of our founder, Elizabeth's journey of trying to help autistic adults, she both observed and experienced a lack of understanding of autism and assumptions regarding how to support autistic people from professionals. While she appreciates the effort, it is no fun being on the receiving end of inappropriate adjustments. She was struck by the lack of understanding from staff in a situation that was rapidly deteriorating into multiple autistic people in the room having 'meltdowns'. She could see what was going on and later explained what was really going on. Something else that struck her was that autistic adults instinctively know when someone else's autism is similar to theirs and form groups. But this similarity is not obvious to support staff who focus on behaviour and functioning levels rather than what is going on underneath.

To gain a better understanding of the breadth of autism, she collected and read biographies of autistic people. This reading, along with experience of helping autistic adults, led to her gradually creating her Integrative Cognitive Profiling Framework and then using this to describe the autism of any individual.

On our sister site, we decided it may be helpful to explore some of these biographies regarding their underlying issues with a view to explaining what is causing the symptoms. The first of these will be focused on Lucy Blackman.

Lucy Blackman is an autistic adult with no functional speech. She learned to communicate via 'facilitated communication' when she was 14 and published a book describing her childhood until she started university: "Lucy's Story: Autism and Other Adventures." Lucy's autism is primarily about sensory issues. In this article, we explore Lucy's autism and the impact of her sensory issues. When Lucy was 14, she learnt to type via facilitated communication and when she was 19, she went for Berard Auditory Integration Training. The impact of these interventions is also explored.

We would be interested to read in the comments the observations and conclusions you draw from this example. How do you feel this resonates with your own experiences of people you have worked with or supported in the past?

Read the blog post here - https://aspiedent.com/blog/lucy-blackmans-unique-experience-of-autism/

Surely, it is important that we ascertain why some people are autistic and others are not?

The more you learn about autism, the more it becomes clear that autism is much more than just a 'difference'. The challenges that come with autism are very real and significantly impact an individual's quality of life. This means understanding the WHY behind autism is extremely important.

There have been many attempts to explain autism and few have held up to scrutiny. However, it is possible that leading brain plasticity researcher Michael Merzenich has come up with an explanation that does hold up to scrutiny.

This explanation focuses on critical periods of childhood development when the brain is particularly plastic and learning occurs via exposure to stimuli. Once this window has closed, learning becomes more effortful. Michael Merzenich suggests that in autism, some periods of critical development are cut short resulting in insufficiently differentiated brain maps. By identifying these brain maps, it may be possible to improve the quality of life for autistic people. This approach has been demonstrated to work well for some autistic people.

In this article, over on our sister site Aspiedent CIC , we explore this theory of critical development and discusses both how it is consistent with Olga Bogdashina's sensory framework. This theory does not explain everything regarding autism and there may be pitfalls of applying this theory without a full understanding of autism and how it affects the particular individual.

Read more here - https://aspiedent.com/blog/critical-development-theory-of-autism/

Part A of the diagnostic criteria for autism is about social communication and interaction. However, a diagnosis provides few, if any clues as to why the autistic person struggles with social interaction. There is no explanation regarding which parts of social interaction are working fine and which parts are not working as well as they should. We have written about the barriers that prevent autistic people from learning social interaction fully in previous posts.

However, to really understand how all the different parts of social interaction interact with each other and which parts create particular difficulties for autistic people, it helps to have a model of social interaction. This article begins to explore what that model may look like.

Via an exploration of aspects such as emotion, knowledge and the aspects of participating in social interaction, the reasons behind many of the difficulties become more clear. It is from this understanding that we can build strategies.

Do you know or work with individuals who have difficulties with social interaction or do you have difficulties in this area yourself? If so, how do you think such a model could help you to overcome these difficulties? We would be interested to know your thoughts.

Read our full blog post over on our sister site Aspiedent CIC here - https://aspiedent.com/blog/model-of-social-interaction/

A complex understanding of ‘Theory of Mind’ is essential for successful face to face social interaction.

By this, I don’t mean the simple definition of Theory of Mind based on the Sally-Ann Test, which tests to see if a child understands that someone may not know something that they know. This is tested via two dolls, Sally and Ann, who play out a scenario. Sally puts a marble in her basket and leaves the room. Ann moves the marble to her box. Then Sally comes back and wants to play with her marble. The child is asked where Sally will look for her marble. If the child answers in the box then they are deemed to lack ‘Theory of Mind’. That is that they are not able to see the situation from Sally’s point of view but only from their own knowledge. They do not take into account that Sally did not see the marble being moved.

Many autistic adults are understandably offended when they are told that autistic people lack Theory of Mind. Many autistic adults can pass this test effortlessly and they do understand that different people have different beliefs and perceptions. It may be that autistic children, in general, develop this skill more slowly than non-autistic children.

However, if you can pass the Sally-Ann test, it won’t get you very far with the complexities of social interaction, which is about understanding how people are feeling, their motivations and beliefs so that you can engage in the enjoyable (to most people) to and fro of social interaction.

Read more in our latest blog over on our sister site 'Theory of Mind and Social Interaction' - https://aspiedent.com/blog/theory-of-mind-and-social-interaction/

Social Emotional Reciprocity is what makes social chit chat enjoyable and fulfilling for most people. Social chit chat is about emotion more than the content. Those engaging in social emotional reciprocity exchange packets of emotion during their conversation. It is that which builds social connection.

Some autistic people can engage in social emotional reciprocity, but others are not able to do this. For them, it is another barrier that prevents them connecting with people. However, note that not being able to do social emotional reciprocity does not automatically make you autistic. There are things that can be done to simulate this and build emotional connection with people.

Lack of ability to do social emotional reciprocity in autism makes social chit chat boring and in fact some autistic people conclude people engage in social chit chat because they are bored. If you don’t understand what is really going on that is not an unreasonable conclusion.

Read more in our latest blog post over on our sister site Aspiedent CIC 'Social Emotional Reciprocity in Autism' - https://aspiedent.com/blog/social-emotional-reciprocity/

What Is the ‘Uncanny Valley’?

The Uncanny Valley is a term that describes what happens as robots or cartoon characters look more human like. Contrary to expectations, there isn’t a linear relationship between how human-like robots and cartoon characters are and how endearing they are to people. Instead, there comes a point where it is almost there, but not quite right. Instead of liking the character, people find it creepy or even scary. At best, it puts people off.

A similar thing can happen in autism, when autistic people try too hard to emulate the social skills of people who are not autistic. They almost get there but not quite, and the effect can be very off putting. We have witnessed this happen in autistic people. When we explain this phenomenon to the autistic individuals we work with, many recognise the pattern immediately, but others refuse to believe it could be happening to them and believe that if they don’t put all this effort in, nobody will want to talk to them.

Read more about this in our latest blog 'The Uncanny Valley and Autism: Why Social Communication Falls Short' over on our sister site - aspiedent.com