Autism is the generic term for the condition of having Autism Spectrum Disorder (ASD). Autism is described as a 'spectrum disorder' because the condition affects people in many different ways and to varying degrees. This makes it difficult to diagnose. There are other difficulties in diagnosis, for instance, Autism shares a number of symptoms with other developmental disorders such as Attention Deficit Hyperactive Disorder (ADHD), Dyslexia, Dyspraxia and many others. Furthermore, Autistics very frequently have one or more of these disorders to some degree alongside their Autism. Autistics suffer from higher rates of epilepsy; they also frequently have anxiety and depression as 'default settings'.
Until relatively recently, Autism was generally diagnosed when the individual was thought to have one of the disorders which were recognised as being on the Autistic Spectrum. There were a lot of them, new disorders being 'discovered' all the time. However, it has been increasingly recognised that this is a misleading perception. What is actually being observed is that there are as many variations of clusters of symptoms and behaviours as there are Autistics. It is a frequently used saying that "no two Autistics are alike". Therefore it is not that there are many different disorders within the Autism Spectrum just many different manifestations of it. So people are now more likely to be simply diagnosed with Autism Spectrum Disorder, in the singular, if they demonstrate enough of the recognised 'markers' of Autism to make that diagnosis possible.
What Is Autism?
It is not an illness or disease, it is a lifelong developmental disorder. It cannot be ‘cured’ or ‘treated’ and the Autistic person has to learn to accommodate to the handicaps it involves.
The accepted symptoms which have been supposed to delineate people with Autism is that they have difficulties in three main areas.
- Social communication
- Social interaction
- Social imagination (sometimes to referred to as a ‘Theory of Mind’).
Whereas the first two are glaringly obvious in an Autistic person, the third is beginning to be questioned. Those who work with Autism and Autistic people themselves are voicing the opinion that an Autistic person merely has a different social imagination from the norm, one that is particular to their condition. Autistic people can indeed be empathic, but they find it harder to read the non-verbal signals that are an integral part of normal communication and interaction and to express their responses in a way that is understood by others.
The root problem is that, until recently, everyone who worked with Autism or researched it or wrote about it was not Autistic. People who are not Autistic are referred to as Neuro-typical (NT for short). An NT has no concept of the experience of the Autistic person. The Autistic person has a fundamentally different view and experience of the world from most of the people around them. For them it is a strange, confusing and even frightening place to be. This accounts for the fact that anxiety and depression are ‘default settings’ for the Autistic and suicides are more common amongst them than in a similar proportion of the population.
What actually delineates the Autistic person are two things:
1. They do not naturally develop the ability to understand the ‘rules’ and attributes of social interaction as most do.
2. They are permanently over-stimulated in one or more areas, for instance, crowds, sounds, colours, thoughts, expectations, taste, touch and so forth.
Not being able to understand common social interactions imposes stress which is also a form of over-stimulation as does new or out-of-routine experiences.
Whereas the NT is geared towards and learns through stimulation in one form or another, the Autistic has to constantly try to reduce stimulation or they risk, to use an old-fashioned phrase, ‘cerebral overload’. All of the behaviours common to those who have Autism, and by which it is identified, are carried out in order to reduce stimulation for that person. However it is easy to see only the behaviours and not appreciate that it is the core experiences which define the Autistic person: a) the inability to understand and effectively respond to common social interactions and b) intense, psychologically painful over-stimulation. So it is obvious how the Autistic person does not fit easily into the world. Social settings, education, employment, personal interactions, communication all need to be completely different from the norm for the Autistic person.
What Causes Autism?
Thanks to advances in science (especially Magnetic Resonance Imagery or MRI) we are now sure that Autism is caused by a particular abnormality in the development of the brain. Various other causes have been suggested (the administration of the MMR vaccine being a recent example) but have proved to be false.
As a child grows, so does their brain. As they absorb knowledge and learn skills neural pathways are formed. Commonly, these trace a predictable pattern which includes the propensity to deal with mixing with other people in a socially acceptable way. For reasons that are not yet clear but most likely genetic, sometimes there develops a divergence from this pattern and the formation of the neural pathways takes a different turn. Neural pathways are formed that are different from the usual. Autism is the result of particular, alternative types of formation of these pathways. Besides a limitation to the social interaction areas of the brain, there are unusually extensive connections with areas to do with sensitivity to various stimuli.
How Does Autism Affect People?
