Psychoeducational Intervention for Parents of Children with Autism Spectrum Disorder

Table of Contents

CHAPTER – I Introduction
1.1 History
1.2 Classification of Autism
1.3 Characteristics of Autism Disorder
1.4 Incidence and Prevalence
1.5 Causes
1.6 Assessment Of Autism
1.7 Services For People With Autism:
1.8 Functions of Psychoeducational Intervention
1.9 The advantages of Training Parents as Co- Therapists:
1.10 Rationale for the Parent Training

CHAPTER-2 Review of Literature
2.1 Origin of pschoeducational intervention
2.2 The Need for Psychoeducation
2.3 Studies Related to Misconception Regarding the Concept of Autism Spectrum Disorders
2.4 Studies related to effectiveness of Psychoeducational Interventions
2.5 Review of literature - major findings
2.6 Need for the Present Study

Chapter – 3 Present Study
3.1 Aim of the Study
3.2 Objectives
3.3 Hypotheses
3.4 Operational Definitions
3.5 Methodology
3.6 Research Design
3.8 Data Collection and Procedure
3.9 Analysis of the Data
3.10 Ethical Issues

Chapter – 4 Results and Discussion
4.1 Effectiveness of Pre – Post Psychoeducational Intervention on measures of two tools
4.2 Effectiveness of Pre – Post Psychoeducational Intervention Programme on Using Autism Misconception Scale (Ams)
4.3 Effectiveness of Pre - Post Psychoeducational Intervention Programme on using Family Needs Schedule (FAMNS)
4.4 Effectiveness of Pre-Post Psychoeducational Intervention Different Areas of Needs on Measures of (Famns)

FAMNS

FAMNS

Chapter – 5 Summary and Conclusion
5.1 Aim of the Study
5.2 Hypotheses
5.3 Sample
5.4 Tools & Intervention
5.5 Significant Results of the Study
5.6 Limitations
5.7 Suggestions
5.7 Conclusion

REFERENCES

CHAPTER – I Introduction

Not until the middle of the century was there a name for a disorder that now appears to affect an estimated one of every five hundred children, a disorder that causes disruption in families and unfulfilled lives for many children. In 1943, Dr. Leo Kanner of the Johns Hopkins studied a group of 11 children and introduced the label early infantile autism into the English language. At the same time, a German scientist, Dr.Hans Asperger, described a milder form of the disorder that became known as Asperger Syndrome. These two disorders were listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM) as two of the five pervasive developmental disorders (PDD) more often referred today as Autism Spectrum Disorders – ASD (DSM-IV1994). The pervasive developmental disorders are characterized by varying degrees of impairment in communication skills, social interactions, and restricted, repetitive and stereotyped patterns of behaviuor.

The autism spectrum disorders can often be reliably detected by the age of 3 years, and in some cases as early as 18 months. Studies suggest that many children eventually may be accurately identified by the age of 1 year or even younger. The appearance of any of the warning signs of ASD is reason to have a child evaluated by a professional specializing in these disorders.

The pervasive developmental disorders or autism spectrum disorders range from a severe form called autistic disorder to a milder form Asperger syndrome. If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called Pervasive Developmental Disorder not Otherwise Specified (PDD-NOS). Other rare, very severe disorders that are included in the autism spectrum disorders are Rett’s syndrome and childhood disintegrative disorder. Most clinicians refer to all of these disorders as ‘autism’ or ‘autistic disorder.’

Autism ranges in severity from mild cases in which the autistic person can live independently to sever forms in which the patient requires social support and medical supervision throughout his/ her life.

1.1 History

In 1943, Leo Kanner, child psychiatrist in the USA, described 11 children who had in common a peculiar pattern of behavior. This pattern comprised many different features but Kanner thought the main ones to be as follows: a profound lack of emotional contact with other people; absence of speech or else peculiar; idiosyncratic ways of speaking that do not seem designed for conversation; fascination with objects and skills in manipulating them; an anxiously obsessive desire for preserving sameness in the environment and /or familiar routines; evidence for potentially good intelligence shown by facial appearance and feats of memory, or skill in performance tasks involving fitting and assembly tasks, such as inset and jig-saw puzzles. Kanner considered that these features defined a specific syndrome that was quite different from all other childhood conditions and decided to name it ‘early infantile autism’ (the term autism had, before this, been used to describe the social withdrawal found in adult schizophrenia, and this led to confusion of the two conditions).

