What is Autism?
The National Autistic Society, UK defines Autism as "A lifelong developmental disability that affects the way a person communicates and relates to people around them. Children and adults with autism have difficulties with everyday social interaction. Their ability to develop friendships is generally limited as is their capacity to understand other people's emotional expression."
Signs and Symptoms
There are three key areas of cluster features, which provide the criteria for a diagnosis for autism, these are known as the 'triad of impairments' (Wing and Gould, 1979)
- Social: Impaired, deviant and extremely delayed social development - especially interpersonal development. The variation may be from 'autistic aloofness' to 'active but odd' characteristics.
- Language and Communication: Impaired and deviant language and communication development - verbal and non-verbal.
- Thought and behaviour: Rigidity of thought and behaviour and poor social imagination, like ritualistic behaviour, reliance on routines, extreme delay or absence of pretend play.
- Social: Difficulties with social engagement may appear in different ways.
This will include a person who is classically 'aloof', but also a person who respond to social interaction, but may not be able to initiate it, through to the 'active but odd' person who seeks social interaction but is socially naive and cannot quite 'get it right'
A person may withdraw from social contact, or may cause others to leave them alone through their apparently 'anti-social' behaviour. They may seem cut off and passive, content to be by themselves but not resisting when others approach (especially someone familiar) who insists they join in.
Others may appear at first to be very sociable, even socially indiscriminate. They may pester people (even strangers) with questions and monologues and approach people too closely, making no distinction for different levels of intimacy. Far from avoiding others, people on this level, especially as young adults, may be desperate for friends and may be vulnerable to abuse in their eagerness to have a 'friend' at any cost. These behaviours are clearly different, almost opposites in some cases, yet they all demonstrate a lack of social understanding.
- Language and Communication: Difficulties in all aspects of communication.
The problem of autism concerns communication rather than language. At one end of the spectrum, a person may speak fluently, but their speech has odd intonation and may show echolalia (automatic reiteration of words or phrases which have been heard recently or in the past) and 'reversal' of pronouns - referring to themselves as 'you' and the person being spoken to as 'I' - (at least when very young). Their understanding is literal. To say you can do something 'standing on your head'; to tell someone 'Looks can kill' or describe a person as a 'bad apple' will cause confusion.
A person with autism will often have difficulty holding conversation and tends to speak 'at' rather than speaking 'to' or 'with' people. There will also be difficulties in understanding and using facial expressions, body posture and communicative gestures. At the other end of the spectrum, a person will have the same difficulties in understanding all forms of communication, but will have no speech and will not easily compensate with sign or communicative gesture. Communication, at all levels of ability, is directed at having needs met, rather than sharing information or interests.
- Thought and behaviour: Difficulties in flexible thinking and behaviour.
This is shown in repetitive, stereotyped behaviour and with some people, an extreme reaction to change in expected situations or routines. Play is not socially creative or symbolic (although symbolic play acts may be copied or developed) and tends to be isolated, sometimes involving spinning objects, lining objects up in a ritualistic way, or a fascination with light or angles. The more able show these difficulties in their development of obsessive interests or 'hobbies' that are pursued to the expense of everything else. Understanding of fiction is minimal, even in the more able. Learning is by rote.
A person with autism is dependant on cueing or prompting to start behaviour or trigger thoughts and feelings. It is not that the individual cannot be creative in an artistic sense but that their behaviour is almost entirely habitual. The person is likely to have poor development with their sense of self-autonomy or the planning and reviewing of their thoughts or actions.
If you see several of these characteristics over a long period of time, consider the possibility of taking the child for an assessment.
- does not respond to his/her name.
- cannot explain what he/she wants.
- language skills are slow to develop or speech is delayed.
- doesn't follow directions.
- at times, the child seems to be deaf.
- seems to hear sometimes, but not other times.
- doesn't point or wave "bye-bye."
- used to say a few words or babble, but now he/she doesn't.
- throws intense or violent tantrums.
- has odd movement patterns.
- is overly active, uncooperative, or resistant.
- doesn't know how to play with toys.
- doesn't smile when smiled at.
- has poor eye contact.
- gets "stuck" doing the same things over and over and can't move on to other things.
- seems to prefer to play alone.
- gets things for him/herself only.
- is very independent for his/her age.
- seems to be in his/her "own world."
- seems to tune people out.
- is not interested in other children.
- walks on his/her toes.
- shows unusual attachments to toys, objects, or schedules (i.e., always holding a string or having to put socks on before pants).
- spends a lot of time lining things up or putting things in a certain order.
Physically people with autism are typical in appearance. Some studies show children with autism tend to have larger head circumferences but the significance in the disorder is unclear.
