Top Ten Frequently Asked Questions
1. What is Autism?
2. What are the charactaristics of autism?
3. What are the causes of autism?
4. How is autism assessed or diagnosed?
5. Who is affected with autism?
6. How common is autism?
7. How does autism affect behaviour?
8. Can people with autism be helped?
9. What services are available for people with autism in Kingston?
10. What does Autism Ontario do to help people with autism?
For more information, you may also wish to visit Autism Ontario's Knowledge Base (link will be inserted shortly. Thanks for your patience.)
1. What is Autism? (back to top)
Autism Spectrum Disorder (ASD), usually referred to as "Autism", is a brain disorder that typically affects a person's ability to communicate, form relationships with others, and respond appropriately to the environment. It is a life-long developmental disorder that that affects the individual's ability to understand what they see, hear, see, touch, and taste. Although the range and intensity of the disability varies greatly, all individuals affected by it have difficulties communicating, learning and developing social skills. People with Autism have to work to learn normal patterns of speech and communication, and how to appropriately relate to people, objects, and events.
- Communication - Verbal and non-verbal
- Social interactions
- Sensory Issues
- Learning in "normal" settings
- Repetitive behaviours
- Marked restriction of activities and interests
People with autism 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. Despite some differences, people with ASD tend to share certain social, communication, motor, and sensory problems that affect behaviour in predictable ways, the severity of these characteristics varies among affected individuals but typically include the following:
- Communication delays e.g. language development. If language does develop, it usually delayed and includes peculiar speech patterns or the use of words without attachment to their normal meaning. Some individuals with autism repeat or "echo" verbal utterances made others - this is called echolalia. Those individuals who are able to use language effectively may still use unusual metaphors or speak in a formal and monotone voice.
- Social relationships issues. Individuals with autism often have difficulty interacting with peers. The autistic child often avoids eye contact, resists being picked up, and can seem distant or "tuned out", s/he will tend to engage in parallel play rather than interactive play and can lack the ability to play imaginatively. The affected individual may have difficulty understanding other people's feelings. These difficulties can hinder the development of friendships.
- Inconsistent Patterns of sensory responses. The child who has autism at times may appear to be deaf and fail to respond to words or other sounds. At other times, the same child may be extremely distressed by an everyday noise such as a vacuum cleaner, school bell or a dog's barking. The child also may show an apparent insensitivity to pain and a lack of responsiveness to cold or heat, or may over-react to any of these.
- Ability to Learn. Individuals with ASD may have "splinter" skills - scattered things done quite well in relation to overall functioning - such as drawing, music, math, calendars, computers, mechanical ability such as working with complex video/audio equipment or memorization of facts with no regard to importance (or lack of it). Many autistic persons test as cognitively delayed are non verbal or have serious language delays.
- Repetitive movements. People with autism may have ritualistic actions that they repeat over and over again, such as spinning, balancing, rocking, staring, finger flapping, hand flicking, twisting, tip toe walking, and/or hitting self, etc. This individual can be aggressive towards others; obsessive about patterns; repetitive; demand strict routines. They may display repetition by following the same route, the same order of dressing, or the same schedule everyday, etc. If changes occur in these routines, the preoccupied child or adult usually becomes very distressed.
- Marked restriction of activity and interests. 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.
3. What are the causes of autism? (back to top)
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. ASDs are present from birth, and affect the way the brain uses information... Some research suggests that ASDs could be a "physical" problem affecting those parts of the brain that process language and information coming in from the senses. There may be some imbalance of certain chemicals in the brain. It is well established that there is a genetic component to ASDs. It is currently thought that Autism may indeed result from a combination of several "causes". 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.