In 1944, Dr. Hans Asperger, of Vienna, Austria, published another famous paper that first described a similar condition that later became known as Asperger Syndrome. These landmark papers featured the first theoretical attempts to explain these complex disorders. Despite the papers published by Kanner and Asperger in the 1940s, autism has long been a mystery to the medical community even today.

In the 1950s and 1960s, the medical community in genera believed autism was a psychological disturbance caused by detached or uncaring mothers. This belief, later completely disprove, was based on the observations and opinions of Dr. Bruno Bethlehem, one of the first child development specialists to focus on autism.

For decades, generations of mothers of children with autism were unfairly accused of causing their child's disorder. In the early 1960s, a few people in the medical community such as Dr. Bernard Rimland and Dr. Eric Schopler began to challenge Bethlehem’s opinion. In 1964, Dr. Rimland provided a definitive review of evidence that established autism as a biological condition thus demonstrating that Bethlehem’s theory was wrong.

Soon after autism was proven to be a biological condition, Dr. Andreas Rett first described Rett Syndrome as a specific condition in a paper published in 1966. In 1977, Dr. Susan Folstein and Dr. Michael Rutter published the first autism twin study, which revealed evidence of a genetic basis for autism. Over the next ten years, researchers conducted additional studies that further yielded evidence of a genetic component to autism as well as refined the symptoms of autism. In 1991, Drs. Catherine Lord, Michael Rutter and Ann LeCouteur published the Autism Diagnostic Interview. The International Classification of Diseases and related health problems ICD – 10 (1993), and Diagnostic and Statistical Manual for Mental Disorders, 4th Edition DSM - IV (1994). Later had references on autistic disorders.

In the early to mid 1990s, genetic researchers began to link autism to people with abnormalities on chromosome 15q. In 1998, researchers had reported evidence of a link between autism and chromosome 15q and chromosome 7q. By 2001, several researchers had completed genetic screens that have identified several genomic regions containing genes that could be associated with autism. There is other such findings firmly established the biological basis of autism.

1.2 Classification of Autism

1.2.1 DSM IV Classification

According to Diagnostic Statistical Manual for mental disorders (DSM – IV), the features of autism are listed as follows:

Children will display impairment in social interaction in at least two ways, impairment in communication in at least one way, and restricted, repetitive and stereotypical patterns of behaviour, interests and activities in at least one way.

According to DSM-IV, impairment in social interaction is manifested in at least two of the following ways:

a) Marked impairment in the use of multiple nonverbal behaviours 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 achievement with other people;
d) Lack of social or emotional reciprocity.

Impairment in communication is 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;
b) In individuals with adequate speech, marked impairment in the ability to initiate or sustain conversation with others;
c) Stereotyped and repetitive use of language or idiosyncratic language, and
d) Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level.

Restricted, repetitive and stereotyped patterns of behaviour, interests and activities are manifested by at least one of the following:

- Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus;
- Apparently inflexible adherence to specific, non-functional routines or rituals; stereotyped and repetitive motor mannerisms, such as hand or finger flapping, or complex whole body movements;
- Persistent preoccupation with parts of objects.

1.2.2 ICD-10 Classification

The draft of the ICD-10 definition of autism shows that it has also adopted the diagnostic term of Pervasive Developmental Disorders (PDD). In the ICD-10 system, PDDs include (a) childhood autism, (b) atypical autism, (c) Asperger syndrome, (d) Rett syndrome, (e) childhood disintegrative disorders, (f) overactive disorders associated with mental retardation and stereotyped movements, (g) other pervasive disorders, and (h) unspecified pervasive disorder. The ICD-10 definition of PDDs emphasizes that “childhood autism” is a distinct subgroup of PDDs. It is obvious that the conception of PDD s in ICD-10 is a “splitters” approach. This approach believes that there is taxonomic validity of each subtype of PDDs. It would allow the study of both internal and external validities of each subtype of PDDs. It also would allow focal presentation and discussion of a disorder.

