Three Cognitive Levels of Autism

The 3 levels of Autism in DSM 5

The Diagnostic and Statistical Manual of Mental Disorders (DSM 5) splits autism into three distinct levels. These are:

Level 1: Those who require support

Level 2: Those who require substantial support

Level 3: Those who require very substantial support

Each has brief descriptors for social interaction and for ‘restricted and repetitive behaviours’ (things like difficulty with change).

In DSM 4 (the previous edition of the manual), there were three diagnoses. These were subsumed into the single diagnosis ‘Autism Spectrum Disorder’ diagnosis in DSM 5. These three separate diagnoses were

• ‘Autism’

• ‘Asperger Syndrome’ - often (erroneously) called ‘high functioning autism’

• ‘Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)

PDD-NOS was for those who did not meet the ‘Asperger Syndrome’ diagnosis but who still had significant difficulties. It was a very unsatisfactory diagnosis because nobody really understood what it meant.

It may be that those who created DSM 5 were trying to capture these different diagnoses into the levels of severity.

Behaviour vs Cognition

The diagnostic criteria in both DSM4 and DSM 5 are purely behaviour based. So, while all variations of autism are widely believed to be cognitive in nature, the diagnostic criteria are based on behaviour. Perhaps in an attempt to bring a cognitive aspect into the diagnostic process, some diagnostic teams include cognitive tests as part of the diagnostic process to provide extra information. Some even pick up on issues with slow processing. But these tests are generally not used to best effect to really understand what is going on with the individual. Even when these tests are included, the diagnosis is primarily focused on behaviour.

Cognitive Levels of Autism

We believe that levels of autism can be quite easily devised from cognitive factors and the severity thereof: the Cognitive factors that can be gleaned from reading first hand accounts and observing, and interacting with autistic people. While there are no hard boundaries, these three levels of autism severity are based on cognitive factors that cause the behaviour on which current diagnoses are based.

These levels do not correspond well to the behavioural levels. Factors that are not related to cognition, such as motivation and intelligence pay a significant part in how ‘high functioning’ someone appears. It is possible to have similar ‘autisms’ but widely differing presentations because of these factors.

Note that the below descriptors are general in nature and the issues described are not exhaustive.

Cognitive Level 1

Cognitive Level 1 seems to be characterised by a combination of sensory and processing issues sufficiently severe to cause barriers with fully understanding and being able to participate in social interaction. However, there is enough knowledge and awareness about social interaction (including masking) to pass quite a lot the time with effort. Processing issues can cause some problems with change, especially when these are both unexpected and novel. Other issues with executive functioning such as organisational skills, planning and execution, or emotion regulation, which impact on everyday life can also be present.

What most people don’t realise about autistic masking is that it tends to cause autistic people to fall into the ‘uncanny valley’. When people fall into the uncanny valley, they can appear ‘unsettling’, ‘off’, ‘dishonest’, ‘unreliable’. People realise there is something not quite right, but can’t put their finger on it. In an interview situation, for example, this puts people off and the autistic individual does not secure the job. In contrast, autistic people at this level who don’t attempt to mask (and who just appear somewhat ‘eccentric’) do get jobs as long as they can offer value to an employer. Some employers really appreciate the honesty, integrity and authenticity of their autistic workers. Masking destroys authenticity and people do tend to notice.

People who fall into this level often manage to have jobs, partners (at least for a while) and children, although they do struggle with certain aspects of relating to all three.

Cognitive Level 2

Cognitive Level 2 is for those with more severe autism. Autism that is obvious. It is primarily characterised by one or more of

• Processing: difficulties with processing speech and/or words in general

• Sensory processing>: issues that make it difficult to process what is going on around you

• Tunnel Focus: difficulties switching focus

• Gestalt hearing: causes difficulties with learning to speak because language is learnt via meaningful phrases rather than individual words.

• a kind of gestalt thinking: events and ideas create a whole making it difficult to interrogate parts of them. This is why the autistic person may not be able to answer what appears to be a simple direct question. This can make it difficult to find out what they know.