There is no single test that can provide a definitive diagnosis of an autism spectrum disorder or define the intervention plan. Assessment is based on information gathered through a variety of methods and relies on the collaboration of family members, health care professionals, and educators. It is crucial in the assessment process to consider the purpose of the evaluation and most likely depends on the source of referral (e.g., parent, teacher, and other professionals), reason for referral, and the environment (e.g., school, clinic etc). The purposes of assessment could be Screening, Diagnosis, Assessing strengths/weaknesses, Planning Intervention and designing a Curriculum program.
The Diagnostic Criteria from DSM-IV 299.00 ASD (American Psychiatric Association)
(A) Total of six (or more) items from 1, 2, and 3, with at least two from 1, & one each from 2 and 3:
1. Qualitative impairment in social interaction, as manifested by at least two of the following:
(a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(b) failure to develop peer relationships appropriate to developmental level
(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(d) lack of social or emotional reciprocity
2. Qualitative impairments in communication as manifested by at least one of the following:
(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gestures or mime) .
(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
(c) stereotyped and repetitive use of language or idiosyncratic language
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
3. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
(a) encompassing preoccupation with one or more stereotyped patterns of interest that is abnormal either in intensity or focus
(b) apparently inflexible adherence to specific, nonfunctional routines or rituals
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(d) persistent preoccupation with parts of objects
(B) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
(C) The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.
Assessments procedure usually involves the following:
Informal evaluations include non-standardized tests and behavioural observation. Non-standardized tests (e.g., criterion referenced tests) compare the student's level of performance to a predetermined criterion. This form of testing would allow the examiner to look at the student's academic functioning as it relates to where he/she should be in the curriculum and also his/her needs within the demands of the everyday environment.. For students with ASD, the most common informal evaluations are observation, interaction, interview, behavioral checklists, and curriculum-based assessments where information about a child's emotional, social, communication and cognitive abilities is gathered.
Aims at discovering why a challenging behavior (such as self-destructive ones) occurs. Based on the premise that challenging behaviors are a way of communicating, functional assessment involves interviews, direct observations, and interactions to determine what a child with autism or a related disability is trying to communicate through their behavior. Once the purpose of the challenging behavior is determined, an alternative, more acceptable means for achieving that purpose can be developed. This helps eliminate the challenging behavior and decide the plan for a behaviour modification program.
Play based assessment
The therapists observe the child and family in structured and unstructured play situations that provide information about a child's social, emotional, cognitive, and communication development. By determining the child's learning style and interaction pattern through play based assessments, an individualized treatment plan can be developed.
Assessment refers to the act of collecting data. The term should not be confused with evaluation which refers to the systematic process of not only collecting but also analyzing and interpreting data. The formal assessment tools consider how the student compares with age mates in the general population on skills related to language, academics, intellectual ability, memory, etc. The assessment should address the concerns of the academic and non-academic environments.
Formal evaluation may include standardized tests or developmental scales. A standardized test allows for specific comparisons to be made between individuals. The tests have clear administration and scoring criteria with known statistical measurements. Developmental scales use interview and/or observation and usually provide age- or grade-equivalent scores. Developmental scales do not provide standard comparison scores needed to make the judgment of degree of need.
Once the evaluation has been completed professionals list strengths and needs based on the information they have gathered to be incorporated in the development of an intervention program. Parents and family members should be actively involved throughout these assessments. What actually occurs during a specific assessment depends on what information parents and evaluators want to know.
Assessments are usually conducted by
- Speech Therapists/Speech-Language Pathologists
- Occupational Therapists
- Special Educators.
Although input form all the above mentioned professionals is vital before any diagnostic label is given to a child, it is only the Paediatrician or Psychiatrist who can actually certify the child as having a Autism Spectrum disorder
If parents, teachers, and other professionals discover a child's disability early and provide the right kind of help, it can give the child a chance to develop skills needed to lead a successful and productive life. It begins from birth or first diagnosis. It involves specialized therapy services for the child, as well as support for the whole family through information, advocacy, and emotional support. Early Childhood Intervention has several goals. Firstly, it is provided to support families to support their children's development. Secondly, it is to promote children's development in key domains such as learning, communication or mobility. Thirdly, it is to promote children's coping confidence, and finally it is to prevent the emergence of greater future problems.
Intervention programs - Interdisciplinary approach
The child should be provided services in a multi-disciplinary setting. Look for a centre which has a team comprising people with varied expertise. An ideal Intervention team generally consists of Speech and Language pathologists, Occupational therapists, Special Educators, Psychologists and Counselors. A key feature of "interdisciplinary model" is where staff members discuss together and work on goals as a team. This approach would be more beneficial to the child as well as the family.