The ICD-10 system defines childhood autism as “a type of pervasive developmental disorder that is defined by the presence of abnormal and/or impaired development that manifests before the age of three years; and by the characteristic type of abnormal functioning in all three areas of social interaction, communication, and restricted, repetitive behavior”. (ICD – 10, 1993)

1.3 Characteristics of Autism Disorder

A child identified with Autism will exhibit characteristics under A and B, and one or more characteristics under C through F:

A. Social Participation

The child displays difficulties, differences, or both interacting with people and events. The child may be unable to establish and maintain reciprocal relationships with people. The child may seek consistency in environmental events to the point of exhibiting rigidity in routines.

B. Communication

The child displays problems that extend beyond speech and language to other aspects of social communication, both receptively and expressively. The child’s verbal language may be absent or, if present, lacks the usual communicative form, which may involve deviance or delay, or both. The child may have a speech or language disorder or both, in addition to communication difficulties associated with Autism.

C. Developmental Rates and Sequences

The child exhibits delays, arrests, or regressions in motor, sensory, social, or learning skills. The child may exhibit gifted or advanced skills development, while other skills may develop at normal or extremely slow rates. The child may not follow developmental patterns in the acquisition of skills.

D. Cognition

The child exhibits abnormalities in the thinking process and in generalizing. The child exhibits strengths in concrete thinking while difficulties are demonstrated in abstract thinking, awareness, and judgment. Perseverant thinking and impaired ability to process symbolic information may be present.

E. Sensory Processing

The child exhibits unusual, inconsistent, repetitive, or unconventional responses to sounds, sights, smells, tastes, touch, or movement. There may be a visual or hearing impairment, or both, in addition to sensory processing difficulties associated with Autism.

F. Behavioral Repertoire

The child displays marked distress over changes, insistence on following routines, and a persistent preoccupation with or attachment to objects. The child’s capacity to use objects in an age appropriate or function manner may be absent, arrested or delayed. The child may have difficulty displaying a range of interests or imaginative activities, or both. The child may exhibit stereotyped body movements.

1.4 Incidence and Prevalence

Autistic spectrum disorders are currently recognized with prevalence of two per thousand population. It is observed that the number of persons with ASD is on the rise, and that they disorders are no longer rare. Increased emphasis on autism in every level of medical, psychology and special education programmes and increased public awareness have resulted in an increases in the number of case identified. Male female ratio amongst the persons with ASD is 4: 1,

www.gov.nip/vacsafe/concerns/autism/default.htm#prevelence.

1.5 Causes

The various theories about the causation of these disorders can be broadly classified as psychological theories and biological theories. However, it is important to acknowledge that both psychological and biological factors could interact.

1.5.1 Psychological theories

The psychological theories suggest that cognitive and communication impairments are responsible for the occurrence of autistic disorder. Baron-Cohen’s (1993) theory of mind is based on the idea that the child with autism fails to understand that other people have minds and mental states. Hence, they seem to have a difficulty in understanding other people beliefs, attitude and emotions; similarly, Hobson postulated that the primary impairment was an inability to engage emotionally with others. The child with autism does not receive the necessary social experiences to develop the cognitive structures for understanding other emotions (Hobson, 1995).

Tager - Flusberg (1993) holds that the impairment is one of failure to develop an understanding of the nature of language as communication. Children with autism do not develop an understanding that communication and language exist for the exchange of information.

1.5.2 Biological theories

There is increasing evidence that autism results from organically caused brain dysfunction. Studies have shown severe brain dysfunction, tuberous sclerosis, phenylketonuria and medical conditions known to cause central nervous system pathology in people with autism. It seems possible that multiple biological etiologies may cause the syndrome of autism acting through a final common pathway, which is yet unknown.

Research involving the study of twin pairs has demonstrated a genetic predisposition to autistic disorders: if one twin has autism, the likelihood of the other twin having autism is far higher for monozygotic (identical) twins than for dizygotic (non-identical) twins (Folstein and Rutter, 1977). Autism is far more common in boys than in girls (Lotter 1966; Lord and Schopler, 1987). Autism is fifty times more frequent in the siblings of people with autism (Smalley et al 1988). Environmental factors acting during the early stages of development (i.e. during pregnancy and early life) are also thought to play a role.

