(Used with the permission of Autism Society Canada, 2014)
Terms and Labels
Terms used to refer to various Autism Spectrum Disorders (ASDs) can be very confusing at first: one will hear terms such as: autism, classic autism, high functioning autism, Autistic Disorder, Asperger Syndrome or Asperger's Disorder, Pervasive Developmental Disorder (PDD), and/or Autism Spectrum Disorder (ASD)
It is important to distinguish between the clinical terms and descriptions of ASD and our understanding and knowledge of people who live with ASD. We need to understand clinical terms used in medical settings, during diagnosis, and in certain treatment or intervention settings. However, it is wise to keep in mind that these terms may also be seen as limiting labels to some people on the spectrum who feel that ASDs have been "medicalized" to the point where individuals who are unique in their skills, abilities and value to their communities, have been forgotten or eclipsed by the "disorder".
The term "autism" is often used in two different ways. It is used to refer specifically to Autistic Disorder and it is also used more generally to refer to all ASDs. The term "spectrum" refers to a continuum of severity or developmental impairment. Children and adults with ASDs usually have particular communication and social characteristics in common, but the conditions cover a wide spectrum, with individual differences in:
- Number and particular kinds of symptoms
- Severity - mild to severe
- Age of onset
- Levels of functioning
- Challenges with social interactions
When speaking of ASDs, most people are referring to three of the PDDs that are most common:
- Autistic Disorder (also called autism, classic autism and AD)
- PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified)
- Asperger's Disorder (also called AS, Asperger's Syndrome and Asperger Syndrome)
Generally speaking, individuals with ASDs have varying degrees of difficulty in social interaction and communication and may show repetitive behaviours and have unusual attachments to objects or routines.
Autism is the most common neurological disorder affecting children and one of the most common developmental disabilities affecting Canadians in general. ASDs change the way the brain processes information and can affect all aspects of a person's development. Classic autism usually appears during the first three years of life. Autism is four times more common in boys than girls. Each individual is unique - no one person with an ASD responds or behaves exactly like another with the same diagnosis.
Several other medical conditions also include some features of PDD, such as Down Syndrome, Prader-Willi Syndrome, Fragile X Syndrome, Landau-Kleffner Syndrome, William's Syndrome or Tourette's Syndrome but PDD does not actually include these medical conditions.
General Characteristics of Autism
Children and Adults with ASDs have Challenges with:
- Social interactions
- Verbal and non-verbal communication
- The ability to learn (in the usual settings)
- Repetitive behaviours
- Unusual or severely limited activities and interests
They usually find it hard to communicate with others in a typical way and have difficulty understanding social conventions. As a result, individuals with autism may respond in unusual ways to everyday situations and changing environments.
Autism varies tremendously in severity. Individuals with severe autism conditions may have serious cognitive disability, sensory problems and symptoms of extremely repetitive and unusual behaviours. This can include tantrums, self-injury, defensiveness and aggression caused by an inability to communicate. Without appropriate intensive intervention, these symptoms may be very persistent and difficult to change. Living or working with a person with severe autism can be very challenging, requiring tremendous patience and understanding of the condition. In its mildest form, however, autism is more like a personality difference caused by difficulties in understanding social conventions.
Children with ASDs develop differently and at different rates from other children their age in the areas of motor, language, cognitive and social skills growth. They might be very good at advanced or complex skills such as solving math problems but find the "easy" things, like talking or making friends' very difficult. Some children with ASDs develop large vocabularies and can read long words but may be unable to vocalize the sound of a single letter. A child may also learn new skills, such as saying a number of words, but lose this ability later on.
A Wide Spectrum of Disabilities and Different Abilities
- Some people with ASDs may prefer to be left alone, showing no interest in people at all. They may not notice when people are talking to them.
- Others may interact strangely with people. They might be very interested, but not know how to talk, play or relate to others. Difficulty "joining in" is common in ASDs because it is hard to "read" or understand other people. For adults, difficulty with verbal and non-verbal communication can make interaction with others very stressful.
- Children with ASDs may not relate to their own age group and prefer the company of adults.
- Some people with ASDs make no eye contact or are less responsive to eye contact. Some use peripheral vision rather than looking directly at others.
- They might not respond to or understand smiles and facial gestures.
- Touch may feel painful or upsetting to persons with ASDs and they might withdraw from family members. Children with ASDs might not like to be held or cuddled, or might cuddle only on their terms.
- People with ASDs often have trouble talking about their own feelings or understanding other people's feelings.
- Difficulty controlling emotion and excitement can also affect social interaction.
A note on Individuality
Autism conditions show themselves in many ways - there are characteristics common to autism but a person with autism will not have all of these characteristics and they will vary greatly in severity person to person.
Verbal and Non-verbal Communication:
- Speech and language skills may begin to develop and then be lost, or they may develop very slowly or they may never develop. Without appropriate intensive early intervention, more than 40% of children with ASDs do not talk at all.
- Some will communicate with gestures like pointing or reaching instead of words.
- It may be difficult or impossible to imitate sounds and words.
- Others have echolalia, which is repeating something heard. For example, if you ask, "Are you cold?" the response may be, "Are you cold?" instead of answering the question. The repeated words might be said right away or much later and may be repeated over and over. Or, a person might repeat something they heard on TV or in the past.
- Words may also be used without their usual meanings. People with autism may confuse gender, saying "he" when they mean "she" or vice versa, and/or pronouns (I, me, you).
- Non-verbal communication gestures such as waving goodbye or facial cues may not be understood.