Professionals involved in intervention
A good program should involve the following consultants (along with medical practitioners) who will work as a team to enhance overall development and facilitate independence in the mainstream society. Parents play an integral role and hence should be actively involved in the whole process.
- Speech-Language Therapists
- Occupational Therapists
- Special Educators
Speech-Language Therapy is a major part of the intervention model as it has been recognized that children with autism have difficulties with language. But it is clear that traditional approaches emphasizing mastery of the formal language (grammar etc.) are largely inappropriate. Training children just to speak is not going to bring about a transformation of their behaviour.
A Speech-Language Pathologist who specializes in the diagnosis and treatment of language problems and speech disorders is ideal to help a person learn how to communicate effectively. Speech Therapists working with a nonverbal autistic individual, may consider alternatives to the spoken word such as signing, writing, typing, or a picture board with words. Speech therapists work with the child and as well as the family to build strong social bonds and incorporate the most apt communication system to enhance a positive nourishing environment. Speech therapists also help the child cope in school by designing communication systems that can be used within the school setting to facilitate social interaction among peers and adults. Using their mode of communication to not only request for needs but also express and share ideas is a primary focus of communication therapy.
Occupational Therapy (OT) focuses on improving fine motor skills, or sensory motor skills that include balance (vestibular system), awareness of body position (proprioceptive system), and touch (tactile system). Children are assessed in terms of age-appropriate life tasks. OT addresses areas that interfere with the child's ability to function in such life tasks. OT may be provided to children in the form of play activities which are used to enhance or maintain play, self-help and school-readiness skills. Occupational therapists collaborate with families and other professionals to create an environment and routines to support optimal developmental progress and outcomes.
Occupational Therapy benefits a child with autism by attempting to improve the quality of life for the individual through successful and meaningful experiences. This may be accomplished through the maintenance, improvement, or introduction of skills necessary for the child to participate as independently as possible in meaningful life activities. Such skills include coping skills, fine motor skills, self-help skills, socialization and play skills.
Occupational Therapists use a variety of theories and treatment approaches which include developmental and learning theory, model of occupational performance, sensory integration, and play therapy. The choice of therapeutic methods depends upon the specific needs of the child and the Occupational Therapist may choose to employ a combination of approaches to meet those specific needs. In most cases, treatment is provided in a one-to-one setting. Group therapy is recommended for a child whose issues are more in the areas of social-emotional adjustments and interaction. Here the therapy will focus on socialization skills such as sharing things and ideas, eye contact while interacting, body language, following rules in a game, competitiveness, following a leader, decision making etc
Occupational Therapy plays an important role in overall program planning as a member of the interdisciplinary team providing consultation or direct services. Areas of focus include: posture and movement, bilateral skills, fine motor skills, preschool / school skills, self-help skills and sensory issues.
The current role of psychologists and behavior specialists as interventionists in the education of young children with autistic spectrum disorders most often involves assessment, consultation, and development of intervention strategies. Psychologists and behaviour specialists are often involved in providing functional analysis of problem behaviours; designing behavioral interventions; providing cognitive, adaptive, and social assessments; guiding the educational curriculum in these areas; and consulting with the rest of the educational team about educational strategies and interventions. Psychologists and behavior specialists are often involved in parent training and support as well.
Psychologists, speech language therapists and occupational therapists are sometimes involved in carrying out social skills groups, generally for older school age children to help cope in the mainstream school environment.
Picture Exchange Communication System ( PECS )
The Picture Exchange Communication System (PECS) is augmentative/ alternative package that allows nonverbal children and adults with autism and other communication deficits to initiate communication. It has recently been incorporated in Speech Therapy practice to enhance speech and language development. It allows educators, care providers and families to able to readily use in a variety of settings. Verbal prompts are not used, thus building immediate initiation and avoiding prompt dependency. The system goes on to teach discrimination of symbols and then puts them all together in simple "sentences." Children are also taught to comment and answer direct questions.
Signalong is a UK based approach which offers children with learning disabilities and those around them a valuable aid to communication. A successful communication system combats frustration, builds self-esteem and a sense of achievement for everybody. Signalong achieves this through sign-supported speech. Only the most important words are signed. The use of key words simplifies sentences. The word is said as it being signed. Since signs often pictorially echo their meaning, they help clarify the subject. The action of signing slows down speech giving more time for comprehension. Facial expression and body language further enhance communication. This approach provides an opportunity to children of all abilities who are able to sign before they are able to talk to communicate, provided signs are used consistently with speech.
