What is ASD? « York ASD Partnership

What is ASD?

What is Autism?

Autism is a complex developmental disability that typically appears during the first three years of life: it is the result of a neurological disorder that affects the functioning of the brain.

Autism impacts the typical development of the brain in the areas of social interaction and communication skills. Children and adults with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. They find it hard to communicate with others and relate to the outside world. In some cases, aggressive and/or self-injurious behaviour may be present. Persons with autism may exhibit repeated body movements (hand flapping, rocking), unusual responses to people or attachments to objects and resistance to changes in routines. Individuals may also experience sensitivities in sight, hearing, touch, smell, and taste.

Autism Spectrum Disorder is one of the most common developmental disabilities. Based on recent studies by Canadian researchers, the prevalence rate of Autism Spectrum Disorder (ASD) is 1 in 165. In Ontario, there is an estimated 70,000 individuals with ASD. Yet most of the public, including many professionals in the medical, educational, and vocational fields, are still unaware of how autism affects people and how they can effectively work with individuals with autism.

What Types Have Been Identified?

They are grouped under the broad heading “Autism Spectrum Disorders” or ASD – a general category of disorders which are characterized by severe and pervasive impairment in several areas of development. Diagnostic evaluations are based on the presence of specific behaviours indicated by observation and through parent consultation, and should be made by an experienced, highly trained team.

For diagnostic purposes in North America, this category of disorders is currently identified as Pervasive Developmental Disorders (1994, Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, American psychiatric Association) Thus, when professionals or parents are referring to different types of autism, often they are distinguishing autism from one of the other spectrum disorders.

Individuals who fall under the Autism Spectrum Disorder category exhibit commonalties in communication and social deficits, but differ in terms of severity, number of symptoms or age of onset. Some differences between the specific diagnoses are listed below.

Autistic Disorder

…impairments in social interaction, communication, and imaginative play prior to age 3 years. Stereotyped behaviours, interests and activities.

Asperger’s Disorder

…impairments in social interactions and the presence of restricted interests and activities, with no clinically significant general delay in language, and testing in the range of average to above average intelligence.

Pervasive Developmental Disorder – Not Otherwise Specified

(commonly referred to as atypical autism) a diagnosis of PDD may be made when a child does not meet the criteria for a specific diagnosis, but there is a severe impairment in specified behaviours.

Rett’s Disorder

…a progressive disorder which, to date, has occurred only in girls. They have a period of normal development and then loss of previously acquired skills, loss of purposeful use of the hands replaced with repetitive hand movements beginning at the age of 1-4 years.

Childhood Disintegrative Disorder

…characterized by normal development for at least the first 2 years, followed by significant loss of previously acquired skills. Autism is a spectrum disorder. In other words, the symptoms and characteristics of autism can present themselves in a wide variety of combinations, from mild to severe. Although autism is defined by a certain set of behaviours, children and adults can exhibit any combination of the behaviours in any degree of severity. Two children, both with the same diagnosis, can act very differently from one another and have varying skills.

Therefore, there is no standard “type” or “typical” person with autism. Parents may hear different terms used to describe children within this spectrum, such as: -like, autistic tendencies, autism spectrum, high-functioning or low-functioning autism, more-abled or less-abled. Whatever the diagnosis, children can learn and function productively and show gains from appropriate education and treatment. Autism Ontario provides information to serve the needs of all individuals within the spectrum. We will use the term “autism” to refer to the above disorders.

What Causes Autism?

Researchers from all over the world are searching for the answer to this question.

They are exploring different explanations for the various forms of autism.

Although a single specific cause of autism is not known, current research links autism to biological or neurological differences in the brain. In many families there appears to be a pattern of autism or related disabilities- which suggests there is a genetic basis to the disorder-although at this time no gene has been directly linked to autism. The genetic basis is believed by researchers to be highly complex, probably involving several genes in combination.

Autism is not a mental illness.
Children with autism are not kids who misbehave.
Autism is not caused by bad parenting.
There are no known psychological factors in the development of the child that have been shown to cause autism.

What are People with Autism Like?

Children within the ASD often appear relatively normal in their development until the age of 24-30 months, when parents may notice delays in language, play or social interaction.

