What is autism?
When I give people the formal definition of autism, I see their eyes glaze over as it is rather long winded and meaningless to those who know little about autism. So I’m not going to talk about autism diagnosis, which is somewhat complex, but one aspect of autism: empathy.
Many people equate “lack of empathy” with autism, so much so that whenever someone has been inconsiderate, others may joke that they were “being a bit autistic”. Say this around me and I get really annoyed as autism is more than lack of empathy and most inconsiderate people are not autistic. Autistic empathy problems are fairly specific. Hurting other people without remorse is generally considered as “lacking empathy”, although shrinks prefer to use the term “callous and unemotional” as it does not ascribe a cause to the behaviour. This is important as there can be many different causes to this type of behaviour. I will give you 3 adapted real life examples of callous behaviour involving the death of an animal to see whether you can identify the one most likely to be a case of autism.
(a) A 5 year old boy was playing with his pet hamster. The hamster bit him as he was a bit rough. The boy got his baseball bat out and bludgeoned the hamster to death. In explanation of what had happened, he showed no remorse and said “It bit me on purpose, so it deserved to die”.
(b) A 10 year old boy was playing golf. He was very good at golf. A squirrel appeared in his line of sight, and he had the question as to whether his driving accuracy was good enough to hit the squirrel. He hit the squirrel with the golf ball striking the squirrel hard and killing it. In explanation of what happened, he showed no remorse saying “My aim is very good”.
(c) Two 8 year old boys were pulling at a cat’s tail to hear it hiss which they found funny. They tied string to its tail and used that to pull it around. Then they thought it would be funny to set the string alight, which then set the cat alight. In explanation of what happened, they showed no remorse saying “We don’t know what happened to the cat; it had nothing to do with us”.
In Big Sis’s Oxford School Dictionary (apologies, this is sadly the only dictionary our household possesses), empathy is described as “Noun. The ability to understand and share in someone else’s feelings”. In order to empathise, you require the ability to do the following:
1) Be aware that other beings (animals or humans) have independent thought, action and feeling; this is sometimes called having a ‘theory of mind’.
2) Be able to experience and recognize your own emotions and feelings and the situations in which different emotions arise.
3) Be able to imagine that others may have the same feelings, emotions and thoughts that you experience if they were in similar situations.
Autistic “lack of empathy” relates to inability or difficulty with the fundamental step, step 1, which impacts ability to completely master steps 2 and 3. This “step 1” ability is something that you either have, or don’t have. It relates to abnormal brain wiring which goes awry in pregnancy and early infancy. None of us were ever sat down and taught “this is a table: it does not think, act or feel; this is a human, it is able to think, act and feel”, we just realise it ourselves one day, usually in infancy. To an autistic child, something this fundamental is not obvious. A typical complaint from parents of autistic children, and what I imagine would be the most painful as a parent; is that an autistic child may see parents as no different from anyone else, or indeed, any other object. An autistic child may show interest in a parent as a “biscuit dispenser” or “toy-buyer”, but are unlikely ever to have an intimate and confiding relationship with anyone including their parent, due to their inability to recognise other people as thinking, sentient beings. It is hard to comprehend or to believe, but if you are not naturally aware that other people have independent thought or feeling, then the death of a parent would affect you as much as the loss of a toy (provided someone else stepped in to dispense biscuits and buy toys). Classically, without step 1, steps 2 and 3 are impaired. Autistic children find difficulty in describing emotion in themselves as well as others. Some autistic children with good intellect are able to behave empathically. They are able to actively learn that others are thinking sentient beings, and are able to learn what someone would feel and think in a given situation. They learn it in much the same way that we might learn the highway code. It does not come naturally, but we can learn to behave in the way that is required of us. Just as with the highway code learning, actively learnt behaviour can slip in times of tiredness or stress, and is useless in new situations where the rules are unknown.
“Lack of empathy” frequently occurs in children without autism. The work of the clinicians in an autism assessment is to differentiate these children from autistic children.