- People with ASDs may have voices that sound flat and it might seem like they cannot control how loudly or softly they talk. There is often an unusual pitch and rhythm in speech.
- ASDs can make it very hard to initiate communication and to keep a conversation going. People with ASDs might stand too close to the people they are talking to. Some people with ASDs can speak well and have a wide vocabulary, but have a hard time listening to others. They might go on at length about something they really like, rather than have a back-and-forth discussion with someone.
Repeated and Unusual Behaviours, Interests and Routines:
- People with autism may have ritualistic actions that they repeat over and over again, such as spinning, rocking, staring, finger flapping, hitting self, etc.
- They may be overactive or very passive and can show intense anxiety or an unusual lack of anxiety. Anxiety, fear and confusion may result from being unable to "make sense" of the world in the usual way.
- They may take unusual risks with no fear of real dangers.
- Unusual postures, walking or movement patterns are common.
- They might fiercely depend on routines and want things always to stay the same so there are no surprises. Small changes in the environment or in daily routines that most people can manage (e.g. dressing in a different order, going to school by a new route or having new people around) might trigger acute distress or fear.
- People with ASDs often have a restricted pattern of interests and may have seemingly odd habits: they may talk about or focus obsessively on only one thing, idea, activity or person. Sometimes these habits or interests are unusual or socially inappropriate.
Responses to Sensations:
- People with ASDs may have both auditory and visual processing problems, and sensory input may be scrambled and/or overwhelming to them. Sensory sensitivities vary in autism, from mild to severe hyper and hypo-sensitivities.
- Unusual sensitivities to sounds, sights, touch, taste and smells: e.g. high-pitched intermittent sounds, such as fire alarms or school bells, may be painful. Rough or scratchy fabrics may be intolerable. People may have unusual sensitivities to the flickering of fluorescent lights. One or a combination of senses or responses can be affected.
- Some people with ASDs have very high pain thresholds (i.e. insensitive to pain) or very low pain thresholds.
Co-occurring Conditions: Many individuals with autism have other health problems:
- Neurological disorders including epilepsy
- Gastro-intestinal problems, sometimes severe
- Compromised immune systems
- Fine and gross motor deficits
- Anxiety and depression
Effects on Learning - Many of the characteristics and aspects of ASD listed above can interfere with the ability to learn through typical teaching methods:
- Lack of spontaneous or imaginative play (e.g. may use only parts of toys; line up or stack objects; no imaginative/pretend play).
- An inability to imitate others. (e.g. sounds, gestures, gross or fine motor movements, etc.).
- Inability to focus on the task at hand. Some will have a very short attention span or concentrate only on one thing obsessively.
- Difficulty sharing attention with others.
- Difficulty with abstract ideas (e.g. difficulty using items or toys to represent real objects).
- Difficulty grasping the concept of time and order of events.
"Able autistic individuals can rise to eminent positions and perform with such outstanding success that one may even conclude that only such people are capable of certain achievements" wrote Dr. Hans Asperger in 1944.
Unique Abilities - Individuals with ASDs have their own strengths and unique abilities:
- Some people with an ASD have an accurate and detailed memory for information and facts, high visual recall and a superb ability to manipulate data for useful purposes.
- They may be able to concentrate for long periods of time on particular tasks or subjects and be far more attentive to details than most people.
- People with an ASD sometimes have unusually good spatial perception and exceptional long-term memories, allowing them to excel in areas of music, math, physics, mechanics, science and technologies, and architecture.
How is Asperger Syndrome (AS) Different from Autistic Disorder?
AS was first identified by Dr. Hans Asperger in Austria in 1944, but his work did not find its way into the American Psychiatric Association's Diagnostic Statistical Manual until 1994. After years of misdiagnosis or lack of diagnosis there has recently been more recognition of AS and also a very noticeable increase in the number of people diagnosed with AS in North America.
- AS is often considered to be a type of "high-functioning" autism. There is some clinical controversy about whether AS is a milder form of Autistic Disorder or a distinct disorder.
- The term “high-functioning’ can be misleading in that it doesn’t necessarily translate to lower needs.
- AS tends to be recognized and diagnosed later in life, usually after 3 years of age when a child is already in school. AS can also be diagnosed much later in teens and adults.
- Unspoken rules of reciprocal social interaction and communication which most of us take for granted, such as body language, social distance, facial expressions and abstract speech or humour, may be very hard to understand.
- Many people with AS want to develop friendships but lack the social skills to begin and/or maintain a friendship. Inability to reciprocate, to listen to another person's thoughts or understand their feelings can make it hard to make and/or keep friends.
- People with AS may interpret things very literally and be quite rigid in terms of following rules and habits. Strict adherence to patterns of behaviour or rituals is common and activities and interests may be limited. Sudden changes in routine, setting or expectations can cause great anxiety. Sometimes large crowds or dealing with strangers can be upsetting as well.
- Development of learning and cognition is not usually delayed in AS and can be above average in terms of cognitive ability. Speech may be stilted but people with AS do not have language delays and may read very well or have very large vocabularies for their age. Still, they will struggle with the social uses of language and non-verbal communication. Individual needs assessment is key because functional evaluation may be more relevant than cognitive evaluation.
- Some people with AS have amazing rote memories. Coupled with an obsessive interest and/or unusual creativity, this can lead to great expertise and achievement if there is enough encouragement and opportunity to develop particular skills. History is full of examples of high achieving thinkers, mathematicians and musicians who are believed to have had Asperger Syndrome.