Sensory Integration Therapy (SI) is based on the idea that people with motor or sensory problems have difficulty processing the information their body receives through the various senses. A child with sensory issues will often present their difficulties as one or more of the following -
- being extremely silly and unresponsive
- laughing uncontrollably
- losing control of his body i.e. getting extremely limp and/or clumsy
- becoming either hyper- or hypo-sensitive to pain and other physical stimuli
- getting aggressive such as pinching or spitting
- flapping hands
- humming and clicking while wandering around aimlessly
One of the most effective treatments for Sensory Processing Disorders is a sensory diet. A "Sensory diet" provides the kind of sensory input that will help your child feel less threatened by sensory experiences, be calmer, more focused, and better able to cope.
WHEN TO USE THESE ACTIVITIES:
Periodically throughout the day to maintain self-regulation and attention
Before an event that is likely to trigger a "flight or fight" response.
E.g. before going into a crowd or an activity with a lot of unexpected or novel stimuli, before dinnertime or washing hair, before going to school.
When your child is showing poor self-regulation or a "flight or fight" response.
E.g. before activities which require your child to sit, pay attention, or focus.
before activities which your child finds difficult or frustrating.
Auditory training can be considered a form of sensory integration in which stimulation may sensitize or desensitize one or more senses. Theoretically speaking, if one or more senses are impaired in an individual, he or she may develop a distorted perception of the environment. There has been much research in the past 15 years to indicate that many individuals with autism have sensory dysfunction in one or more areas.
Music Therapy includes singing, movement to music and playing instruments. It is a good medium for children with ASD and ADD/ADHD because it requires no verbal interaction as music is by nature structured. It also facilitates play which can aid in socialization indirectly influencing behaviour.
Tips for parents
- Always be patient and allow your child to be expressive by listening only to them.
- Provide frequent positive feedback on the individual's performance.
- Keep routines and possessions organized. Try to maintain a regular daily routine. Avoid any sudden changes as autistic children frequently have trouble adapting. Gradual transitions are important if there are any changes to be made.
- Be consistent with rules and consequences.
- Keep an activity schedule or calendar posted.
- Behaviors should be addressed immediately during the situation, whether it is positive or negative. Give more attention and positive reinforcements for good behaviors and let your child know you are upset (using facial expression/body language/stern voice) when he shows negative behaviors like throwing tantrums.
- When your child is doing any physical play or activity (jumping) leave the child alone but always set a time frame. Average duration - 10 mins a day.
- Use positive reinforces to encourage positive behavior. Not always eatables.
- Try to spend as much time with them as possible, especially when the child is idle.
- Always tell them before-hand when its time to do something e.g. talking about bedtime or making the bed together, maybe 30 minutes ahead of time so they will know what to expect and reduce the chance of anxiety.
- Prepare the child before doing any activity. Give him verbal instructions
- Create specific routines for troublesome times of day (meal time or getting ready for school).
- Discuss upcoming anticipated changes in routine at a point in time that is beneficial for your child. You will have to experiment with how early the child "needs to know."
- Try to indirectly use your child's sensory preferences for fun rewards to help you handle behavior. However, try not to restrict movement activities when your child is being disciplined. For example, taking away recess time or playground time for not sitting at the table appropriately during study time may not be the most effective way to deal with these issues. Your child may need that movement time, and by removing it, his or her behavior may actually become more difficult later.
Here are a few tips to help determine whether the child may have improved from a specific treatment:
- If your child improves after receiving several treatments, it will be impossible to determine which one(s) really made a difference. A general rule is to try a treatment for atleast three months before beginning to determine whether or not the treatment was helpful. However, in some cases we can see clear indications that the child is improving, even after a week or two. In some cases it might take a 6 month intervention program before seeing any visible progress.
- If at all possible, tell no one when a child starts a new treatment. This includes teachers, friends, neighbors, and relatives. If there is a noteworthy change in the child, it is likely that the people who come in contact with the child will say something about the improvement. It is also a good idea not to ask "Have you noticed any changes in my child?" In this way, any spontaneous statements regarding the child's improvement will be credible.
- People who do know that the child received a specific treatment can, independently, compile a list of what changes they have noticed in the child. After a month or two, you can compare their observations. If similar changes are observed by different people, then there is a reasonable chance that these changes are real. It is important they these observations be written down; otherwise, when appropriate behaviors replace inappropriate ones, you may not remember what the child's behavior was like before the treatment, especially if the behavior was an undesirable one.
- Parents and others should note in writing when the child's behavior 'surprises' them. Basically, parents usually know how their child will respond in various situations; and once in a while, their child may do something that is unexpected. If a child improves soon after an intervention is begun, one can assume that the child will act differently than before; and his/her behavior will likely lead to more 'surprises' than usual-hopefully good ones!
It is important to keep in mind that no single treatment will help everyone with autism. Although one child may have improved dramatically from a certain treatment, another child, even with similar characteristics, may not benefit from the same treatment. Careful observation along with a critical perspective will allow parents and others to decide whether or not a treatment is truly beneficial.
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