Any of the following delays, by themselves, would not result in a diagnosis of an ASD. Autism is a combination of several developmental challenges.

The following areas are among those that may be affected by autism:

Communication: language develops slowly or not at all; uses words without attaching the usual meaning to them; communicates with gestures instead of words; short attention span;

Social Interaction: spends time alone rather than with others; shows little interest in making friends; less responsive to social cues such as eye contact or smiles;

Sensory Impairment: may have sensitivities in the areas of sight, hearing, touch, smell, and taste to a greater or lesser degree;

Play: lack of spontaneous or imaginative play; may not imitate others’ actions; may not initiate pretend games;

Behaviours: may be overactive or very passive; throws tantrums for no apparent reason; may show an obsessive interest in a single item, idea, activity or person; apparent lack of common sense; may show aggression to others or self; often has difficulty with changes in routine.

Some individuals with autism may also have other disorders which affect the functioning of the brain such as: Epilepsy, Mental Retardation, Down Syndrome, or genetic disorders such as: Fragile X Syndrome, Landau-Kleffner Syndrome, William’s Syndrome or Tourette’s Syndrome. Many of those diagnosed with autism will test in the range of mental retardation. Approximately 25-30 percent may develop a seizure pattern at some period during life.

Every person with autism is an individual, and like all individuals, has a unique personality and combination of characteristics. There are great differences among people with autism. Some individuals mildly affected may exhibit only slight delays in language and greater challenges with social interactions.

The person may have difficulty initiating and/or maintaining a conversation, or keeping a conversation going. Communication is often described as talking at others (for example, monologue on a favorite subject that continues despite attempts of others to interject comments). People with autism process and respond to information in unique ways.

Educators and other service providers must consider the unique pattern of learning strengths and difficulties in the individual with autism when assessing learning and behaviour to ensure effective intervention. Individuals with autism can learn when information about their unique styles of receiving and expressing information is addressed and implemented in their programs. The abilities of an individual with autism may fluctuate from day to day due to difficulties in concentration, processing, or anxiety. The child may show evidence of learning one day, but not the next. Changes in external stimuli and anxiety can affect learning. They may have average or above average verbal, memory or spatial skills but find it difficult to be imaginative or join in activities with others. Individuals with more severe challenges may require intensive support to manage the basic tasks and needs of living day to day.

Contrary to popular understanding, many children and adults with autism may make eye contact, show affection, smile and laugh, and demonstrate a variety of other emotions, although in varying degrees. Like other children, they respond to their environment in both positive and negative ways. Autism may affect their range of responses and make it more difficult to control how their bodies and minds react. Sometimes visual, motor, and/or processing problems make it difficult to maintain eye contact with others.

Some individuals with autism use peripheral vision rather than looking directly at others. Sometimes the touch or closeness of others may be painful to a person with autism, resulting in withdrawal even from family members. Anxiety, fear and confusion may result from being unable to “make sense” of the world in a routine way. With appropriate treatment, some behaviours associated with autism may change or diminish over time. The communication and social deficits continue in some form throughout life, but difficulties in other areas may fade or change with age, education, or level of stress. Often, the person begins to use skills in natural situations and to participate in a broader range of interests and activities. Many individuals with autism enjoy their lives and contribute to their community in a meaningful way. People with autism can learn to compensate for and cope with their disability, often quite well.

While no one can predict the future, it is known that some adults with autism live and work independently in the community (drive a car, earn a college degree, get married); some may be fairly independent in the community and only need some support for daily pressures; while others depend on much support from family and professionals. Adults with autism can benefit from vocational training to provide them with the skills needed for obtaining jobs, in addition to social and recreational programs. Adults with autism may live in a variety of residential settings, ranging from an independent home or apartment to group homes, supervised apartment settings, living with other family members or more structured residential care. An increasing number of support groups for adults with autism are emerging around the country. Many self-advocates are forming networks to share information, support each other, and speak for themselves in the public arena. More frequently, people with autism are attending and/or speaking at conferences and workshops on autism. Individuals with autism are providing valuable insight into the challenges of this disability by publishing articles and books and appearing in television specials about themselves and their disabilities.