For many years. when people mentioned Autism, they were actually referring to people at the 'severe' end of the Spectrum. People, and particularly children, who were completely unable to communicate in a meaningful way with others; they might incessantly rock backwards and forwards, perhaps hum to themselves over and over, have major tantrums or 'meltdowns' with little provocation, maybe bang their head or frequently strike themselves and such like. Eventually, however, it became clear that there were many people who were obviously Autistic but who did not have symptoms anything like as severe as these. They came to be described as 'High Functioning' Autistics. Almost of all of the people that Milestones finds itself helping come into the category of High Functioning.
High Functioning Autistics, whilst they may have the usual difficulties with social interactions and of suffering from continuous over-stimulation from various sources have formed other pathways and (it will surprise many) that give them abilities that are more advanced than NTs. Here are some examples. They have:
- The ability to perceive order, patterns and structures that others cannot
- A genius for seeing and creating order and harmony out of the apparently random or chaotic.
- A special aptitude for spotting minor or obscure differences or aberrations in patterns and structures.
- A proclivity to think in a very unrestrained way, thus making them remarkable problem solvers (someone said that they do not have to think 'out of the box' as they have no 'box' to think out of!).
- Immense powers of concentration.
- An extraordinary attention to detail.
- An emphasis on precision (which can make them a little hard to live with!).
- The capability to gather, inwardly collate and retain vast and detailed amounts of knowledge about subjects in which they gain an interest.
- Total three-dimensional visualisation, that is they can make an image in their head move smoothly in any direction, without needing to make a series of stops to change the angle of view, in much the same way as a 3-D computer graphic can be moved (try it sometime!).
- An enhanced intuitive capacity.
That High Functioning Autistics have this last capacity is not generally known even by the Autistics themselves. This is simply because the people who assess and help them are generally not Autistic themsleves (as mentioned previously) so have no notion of its existence.
All of the above advanced characteristics lead some to obvious discomfort in labelling such people as having a 'disorder'; for they are (at the risk of sounding 'politically correct') indeed not 'disabled' but 'differently abled'.
However, in the High Functioning range of Autism, there are two Syndromes that are referred to as 'diagnostic subsets' of ASD. These are Asperger's Syndrome and, increasingly, Pathological Demand Avoidance Syndrome.
Asperger's Syndrome (AS)
It was recognised that some people who were clearly Autistic also displayed other characteristics that were somewhat out of the ordinary for an Autistic. These are as follows:
- Unlike other Autistic people they are less self-focussed and can learn how to interact more 'normally' with the world.
- They are able to understand that they have a condition that makes them see things differently to others.
- They frequently have fewer problems with speech than those 'further along' on the Spectrum although it is common for them to begin speaking a little later than average.
- They do not usually have the learning disabilities associated with the other forms of Autism, although they may have in some part learning difficulties such as dyslexia and, of course, that they learn in a different way from NTs.
People with AS can hold down a job, look after themselves and generally take their place in society, albeit at some psychological and emotional cost to themselves. It is why many people often seek a diagnosis only later in life, because, despite their suffering, they have managed to go about their lives as everyone else does. Most often they have blamed themselves, unfortunately and erroneously, for their difficulties and awkwardness in social situations and their feeling of general alienation from other people.
Pathological Demand Avoidance Syndrome (PDA)
(with acknowledgement to Priory Educational and Childrens' Services)
PDA until recently was regarded as not being on the Autistic Spectrum. It is a pervasive developmental disorder (meaning it affects all areas of development) first identified by Elizabeth Newson in 2003. It's main characteristics are:
A need to resist normal, everyday demands made by others
That this resistance appears to be a way of managing acute anxiety
Unlike those with other forms of Autism, they are comfortable with playing 'pretend' games and have less difficulty in using social skills. Hence the doubt that they are truly on the Autistic Spectrum. However, they will tend to use these skills to manipulate others and these skills are rather at a functional and logical level rather than at a deeper emotional level.
They are able to create and 'act out' a character who is entirely credible as a normal, even especially socially skilled and well-behaved person. It is true that many of those with Asperger's Syndrome can do this but they are not so skilled as the person with PDA and find it exhausting, which does not appear such an issue to those with PDA.
Although it is still not currently recognised in some diagnostic criteria for Autism, gradually it is being regarded, as with AS, as a diagnostic subset of Autism.
Now the good news...
- It is not possible to tell that someone is Autistic by looking at them.
- Many people who are 'High Functioning' Austistics, as alluded to previously, do learn how to socially interact and are able to take their place in society without seeming 'out of place'.
- Having ASD is not a 'life sentence'. There are many accomplished and successful people with Autism living in the world.
The easiest way I can describe having ASD is that it is like spending your life living on an alien planet.