Post-mortem studies on people with autism have shown little evidence of gross pathology in their brains. Computer Assisted Tomography (CAT) and Magnetic Resonance Imaging (MRI) have shown abnormalities of the cerebral cortex, cerebellum and the ventricles in the brain. However, these abnormalities have not been consistent. Functional imaging techniques such as Positron Emission Tomography (PET) and Single Photon Emission Tomography (SPECT) have not demonstrated any consistent abnormality.

Abnormalities have also been described in the brain chemistry. Platelet serotonin has been shown to be elevated in 30% of people with autism. Other abnormalities include low levels of dopa hydroxylase, elevated plasma noradrenaline and urinary homovanillic acid levels. In addition to this, elevated opiod levels in the cerebrospinal fluid with reduced plasma endorphins and abnormalities in the hypothalamic-pituitary axis, which regulates the endocrine glands such as the thyroid are also observed. But a specific defect leading to the autistic syndrome remains to be found.

Autistic disorders therefore seem likely to be the result of brain dysfunction occurring at a particular stage in development as no adult with “acquired autism” has been convincingly described. Some people, especially males, seem to be predisposed to this dysfunction, which may be mediated by a number of different biological processes.

Even though the exact cause of autism is still a medical mystery, it is generally accepted that autism is caused by abnormalities in brain structure or function and has a genetic origin. Whatever the cause, children are born with autism. It is not caused by bad parenting, as was once believed.

1.6 Assessment Of Autism

There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual's communication, behavior, and developmental levels. However, because many of the behaviors associated with autism are shared by other disorders, various medical tests are conducted to rule out or identify other possible causes of the symptoms being exhibited (Baird et al 2000).

Several diagnostic tools have been developed over the past few years to help professionals make an accurate autism diagnosis:

1. CHAT - Checklist for Autism in Toddlers
2. M -CHAT- Modified Checklist for Autism in Toddlers
3. CARS - Childhood Autism Rating Scale
4. PIA - Parent Interviews for Autism
5. GARS - Gilliam Autism Rating Scale
6. SCQ - Social Community Questionnaire

A brief observation in a single setting cannot present a true picture of an individual's abilities and behaviors. At first glance, the person with autism may appear to have mental retardation, a behavior disorder, or even problems with hearing. However, it is important also to distinguish autism from other conditions, since an accurate diagnosis can provide the basis for building an appropriate and effective educational and treatment program.

A number of interventions have been promoted as providing breakthroughs in the treatment of autism. Those therapies are sensory – motor therapy, facilitated communication, auditory integration training, sensory integration therapy (Gardner, 2001; Jacobson, Mulick, & Schwartz, 1995) and several other forms of psychotherapy such as Psychoanalysis, Holding Therapy, and Options Therapy (Beratis, 1994; Bromfield, 2000).

1.7 Services For People With Autism:

Accounts from researchers, practitioners, parents and the autobiographical writings of adults with autism such as Jim Sinclair, Donna Williams, and Temple Grandin, demonstrate that people with autism do not fit easily into mainstream or so-called 'normalized' services. The recurring theme in these literature is the need for individual support systems, based on an understanding of the basic impairments associated with autism, and reflecting the individual's need for predictability.

1.7.1 Pharmacological Approaches

People with autism will receive drugs for common physical ailments such as infections, and will need information about beneficial and possible adverse effects, presented in a way that takes account of communicable and social difficulties. Prescribers will need to be aware of any physical disorder thought to be responsible for the autistic disorder (e.g. tuberous sclerosis) and of any co-existing disorder that may be exacerbated by drug treatment. People with autism are known to have variety of psychiatric disorders such as manic-depressive illness. There may also be high levels of arousal and anxiety. Antidepressants and lithium have been used successfully to manage cyclical mood disorders and propranolol to reduce arousal. It is important to remember that people with autism are likely to have idiosyncratic responses to medications of all kinds especially if they have an associated severe learning disability. Gillberg, C. (1996).