What are the Most Effective Approaches?

Evidence shows that early intervention results in dramatically positive outcomes for young children with autism. While various pre-school models emphasize different program components, all share an emphasis on early, appropriate, and intensive educational interventions for young children.

Other common factors may be: some degree of inclusion, mostly behaviourally-based interventions, programs which build on the interests of the child, extensive use of visuals to accompany instruction, highly structured schedule of activities, parent and staff training, transition planning and follow-up.

Because of the spectrum nature of autism and the many behaviour combinations which can occur, no one approach is effective in alleviating symptoms of autism in all cases. Various types of therapies are available, including (but not limited to) applied behaviour analysis, auditory integration training, dietary interventions, discrete trial teaching, medications, music therapy, occupational therapy, PECS, physical therapy, sensory integration, speech/language therapy, communication and social skills training and TEACCH.

Studies show that individuals with autism respond well to a highly structured, specialized education program, tailored to their individual needs. A well designed intervention approach may include some elements of communication therapy, social skill development, sensory integration therapy and applied behaviour analysis, delivered by trained professionals in a consistent, comprehensive and coordinated manner. The more severe challenges of some children with autism may be best addressed by a structured education and behaviour program, which contains a one-on-one teacher to student ratio or small group environment. However, many other children with autism may be successful in a fully inclusive general education environment with appropriate support.

In addition to appropriate educational supports in the area of academics, students with autism should have training in functional living skills at the earliest possible age. Learning to cross a street safely, to make a simple purchase or to ask assistance when needed are critical skills, and may be difficult, even for those with average intelligence levels. Tasks that enhance the person’s independence and give more opportunity for personal choice and freedom in the community are important.

To be effective, any approach should be flexible in nature, rely on positive reinforcement, be re-evaluated on a regular basis and provide a smooth transition from home to school to community environments. A good program will also incorporate training and support systems for parents and caregivers, with generalization of skills to all settings. Rarely can a family, classroom teacher or other caregiver provide effective habilitation for a person with autism unless offered consultation or in-service training by an experienced specialist who is knowledgeable about the disability.

A generation ago, the vast majority of the people with autism were eventually placed in institutions. Professionals were much less educated about autism than they are today; autism specific supports and services were largely non-existent. Today the picture is brighter. With appropriate services, training, and information, most families are able to support their son or daughter at home. Group homes, assisted apartment living arrangements, or residential facilities offer more options for out of home support. Autism-specific programs and services provide the opportunity for individuals to be taught skills, which allow them to reach their fullest potential.

Families of people with autism can experience high levels of stress. Due to the challenging behaviours of their children, relationships with service providers, attempting to secure appropriate services, resulting financial hardships, or very busy schedules, families often have difficulty participating in typical community activities. This results in isolation and difficulty in developing needed community supports. Autism Ontario and its local chapters are here for you.

Members of Autism Ontario represent all walks of life from rural to metropolitan communities. Embracing the diversity of our group, ASO seeks to provide an open forum for the exchange of ideas. At the very core of the ASO’s philosophy is the belief that no single program or treatment will benefit all individuals with autism. Furthermore, the recommendation of what is “best” or “most effective” for a person with autism should be determined by those people directly involved-the individual with autism, to the extent possible, and their parents or family members.

ASO provides information to assist parents, educators, and others in the decision-making process. We try to provide information on available intervention options, rather than advocating for any one particular theory or philosophy.

Is There a Cure?

Understanding of autism has grown tremendously since it was first described by Dr. Leo Kanner in 1943.

To cure means “to restore to health, soundness, or normality.”

In the medical sense, there is no cure for the differences in the brain which result in autism.

However, better understanding of the disorder has led to the development of better coping mechanisms and strategies for the various manifestations of the disability. Some of these symptoms may lessen as the child ages; others may disappear altogether. With appropriate intervention, many of the associated behaviours can be positively changed, even to the point in some cases, that the child or adult may appear to the untrained person to no longer have autism. The majority of children and adults will, however, continue to exhibit some manifestations of autism to some degree throughout their entire lives.

Autism is a complex developmental disability that typically appears during the first three years of life: it is the result of a neurological disorder that affects the functioning of the brain.