4. I think my child may have autism, what do I do? (back to top)
If you think your child may have autism, make an appointment with your family doctor or pediatrician. It is important to note that some family physicians and even pediatricians are not as familiar with ASD as one might hope or expect. Parents are often given reassurance that the concerns they have about their child are unnecessary, that the child is going through a "phase" or is just a little delayed for his/her age. Trust your instincts! If, after seeing your doctor and/or assessment team, you still have concerns, ask to be referred elsewhere for another opinion. Remember, parents, family members or other caregivers of children with ASDs are usually first to notice delays in the child meeting the usual developmental milestones or differences in the ability to speak, make eye contact, play with other children or interact socially. In some high functioning individuals, ASDs may go unnoticed for years and be diagnosed only during an educational impasse or a life crisis which puts a person in contact with professionals able to recognize the disorder. Autism may also go unnoticed when a person has other disabilities.
Your doctor can refer you to a specialist (e.g., a developmental pediatrician), or team of professionals, for a developmental assessment. A developmental assessment will look at your child's social, cognitive, communication, and motor skills. ASDs are not diagnosed based on only one factor or symptom but when a co mbination of specific behaviours, communication delays, and/or developmental disabilities is confirmed.
There are several diagnostic tools that may be used to diagnose various ASDs including:
- Observation tools such as the Autism Diagnostic Observation Schedule (ADOS-G)
- The Childhood Autism Rating Scale (CARS)
- The Autism Diagnostic Interview - Revised (ADI-R)
Some of the common characteristics which are usually considered include:
- Lack of imaginative and social play
- Difficulty making friends with own age group
- Inability to initiate or sustain a conversation
- Stereotyped, repetitive, or unusual use of language
- Restricted and/or overly-intense interests
- Overly dependent on specific routines or rituals
- Preoccupied with parts of objects
Early screening and diagnosis result in earlier and therefore more effective treatment. Screening tools such as The Checklist for Autism in Toddlers (CHAT) can be used by family doctors and pediatricians who are the first health professionals to see infants and toddlers on a regular basis. The earlier the diagnosis can be confirmed by a specialized diagnostic team, the earlier any necessary effective treatment can begin.
Checklist for Autism in Toddlers - screening tool to be used by family doctors and pediatricians during the 18 month developmental check-up.
Section A - Ask Parent: Yes or No?
____ 1) Does your child enjoy being swung, bounced on your knee, etc.?
____ 2) Does your child take an interest in other children?
____ 3) Does your child like climbing on things, such as up stairs?
____ 4) Does your child enjoy playing peek-a-boo/hide-and-seek?
____ *5) Does your child ever pretend, for example, to make a cup of tea using a toy cup and teapot, or pretend other things?
____ 6) Does your child ever use his/her index finger to point, to ask for something?
____ *7) Does your child ever use his/her index finger to point, to indicate interest in something?
____ 8) Can your child play properly with small toys (e.g. cars or bricks) without just mouthing, fiddling, or dropping them?
____ 9) Does your child ever bring objects over to you, to show you something?
Section B - Physician observation: Yes or No?
____ i) During the appointment, has the child made eye contact with you?
____ *ii) Get child's attention, then point across the room at an interesting object and say "Oh look! There's a (name a toy)!" Watch child's face. Does the child look across to see what you are pointing at? NOTE - to record yes on this item, ensure the child has not simply looked at your hand, but has actually looked at the object you are pointing at.
____ *iii) Get the child's attention, then give child a miniature toy cup and teapot and say "Can you make a cup of tea?" Does the child pretend to pour out the tea, drink it etc.? NOTE - if you can elicit an example of pretending in some other game, score a yes on this item
____ *iv) Say to the child "Where's the light?" or "Show me the light". Does the child point with his/her index finger at the light? NOTE - Repeat this with "Where's the teddy?" or some other unreachable object, if child does not understand the word "light". To record yes on this item, the child must have looked up at your face around the time of pointing.
____ v) Can the child build a tower of bricks? (If so, how many?) (Number of bricks...) * Indicates critical question most indicative of autistic characteristics.
5. Who is affected with autism? (back to top)
Autism is distributed thought the world among all races, nationalities, cultures, and social classes. It is most common in males, with a ratio of males to females of 3-4 to 1.
6. How common is autism? (back to top)
Autism is the most common neurological disorder affecting children and one of the most common developmental disabilities affecting Canadians. Autism is the third most common developmental disorder - more common than Down Syndrome or cystic fibrosis. "Classic autism" usually appears during the first three years of life.