Children with ADHD, who have a different brain wiring problem have a tendency to impulsivity. They can behave as if they lack empathy as they typically do things without thinking. If someone falls over, it can look very funny. All of us like to laugh when we see people falling over, which is why slapstick comedy is so successful. In real life, most of us would be able to inhibit our impulse to laugh if the person was actually hurt and crying in pain. The ADHD child, cannot inhibit impulses, and therefore will laugh, appearing to “lack empathy”. However, if you question the child afterwards they are able to interpret the situation empathically and realise that they should not have laughed, although they might say “but I couldn’t help it.” Of course some children with ADHD will also have autism spectrum disorder, as one brain wiring problem increases the risk of another.
Other children without brain wiring (neurodevelopmental) problems can develop difficulties with steps 2 and 3. For step 2, I will give two simple examples, but there are likely many permutations for the development of what shrinks call “callous and unemotional” symptoms in the absence of autism. Firstly, Children who are emotionally neglected and not stimulated to interact with others and experience emotion can have difficulty in experiencing and recognising emotions in themselves and others. The classic example of this is from Romanian orphanages. After the fall of the Communist government in Romania in 1989, aid workers found thousands of abandoned children being housed in orphanages in terrible conditions where abuse and neglect were rife. Babies were literally left alone in cots day in and day out with minimal human contact. When discovered, many of these children appeared to be autistic, as they had difficulties with social interaction, communication and empathy. However, the majority of these children, when adopted out to loving families, gradually acquired the ability to empathise and socially interact normally. Their early childhood experiences of neglect had impaired their ability to experience emotion amongst other things, and therefore they had difficulty in understanding emotion in themselves and others. Love, not rote learning of rules was able to restore their empathy as the majority did not have brain wiring problems.
Secondly, young children who suffer emotional abuse (which can occur alone or with physical and sexual abuse) or are constantly witness to violence and trauma, may have had no biological difficulty in experiencing emotions, but as their emotions are too hurtful due to the extremely stressful environment, they may employ a defence mechanism of “blocking out” or “numbing”/ “desensitisation” of emotions in order to survive. Channelling “I am a block of wood” is sometimes your only defence in a situation where you are entirely powerless. These children find allowing themselves to experience emotion difficult or impossible, which limits their ability to understand emotion in others, even long after the abuse/ trauma has ended.
These two groups of children may have “attachment disorders”; some may grow up to develop “personality disorders”. Emotional availability of parents and care givers and exposure to violence lie on a continuum, and it is likely that even within the general population, there is variation in how in tune people are with their own emotions and the emotions of others even if they have not been through abuse and trauma.
There are children who have no difficulty with step 1 and 2, but have problems with step 3. They understand that people have emotions and they experience their own emotions. However, their own emotions are so over-encompassing, often due to insecurity; that they are unable to think about or care about the emotions and feelings of others. These children may have suffered abuse or neglect as children and pushing heavily for their own needs and wants has been the only way they have been able to survive. If these children are asked about emotions, they are able to describe them well. They are able to demonstrate theory of mind in non-emotive tasks and may even, in a hypothetical scenario that does not involve them, have no difficulty in seeing both points of view. However, when the scenario is switched to involve them, their thinking becomes self-focused and there is no room to think about other people’s feelings. Their own feelings are always prioritised over that of others. These children may be thought of as “narcissistic” and may grow up to have personality difficulties.
Finally, there are children who have no problem with empathy but choose to behave in a hurtful way to other people for their own reasons; they gain pleasure from being in power and deliberately causing pain, to gain membership to a culture or subculture, to extort money, to gain respect or retribution to name a few.
Hopefully, by now, you may have a better chance of determining which of our “animal killers” is the most likely to have an autistic spectrum disorder. Scroll down, to see if you are right.
Case (a) by ascribing intent to the hamster is in possession of basic theory of mind (a more clearly autistic response in this situation would have been to say “The hamster was hurting me so I stopped it from hurting me”); in this case additional examples of behaviour would need to be examined to argue a case one way or another. Case (b) has autism. There is clearly no theory of mind going on here, the squirrel was a mere target for target practice and may as well have been an inanimate object. Case (c) is definitely not autism as cooperating to torture a cat requires social skill between the two boys, unless there is a clear “leader” and “follower”. By attempting to deceive people by denying knowledge of what happened implies quite a sophisticated theory of mind. They would need to realise that you did not know what really happened, and that if they denied knowledge, they may be able to convince you that they were not involved.
