Title: Autism – Is it what you think it is?
VIET Psychology – The Vietnamese Peer-reviewed Student Journal of Psychology
Author: Thinh Truong Ha, University College London
A Vietnamese version of this article is available here.
Recently, “autism” has entered the everyday vocabulary of many young people. The term is used to describe a temporary sense of “loneliness, social withdrawal, and isolation” (kenh14). The term was actually used originally to refer to a mental disorder that causes life-time negative effects on social interactions. There is key difference between the two usage of the word: while one refers to fleeting phases in a normal person’s life, the other is a serious condition that is often debilitating to the family of those affected, and thus warrants proper understanding and usage of the word.
April is officially the national autism awareness month in the U.S. In the interest of highlighting the growing need for concern and awareness about autism, this article will present a short introduction to the clinical disorder, including its symptoms, diagnosis, causes and treatment. To now, Autism is one of those conditions that still poses a lot more questions to researchers than it provides answers. There are a lot of confusion and misunderstanding about the condition, not in just the general public, but also in medical professionals without the relevant expertise. Towards the end this article will also aim to debunk the most common myths regarding autism.
What is Autism? – The Key Facts (1)
Autism has been characterised as a pervasive developmental disorder (PDD), as an organic dysfunction of biological origin, and as a brain disorder, that affects a person’s ability to communicate, form relationships with others, and respond appropriately to the environment, each in varying degrees.
An important fact to note is that it is not a single condition, but it rather refers to a group of similar or over-lapping patterns of personality traits and problematic behaviours. Those affected by autism falls on a spectrum called rối loạn phổ tự kỷ – autistic spectrum disorder (ASD), ranging from “high-functioning” individuals to individuals who lack any means of communicating with others.
In the U.S., 1 in 110 children are diagnosed with ASD – ten times more than its prevalence 40 years ago. It is hotly debated whether this increase can be explained by better awareness and diagnosis of the condition, or if there are other environmental factors at play. Autism is four to five times more common among boys than girls, with an estimated 1 out of 70 boys and 1 in 315 girls diagnosed with ASD in the U.S. (2)
Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means.
Clinical Characteristics and Diagnosis (1&3)
*Disclaimer: This section should only be used for informational purposes. Only psychiatrist or paediatrician with the relevant expertise can only give a formal diagnosis.
The core characteristics of ASD are 1) social & communication deficits, and 2) tendencies to engage in repetitive behaviours; some individuals also suffer from 3) language disability. Many autistic individuals are prone to tantrums and aggression; the condition also often co-morbid with attention deficit/hyperactivity, anxiety and mood disorder. The search for biological markers is still early in development; as such Autism is mainly defined using behavioural descriptions.
To quality for an autism diagnosis an individual must meet all of the following criteria: (3)
A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
- Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
- Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
- Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people
B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
- Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypes, echolalia, repetitive use of objects, or idiosyncratic phrases).
- Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
- Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
- Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
D. Symptoms together limit and impair everyday functioning.
Some individuals diagnosed with high functioning autism can suffer from the difficulties presented above, but can usually attend school. While their academic achievements, particularly in their areas of special interest can be excellent, these difficulties can often impact the ‘ordinary’ activities in daily life, making it harder for individuals with ASD to integrate. Errors of judgment about social situations are common, especially where the social rules are not made explicit. These individuals also often do not recognise that their interests are not shared by others.
To date we have not been able to pinpoint the exact cause of the disorder. We know that autism have a strong genetic basis, however this is complex as it is unclear whether ASD is a result of rare mutations, or rare combinations of common genetic variants.
Multiple theories have been proposed however none of them can satisfactorily provide a full account of the disorder. A commonly accepted theory of autism is that these individuals lack “Theory of Mind”, such that they cannot comprehend that others can have beliefs, desires and intentions that are different from one’s own. While this theory explains the social and communication difficulties, the non-social features of autism are unexplained. There are neuropsychological evidences that suggest ASD individuals have a broken mirror neuron system (MNS). The MNS operates when an animal performs and action or observes another animal perform the same action. Abnormal activation in this circuit may contribute to the ASD individual’s inability to understand other people by simulating their actions, intentions and emotions. The concept of Theory of Mind and the “Broken Mirror” hypothesis will be discussed in forthcoming articles with greater details on VietPsy.
Controversial theories attributing Autism to environmental causes, such as exposure to heavy metals, pesticides, childhood vaccines and bad parenting, have been proposed in the past and quickly dispelled by the scientific community. Most of these hypotheses are biologically implausible and lack convincing scientific evidence. However they tend to be perpetuated in the public, and especially by pseudo-scientific “doctors” claiming miracle cure for the disorder.
Treatment & Outcome (1&4)
It is important to note that autism is a pervasive developmental disorder; as such it is a lifelong condition and cannot be completely cured. Many of these individuals with ASD have very poor outcomes in life, especially low-functioning cases. Regardless, their impairment can be improved, and with sufficient intervention their chances of leading relatively normal lives can be improved.