7. How does autism affect behaviour? (back to top)
In addition to severe language and socialization problems, people with autism often experience extreme hyperactivity or unusual passivity in relating to parents, family members, and other people. Behaviour problems range from very severe to mild. Severe behaviour problems take the form of highly unusual, aggressive, and in some cases, even self-injurious behaviour. These behaviours may persist and be difficult to change. In its milder form, autism resembles a learning disability. Usually, however, even people who are only mildly affected are substantially handicapped due to deficits in the areas of communication and socialization.
8. Can people with autism be helped? (back to top)
Yes, individuals with autism can be helped. Many people with autism can become more responsive to others as they learn to understand the world around them. Some of the "symptoms' often associated with autism may lessen as a child ages; others may disappear altogether. With appropriate intervention, many of 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.
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. Instruction for children with autism typically includes:
- 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
Studies show that all people who have autism can improve significantly with proper instruction. 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
- music therapy
- occupational therapy
- physical therapy
- sensory integration
- speech/language therapy
- communication and social skills training
Note: Because 'autism' was first described in the 1940's, little is currently known about the later life course of people with autism. To date, drug treatments act on symptoms of ASDs and not the core difficulties of social, communication and imagination functions.
9. What services are available for people with autism in Kingston? (back to top)
Learning that your child has some form of ASD can be a very difficult and emotional experience. However, help is available to you and your family. In order to access help, it will be of great benefit for you to first educate yourself about ASD so that you can better understand your child and exactly what you're dealing with. Books, courses, and workshops are available to help you with this. (See our Links and Resources section for further information.)
One resource that AO-K highly recommends is the Autism Society Ontario's manual: Children Diagnosed with Autism: What to Expect and Where to Get Help - Strategies and Information for Ontario Families and Care Providers (http://www.autismsociety.on.ca/childrenorderform.pdf). It's an excellent source of information on many topics and issues related to ASD. This manual provides a thorough discussion of Autism which covers everything you can do to help the preschooler with ASD. As the title indicates, it is geared toward helping children diagnosed with an ASD, regardless if age. Although some of the information is clearly meant for younger children, most of the subjects reviewed will continue to be useful throughout the school years. This manual can be treated like a primer or beginners guide no matter what the age of the child.
Topics included are:
- Autism Spectrum Disorder: An Overview
- Getting a Diagnosis
- Dealing with your Emotions
- The First Weeks after Diagnosis
- Intervention Options for Behaviour and Learning
- Speech, Language and Communication
- Occupational Therapy
- Toilet Training
- Financial Resources
- How to Keep Records
- Everyday Tips for Everyday Issues-By Parents
- How to Speak Up for your Child's Rights
- Behavioural Interventions
Another first step is contacting agencies that may be able to help you. Unfortunately, waiting lists for services in the Kingston area (as elsewhere) tend to be weeks, months, or sometimes even years long, so the sooner you get your child on (a) waiting list(s), the better. Your Autism Society Ontario - Kingston Chapter is currently developing a Kingston and area resource summary for your reference. We hope to be posting this "guide" for your reference in the very near future.
10. What does the Autism Ontario do to help people with autism? (back to top)
The Autism Ontario is the leading source of information and referral on autism and one of the largest collective voices representing the autism community. Members are connected through a volunteer network of 29 Chapters through the province of Ontario.
The mission of Autism Ontario is to promote lifelong access and opportunities for persons within the autism spectrum and their families, to be fully included, participating members of their communities.
AO is guided by its Board of Directors, composed primarily of parents of individuals with autism, a host of volunteers and respected professionals who provide expertise and guidance to the Society on a volunteer basis.
AO is dedicated to increasing public awareness about autism and the day-to-day issues faced by individuals with autism, their families, and the professionals with whom they interact. The Society and its chapters share common goals of providing information and education, supporting research, and advocating for programs and services for the autism community.
AO chapters are operated by parents or professionals who volunteer to share their knowledge of local school boards, doctors, and other services. All are accessible on the internet and some chapters offer informative newsletters and host regular support group meetings.