Autism has several other criteria (the formal definition of autism being of “a triad of difficulties in social interaction, communication and restricted and repetitive interests”), so you would never make a diagnosis based on something as simplistic as the above. It is however useful to illustrate the importance of detailed information in assessment of every single feature of autism as scenarios which present behaviourally in a very similar way (e.g. killing of an animal) may have very different causes. A typical autism assessment involves information gathered from multiple sources and in depth interview and observation by a multi-disciplinary team.
ADHD stands for attention deficit hyperactivity disorder. When I tell people that I am an ADHD specialist, the next question is usually, “What is ADHD anyway?”. It then turns out that the common conception of an ADHD child is of a naughty boy running around the place, and that the common misconception of treatment is of medication to “calm the kid down” or “sedate him”. So to set the record straight, ADHD is primarily a brain disorder that makes focused attention difficult. The hyperactivity is secondary. It is caused partly by genetic factors, and partly by environmental factors. The environmental factors that are important are usually those around pregnancy, birth and early infancy.
I could talk about symptoms and signs, dopamine receptors, synaptic disruption in the fronto-striatal pathways, but you can get that information from any google search. I don’t think that that will help you understand ADHD or its treatment. So instead, I am going to talk about air traffic control. It’s a long analogy, I apologise, but if you bear with me, you will understand more than most medical students about ADHD and its treatment.
You are watching planes at Heathrow airport. The planes are not behaving as they should for some reason. Pilots are circling the landing strips at random, flying very fast at times and almost crashing in an uncontrolled manner. Sometimes multiple planes are attempting to land at once and sometimes planes are adjusting direction and altitude quickly to avert a crash. There doesn’t seem to be any order and the planes will cause a major accident if they don’t slow down. Your first instinct to solve this problem may be to tell all the pilots to reduce their speed. “Pilots, stop being so ‘hyperactive’, slow down!” Sure, that has stopped the pilots whizzing around causing accidents, but it hasn’t improved their ability to land planes. Now, they are slowly and lethargically circling the airport at random. They don’t crash because they are going so slowly, but they don’t do much else either, they don’t know where and when to land.
If you were to go to the air traffic control room and see what was actually happening, you would come up with a better solution. At air traffic control, what you find is that half the staff have disappeared (there is an economic downturn you know), and the remaining staff have been replaced by pimple faced 16 year olds. Each child is looking at 6 screens with two head phones on with pilots shouting at them “Tell me what I do now? What do you want me to do now?” Most of the kids are completely overwhelmed, and banging their heads against the wall. Some are up to the challenge and attempting to land planes, others are shouting random orders based on knee jerk reactions.
Now what is your solution?
From this vantage point, you can clearly see that the pilot’s speed is not the issue. What is the issue is that the control room is ineffective. It is under resourced and has not been taught how to deal with multiple demands on attention and how to organise the information it is getting in order to achieve a goal.
There are 3 options:
1) Re-employ the senior management of the air traffic control room to train the 16 year olds in air traffic control. This will take time, money and a lot of effort. You are still in effect operating with only half the staff, but with time, the senior managers will be able to train the 16 year olds, identify their strengths and weaknesses, motivate and organise them into a team that can effectively manage to land planes, forever. The managers must be committed, able to deal with frustration and most of all, not give up.
2) Call in the cheap immigrant labour from Planet Zog. They will arrive en masse in the morning; land all the planes for you and then blast off in their space ship again at night for next to no money. They only speak Zog, so they cannot train your staff. They also like to pass wind and can make life slightly unpleasant while they are around.
3) Do nothing. Let the situation “muddle through”. There can be two outcomes for this strategy. The 16 year olds may learn slowly from experience and mature into men and women with greater experience and knowledge to be able to land planes on their own. They might crash a few planes, but at the end, emerge mature and competent. Alternatively, the 16 year olds may lose hope. They crash a few planes. Initially by accident. They get lambasted by the press “You useless people, you good for nothing kids. Why can’t you even land a plane?” They crash a few more planes. They decide this is kind of fun, and deliberately crash planes.