Having a child with Autism is very stressful for parents, however, there are people who will try to take advantage of the family’s situation by offering “miracle” cures with little or no scientific evidence to back them up. Before embarking on certain treatment, it is important to make sure that 1) the therapist has sufficient training and experience with ASD children, 2) the method employed is scientifically proven to have beneficial effects.
The most commonly employed intervention therapy, that have been has become widely accepted among health care professionals, is Applied Behaviour Analysis (ABA). ABA encourages positive behaviours and discourages negative behaviours in order to improve a variety of skills. Examples of other reliable methods that can also be employed to form a complete treatment program are:
- Floortime, which focuses on how the child deals with sights, sounds and smells.
- Picture Exchange Communication System (PECS), which aims to provide non-verbal children with a mean of communicating.
- Speech and Language Therapy, aiming to maximize communication skills.
A comprehensive list by researchautism.net has been composed for parents to check which kind of therapy works and which doesn’t. For other treatment methods please check the fourth link in the reference.
Myths about Autism
Myth #1 Bad parents raise autistic children: Years ago, before we fully understood the causes of autism, people used to believe that autism was a result of mental child abuse, that only kids with cold, unemotional parents became autistic. Today, we understand that autism is not a psychological illness, but rather biological in nature.
Myth #2 Children with autism are not able to show affection: Autistic children display affection in their own unique ways. People who don’t understand them can’t recognize their signs of emotion, love, and sadness, but that doesn’t mean that they are unable to express these feelings. With time, children with Asperger syndrome learn how to show affection in ways that people outside of their families can recognize.
Myth #3 Autistic people cannot empathize: Because people with autism have difficulty communicating their feelings and thoughts to others, some people conclude that they must not have feelings of empathy. Nothing could be further from the truth. Autistic children have strong emotional connections with family and friends, but they need to learn how to recognize their own feelings, label them, and communicate them to the world. Conversely, people who are unable to feel emotions, sociopaths, have narcissistic personality disorder, which has no connection to autism, whatsoever.
Myth #4 People with autism spectrum disorder are mentally retarded or mentally ill: Autism spectrum is a neurodevelopment disorder, not a mental illness. Also, studies show that people with autism have average to medium intelligence. However, children with autism often suffer from psychological problems because of having to deal with their disorder. Many autistic children experience social anxiety, frustration, obsessive-compulsive disorder, and depression. In addition to receiving autism-based services, a child with autism also benefits greatly by receiving psychotherapy.
Myth #5 Children on the autism spectrum cannot communicate verbally: The symptoms of autism vary by severity, hence the “spectrum.” Children with autism often differ in their modes of communication, but rarely are they ever completely mute. For autistic kids, speech patterns range from repetitive noises and mimicked phrases, to sign language and verbal communication.
Myth #6 Autistic kids are savants, i.e. hidden geniuses: To begin, according to the official diagnostic manual, no such “savant syndrome” exists, at least not by definition. Secondly, it is more likely that savant syndrome, the ability to excel at one activity, while performing exceptionally poorly at another, is one of many common symptoms of autism spectrum disorder. Just like a young genius who masters complex mathematical theories but fails to understand grammar, a child with autism might excel at spatial awareness skills, while scoring poorly on fine motor-development.
Myth #7 Children with Asperger’s syndrome, or other forms of autism, cannot sustain healthy, long-lasting relationships: For most children with ASD, forming friendships is a constant struggle. Autistic children often have difficulty maintaining eye contact, feel overwhelmed in large groups, and respond negatively to tactile experiences, such as hugs and kisses. In many cases, children with autism learn the social skills needed to achieve healthy relationships with others. Even children who don’t master these social skills are still able to experience loving, mutual relationships with family members and friends who understand their special behaviors.
Myth #8 Autism is becoming an epidemic: An epidemic is something that strikes suddenly, and with great numbers. Contrary to popular belief, there are no more autistic children today than there were fifty years ago. If anything has changed, in regards to autism, in recent decades, it is our knowledge and awareness of the facts of autism spectrum disorder. It may seem that there has been an increase in instances of autism, but it is more likely that there has been an increase in its diagnoses, because we have become better at recognizing the symptoms of autism and administering treatment.
Myth #9 Autism is a curable disease: There is no universally accepted “cure” for autism, but there exist varieties of treatments that effectively help one cope with the symptoms of autism.
Autism can be a debilitating disorder, and by now I hope you’ve realized that it refers to something completely different to the meaning that you are so used to in everyday life. This effort may be insignificant in the big picture, however we hope that with this new knowledge, you will use the word “tu ky” with more sensitivity.
To those parents with autistic children, we realize that at times it will be much more difficult for you to deal with the diagnosis than your child, and we applaud you for the incredible love and dedication you’ve shown. We hope this article have clarified some questions you have about the disorder. In link 5, 6 and 7 we hope you will find both a social support network for yourself and suitable professional treatment for your child.