However, the efficacy of drugs in the treatment of behavioural abnormalities such as aggressive behaviours or severe self-injury is not well established. There have been several recent studies and reviews of the use of psychoactive medications in the field of autistic-spectrum disorders. Howlin et al., (1987) suggested that there is only limited evidence that drug treatments for autism are effective, and little evidence for any effect on the autistic disorder itself. Clarke (1996) cautions that further research is required before firm conclusions can be drawn regarding the effectiveness of drugs in the treatment of autistic spectrum disorders, although some recent research involving neuropeptide compounds and drugs affecting serotonergic systems shows some promise. The pharmacist Shattuck (1995) raised some general concerns on the use of medication to treat patterns of behaviour often associated with autistic spectrum disorders. He believes that there may be physiological abnormalities associated with autism that make the prediction of treatment effects difficult, and individual differences (example - related to underlying causative conditions), that result in variations in response. The appropriate dose of a particular compound may be difficult to determine for similar reasons.

On account of the limited efficacy of the pharmological approaches, treatment of autistic disorders was begun to focus on behavioual and educational approaches.

1.7.2 Behavioural approaches

Behaviour modification is based on careful observation and recording of behaviour (rather than subjective interpretation) and the application of psychological techniques to promote desired behaviours and extinguish behaviours causing problems for the person or others. Behavioural approaches are useful for teaching new skills and highlighting specific environmental factors, acting as triggers which may then be amenable to change. But changes in patterns of behaviour learned in one setting are rarely transferred to another situation (“generalization”). The implication is that any behavioural intervention should be in the individual’s normal environment. Rogers, (1998).

1.7.3 Educational approaches

During the 1950s and 1960s, autism was often treated by psychotherapeutic techniques, which were based on the premise that autism was an emotional disorder and parents were seen to be at fault in this process. The psychotherapeutic approach is still adhered to in a few countries, most notably in parts of southern Europe. Smith, (1996). However, Rutter and Bartak (1973) demonstrated that an educational approach, that is, by applying structured and consistent teaching within educational settings, was far more effective. Educational approaches focused upon helping the child or adult to understand and predict the world in which they live have gained considerable impetus in recent years, particularly in Northern and Western Europe, North America and Australia.

1.7.4 Psychoeducational approaches

Psyhoeducation is a specialized form of education aimed at helping to learn and creating awareness about the range of emotional and behavioural difficulties, their effects and strategies to deal with them.

Psychoeducation began as a family-focused intervention in the treatment of schizophrenia, emphasizing the biological basis of the disorder with the intent of reassuring family members that they are not the cause of the disorder while helping them to understand how patterns of interaction in the family may influence the course of the illness. Having demonstrated success in the treatment of schizophrenia, psychoeducational approaches were subsequently extended to the treatment of a wide range of others disorders, including depression, bipolar disorder, obsessive-compulsive disorder, chemical dependency, eating disorders, borderline personality disorder and trauma-related disorders. Since their inception as family-focused interventions in schizophrenia, psychoeducational approaches have been extended not only to a broader range of disorders, but also to a primary focus on educating the individual patient. (Kaufman & Kaufman 1979; Steinglass 1987).

1.8 Functions of Psychoeducational Intervention

According to Shaw –1973.

- Counseling
- Consultation
- Testing
- Provision of information through training
- In services training
- Evaluation

Providing psychoeducation to parents of children with autism is based on attachment theory, developed by John Bowlby, (Ainsworth & Mary D. S, (1991). This theory focuses on the development of close emotional bonds and beginning in caregiver-infant relationships. Bowlby emphasized that attachment relationships continue to be of paramount importance throughout life, because attachment relationships play a primary role in regulating emotional distress by providing comfort and a feeling of security. Consistent with attachment theory, extensive research demonstrates the importance of social support in healing from psychiatric disorders and in wellness.

Psychoeducational intervention works by improving the knowledge parents of persons with disabilities and providing a greater understanding of the importance and benefits or intervention that are counseling, provision of information through training. In the training part parental involvement is essential. Parent training, which attempts to resolve serious childhood behavior problems, shares some basic strategies with parents education. Peshawaria & Reddi et al., (1991). The latter approach tries to prevent the development of this dysfunctional behavior in the first place. It involves instructing parents, usually in large groups. Parent’s education has assumed the proportion and popularity of a national movement through such program as parent effectiveness training, active parenting and sequential tests of education progress. Both parents training and parent education approaches aim at assisting parents at help their children by providing them with practical information, by teaching them principles of learning and behavior modification, building parenting and communication skills, and the development of problems-solving skills.

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