Hopefully this will help you to understand that ADHD is primarily a brain disorder, not an “energy” disorder. The control room is the brain, the staff are neural circuitry. The focus in ADHD should be on “Attention deficit”, not the “hyperactivity”.
In ADHD the brain is under functioning, it is unable to organise or prioritise the stimuli it is being constantly fed. It cannot attend to one thought, or follow through on one action, because it is constantly distracted by other thoughts and stimuli. The result is endless non-goal oriented activity; purposeless movement; hyperactivity. Activity itself is not a problem. Endless goal-oriented activity, purposeful movement to multiple demands is multi-tasking, is productivity. Sedation is not the solution. This will slow the brain and body down so that damage will not be caused, but nothing will be actively achieved either. The solutions are:
1) Behavioural management training. This can only realistically be done by parents (with training and support from teachers and psychiatrists/ psychologists). Done well, it can train the child to function at an appropriate level, and motivate them to attend. It is labour intensive, takes time and is expensive. It requires a lot of work and dedication from parents, but can offer long term change. In a randomised clinical trial of behavioural management training against medication, behavioural management produced equal results to medication, few side effects and with longer lasting effects (MTA, 1999). This is why NICE (National Institute of Clinical Excellence in the UK) guidelines suggest behavioural management as first line treatment for ADHD. Unfortunately, much of what the NHS is currently providing in terms of “behavioural management training for ADHD” (if it is even provided) does not match the behavioural management training given in the clinical trial. In pragmatic studies (studies using real life clinics, and unselected patients rather than well-funded research teams with patients recruited for commitment) there is little evidence for benefit of behavioural management. The problem? Cost and parental resources.
2) Medication. This is typically in the form of a stimulant, which stimulates the brain to work. Most of us are already taking a brain stimulant everyday to help with our functioning on a daily basis. Caffeine. Caffeine is in the same class of drugs as methylphenidate (the main ADHD medication), cocaine and amphetamines. Methylphenidate does not cause highs or addiction at doses prescribed in children for ADHD treatment. It can be abused which is why it is a prescription only medication and prescribers will not prescribe it to children whose parents are known drug users. Medication is a cheap and fast solution, but once the medication is stopped, the benefits are also gone. It can sometimes be a good strategy to use medication to allow children to begin participation in behavioural management training. Some children will experience side effects. The tolerability of the side effects is variable between individuals. About 30% of children will not respond to methylphenidate. Good clinicians can get good outcomes from medication prescribing. Bad clinicians; are bad clinicians.
3) Do nothing. Attention levels in the general population increases with age (see my post on attention), and this is no different in children with ADHD. By late adolescence, some children’s attention will have improved to the extent that they no longer fall under the category of having ADHD. By late adolescence the requirement to attend school and formally pay attention for long periods of time is over, and many adolescents with ADHD choose occupations and pastimes that require less focused attention. Thus, their relative attention deficits have less impact on their lives. Only around a third of children progress from childhood ADHD to adult ADHD. However, there is also high downside risk related to the “do nothing” option. We know, that a significant proportion of the “do nothing” group end up being marginalised from school, singled out and scapegoated by parents and teachers and bullied by peers. The impact of these experiences is highly damaging to children and can lead to additional mental health and social problems with more serious consequences than just inattention. ADHD is related to higher rates of conduct disorder, depression, personality disorder, drug abuse and criminality.
Treating ADHD, by whichever method, is not really about “calming children down” as is commonly perceived. It is about allowing potential to be achieved and preventing conduct disorder, depression, personality disorder, drug abuse and criminality.
I know that ADHD is a highly emotive topic for many, so please feel free to air your views.
The MTA Cooperative Group (1999) A 14-Month Randomized Clinical Trial of Treatment Strategies for Attention-Deficit/Hyperactivity Disorder. Archives of General Psychiatry. 56:1073-1086