All of these will lead to difficulty understanding what is said. Processing as far as literal understanding is very common. This means that hidden meanings and hints are not recognised. These difficulties also make it difficult to pick up on social cues, leading to poor ability at social interaction. Children at this level tend to have few or no friends and making friends becomes harder as they get older and fall further behind with social interaction.

Maintaining friendships is even harder. Relationships can fracture easily because they don’t have the social skills to mend them. This does not mean however, that close and rewarding relationships are not possible. Such relationships are possible with caring, accepting, and understanding people.

Change is often difficult. While autistic people at this level can learn to handle common changes, a new change or a new situation can render them unable to cope. This can take both the autistic person and those around them by surprise, if the person otherwise appears to be coping with normal everyday life quite well.

At this level, Autism is obvious and cannot be hidden. Masking is not possible at all, or only for short periods of time. Children, especially girls, can be very quiet at school to pass ‘under the radar’ and so they are not picked on. This can lead to ‘explosions’ of challenging behaviour when they get home, especially if they are finding the school environment difficult to handle from a sensory point of view.

Autistic people at this level do want jobs, but few get jobs. Those who do, nearly always have valuable skills. For example, there are organisations which focus on getting suitable detail-focused autistic people into what others consider to be boring and repetitive jobs. These jobs can provide a predictable environment where some autistic people can really thrive. Occasionally, autistic people at cognitive level 2 have rare skills that are very valuable to their employer: highly developed technical skills or the ability to rapidly assimilate large amounts of written information, for example.

Cognitive Level 3

Cognitive level 3 is what used to be called Kanner’s autism - roughly the DSM 4 diagnosis of autism. It is often called ‘profound autism’. These autistic people cannot live independently. Many never learn to speak; others speak very late. Historically, within this group, inability to understand what is going around them or to learn has been (and often still is) a very common assumption.

However, some people are cognitively intact, intelligent, able to learn normally and some even learn to understand social interaction, but do not have functional speech. Think Ido Kedar, Lucy Blackman, Naoki Higashida, for example. In these cases, the issues are due to severe sensory and/or sensory-motor issues where they do not have full control over their body. Impulses can take over, when they point or say a word they did not mean to say. This causes (false assumptions) of severe cognitive difficulties and inability to learn. Can you imagine the frustration? Can you really blame them for challenging behaviour?

There are now techniques whereby these people can learn to communicate first by pointing to a letter board and then by typing. These techniques are controversial because they involve physically supporting the person’s arm or hand. This is necessary to enable the person to feel connected enough to their body for agentive movement. These techniques are not suitable for all autistic people who do not speak. It depends on the specific cognitive issues.

Some people with this level of autism have combinations of the issues described for level 2, but more severely, to the point where any form of back and forth conversation is impossible because the ability to process the words in real time is not present or because sensory issues preclude direct conversation. Sometimes indirect communication is possible. This often leads to the need for strict routine (which can look controlling) and to minimise all kinds of change. Even a small change in the position of an object in a room can be problematic (gestalt vision). Monoprocessing (processing just one sense at a time) and peripheral perception (for example, perceiving more in peripheral vision than central vision) are common.

Sensory issues, sometimes along with processing and other issues, cause severe disability and the person is unable to function independently and will need support with everyday living throughout their life.

Discussion

I 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.

Whichever level an autistic person finds themselves in, it seems to be difficult to imagine what it is like to be at a different level.

Level 2 is possibly the least understood and is certainly the most ‘forgotten about’. Forgotten because most people at this level are unable to advocate for themselves and have nobody to advocate for them. In levels 2 and 3 when there is a high level of intelligence, autistic experience and functioning can be very difficult to understand because it is so different to how others experience and think about the world. This only serves to make communication more difficult, leading to misunderstandings.

We complete autism profiles that focus on cognitive aspects of an individual’s autism. This enables us to create targeted interventions and reasonable adjustments. We are very experienced with cognitive level 2 autism and we’d welcome a chat with you. Contact us to discuss how we can help.”